Death Club for Cuties

Tuesday's Laugh at death

2010-04-13T21:56:00.000-07:00

Memorial Monday - Two Presidents

2010-04-12T18:59:00.000-07:00

Clarissa Harlowe Barton
Dec. 25, 1821 - April 12, 1912
Teacher, Nurse, Humanitarian
Founder and first president of the American Red Cross

at Find a Grave

- - -

Franklin Delano Roosevelt
Jan. 30, 1882 - Apr. 12, 1945
Thirty-second President of the United States

at Find a Grave
FDR Home, National Historical Site

Every Tuesday, let's try to laugh at/with death.

2010-03-30T12:57:00.001-07:00

Photo: Sylvain Gaboury/Film Magic
from New York magazine

Paul Rudnick is a funny guy. He writes regularly for the New Yorker magazine, often contributing to the weekly humor column, 'Shouts and Murmurs,' which is where I generally encounter his work. He's also written several plays and movie screenplays.

I just finished his latest book, I Shudder: And Other Reactions to Life, Death, and New Jersey. I really needed it. It's a quick read, but if you still don't have enough time, this snippet from page 242 provides a worthwhile taste:

Here's what I know about death and grieving: None of it makes any sense, although I will always cherish the words of a woman who spoke at a friend's memorial, and who began her affectionate remarks by saying, "God knows, Ed was cheap." Here's what I know about New Jersey: If you're a citizen, be proud of it. I know a guy from Piscataway who would tell people that he was from the more posh Princeton, which was forty-five minutes away. I always wanted to tell him, Darling, you're still from New Jersey. Who are you kidding?

And here's what I know about love: Don't let go.

Memorial Monday - Jerome "Jerry" Brudos

2010-03-29T13:42:00.001-07:00

Jan. 31, 1939 - Mar. 29, 2006

Known as 'The Shoe Fetish Killer.' A native of Webster, South Dakota, he was a former electrician, who became serial kiler, and later one of Oregon's most notorious inmates...Although he was convicted of 3 murders, he confessed to four, and was suspected of at least 6 others...Brudos died at the age of 67, at the Oregon State Prison, from colon cancer.

from Find a Grave

photo added by K

My selections for this somewhat-regular feature are pretty much made at random. I have no idea what I'm going to find whenever I start looking.

Most of the entries at Find a Grave feature people from the fields of politics, professional sports, the military, art, and literature, and while I respect them and their accomplishments, I'm more interested in learning about others who may not be well-known, or whose deaths prompt me to think about things that I may not otherwise have thought about.

I recently featured two women who were murdered, and today's anniversary for the death of a man who murdered many women reminds me of the first principle of the code for ethical practice by nurses, as articulated by the American Nurses Association:

The nurse, in all professional relationships, practices with compassion and respect for the inherent dignity, worth and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems.

I'm not saying it's easy, or perhaps even always possible, to accept that every human being has the right to skilled care whenever it's needed. But maybe once any of us starts to draw a line, where do we stop?

Memorial Monday (on Tuesday) - Barney B. Clark, D.D.S

2010-03-23T09:01:00.001-07:00

Jan. 21, 1921 - Mar. 23, 1983

He was the first fully artificial heart transplant recipient, having recieved (sic) it in Salt Lake City, Utah in 1982, and died 112 days post transplant.

From Find a Grave

Photo added by Ron Moody

From the biographical sketch included in the description of the Barney B. Clark papers held by the University of Utah Marriott Library Special Collections:

In June of 1954 (Clark) was informed by his physician that he had contracted a case of hepatitis. Unknown to him, this was to be the first in a long line of illnesses that would plague is (sic) life from time to time. Due to his smoking habit, he eventually contracted emphysema (May 1978); and then there was the idiopathic cardiomyopathy which deteriorated the muscle in his heart.

In 1980, Dr. Clark was referred to Dr. Jeffery Anderson for treatment. Dr. Anderson tried to manage his condition medically. The treatment included administration of digoxin, furosemide with potassium supplementation, warfarin, captopril, prednisone, azathioprine, and a trial of the investigational new inotropic drug amrinone.

Unfortunately, all of these drugs proved unsuccessful in preventing further cardiac decomposition.

Dr. Clark was first introduced to the artificial heart in 1982 when he went to visit the animal research barn, and he went home to Seattle to decide on the surgery with his family. But (his wife) Una Loy knew right from the start that he was going to do it. Although he did want to help advance the medical research, what he really wanted was a much better quality of life than he had been experiencing the last few years. He truly believed that this artificial heart would give that to him; and it probably would have, if he hadn't been suffering from so many other problems. He was admitted to the University of Utah Medical Center for the transplant at the end of November in 1982. He signed the consent form, required by the Institutional Review Board (twice), and then due to complications, he went into surgery earlier than expected.

Even though the operation was successful, they had a lot of problems at the start.

First, he developed an air leak in his lung that had to be corrected surgically. Then, he suffered from seizures of an undetermined nature. Next, there was also a broken valve on the left ventricle of the artificial heart that had to be repaired. And finally, due to the necessary anticoagulant, he suffered from terrible nose bleeds which also had to be fixed surgically.

Even though preparations were made for him to go home at the end of April, he never made it. He suffered from aspiration pneumonia in early March which sent him back into the ICU, and he never left it again.

On March 21st, Dr. Clark suffered from reduced renal function that induced a high fever. And on March 23rd, he suffered from multiple organ system failure that caused a circulatory collapse which killed him at 10:02 that night. It wasn't the artificial heart that killed him, it was everything else that was going wrong with him at that time.

Evidence-based opposition

2010-03-22T06:18:00.000-07:00

Yeah, OK - that was too easy. But it's been over a week, and I've got to post something.

I'm working on some stuff and will be back with it soon.

Thanks to Fightin' Digby.

For a contrast in both substance and thinking, see Scott Lemieux.

More fishin'

2010-03-11T08:27:00.001-08:00

This time with my bare hands...

Be back soon.

Memorial Monday - two women murdered

2010-03-08T08:04:00.001-08:00

Virginia Voskerichian
Sep. 14, 1956 - Mar. 8, 1977

She was murdered by serial killer David Berkowitz, also known as the "Son of Sam."

From Find a Grave
Photo added by Stan Buturla

- - -

Shirley Ann Bridgeford
1933 - Mar. 8, 1958

She was the second victim of notorious serial killer Harvey Glatman.

From Find a Grave
Photo added by Scott Groll

In plain sight

2010-03-06T09:03:00.000-08:00

He sorta looks like Paul Farmer...

My mother always said, "The best place to hide something is right under somebody's nose," though that sentiment didn't prevent her from stashing the ten-pack of Reese's Peanut Butter Cups under the dish towels in the top drawer to the left of the sink when she returned from each week's grocery shopping excursion.

Then again, maybe it proved her point.

Anywhoozle, I just made my monthly $100 donation to Partners in Health, and this time I made it in honor of the ever-observant Eric Widera of GeriPal fame. The dude won a contest, and this was his prize.

If you're confused and really want to figure this out, you'll just have to poke around on your own. (Hint: be sure to check the top drawer to the left of the sink, under the dish towels.)

Gone fishin'

2010-03-04T09:33:00.000-08:00

Interesting fishing, indeed

Actually, I've been busy with some other stuff recently, and thus have been unable to update this blog as much as I'd like. I'm also attending the Assembly tomorrow, and so it might be another couple of days before I can wrap up a couple of longer posts that I have in the hopper.

I considered learning how to Twitter in time for the Assembly, based on Christian's enthusiasm for the medium, but in the crush of recent activities (family stuff, job interviews, sunbathing, etc.) I've opted for something simpler.

So, I'll be there with little more than a spiral-bound notebook, several pens, a few copies of my resume, some Death Club for Cuties business cards, a Pallimed sticker kit, and my Flip. I'm not even bringing a laptop to download onto, and will instead focus on quality video.

I hope to feature the results here next week.

Hanx to Jan Nordgreen at Think Again! for the pic

Memorial Monday - Lucille Hegamin

2010-03-01T08:42:00.000-08:00

Nov. 29, 1894 - Mar. 1, 1970

Born Lucille Nelson, she was one of the earliest female blues singers ever to be recorded. Her career began while she was a teenager touring the south as part of a traveling tent show. In 1920, Lucille, who had moved to New York City, made her first recordings on the Victor Record label. She later appeared in numerous Broadway musicals including a production known as "Creole Follies." Like many of the "classic blues" singers, her career began to fade in the early 1930's. She left the music behind her in 1934 and became a registered nurse in New York City, a job she held until the late 1950s. She came out of retirement to record again in 1961...

from Find a Grave
photo added by Adam Maroney

Complete Recorded Works, Vol. 1 (1920-1922)

"It's a life panel..."

2010-02-25T09:34:00.000-08:00

More here.

Update: I also blogged about this general issue last August, here.

Memorial Monday - Christof Probst

2010-02-22T09:13:00.000-08:00

November 6, 1919 - February 22, 1943

Christoph Probst was one of the leaders of the "White Rose," an anti-Nazi resistance movement among German students in Munich. Along with friends Hans and Sophie Scholl and Alexander Schmorell (q.v.), Probst wrote and distributed leaflets condemning the Nazi regime and calling for sabotage against the war effort. After the Scholls were caught distributing the leaflets in public, they and Probst were interrogated by the Gestapo and tried by the notorious Nazi People's Court. Found guilty, they were executed on Feb. 22, 1943, in Munich's Stadelheim Prison.

from Find a Grave

photo added by M.Altinsoy

h/t Daniel Gilbert

It's actually pretty comforting

2010-02-21T08:11:00.000-08:00

Yup, this must be the place...

I was using Google Maps the other day to locate a residential hospice. The address on file included Street View, so I zoomed in for a closer look.

A bunch of theories

2010-02-20T11:50:00.000-08:00

The correct answer is "nine."

I’m very much looking forward to a couple of upcoming events – specifically the AAHPM/HPNA Annual Assembly in Boston, and my next online grad school course.

I’m only attending the Assembly on Friday, but it promises to be an active day with an early start, a late finish, and a chosen emphasis on the intersection of end of life care/nursing education with social networking technology.

With regard to my next online course, I’m not sure if I’ll be signing up to start in early April or early May. But it’ll be on theories and conceptual models. I like that kind of head work, and am completely up for it.

I’ve been attracted to several models and theories over the years, and have incorporated them into my evolving practice with varying degrees of success. The course will be an opportunity to explore them in greater depth, as well as a chance to learn about others.

The following theories and models resonate with me for different reasons, and they appear in no particular order:

Robert Altemeyer’s work on authoritarianism is a useful way to examine and understand the motivations and behaviors of people and groups. Altemeyer has identified the characteristics of people who need to be told what to do, and who approach life’s challenges in very stark, explicitly black/white terms. Rules are not just important for such people, who he describes as ‘authoritarian followers,’ they’re essential. Altemeyer also looks at those who exploit these followers, calling them ‘authoritarian leaders.’

Robert Hare’s work on psychopathy is as chilling as you might imagine. Psychopaths aren’t nice people, but unfortunately they’re out here in the real world, and they’re out here in surprisingly large numbers.

I’ll spend more time applying the work of both to the nursing profession. At best, I believe it’s important to understand the extremes, if only to better understand the milder pathological forms we encounter. That said, my professional path has most certainly crossed with colleagues whose actions and attitudes more closely fit Altemeyer’s and Hare’s prototypes.

A professor of nursing at a local undergraduate program has done work on the hostile workplace and bullying behavior in nurses. That’s another topic of great personal interest, and this professor’s publications have directed me to several theorists whose works form a good foundation for exploring the phenomenon. For starters, I’ve just ordered Behind the Mask, by Dana Crowley Jack a book that explores violence and aggression in women.

This focus also leads me to the broader field of feminist theory, and to Jo Ann Ashley, author of Hospitals, Paternalism, and the Role of the Nurse.

I think Richard Schwartz’s Internal Family Systems model is a useful framework for understanding our own psychodynamics. I think it also has value for approaching and developing relationships with colleagues and patients.

I recently stumbled upon the Tidal Model developed by Poppy Buchanan-Barker and Phillip Barker. Wow. I’ll be poking around with this one for quite some time.

Finally, in a post here last November I pointed to Human Relationships at the End of Life: An Ethical Ontology for Practice by David Wright, Susan Brajtman, and Vasiliki Bitzas. Their basic message is useful without further explanation, namely that we can be confident of having a sound ethical foundation for our decision making if we engage with patients on the basis of a compassionate relationship. But I welcome the chance to dig more deeply into this thought.

Not just about a fish

2010-02-12T09:03:00.000-08:00

John McPhee is one of my favorite writers. His latest piece in the New Yorker's February 8th issue has already been archived, so if you don't have a subscription you'll need to snag the copy at your local library.

Here, he writes about the pickerel, a fierce freshwater fish that I also used to catch at the small pond in Hudson, New Hampshire where my uncle had a camp. I didn't like eating fish much as a kid - except for hot, greasy chunks of deep fried battered haddock.

Catching fish was another story, and I'd go after all of them with enthusiasm.

Pickerel aren't very active in the summer, when we usually fished at night for horned pout. But we always caught pickerel on the tip-ups we set in holes dug through the ice.

McPhee weaves his recollections about fishing for pickerel with those of his father's death from a stroke. The elder McPhee was a physician, and the author writes of the family's first encounter at the hospital bedside:

I was startled by the candor of the doctor. He said the patient did not have many days to live, and he described cerebral events in language only the patient, among those present, was equipped to understand. But the patient did not understand: "He can't comprehend anything, his eyes follow nothing, he is finished," the doctor said, and we should prepare ourselves.

Wordlessly, I said to him, "You fucking bastard." My father may not have been comprehending, but my mother was right there before him, and his words, like everything else in those hours, were falling upon her and dripping away like rain. Nor did he stop. There was more of the same, until he finally excused himself to continue on his rounds.

About that paper...

2010-02-09T11:21:00.001-08:00

OK, so it came down to using either this image, or one featuring that unfunny cable-guy redneck comedian dude. Call me elitist.

Anywhoozle, with regards to the APA-formatted research paper that I've groused about a couple of times - I finally got the freakin' thing done.

It's about blogging. If you read it, you'll learn the origin of the term innertoobz, and be introduced to my unified theory of blogging.

Powerful stuff.

Someone's story - The man on the bench by the sea

2010-02-01T09:17:00.001-08:00

Seaside bench

from johngpson's photostream at flickr

The first continuing education program on palliative care that I ever attended was held at the Beth Israel Medical Center in Boston, in 2003. I don't remember how I heard about it, but it was a day-long program, and there was no cost for me to attend other than $20 or so to park my car. I even got lunch.

Most of the people there worked at BI, or at one of the other nearby hospitals. I think I was the only man, and one of the few there who didn't work in oncology. I was doing outpatient hemodialysis at the time, and it was that clinical experience that really sparked my interest in end of life care. I've always thought of hemodialysis as the ultimate form of palliative care - it doesn't cure end stage renal disease, it just addresses the consequences and the symptoms of that fatal illness.

I don't recall making very good connections with those colleagues at the time, but I don't know if it was due to my being a stranger among people who knew each other professionally more closely, or my own social awkwardness.

The following year, I signed up for the first Art and Science of Palliative Nursing course developed through the Harvard Medical School's Center for Palliative Care, which has been offered annually ever since. That was when I knew that I had found a group of like-minded colleagues, and when I knew I wanted to work and learn among them. I haven't looked back since.

There's just something about the character of nurses who've chosen this work that resonates with me. Maybe it's the level of maturity, or the shared acknowledgement and acceptance of our mortality. I've found that nurses in this field don't have the kind of need to prove themselves, or to outshine or even put down their colleagues, in ways that nurses in other settings can sometimes display and sadly act upon. It's like everybody working in end of life has finally figured out what's really important. I don't know.

But there you have it.

One of the things I like about this work is the role narrative plays in end of life care. Everyone who works in it seems to not only have a huge collection of stories, but also the eagerness to share them, and the ability to recount them so compellingly.

Here's a story told to me by a nurse who manages a residential hospice and home hospice service in an oceanside community:

The nurse had come to speak about bereavement to a church group, and while there several people told her that one of their members had recently lost his wife. They said that he had become very withdrawn, and had resisted all of their attempts to reach out to him. He spent many hours of every day simply sitting on a bench across from the church, looking out at the sea. She saw that he was sitting there even as they spoke. They asked the nurse if she could go over and talk with him.

She didn't think that was a very good idea, and instead soon placed a call to one of her agency's social workers. She described the situation to her colleague, and gave her the location.

The following day, the social worker happened to be walking her dog in that area. The man was sitting on the bench. The social worker stopped for a minute, sat on the bench to re-tie her shoes, and resumed her walk.

Since she needed to walk her dog at the same time every day, she continued to use the route that brought her by the bench. Each day the man was there. Sometimes she stopped, and sometimes she didn't. Sometimes she sat for a moment, at other times not. She always looked towards the man, and when their eyes met she silently acknowledged him. A week or two passed.

Finally, one day she sat at the other end of the bench, looked over to the man, and said hello. "It's a beautiful view from here, isn't it?" she asked him. "Yes, I like it," the man replied.

"I often see you here when I'm walking my dog," the social worker continued. The man said nothing, and they both sat silently for several minutes before she got up and continued her walk.

This continued for several more days, with the man and the social worker simply exchanging nods or brief greetings when they met.

One day while sitting together in this way, the man reached over and patted the dog. He then began to talk about his wife, and how they would often walk together along the ocean-edge path. He told the social worker that be missed his wife very much.

It's not my story, but I know it's true.

Spot the subtle change and win a prize

2010-01-29T08:19:00.000-08:00

You might have to look hard, but it's right here in the blog.

What's the prize?

I will honor the winner(s) in March when I make my monthly donation to Partners in Health. There's a spot in the online form to designate one or more names when the donation is in honor of somebody.

That somebody could be you! ;^)

Hanx to Christian at Pallimed for the whole contest/prize idea...

For J, her family, and her dad

2010-01-28T07:16:00.000-08:00

Yesterday, I attended the funeral held for J's dad. J is of one of my dearest colleagues.

She's the physician's assistant who manages the day to day ICU care of neurosurgical patients, along with a nurse practitioner and first year resident. She's bright, capable, confident, and very caring. I include her among the clinicians who influence the way I think about my practice, who guide it, and who I most like to work with.

That's the way it is, isn't it? We look back on years spent in school, or anywhere, and count the best teachers we've had or friends we've known on the fingers of a single hand.

One of the ways that J and I work together is to extubate patients. In our unit, unless the patient is at very high risk for needing reintubation, or has a prior history of difficult intubation, the actual process of extubating them is pretty straightforward. It's done by a nurse and a respiratory therapist, and is over in a matter of seconds. Of course, those few seconds are the anticlimax to lots of careful assessment and preparation, which is where J comes in. The senior resident on the team, or maybe an attending, may note on rounds, "Let's try to get this person extubated." But the team quickly moves on to their next patient, so exploring that possibility, and making it happen when it's the right thing to do, is one of the ways J and I work together.

I've developed a mantra: "Breathe, or die."

It's not a threat, or a sign that either of us takes anything we do lightly. Far from it.

It's a simple statement of fact, and it keeps us keenly aware of the seriousness of it all. The mantra is a way to be sure that what we're going to do is something that should be done.

J's dad died suddenly and unexpectedly. It was an accident. He had two daughters, a wife, and several sisters. His brother died before him, as did his father and uncle who started the manufacturing business that he ran.

I read his online obituary, and looked at his picture there. J's father stands relaxed in a vested tuxedo. Perhaps the photo was taken at her wedding.

I've accepted the fact that I'm older than many of my colleagues, and that I'm even older than some of my colleagues' parents. Now I'm older than at least one colleague's deceased parent.

The funeral was held at a small catholic church tucked away in a pocket of rural New Hampshire. The place was filled. I was pleased to hear the priest who gave the eulogy. He spoke well, and he spoke well of J's dad. He knew him.

At the end of the service, a pianist and a singer in the choir loft began the tune, 'How Great Thou Art.' The musical arrangement was a simple one, and at first the singer's voice was soft, even a bit hoarse and almost bluesy. He slowly gained force with each line, and by the end he was firm, clear, and direct. It was moving. It fit the time and place. It fit our reason for being there.

Then, just a few short seconds after the last notes of the hymn faded from the piano, a man standing just outside the door began a dirge on his bagpipe, and continued playing as we all filed past.

I didn't go on to the cemetery, and returned home along the same quiet back roads I had taken earlier. I thought about the music I had just heard, and about the power music can have at a time like this.

I love listening to opera, though I often don't know the specifics of a particular story when I first hear it. What really grabs me is the sound of the singing, and its emotion. I've been told that, in Italy, opera goers are as passionately involved during a performance as the most rabid Red Sox fans at Fenway Park.

I was lucky to be in the stands for Clay Bucholtz's no-hitter. I understand how someone sitting up in a music hall balcony can be brought loudly to their feet upon hearing a performer really nail it.

There's an episode of 'Six Feet Under' that features a famous aria from Pucini's last opera, 'Turandot,' as part of a man's memorial service. It's a quieter than usual performance of the well-known piece, 'Nessun Dorma.'

The priest who spoke at the funeral talked about the catholic faith in everlasting life, though he presented it as a certainty, as something that catholics know to be a fact.

I have to admit that I'm not nearly as sure about all of that.

I'm going to send a note to J in one of my daughter's cards. I don't know when I'll next see and work with her, or even if. I think I'm also going to include a CD that my son's band recorded. He's the drummer, and he calls their sound a mix of rock, funk, raggae, and rap. They write most of their own stuff, including a tune called 'Life Goes On.' Maybe it will fit a time and mood for J at some point.

For now, here's a 1980 performance of 'Nessun Dorma' by Luciano Pavarotti, with Zubin Mehta conducting the New York Philharmonic. I'm told that this clip shows Pavarotti in his absolute prime. I found another by him here, in a 2006 performance that's listed as his last one ever. He died the following year. I also enjoy watching this version by Roy Cornelius Smith, which has the added benefit of featuring the song in the context of the staged opera.

Maybe the priest is right, and everlasting life is a lead pipe cinch. If that's the case, I hope it unfolds like Pavarotti's singing.

Nessun dorma! Nessun dorma!
Tu pure, o, Principessa,
nella tua fredda stanza,
guardi le stelle
che tremano d'amore
e di speranza.
Ma il mio mistero è chiuso in me,
il nome mio nessun saprà!
No, no, sulla tua bocca lo dirò
quando la luce splenderà!
Ed il mio bacio scioglierà il silenzio
che ti fa mia!
(Il nome suo nessun saprà!...
e noi dovrem, ahime, morir!)
Dilegua, o notte!
Tramontate, stelle!
Tramontate, stelle!
All'alba vincerò!
vincerò, vincerò!

Nobody shall sleep!...
Nobody shall sleep!
Even you, o Princess,
in your cold room,
watch the stars,
that tremble with love and with hope.
But my secret is hidden within me,
my name no one shall know...
No!...No!...
On your mouth I will tell it when the light shines.
And my kiss will dissolve the silence that makes you mine!...
(No one will know his name and we must, alas, die.)
Vanish, o night!
Set, stars! Set, stars!
At dawn, I will win! I will win! I will win!

Quick tech update

2010-01-23T10:01:00.001-08:00

I've just completed a complicated and mysterious task, namely: I've snagged the domain name deathclubforcuties.com, and have set a stealth pointer from it to my blogspot address.

So, from now on anybody can access this blog without having to enter the slightly more awkward text - deathclubforcuties.blogspot.com.

Try it - deathclubforcuties.com

Wow. Amazing. Be sure to tell your friends.

Since that's now taken care of, perhaps I can turn my attention to developing some actual content consistent with my goal of exploring end of life care issues for nurses, laypeople, and other health professionals.

Makes sense to me

2010-01-22T09:12:00.000-08:00

This post has little to do with end of life, but much to do with blogging.

One of the sources I'm drawing on in developing my paper, tentatively titled "Bloggers Blogging Blogs: An examination of what it is, what it means, and why I think it's pretty freaking cool," is Scott Rosenberg's most excellent book, Say Everything: How Blogging Began, What It's Becoming, and Why It Matters

(Yes, I've added this link as a new Amazon Associate. Buy the book, and baby gets a new pair of shoes.)

Rosenberg's work is both rigorous and readable, just like the best blogs. Here's a small piece (pp 87-88) I want to share:

(Jesse James) Garrett describes the transition as one from a static to a dynamic form. "At first, if you were doing any kind of personal website, I think people approached it as a hobby like woodworking: you were going to craft this beautiful little object...When you crossed the threshold to (blogs), that represents our realization that this is a dynamic medium. It's not about pushing an object into the world, it's about opening a channel between yourself and the world."

On second thought, maybe there is something about end of life in there.

Carrying on

2010-01-20T13:21:00.000-08:00

I've really had my hands full these last couple of weeks.

Among other things, I'm slogging through the last remaining assignment for the online course I started in September, and which I've blogged about here. I jumped over this particular assignment, a formal research paper using the APA format, and completed the final project. But now I've got to get the paper done. I first got an administrative extension, but that expired on Saturday. Now I'm working with a new deadline of February 8th.

I can do it. I know I can do it.

The paper's actually been kind of fun. My subject is blogging, and there's some really good material on the topic to draw on. I've just never done such formal writing before. We'll see how it goes.

Meanwhile, I've been keeping up a combination of emails and visits with Amy's family. Her death has been very much on my mind, in many ways.

I've lately been thinking about the stark contrast between the unfulfilled promise of Amy's youth on the one hand, and the certain grace with which her two siblings, Phil and Evelyn, not so much older, rose to face the reality of her death. So, too, did Kaitlin, the girlfriend of Amy's brother.

Adults are supposed to stand strong at a time like this. It's what we expect, even from the parents of a child who's died. But to see such young adults, and by that I mean adults who are still young themselves, and who've had no previous opportunities to prepare, carry themselves with dignity...well, let's just say it gives me hope.

I recently wrote to Kaitlin:

...when I said that I was moved and proud to see Phil and Ev, I also meant you, and how you stood with them. As someone who's sort of standing on the threshold of being an old fart (and I emphasize the qualifier "sort of"), it's comforting to see the next generation moving into place.

I feel that way about my own two kids.

I'm also reminded of my mother in law's funeral, just over 5 years ago. She was in her 80's, and had lived a very active life right up until her final week. She died at home, surrounded by her children and grandchildren, which is about as good as it gets.

When Jeanne (my wife) and her siblings were working out the details of their mother's funeral, the question of pallbearers arose. I suggested her grandchildren, and the siblings promptly agreed.

We had gotten into the limo, and were waiting outside the funeral home to get underway to the church. Eight of my mother in law's grandchildren between the ages of 18 and 28, six of them young women, two of whom were pregnant, stepped out with her casket, then loaded it into the hearse.

These were the same grandchildren whose young faces appeared in endless holiday photos and pictures of poolside parties going back to the late 1970's. And now here they were.

My sister in law, Mary, the mother of 3 of the pallbearers just said, "Well, look at them." We all knew exactly what she meant.

Just look at you.

The kindness of others

2010-01-17T16:09:00.000-08:00

Kindness is a hard concept to pin down. The word's innocuous, like the word 'nice.'

One the one hand, everybody knows what both words mean. We hear them every day, we're admonished and encouraged to act towards others in these ways, to do things that are nice or kind, and we each try so hard so often to do just that.

But I think it's precisely because the words are used so often, and so readily, that they've lost their meaning. We don't really know what somebody's saying when they say that something we do is 'nice,' or observed that we've been 'kind.'

Well, speaking for myself, I'll say that I don't always know what somebody's saying when they tell me that a thing I've done or made or said is nice or kind.

I've had that experience - once, at the end of a laundry list of alleged transgressions, it was observed that something I did was 'nice.' It sounded like an insincere acknowledgment, a back-handed compliment with the emphasis on back-handed.

I also had another recent experience, two of them, actually, and both came as affirmations of what kindness and thoughtfulness and being nice can really mean. They were each delivered directly to my door by a uniformed employee of the federal government, which is also a nice thing. Who doesn't look forward to the mailman?

The first was from an old acquaintance who still publishes a highly-regarded paper newsletter about food. John Thorne is the equivalent of an online or blogging buddy from the days when the world wide web had been conceived, but not adopted or even known by anybody who wasn't a diehard geek or computer researcher at CERN. I was struggling back then with my own publication 'Tips From the Pit,' so-called because I was determined to make my name as the foremost authority on all things barbecue, and after I first reached out to John he never stopped commenting, encouraging, advising, and cheering me on, in pretty much the same way that those thousands of people line the route of the Boston Marathon each April, holding out paper cups of Gatorade for the runners to snatch along the way, yelling at them "You can do it! You can do it!"

I reconnected with John last month when I ordered a copy of his latest book directly through his web site, as a gift for my son's girlfriend. Among the many other benefits of eliminating the middleman, I got an inscribed and autographed copy, which made for an impressive gift. I followed his package to me by sending him and Matt one of my daughter's holiday cards. John, in turn, sent me a copy of his very fine limited edition essay on milk toast, including the inscription, "When the world is too much with you."

The second came from a nice young man named Shin, who lives in Korea and is pursuing my daughter with what I believe are the best intentions. They met online, each helping the other learn their respective languages, and at some point not too long ago Shin decided to fly halfway around the world for a face to face visit. He joined us for dinner one night. I barbecued a chicken.

Shin's 'thank you' package arrived at the same time as John's hand-crafted pamphlet, and included a fine note for Jeanne and me, along with two bookmarks. I got the one with a picture of a woodpecker, and Jeanne selected the one illustrating an old Korean folk tale that involves beautiful young girls on a swing by the river, and timid monks watching from behind the bushes.

I'm also grateful for the comments and emails from the small, but big-hearted, audience that keeps an eye on this blog.

All of these gifts aren't just kind of nice. They're true kindnesses, and they're very welcomed.

That which doesn't kill me makes me stronger

2010-01-13T09:16:00.000-08:00

I never really paid much attention to that apocryphal phrase, or when I did I quickly dismissed it as some kind of slogan that's not only of no personal interest, but which I associate with a kind of appalling hyper-macho sentiment.

I feel differently right now. The saying makes sense, and is directly applicable to where I find myself at this particular moment. It's even a source of comfort.

As the old year's faded and the new one's blossomed, I've faced three distinct and serious challenges. They've collectively forced me to confront death, the meaning of family, and my professional identity. The three challenges are different and distinct, but they've also reinforced and played off each other in my mind.

I've been writing here about the death. I mostly knew Amy when she was a shy but sparkle-eyed pre-schooler and kindergartener with the kind of captivating smile that only a child of that age can genuinely display. She was the youngest, smallest, and quietest of the five children I drove each day to school, two of whom were her older siblings, and the other two of whom were my own son and daughter.

Amy had grown up considerably when I last saw her, when Jeanne and I enjoyed a late summer dinner with her parents. She was tall and beautiful, with an outgoing presence and unmistakable sense of confidence. She was looking forward to her transfer from the nursing program at St Louis University after her sophomore year, to the program at Boston College, and Jeanne was making arrangements to provide her with some of the required texts.

Now, she's gone, and the whole nursing profession has lost a promising colleague who would have made such a tremendous difference in countless peoples' lives.

I haven't spoken of my family, but it's a pretty simple matter: I have an older brother who's been relentlessly abusive my entire life. The reasons are his, as is the sickness they stem from. His daughter, who was born within five days of my son, and whose early birthdays we celebrated with joint parties, is getting married at the end of this month. My three other siblings and their spouses are going to the wedding, but Jeanne and I did not even receive the engagement announcement last summer. We only learned about it while visiting my oldest brother, when we saw the photo card lying on his coffee table.

It pains me to be so coldly excluded from a rare family celebration, but the actions of my brother and sister-in-law are even more despicable. They've drawn our respective children into the emotional cesspool of his unresolved anger and their shared petty grievances.

I wonder what their conversation with my niece was like, as they drew up the guest list? I wonder what her brother, my nephew, is thinking, knowing that his "coolest," though infrequently-seen, uncle won't be there? And since there are few secrets in the age of Facebook, I've had to answer my own kids' questions, "Hey, Natalie's engaged. What's up with the wedding?"

I tracked down the lucky bridegroom - one of my sisters read his name to me over the phone from her copy of the invitation, though she never commented on why I didn't have my own. I located his parents and spoke with his mother, who assured me that she'd forward my gift as soon as she received it. I checked the online bank balance today, and learned that Natalie and Louis have cashed our gift.

One small victory, and a sign that good faith can still prevail.

Peace out.

A year begun

2010-01-07T11:32:00.000-08:00

I had resolved, sort of, to start posting here more frequently this year.

We're already one week into it for this first post, only my fifth since last month's magnum opus.

Work has been very busy, with much to do and even more to reflect upont.

And holiday time profoundly intereferes with most matters not directly associated with trees, turkeys, and generally, though not exclusively, crappy music.

Mostly, though, my thoughts and feelings have been for our friends Jeff and Melissa, and their two grown children, Phil and Evelyn, with the sudden death of their daughter and sister, Amy.

While talking with Melisaa recently, I noted that Amy's death had challenged me with feelings that I hadn't anticipated, and that I generally don't encounter with patients and families around end of life.

I guess one reason is that right now I don't have the benefit of my professional armor, the role and boundary that protect me while enabling me to be most helpful to others. The pain of Amy's family is too stark, and we're too close as longtime neighbors and friends. I've become, or made myself, a part of this story, with a role I don't normally fill.

It's a role that I accept, even treasure. It's always a priviledge to be part of a death, and I don't have to further explain that sentiment to readers and colleagues who've chosen this work.

After drawing upon James Joyce's The Dead in my most recent post, I turned to John Huston's extraordinary film adaptation.

The story weaves together many important themes, among them loss and remembrance. Huston faithfully turns Joyce's carefully crafted words into thoughtful action. Among the many key scenes is one in which Gabriel watches as his wife, Gretta, is drawn into her own memories and grief.

Here's how Joyce introduces the scene:

Gabriel had not gone to the door with the others. He was in a dark part of the hall gazing up the staircase. A woman was standing near the top of the first flight, in the shadow also. He could not see her face but he could see the terracotta and salmonpink panels of her skirt which the shadow made appear black and white. It was his wife. She was leaning on the banisters, listening to something. Gabriel was surprised at her stillness and strained his ear to listen also.

Here's how Huston conveys it:

I think what Gabriel demonstrates, perhaps contrary to Joyce's intent, is the importance of bearing witness. I can identify with him here as I consider Amy's death.

Neither of us can know the pain experienced by the ones we stand with. It isn't ours to have, or heal, or even comment on.

But I think we can bear witness to that pain, and thereby do something very important, even essential.

If you'll be the lass of Aughrim
As I am taking you mean to be
Tell me the first token
That passed between you and me

O don't you remember
That night on yon lean hill
When we both met together
Which I am sorry now to tell

The rain falls on my heavy locks
And the dew it wets my skin;
My babe lies cold within my arms;
But none will let me in

A year ended

2009-12-31T11:57:00.000-08:00

Amelia Frances Weiksnar Caruso

January 20, 1989 - December 26, 2009

We just got back from Amy's funeral and burial. Her service was held at the new catholic church in the small town where she grew up, and where our family once lived. There are several large simple windows behind the altar, not ornate drapes or panels - all the better to see the bare branches of nearby trees, and the stark white sky beyond.

Halfway through the service, snow began to fall, and several hours later it continues still. I watched the snow while priests read from their books, and later, standing in the cemetery, I listened to the flakes lightly fall upon the fabric of an umbrella. It reminded me of the closing lines in The Dead, that timeless, beautiful, and most unsettling short story by James Joyce:

His soul had approached that region where dwell the vast hosts of the dead. He was conscious of, but could not apprehend, their wayward and flickering existence. His own identity was fading out into a grey impalpable world: the solid world itself which these dead had one time reared and lived in was dissolving and dwindling.

A few light taps upon the pane made him turn to the window. It had begun to snow again. He watched sleepily the flakes, silver and dark, falling obliquely against the lamplight. The time had come for him to set out on his journey westward. Yes, the newspapers were right: snow was general all over Ireland. It was falling on every part of the dark central plain, on the treeless hills, falling softly upon the Bog of Allen and, farther westward, softly falling into the dark mutinous Shannon waves. It was falling, too, upon every part of the lonely churchyard on the hill where Michael Furey lay buried. It lay thickly drifted on the crooked crosses and headstones, on the spears of the little gate, on the barren thorns. His soul swooned slowly as he heard the snow falling faintly through the universe and faintly falling, like the descent of their last end, upon all the living and the dead.

Closer Grief

2009-12-29T10:50:00.001-08:00

I encounter dying and death in the clinical setting pretty much every day, either in the specific context of my own patient assignments or in association with one or more of my colleagues.

But as the year draws to a close I'm thinking about three deaths of a more personal nature, one of which will be observed tomorrow with a visit to the funeral parlor and a burial on Thursday.

A brilliant fifth-year neurosurgical resident in our program was killed last June in a climbing accident on the West Rib of Denali, in Alaska. I've been carrying a longer and more well thought-out tribute in my head, and hope to get it onto these pages at some point, but for now I'll simply say that John was a remarkable person, and a trusted colleague.

My Aunt Theresa also died this past summer. She was the fourth-oldest of my mother's siblings, and the fourth to die. Aunt Theresa was developmentally disabled, but lived at the home she grew up in right to the end. She had a severe stroke, and went into hospice care for a brief period before she died. I'm not close to my family since my mother died, and didn't attend Aunt Theresa's funeral.

And now I've learned that Amy, the 20-year old daughter of longtime neighbors and friends, died suddenly just after Christmas day.

Amy was the youngest of 3 siblings, and I used to drive them, along with my own two kids, to school. We always had fun on those trips, like yelling "Kennedy! Yaaay!" and "Romney - boooooooo!" whenever we saw one or the other's campaign signs during the 1994 U.S. senate race. Amy was studying nursing in college.

This is what I wrote in the card our family sent yesterday -

dearest friends -

we cannot imagine the scope of your grief, the depth of your loss, your pain, your wondering.

we cannot find words or thoughts to convey, no ways to touch or hold, that could relieve or comfort you.

still, we will do whatever we can. we will stand with you and be witness. and we will remember amy.

jeanne, jerry, paul, and ahna

Blogging about blogging about blogging

2009-12-21T08:39:00.001-08:00

Jonathan Shaw's Infinity Door

Among other things, this blog has been (is?) the final project in a course I'm taking at Ol' Saint Joe's, home of the Fightin' Weasels (Go, Weasels!). You can read more here.

If I'm correct, that makes this post at this blog a post about this blog in a post at another blog.

A lesson from the Glimmer Twins

2009-12-19T11:53:00.001-08:00

I probably played this album louder, and more often, than any other during my formative years as a teen and young adult.

If pressed, I'd still put a couple of the songs on a list of my all-time top-whatever favorite tunes - most notably the piece that closes out the album, "You Can't Always Get What You Want."

Or, as a very young Jessica once told me while I was babysitting, "You can't get what you always want."

There may be some deep meaning behind the title, or the lyrics, to ponder in the context of end of life care.

And the thought of drawing my last breaths as the tune blasts from a set of twelve-foot high speakers has a certain appeal - though I always pictured myself entering the gates of heaven to Frank Zappa's "Peaches en Regalia" (specifically the version featured on "Live at the Fillmore").

In any event, I got this email yesterday...

From: Kilburn, Lisa
Sent: Thursday, December 17, 2009 4:28 PM
To: Soucy, Gerard
Subject: Education Exchange-Final Selection Notification
December 17, 2009

Dear Mr. Soucy,

Thank you and your co-author(s) for your submission to the inaugural 2010 AAHPM/HPNA Interactive Educational Exchange. We had a tremendous response to this first offering with 52 submissions and the selection committee enjoyed reading the diverse abstracts.

We wish we could accept all of the outstanding abstracts that were submitted. Unfortunately, your abstract was not among the 5 final selections.

However, please note that we anticipate including all submitted abstracts in the session handout which will be posted online. This is to further promote the intended interaction and sharing beyond the session itself…

…Additionally, we hope you will express your support to AAHPM/HPNA for the Educational Exchange format, so you may have a similar opportunity to submit/resubmit and share your work next year.

Thank you again for your submission. We appreciate your dedication to education and to palliative care and hope we will see you at the Educational Exchange session in Boston on March 5, 2010, 3:15-4:15pm.

Please consider joining with your colleagues to explore innovations in palliative care education. See the AAHPM website for registration information.

Sincerely,

Laura J. Morrison, MD
Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C
Pamela N. Fordham, DSN, FAANP
Elise C. Carey, MD

Ever gracious in the face of adversity, I replied:

Hi, All:

Thanks for your note. I'm disappointed, but also glad for having had the chance to submit my abstract, and for its inclusion in the session handout.

I look forward to attending the Assembly and the Educational Exchange next spring.

Jerry

So I guess if you try some time, well, you just might find, you get what you need.

Palliative Care Grand Rounds 1.11

2009-12-01T16:51:00.000-08:00

Hello? Is this thing on? Yes? OK.

Can you hear me there, way in the back? Yes? No? Is this better? Good. OK.

All right, let’s get started.

This is December’s issue of Palliative Care Grand Rounds (PCGR), and I’m very grateful for this chance to host you all.

I’ll be honest, I’m kinda nervous up here. It’s not easy picking out posts to highlight, because there’s lots of good stuff to choose from, and every time I started looking I ended up with more and more stuff.

And of course every good post brought me to the people who made comments, and to their blogs, where I saw more good stuff, etccetera, etcetera, etcetera.

That’s a happy problem – too much good stuff.

I didn’t want to end up with lots and lots and lots of links, even though they’re out there. And I don’t have the time to highlight what I like about everything I’ve found, since I think that they all deserve some context.

So, I had to think hard about what exactly I wanted to share with you, and about what I thought you’d enjoy or appreciate. I hope I did this right.

I decided to make this edition of PCGR kind of personal. OK, very personal. That is, I wanted to touch on some of the things that have meant a lot to me in the course of launching this blog, some of the things that have helped me get to this point.

And I also wanted to point out some things that, maybe, some of you might not otherwise become aware of, for whatever reasons

Does that make sense? I hope so.

- - - - -

Anywhoozle, I need to say ‘Thanks’ to Christian Sinclair at Pallimed for offering me this opportunity to host. That’s the most useful link to Pallimed that I can provide you with, too, because there’s something worth reading at Pallimed every time I go there. To Pallimed, I mean. I’m talking about when I go to Pallimed. It’s a must read. Pallimed, that is. Every day, pretty much, because they publish very actively.

The same is true for Alex and Eric at GeriPal. It’s a terrific blog with frequent, fresh, and vigorous stuff that’s always worth reading. Always.

In fact, I hereby designate GeriPal and Pallimed as The Usual Suspects. It’s now official.

To all future hosts – whenever it’s time to put together your edition of PCGR, first round up The Usual Suspects. Do the easy work first. Then, look around for other good stuff.

Having said all of that, I really liked Alex’s On teaching EKG's and family meetings, along with Drew’s take on a Canadian study of Acceptance and Well-Being.

- - - - -

Risa at Risa’s Pieces earned a special place in my heart for being my first commenter EVER, and for her well-timed words of encouragement.

So, even if someone else has already highlighted her moving September post and YouTube link on the Yom Kippur prayer known as Kol Nidre (if they did, I didn’t see it), it’s still worth revisiting as the Western calendar year draws to a close:

Kol Nidre is an odd prayer, sung not in Hebrew, but in Aramaic (the common-people language that Jesus is thought to have spoken) asking for release from all vows and oaths that we have not kept, and may not keep in the coming year…I think it is a lovely way to remind ourselves that we are human and do not, cannot, always keep the promises we make. As the day is spent in repentance for acts of commission and omission, the failure to do all that we hoped to do is certainly a source of regret and sadness… I will go to shul tomorrow to hear Kol Nidre chanted as it has been done for centuries, bringing past into present, absolving me for being human, imperfect, less than my promises suggest.

Risa’s most recent post carries news she says is bad or good, depending on how I choose to view it.

- - - - -

Sometimes when reading/writing about palliative care and end of life, I’m reminded of an old joke:

Q – What should we learn from the animals’ point of view regarding a bacon and egg breakfast?
A – We should note the chicken has an interest, but the pig is committed.

The writer, educator, and blogger who goes by the name exmearden opens her recent essay, Jabba and me, thusly:

I had a wonderful and very sweet nurse during this fourth round of chemo ask me if I felt I'd changed or learned anything in the recent months due to my fourth stage cancer diagnosis, or had any kind of epiphany about anything. I understood his question and can guess at why he asked me. I talk about this stuff, and death, and life, and the things that have changed in my day-to-day world due to undergoing chemotherapy quite readily and openly. It's easy to talk to me about this. It's no secret.

But epiphanies?

I said no, then, but I meant yes.

I hung out with exmearden in front of our conference hotel last year, she with her cigarettes, me with my cigar. You can read her other fine essays here.

- - - - -

I’ve been a member of the DailyKos community for over 5 years. It’s taught me a lot about good blogging, and has pretty much been my main source of news and information since I first started.

There are times when I link to something I’ve read there as a way to back up a point when commenting at another blog, a practice that inevitably results in someone else dismissing my views because they’re associated with ‘that biased leftwing site’ or some other such foolishness.

As Eric Cartman might say, “Screw them, they obviously don’t know what they’re talking about.”

Not only am I consistently more well-informed than most of the people I talk with who get their news and information from newspapers and cable TV (I’m not bragging, that’s just what I’ve found), my participation in the DailyKos community has led me to join a few thousand like-minded others at an awesome annual conference and gathering.

And I’m gonna find some folks to join me in developing a workshop/panel discussion on end of life care for the next gathering at Las Vegas in 2010.

- - - - -

So, here are a few other examples showing just how the DailyKos community thinks and talks about the health, palliative, and end of life care issues that are the focus of our own professional lives.

The Grieving Room at DailyKos is where members of the community regularly meet for talking, sharing, and mutual support.

This diary on the recent 60 Minute piece is notable for the length and breadth of the discussion it generated.

One of my go-to sources for healthcare-related information is a physician who blogs as DemFromCT. I always make a point of checking out his regular Healthcare Tuesday/Friday posts, as well as his versions of “Your Abbreviated Pundit Round-up” and any time he analyzes polling data.

DallasDoc is another physician blogger who always gets my attention with his astute observations.

DailyKos is also home to NYCEve and slinkerwink, two of the most informed, passionate, and committed health care muckrakers (in the best sense of the word) and activists I’ve ever seen.

This diary posted in observance of the annual Transgender day of remembrance was a personal eye-opener. I would be poorly informed and unaware, if not for the large and diverse community at DailyKos.

I thoroughly trust Joan McCarter, the prolific DailyKos feature blogger and editor, on matters regarding health policy and the legislative process. mcjoan was part of a personally-memorable online interaction. She’s also a cool-headed analyst who pays careful attention to detail while keeping her eye on the big picture.

I particularly appreciated her plain talk regarding 2,226 Uninsured Vets Died in 2008:

The bill (Oklahoma republican Senator and physician Tom) Coburn is blocking, the Caregiver and Veterans Services Act, only goes part of the way toward helping, but it's critical help for those who need it most, focusing "on caregivers of veterans injured in the Iraq and Afghanistan wars. It would provide caregivers with health care, counseling, support and a stipend. The legislation would also expand services in rural areas and ensure that veterans who are catastrophically disabled or who need emergency care in the community are not charged for those services."

Of course, comprehensive healthcare reform would also help, and it's also being held up by the Republicans and those ConservaDems who had no problem at all sending all these now-disabled veterans off to fight, and telling the rest of us that if we didn't support the war and wanted to end funding for it, we "didn't support the troops." So their "fiscal concerns" when it comes to the measely $3 billion in this bill rings pretty fucking hollow now.

Finally, while I’ve met many true friends through DailyKos, the person I consider most truly my friend is Ilona. She’s one of the busiest people I know – not busy in the sense of frenetic, but rather in the sense of purposeful. Her blog, PTSD Combat, is the single most authoratative source of its kind.

I hereby declare Ilona an Honorary Nurse, for life.

- - - - -

Also on the subject of wounded soldiers – I forget how I stumbled across Marty Tousley’s blog, and particularly her post with resources/references regarding caregiver fatigue. That’s unusual, because I usually take meticulous notes ;^)

In any event, Marty’s Grief Healing blog deserves wide readership.

- - - - -

Speaking of wide readership, the November 2nd issue of the New Yorker featured a short humor piece by Ian Frazier that contained one of the best paragraphs I’ve ever read regarding a death:

And what (by the way) of…that plucky woman who died of plaid? People of my acquaintance in the medical profession assure me that, unlikely as it sounds, one can indeed die of a toxicity caused by both type and number of plaids, their juxtaposition on the skin, and other factors. What is quite a bit murkier is the exact sequence of events, because the body was found to have a broken neck, doubtless the result of the fall. Apparently, she had been shot repeatedly at close range as well. Whether the plaid reaction, of which there was abundant evidence, occurred before or after the neck was broken and the bullets fired cannot be determined by the available technologies. All may be as the report first stated, with plaid as the innocent cause.

- - - - -

Speaking of grief, Leigh at Confessions of a Young (looking) Social Worker recently wrote about a woman who painted a mural as a way to protest and take action:

"It's a wonderful therapy and relief to get to paint…this has been a wonderful dialog with the public. I mean, people often come over here. They look at the mural. They want to talk about it and they often share their health stories."

- - - - -

Last week I received an email from Joanne Kenen asking about this month’s PCGR. Joanne’s a senior writer for the Health Policy Program at the New America Foundation. She also edits the Foundation's recently redesigned blog, New Health Dialogue.

In the course of our exchange, she pointed to the recent piece, A Good Beginning for Better Endings, calling it “probably the best end of life/palliative care related post we’ve had in the past month.”

The Foundation’s positioned itself as a channel for “promising new voices and ideas…(to) help shape the future of vital public policies.”

I’m all for it. Now if the Foundation would just get rid of comment moderation for its blogs…

- - - - -

I was pleased a few months ago to get a comment from the blogger who calls himself The Wounded Healer. He hasn’t posted in a while, probably because he’s deep into his studies, but his paper on End of Life Issues in the ED shows a welcome interest in tempering his understandable interest in the action of a hyper-acute care setting with an appreciation for the finality we all face. I hope he breaks free enough to start writing again.

- - - - -

I was recently engaged in a favorite pastime – using Google’s image search to find pictures (this time for an undergraduate nursing class on cognition that I presented).

That’s how I found The Sterile Eye, the marvelous blog of Øystein Horgmo, a Norwegian medical photographer. Here’s a good introduction to Øystein, Breaking the Ice:

Most patients are more or less nervous before a procedure. They often don’t understand exactly what is being done and who of the busy white-dressed people is doing what. I think they often feel like they’re on an assembly line, and they want something human to grab onto. But it’s often hard to reach through the professionalism. I’ve found my tattoos is (sic) something to grab onto for people. They’re icebreaker tattoos!

We’ve exchanged emails and blogroll listings. Now, can someone please clue me in to the correct way to pronounce his name?

- - - - -

I also had the chance to exchange comments and email with Gail Rae, writing at The Mom & Me Journals dot net. The exchange started when she developed a post in response to one of mine, which was a huge ego boost in its own right.

Gail mentioned:

I noticed that you'll be hosting the next edition of PCGR. I participated in the first four, then dropped off the radar after my mother's death, for awhile. I'm back in the saddle, though…it occurred to me that the following recent post of mine might fit into the edition you'll be hosting in December. I'm hoping you'll consider it.

Can I get back to you on that, Gail? ;^)

- - - - -

Barbara at Compassion and Choices Blog asks, Who decides if a dying patient can ask their doctor to help them to a humane and peaceful death? She writes, "The next great human liberty battle is to establish the right of every American to exercise…the intimate, personal end-of-life choices that seem to make so many people uncomfortable.”

In life and blogging, as in comedy, it seems that timing is everything.

I had no sooner read the piece at Compassion and Choices, though again I have no recollection of how I stumbled across it, when I stumbled again, this time on A Harder, Better Death by Peter Fish.

I can tell you how I found Fish’s moving piece: I was waiting at the drug store. Or, more accurately, I had gone to the CVS/Caremark pharmacy benefits management site to refill some prescriptions. It was a welcome surprise.

Serious illness is a journey to a foreign country. You don't speak the language, the inhabitants are strangers, you cannot know how you will behave until you arrive. St. Thomas Aquinas condemned suicide because it violates God's authority over life. I believed that. As one of my favorite writers, Flannery O'Connor -- herself the victim of a slow death at a young age -- wrote, "Sickness before death is a very appropriate thing and I think those who don't have it miss one of God's mercies." I believed that, too. Now I believe that there is suffering that is ennobling but also suffering that strips the humanity from a person, that is so unendurable you would be wise not to predict your reaction to it until you confront it.

- - - - -

Someday, I hope to write a paper or develop a presentation that explores the protrayal of death in contemporary film or (quality) television. The HBO series, Deadwood, would be a logical part of such an exploration, and in particular the story arc of one of the shows first season characters, Reverend Smith.

The Reverend is a rare man in that setting - kind, warm, and innocent. We watch as he’s overtaken by a brain pathology, probably a tumor, though the specifics are not as important as the overall story.

The two other principle characters in this clip are Al Swearengen, the saloon keeper and overall main fixer/operator of the mining camp; and Doc Cochran, whose heartfelt prayer references the horrors he witnessed as a surgeon ten years earlier, in the Civil War.

- - - - -

OK, so let’s close with a little lighthearted fun.

Ms Glaze’s Pommes d’Amour is one hell of a cooking blog. That she’s smart, witty, an awesome cook, an also-awesome writer, and drop-dead gorgeous is just frosting on the cake, as the saying goes.

I also want to give Madd Props to my longtime buddy, Randy and his former-magazine now-blog, Roadside. Randy and I met through the pages of Yankee magazine, though not in the Personals section, back in the early 1990’s, and have been alternately supporting and annoying each other ever since.

And, last but not least – help a starving artist move out of the house, and buy some holiday cards from my daughter.

- - - - -

That closes out this edition of Palliative Care Grand Rounds. Best wishes to all for a great holiday season and a prosperous, peace-filled new year.

I think Warren Zevon said it best – “Enjoy every sandwich.”

12/4/09 Update: Thanks for all of your traffic, and for the comments and support that make blogging worthwhile. I also want to highlight a post and links by Angela that appeared in mid-November about Baxter, the key player in a hospice pet therapy program. While you're there, please be sure to read Angela's timely piece on coping with grief during the holidays:

"Whether someone you love has recently died, passed away long ago, or is nearing death now, the sorrow and loss you feel is magnified by Holiday perceptions of joy and togetherness. Perhaps one of the greatest gifts you can give yourself this Holiday season is to allow yourself to grieve. "

Thanks

2009-11-26T09:22:00.000-08:00

This was the eulogy I delivered at my mother's funeral almost nine years ago.

In all of the 21 years that I knew him, my dad only told three jokes. And right now, I can only remember two. One was a corny story about a great Indian chief who had died, and had the punch line, "No, squaw bury Shortcake." The other was about a guy in a bar, a spittoon, and a fifty-cent bet.

Three jokes told over and over again, always as if for the first time. I'd roll my eyes a little, but I never objected or interrupted. I actually still tell the two that I remember.

My mom also had a favorite saying, "History is just a great big circle, and the same things keep happening over and over again." My reply was always just as reliable, "Yeah, ma, and history isn't the only thing that repeats itself."

I'm struck by the little sayings and gestures that I associate with my parents when I was a kid. These rituals were a big part of the bond between us, perhaps especially since we were seldom very demonstrative of our affection. It wasn't that we didn't care - it's just maybe that we were more comfortable this way, using gestures and symbols instead of being more direct.

I can recall many images of how we played out connections, and at least one of them will probably seem a little weird to you. We were a household of smokers - pretty typical through the 50's, 60's, and into the 70's, though you'd be hard-pressed to find seven smokers here in a group like this these days, let alone seven smokers among five siblings and two parents.

I'm the youngest, so I was the last to officially light up as a teenager. But, aside from plenty of second hand smoke, I got my earliest nicotine rushes when I'd pick up my mom's discarded chewing gum from a clean ashtray and pop it in my mouth.

It's not as gross as it sounds - I mean, what's cleaner than mother's spit? And it wasn't like I was picking it up off the floor.

I haven't smoked in over 20 years, but I can still taste that gum - a kind of hard and bumpy little ball, that softened up quickly. The most notable part to this little ritual was the stale, bitter taste embedded in that gum. So there you have it - my mom and I were linked, in part, by the texture of used Wrigley's spearmint, infused with the smoky flavor of old Pall Mall.

Smoking cigarettes and chewing gum are about the only vices my mother had that I can think of, unless you want to count bingo. She did have a temper if I pushed her far enough, and I tried to sometimes, but that's really just being human - for both of us.

For all of my experience, mom was pretty low-key and understated. Mom was understated, but certainly not unfeeling. She was private. She was quiet. She was humble.

I remember when one of my brother Don's college friends joined us for Sunday dinner. Mom did up her usual - roast pork with 'patate sal' and pan roasted carrots, fresh rolls, that sort of thing. She brought it to the table, and we all dug in and helped ourselves and started eating. But Don's friend just sat there, with the food on his plate in front of him. At first I thought that maybe he was going to say a prayer or something, but he probably thought that he was taking her seat. He was actually waiting for mom to sit down at the table to join us.

We had to tell him - mom didn't do that. She always waited until we were finished before she'd sit down to eat her own meal. She said that she preferred that to getting up from the table every time we needed something. Heaven forbid that we'd actually get up and get it ourselves.

But that's how it was, and she never made a big deal about it. Of course, the food was always really good. Cooking was another one of her gifts, and with her characteristic understatement, she passed off her formidable skills as just something she had to learn out of Fanny Farmer after she got married.

Here's another image - my son, Paul, and I were visiting mom at her apartment. Paul was at that shy stage of being a toddler - when coming right at him and saying something loud and assertive like "come give me a kiss!" would have sent him running in the other direction. He hung back, clinging to my leg.

Mom got up from her chair at the dining table, and went into the kitchen. She came back with a handful of fresh blueberries, and sat down again, then held her open hand on her lap, and just waited. She didn't say a word. Paul inched forward and snatched a blueberry. He took a few steps back and ate it, keeping his eyes on her. He reached for another one, but only took one step back to eat it. The next time, he stayed where he was, and he ate blueberries from my mother's hand until they were gone.

You know, mom always said, "Bring me flowers while I'm alive to enjoy them." Well, mom, I guess this won't be the first time that I don't do exactly as you asked.

December 8, 2000

My First ELNEC Presentation (lengthy post)

2009-11-13T09:27:00.000-08:00

The subject was ethics, and the occasion was a three-session/nine-module ELNEC course run by two colleagues at my hospital. The course was open to nurses working in all areas. Thirty signed up, and ten attended all three four-hour sessions.

The attendees represented several different intensive and intermediate specialty care areas - thoracic surgery, hematology/oncology, transplant surgery, neurosciences, cardiology, and peri-operative. One of the two course coordinators is a nurse-educator for the medical cardiology intermediate care unit. The other is a staff nurse in the medical intensive care unit. This was the second ELNEC course they have presented.

I joined my two colleagues for the introduction in the first session, and my unit on ethics was the first part of the last session a week ago, which also included the units for grief/bereavement and final hours.

I haven't gotten any formal feedback from the attendees or my two colleagues yet. Our plan to get together afterwards was disrupted, but I expect we'll talk soon. They hope to offer the course each year, and I hope to join them.

Anywhoozle, here's my best attempt to reproduce my comments and material, including some of the comments and questions that the participants raised, which I've placed in parentheses.

Each image in this post was presented as a PowerPoint slide. I really dislike the way PowerPoint is generally used - but that's a topic for discussion at some other time. If I may just say two words here - Edward Tufte.

I used blanks with a pale blue background as placeholders between each image slide, so that the participants weren't staring at a slide any longer than I needed to make my point. I also embedded the YouTube videos within PowerPoint.

I'm presenting this material next week to a lecture class of first semester nursing students.

Whaddya think? Please lemme know. Thanks.

- - -

Good afternoon.

I call this class, "Ethics – Talking About Many People’s Lifetime of Work in Just 45 minutes!"

I want to start by pointing out that I have to balance our shared opportunity for useful and wide-ranging discussion with my need to maintain some small sense of order and control for the next hour or so. While I encourage each of you to share your thoughts and experiences as we make our way through this material, I ask that you not be too offended if I stop or re-direct you in the middle of a story.

Now, I’d also like your help with an exercise as we get under way – what words or expressions come to mind, what associations do you make, when I say the term, “medical ethics?” Please just go ahead and free associate. What comes to mind?

(The participants joined in with a number of terms and associations, including - confusing, controversial, human rights, morality, love, and dignity. I jotted them on a white board as they spoke, but regret that I didn't also write them on paper for later reference.)

OK, good. We’ll refer to these as we cover the information that I’ve selected to share with you today. This is a helpful guide.

As I was preparing for this discussion, I tried to come up with some pithy title slide to use as an introduction. I did a Google image search using the term 'ethics,' but really didn't find anything useful. Then I remembered this painting, which I picked up as a postcard years ago while visiting the Solomon Guggenheim Museum in New York:

Roy Lichtenstein, Nurse, 1964

Oil and Magna on canvas - 48 x 48 inches

Private Collection

I think it works well to illustrate the idea of 'ethics in nursing.' I mean, she's obviously a nurse, and she's clearly upset or disturbed or concerned about something - why not an ethical dilemma?

I'm also old enough that my women colleagues wore these caps, even though I didn't.

I already had the postcard and could have scanned it, but I knew it would be a lot easier to just grab a copy online. So I did another Google image search, this time using the terms 'nurse + lichtenstein,' since that's the title of the work and the name of the artist.

I found the image I wanted, but I also came across something unexpected that seemed to fit our topic here. So, I snagged that image, too.

I guess you just never know what you're gonna stumble across when you go poking around on the innertoobz, in this case a woman named Lichtenstein who recently tried to pass herself off as a nurse. Not a very ethical action, and apparently not a legal one, either.

I also came across a West Coast band from the 1960's that called itself, "The Ethics." Here's the A-side of a 45 they recorded:

And here's the B-side:

By the way, I'm not only old enough to remember 45's, I used to buy them.

OK, that was my introduction. Those were my title slides.

Let's get back to these associations you all made with the term, 'medical ethics.' It's a pretty rich mix, and there are a lot of thoughts and issues associated with them. I have a very brief – one minute, actually – film clip that will probably answer every question you’ve ever had about ethics and morality.

So, just to reiterate if you didn’t get the chance to write that all down:

“Mr. Kant claims that a true deontological ethics is based on a universal maxim that must never consider specificities of circumstance, character, or likely outcome.”

Great. That's it. This is all any of us needs to know about ethics. This answers every question you have. We can go home early.

Seriously – and really, I was just kidding when I introduced that clip – I think it’s essential that we establish some reasonable objectives about what we can accomplish here today.

Obviously, we don’t have a lot of time to spend on a subject that quite a few people have indeed dedicated their substantial professional lives to exploring.

Secondly, I’m not a scholar of philosophy or ethics, so what I thought would be helpful to share with you isn’t all that there is to know. Not by a long shot.

But I do frequently encounter ethical dilemnas in my clinical practice – I encounter them daily, if not hourly – and so I think it’s OK for us to at least take a stab at getting started.

As I was preparing this material, my first thought was “What do these colleagues already know”

I think that each of us does indeed have some set of internatized values that guide us in these matters; and that we can at least roughly articulate them. We each already know something, or we have well-formulated questions, as indicated by associations you made a few moments ago.

The question of “What do they already know?” was quickly followed by, “What do they want to know?” I suppose that, for some, a class titled, “Ethics” may be snooze inducing, or could be associated with the expressions like “waste of time” or “too deep for me” or “gibberish.”

But I suspect that everybody here has some degree of interest, or even fascination, with the topic – again, because ethics and morality touches so much of what we do in our professional lives.

Let’s take a moment just to get on the same page with some of our terms. While many people use the words “ethics” and “morals” or “morality” interchangeably, they’re related, but they’re not the same thing.

Ethics is the framework for understanding and explaining moral behavior. That’s a helpful distinction to make, if for no other reason than it will make our language more clear.

Ethics is the framework for understanding and explaining moral behavior.

Here’s an analogy to help see that this is not just a matter of semantics – ethics is like a recipe, while moral behavior is like a finished dish. Now, analogies can only go so far, but I think this one is helpful.

Think of a recipe, and of all that goes into it. There are ingredients and quantities and sequences and techniques which, if followed, can be reasonably thought to lead to a predictable result. A recipe can be a useful guide.

Some people depend on recipes. Maybe they need a recipe just for the first time that they try to cook a particular dish. Or maybe they follow a recipe exactly every time, because that’s how they cook.

Other people are more confident, or experienced, or daring, and they only look at recipe to get the general idea of a dish. They “know” how to cook, and maybe they can’t even explain in any great detail just how they cooked what they cooked, or what exactly went into it, or in what quantities.

Of course, anybody who completely disregards a recipe, or some other set of instructions, including the underlying principles of that recipe or instruction, risks making something that’s completely inedible – of even life-threatening.

So, when I said that I think that each of us already has some set of internalized values, some sense of ethics, that we already “know” something, it was like saying that everybody here already knows how to cook to some degree.

And even if you can honestly say that you don’t know how to cook, you most certainly can say that you know what you like to eat. That is, you have some sense of what constitutes sound moral behavior, even if you don’t know the first thing about Kant’s categorical imperitive.

And I’m pretty comfortable in saying that everybody here wants to know more – that you all would like to pick up a few recipes, if only to start spinning off some variations of your own.

The final question that I asked myself is really unanswerable – “What do people need to know and understand about ethics, to help them in the clinical setting later today, or tomorrow, or next week?”

Hopefully, we’ll begin to meet that last objective today.

Let’s look at a couple of examples at how ethics can be applied in the nursing profession.

First, there’s the idea of ethics as an admonition to “do the right thing.” That’s readily seen in the formal code for ethical begavior in nursing – the ANA Code of Ethics. Here's a screen snap from their website - I've added the address:

That’s how a lot of people see ethics, particularly in the context of health professionals – as a Code, or a series of rules for proper professional behavior. And that’s a perfectly fine and acceptable recipe.

Take a look at the first provision. There's got to be a reason why it's first, right? What does it say, exactly?

Well, to use plain language, according to the ANA code, we're obligated to care for anybody with any health need, no matter what.

And to get a feel for what that really means, let's each just take a minute to consider those things that make us most uneasy and uncomfortable about people, and about illness.

There's a lot of discussion in the media, for example, about illegal immigration, and about the rights, or lack of rights, that some say the people who enter this country illegally have, or don't have.

There's a state prison in my town, as well as a community hospital. And even though there's an infirmary in the prison, sometimes an inmate needs inpatient care. Now, the inmates in this particular prison are only there temporarily to be classified and ultimately placed in an appropriate facility elsewhere in the state. They include men who've been convicted of manslaughter, rape, and murder.

And what does the ANA code tell us? It says that we're ethically bound to provide care to anybody who needs it, no matter what, and no matter how uncomfortable we might be with our patients. The code makes clear that we can't ethically say, "No, I won't care for that person."

That's important to understand. Keep it in mind, because we all bump up against that ethical dilemma at some point.

This concept of ethics as a set of rules also touches on the notion of ethics as a set of shared values within a group or community, and it’s even possible to begin to see how ethics relates to law. Perhaps laws are more formalized, in the sense of being written and of setting out the consequences for people who violate them. And though this unit is described in the curriculum as ‘Ethics and Law,’ we really don’t have nearly enough time, and I don’t really have the expertise, to dig into that topic.

For our purposes, I think it’s enough to acknowledge a relationship, and to acknowledge that there’s a lot more to talk about – with the right people, and at the right time.

And not to get ahead of myself here, but later in this discussion I do plan to point you to some resources that can help you begin to flesh out in greater detail the terms and concepts and applications that I’m introducing here.

But to get back to some definitions or understanding of the basic term, ‘ethics,’ let’s think about ethics another way:

OK, trivia time: What did E.T. say to Elliot in this scene?

(here the participants offered comments that included, "I'll be back," "I love you," and "Don't be afraid.")

What E.T. actually said to Elliot was, “Be good.”

I think we can all relate to that. We’ve all had a parent or teacher or other adult urging us to be good and to do good. That’s probably how all of us were introduced to ethics, even if we didn’t know the term.

One popular application of ethics as an admonition to ‘be good’ can be found in The Golden Rule. Are you familiar with it?

There’s the story, probably apocryphal, of some biblical scholar being asked to provide some insight into what the bible was all about. After thinking for a moment he replied, “Do not do unto others that which you would not have done unto you. The rest is simply commentary.”

In other words, the many hundreds of pages and thousands of years of history associated with the bible, the countless hopes and dreams and faith and belief that literally, billions of people have placed in it as the most definitive guide on how to live – the whole thing, according to this nameless scholar from some unknown time, can be boiled down to a simple, but very powerful phrase: “Do not do unto others that which you would not have done unto you.”

I find it interesting that this version of the Golden Rule emphasizes a negative – do not do unto others – instead of the positive form ‘do unto others.’

I’ve thought about this at times, and I think I’ve come across something that helps to explain it, or that helps me to understand it. If you would indulge me for a moment, I want to share with you a very brief piece by the late Irish author Maeve Brennan, who among other things wrote for the New Yorker magazine’s Talk of the Town section from 1954 to 1981 as ‘The Long-Winded Lady.’

Maeve Brennan looks like a very compassionate person in this photo, doesn't she? She looks like a nurse.

This piece is from the September 18, 1954 issue of that magazine, and it appears in a collection of her work, also called The Long-Winded Lady. The piece is titled, “Painful Choice,” and it’s one of my favorite things to read. It’s a single paragraph. Maeve Brennan was one hell of a writer, if you ask me.

“I was in a new small supermarket the other evening, waiting to have my things put in a bag, when I saw a shabby tall man with red eyes, who had obviously been drinking since the cradle, tryingt to decide between a can of beans, a canned whole dinner, a canned soup, and a canned chicken a la king. He had thirty-seven cents or twenty-nine cents or some sum like that, and he was standing there with the four cans, glaring down at them and all around at the stalls of vegetables and fruit and bread and so on. He couldn’t make up his mind what to buy to feed himself with, and it was plain that what he really wanted wasn’t food at all. I was thinking I wouldn’t blame him a bit if he just put the cans back on their shelves, or dropped them on the floor, and dashed into the bar-and-grill next door, where he could simply ask for a beer and drink it. Later on it occurred to me that, putting it roughly, there is usually only one thing we yearn to do that’s bad for us, while if we try to make the effort to do a virtuous or good thing, the choice is so great and wide that we’re really worn out before we can settle on what to do. I mean to say that the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy, and I feel sorry for that poor tall red-eyed man.”

I think it’s worth repeating - the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy.

So, maybe that’s the biblical scholar’s point – that we should, above all, avoid doing harm because we have a tendency to do so without even thinking.

OK, so we’ve touched on ethics as rules guiding our profesional behavior, and as an admonition to either do good, or to not do bad. What else?

Well, let’s just return for a moment to the notion of ethics as the framework for moral behavior – ethics as a recipe, or set of recipes, or the method by which recipes are developed.

I was introduced to this notion of ethics at a conference I attended earlier this year, specifically that ethics is a formal and structured way to approach problems - ethical dilemmas - and arrive at a solution or decision, analogous to the scientific method. And, just to refresh our memories, here's a useful definition of the scientific method from the ever-reliable online resource, Wikipedia:

Scientific method refers to a body of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry must be based on gathering observable, empirical and measurable evidence subject to specific principles of reasoning. A scientific method consists of the collection of data through observation and experimentation, and the formulation and testing of hypotheses

Powerful stuff.

Most importantly, this is the definition of ethics, the way to understand what ethics is all about, that I want to impress upon you here. Take this and run with it.

Here's the conference on ethics that I attended. It was truly professional life-changing, and if any of you are interested in exploring ethics in greater detail, this is the place:

You can see that next year's conference date has already been set. Get on their mailing list.

Anyway, it was during a presentation at this course that I was introduced to the concept of ethics as a method for developing a path to moral behavior, or to arriving at a specific decision under specific circumstances, or to a solution to a problem – a moral dilemna - that could stand up to the question, “Is this really the right thing to do?”

And that’s what we’re so often faced with. We encounter problems, ethical dilemnas, either with patients, or with their families, or with nursing colleagues or other members of the team - we want to know what's the right thing to do?

These problems trouble us greatly, they unsettle us in ways that we sometimes can’t even articulate, except maybe to say something like, “This really bothers me.” Or “I’m not comfortable with this.”

And that’s probably the best clue that we’re dealing with a matter of ethics, and of moral behavior – we get very uncomfortable, and sometimes confused.

Well, since we work in a hospital, we know that often times the best thing to do in such a situation is request a consult, to get some new eyes and ears on the problem. And the same is true here. How many of you know that BWH has a consult service for just these situations?

I particulalrly want to point this out: "In 1996 the hospital staffed its first dedicated clinical ethics service, providing ethics consultation services 24 hours a day, 7 days a week upon request by any hospital clinician, patient or patient family member."

Now, just as I was only kidding when I showed the quick video about Kant, then said that we were done, I’m not going to just point you to a website and say that the only thing you need to know about ethics is that you can request a consult.

Don’t get me wrong – an ethics consult can be enormously helpful, even essential. In fact, (the head of the consult service) rounds on (my clinical unit) every week as a way to help us with cases early on. I’ve had the chance to work with her, and it’s made a huge difference.

(Here one participant described how a prominent surgeon in her unit publicly berated her for requesting an ethics consult in a difficult case, and said that she had exceeded her authority. It lead to a discussion best summarized as: a) some people are always going to be jerks, so we have to pick our battles and work with who we can work with; b) an ethics consult would still be appropriate to address the concerns and needs of nursing staff, separate from those of the rest of the team or the patient; c) the nurse had acted appropriately in requesting the consult, and the surgeon was wrong and unprofessional).

When I say that it’s helpful to view ethics as a method for solving problems, and for identifying decisions and solutions that are moral, I’m really talking about a way of thinking, and more importantly of engaging in an open dialogue that’s based in good faith. That means that everybody participating in the dialogue has to be honest, even to the point of admitting biases, such as “That’s against my religion,” or “I have a really hard time with people who x,y,z.”

If and when you do request an ethics consult, you’re going to find that much of the time is spent asking questions, and that the answers to some questions determine what other questions get asked and explored.

It’s helpful to have an understanding of some terms and concepts in order to participate in an ethics consults more thoroughly, and as a way to start framing and articulating ethical issues in our own minds.

At the risk of going down the wrong path of ‘relativism,’ I’m going to say here that many times, there’s no simple black/white, right/wrong answer to an ethical dilemna – there’s no one single point toward which everybody must strive. There can be any number of endpoints in a discussion involving ethics, each of which depends upon some set of values or circumstances or beliefs or conditions.

Now, ‘moral relativism’ is another matter, and that’s not what I’m talking about here. Moral relativism, as best as I understand it, is really a way to rationalize a decision or behavior – to make an excuse or explain why it’s perfectly fine to “Do as I say, not as I do.”

I guess a more clear way to say what I’m trying to say is this – if you can explain your thinking, your thought process as to how you arrived at a particular decision, and if your position is defensible and can stand up to objective scrutiny, then you’re on better ethical grounds that if you can’t.

Does that make sense?

Because that’s the discipline of ethics, and of thinking ethically. It’s not enough to say, “I decided to do it this way because that’s how I’ve always done it,” or “That’s what I was taught, it’s all I know.”

Now, again, if this is still all a bit ephemeral to you, please hang in, because I do have a specific frame of reference, a specific set of very useful guidelines that you can begin to implement into your own practice, that I want to share with you in just a few minutes.

But first what I really want to make clear is that, if you really want to understand ethics, I think it’s essential that you first understand that it’s a structured approach to thinking about problems. That’s both simple and complex, or perhaps it’s more appropriate to say that this is simple, but not easy.

Are we OK at this point in the discussion?

All right, let’s touch on some terms that we frequently encounter in the field of ethics, certainly as ethics applies to the health care setting. This isn’t a comprehensive glossary by any means. And, while terms are important, and while it’s important to use them in a consistent fashion, and in ways that others use them so that everybody’s comfortable that they’re talking about the same thing, it’s also important that we not get too hung up on too many terms too early in the process.

If you’re interested in things like this, any good introductory philosophy text on the subject of ethics can get you going; and there’s any number of online glossaries and course materials that you may find helpful.

Anyway, here are two terms that apply to rules of conduct, a professional code, the application of ethics that we discussed earlier:

The form that we most often encounter for the first term is beneficence - doing good, providing a benefit. We generally encounter the second term in the negative, that is non-malfeasance. Or, as the Hippocratic oath states: first, do no harm.

Here are a few other terms that you’re likely to encounter – I haven’t prepared a slide for them, but let’s take a few minutes to be sure that we have some common understanding, and some context for each term:

· Autonomy

· Competence

· Informed consent

· Substituted judgement

These are terms that we generally apply to patients and families, particularly in difficult situations.

We place a great deal of emphasis on autonomy, really on the idea of who has final control – that the patient is autonomous and has rights and is ultimately the one who decides what does and does not get done to them.

Now, the ability to maintain control and make decisions requires that the person is able to do so, that they’re competent, that they can think clearly and that they understand not only what’s being proposed, like a surgery or other intervention, but also it’s risks and potential outcomes as well as the likely outcomes if the proposed course or action is not followed.

Similarly, if a person is going to give a surgeon or a medical team approval, they really have to be fully informed, they have to be given enough information to be able to make a decision. They need to be told about all of the bad things that could possibly happen, no matter how unlikely, just as they need to be told of all the good things that could happen.

Otherwise, they’re really not informed, are they?

Finally, we get to situations where the patient isn’t really in any condition to make a decision. They’ve been deemed not competent, or they’re unconscious or otherwise unable to participate. That’s the time for substituted judgement. There are laws about who can assume this role, and in what order. There are also ways that a patient can designate someone to act as their surrogate, to make decisions in their place when they themselves are unable to.

But it’s essential to understand that ‘substitured judgement’ means that the surrogate making the decision is striving to make the decision that the patient would make, if the patient could make it. It’s not a matter of asking the surrogate, “Well, the patient can’t tell us, so – what do you want us to do?” It’s really asking, “What do you think the patient would tell us, if they could”

So many of the ethical dilemmas we encounter involve one or more of these few concepts.

That doesn’t mean that the answer will always be the same, because they’re not. And the unfortunate fact is that even though the ethical dilemma is right there in front of us, and even though we can even correctly identiofy the applicable term and concept, it doesn’t always mean that the dilemma is actually addressed in a thoughtful, ethical way.

It’s difficult stuff. It’s painful, and it takes time, and sometimes just raising the question can earn the questioner some unpleasant attention.

I guess Maeve Brennan knew what she was talking about, when she said, “…the impulse toward good involves choice, and is complicated, and the impulse toward bad is hideously simple and easy…”

Which now brings us to the wonderful magic wand that I want to share with you. The tool that by simply waving when times get tough, we will each solve everybody’s ethical dilemnas painlessly and forever.

Ah, ha ha ha.

Seriously, I think this can help:

This article appeared in the July/August issue of the Journal of Hospice and Palliative Nursing, which is the journal for members of the Hospice and Palliative Nurses Nurses Association. There's a copy of this article in the binders that have been prepared for you.

As an HPNA member, I can also send a copy of this article to you via email.

This is a rigorous work, and an important one. I urge you to read it often, in whole and in part. Make lots of notes, and give lots of thought to each paragraph. Make this one article your personal ethics text from this point forward.

I can't do justice to all that the authors say, and we don't have much more time left for that in any case. But here's one statement among many that, I think, gives us a firm ethical foundation, not just with end of life care, but in every aspect of our practice:

While it may sound simple to suggest that compassion serve as the underlying moral foundation to guide our response to suffering, true compassion actually requires great courage. It involves being open and available to suffer with, instead of recoiling from the suffering experience.

In other words, if we simply seek to truly be with our patients, if we just make every effort to build an open and trusting relationship with them, no matter what, no matter who they are or what they need, we will have a firm ethical foundation upon which to base our actions.

That's the magic wand - a genuine and trusting relationship.

Again, simple, not easy. If it was easy, then anybody could do this job, couldn't they?

I also just came across another journal article that describes a specific and very practical method for dealing with an ethical dilemma that we frequently encounter in clinical settings. It's directly related to end of life, but it's also useful in acute care settings more generally.

It's from the Annals of Internal Medicine, and is titled, Discussing Treatment Preferences With Patients Who Want “Everything.” The article by Timothy Quill and colleagues describes a common situation in which to apply the ethical foundation of building relationships that we've just discussed, because the kind of conversation Quill envisions can only take place in the context of a trusting relationship between the patient/patient's family and the clinicians.

I learned about Quill's article from Alex Smith, a palliative care physician who's also a blogger.

Finally, I'd like to close with this short piece from a story that I've really loved for a long time. The movie, actually a multi-episode TV series that I first saw on PBS's 'Masterpiece Theater,' is about the attempts by two expeditions to be the first to reach the South Pole early in the 20th century. The movie was based on the book by Roland Huntford.

This scene shows the leader of the Norwegian expedition, Roald Amundsen, as he finally reaches the Pole. I really like what he has to say, when his men ask that he give a speech to mark their accomplishment:

Thank you.

11/22 Update

I highly recommend Gail Rae's post at her blog, The Mom & Me Journals dot net, titled, "It's About Ethics, Isn't It?" It's rich and deep and thought-provoking and moving. A taste:

Once someone becomes aware that an Ancient and/or Infirm One needs extra companionship and care, it is impossible to avoid the daily intrusion of ethical dilemmas, all of which, from the very first dilemma regarding who should offer this care, are sticklers. They all involve the consideration of what you, as a caregiver or onlooker, can live with and what it takes to live with your decision. I think a handy rule of thumb is this: If living with your decision involves blocking out anything involving the one you know who needs care, like, for instance, blocking out the loneliness your Ancient or Infirm One experiences because you are not particularly present in her life, blocking out the possibility of medical mistakes being made because you've left medical advocation up to the medical professionals without question, blocking out the day-to-day life of your Ancient One because there doesn't seem to be a way to incorporate it into your own life, well, that's probably the point at which you need to question the decision you've made. I know, this doesn't make it easier.

Aren't the innertoobz wonderful?

Yes, they are.

Busy, busy, busy

2009-11-02T10:14:00.000-08:00

Social Media Venn Diagram T-Shirt

by DespairWear

The 2010 Annual Assembly co-sponsored by The American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA), of which I'm a member, is being held in Boston next March, and I plan to attend. I've had the chance to participate in a pallative care/end of life conference, workshop, or similar activity pretty much every year for the last 7 years, and I'm looking forward to this one.

I've always valued professional conferences, because I find them energizing and I enjoy meeting people whose interests I share. I particularly appreciate meeting other health professionals who work with patients and families at end of life.

A few weeks ago, I was very pleased to learn from Drew's post at Pallimed about an opportunity to perhaps even participate in the conference to a greater degree.

A session titled, "Interactive Educational Exchange: Sharing Innovative Teaching Materials and Methods," had already caught my attention. I noted in my other blog last September that my final project in a course I'm taking on information technology in health care will be to continue developing Death Club for Cuties, supplemented by a paper on the subject of blogging.

For my money, blogging's where the action is right now.

Anywhoozle, I went ahead and submitted a proposal to present blogging as a tool for professional development, and for enhancing communication among palliative/end of life care givers. We'll see how it flies.

Now, I'm certainly not presenting myself as some kind of expert, or pioneer. There were many nurses, physicians, and others blogging about these issues long before I started. And there are plenty of people who do it better, and more consistently than me.

It's simply that as my practice has evolved, so have my interests. EOL blogging is pretty much where those interests intersect.

But, whether or not my proposal is selected, I'll be the guy with the black t-shirt at the Hynes Convention Center. And if anyone wants to experience the real Boston, I'm your tourguide.

Anywhoozle, this is from my submission -

Name of Educational Innovation: Blogging as a tool for professional development, and for enhancing communication among palliative/end of life (EOL) caregivers.

Setting/Program/School for which innovation is intended: The innovation is appropriate for both students and clinicians at all levels of practice; and is appropriate for physicians, nurses, social workers, and others involved in providing palliative and end of life care.

Degree or Certificate to which your innovation contributes: The innovation is not directly associated with any specific degree or certification, though it can be a useful supplement to a clinician’s course work and clinical practice.

Abstract

Blogging as a tool for professional development, and for enhancing communication among palliative/end of life (EOL) caregivers.

Background

Self-reflection, objective feedback from peers, and keeping current with new methods and findings are essential for professional development. Similarly, the ability to write effectively and to participate in a collegial network are important ways for clinicians to enhance their individual skills while advancing their professions.

Physicians, nurses, social workers, and others read and contribute to professional journals and other publications. They also teach and attend courses, conferences, and seminars

New channels for professional development are now possible because of the ubiquity of technology tools and the widespread use of the Internet.

Google’s Blogger and other related technologies mean anyone associated with EOL care can reach a worldwide audience of peers, and actively engage them in a rich and ever-evolving conversation using text, audio, video, and more.

Objectives of the Innovation

1. To support effective writing, self-reflection, and community;

2. To develop and expand a network of EOL bloggers;

3. To establish a resource center for current and potential EOL bloggers

Methods

I launched two blogs (blog names intentionally omitted from this abstract) earlier this year to explore topics of professional interest to me - EOL care, and nursing education - and will use this experience as a case study on how others can establish and maintain blogs of their own.

I will also use my experience to illustrate the development of a personal professional network, and I will describe some of the EOL blogs that have become an essential part of that network.

I will identify a range of no-cost and low-cost tools and techniques for EOL professionals who are considering blogging for the first time.

Finally, I will present an online resource center I have developed specifically for EOL bloggers.

Results

I have established online relationships with other EOL, health care, and general interest bloggers. Several shared blogging standards of practice have evolved within this network, including monthly grand rounds hosted by different EOL bloggers on a rotating basis. These grand rounds are used to highlight work within the field in both online and traditional media.

Discussion

The EOL bloggers in the network show unique writing styles, are interested in a wide range of topics, and approach their subject matter in many different ways, from essays based on personal experiences to more expository pieces that display the rigor associated with peer-reviewed journals.

Conclusion

Blogging tools are easy to use. What matters most in establishing a compelling blog is an ability to express oneself, a willingness to ask questions, and a desire to support and engage with others.

This innovation will assist EOL caregivers who wish to explore their professional development through blogging, and will help to increase and enhance the scope of online resources for EOL caregivers.

Failed Kidneys, Hangnails, Living, and Dying

2009-10-31T12:02:00.000-07:00

There's some interesting discussion going on at two fine EOL/palliative care blogs focusing on the subject of hemodialysis and quality of life.

The posts by Alex at GeriPal and Drew at Pallimed were themselves prompted, in part, by an article in a recent issue of the New England Journal of Medicine that explored the impact of hemodialysis on the functional status of elderly patients.

I re-entered clinical practice by obtaining a position in an outpatient hemodialysis setting in 2002, after having spent the previous 19 years working with information technology in health care. It was a very challenging and rewarding setting, for lots of reasons. I think I'd probably be practicing there still if the pay was better.

A few years later, I was recruited to help develop online content for an associate degree nursing program. One of the units that I wrote dealt with diabetes, and I drew upon my experiences in hemodialysis while compliing that material. Here's a section from that unit:

His Death Began with a Hangnail

Of the people I introduced to you earlier in the unit, I was closest to Sid (not his real name). I always worked the shift that he came in for treatment, and he started on dialysis just a few months after I began working there.

Sid was relatively young, the divorced father of a daughter who herself was married with several children and who still lived within the state. His ex-wife had died of pancreatic cancer the previous year, and even before her death the family had reconciled to some degree.

Sid had a heart attack and triple-vessel coronary artery bypass about ten years earlier, as well as a more recent below-the-knee amputation of his left leg. He walked well enough with a prosthesis, and did not require a cane, though his activity tolerance was poor and he became winded after climbing a few stairs.

Sid now needed hemodialysis for his end stage renal disease, which itself was the result of extensive diabetic nephropathy.

I later learned from his daughter that Sid had at first been very anxious about coming to dialysis, even though he had already been through more hospitalizations and surgeries than most people. She also said that he quickly came to enjoy and value his time at the center, in part because it brought him in contact with the same group of patients and staff, three times each week.

That’s one of the advantages of working in this setting - consistent contact.

From the point of view of his dialysis treatments, Sid’s care was pretty routine and uneventful. He experienced very few of the common side effects of treatment, such as symptomatic hypotension and cramping, and his overall clearances (a measure of the effectiveness of his treatments) were generally good.

One day as I was initiating his treatment, I noticed that Sid had a small bandaid around the tip of his left ring finger. There was some slight redness under the proximal edge of the bandaid.

"What’s up with that?" I asked. "Oh, I had a hangnail the other day and pulled it out," he replied, showing me with a gesture how he had brought the cuticle to his mouth and bitten it with his front teeth.

After his treatment was underway, I asked him to remove the bandaid so I could take a closer look. He had a small ulceration, about the size of of a grain of rice, at the base of his fingernail, with redness and swelling down to his first knuckle.

I contacted his nephrologist, who ordered a dose of vancomycin for the final 30 minutes of his treatment. That was pretty much our standard protocol for dealing with infections in that setting - intravenous vancomycin, gentamycin, or tobramycin one or more times each week, with lab measurements of peak and trough values to maximize the effect while minimizing the dose.

But over the course of several weeks, Sid’s cellulitis slowly and inexorably made its way down his ring finger and onto his hand, where it affected his adjacent fingers and continued to his lower arm. The inflamed areas in turn became necrotic, until his entire left hand and forearm were hard and discolored.

Surgical intervention was ruled out, as Sid was deemed to be an unacceptably high risk candidate because of his compromised cardiac status - his left ventricular ejection fraction was measured at about 10% of total filling volume. Medical treatment of his infection was not successful because of his extensive peripheral vascular disease.

Also, because of his poor peripheral circulation, Sid had not had a successful AV fistula implanted for vascular access during his dialysis treatments. So, over the course of several months he relied on a tunneled double-lumen central venous catheter (CVC) as the portal for his dialysis treatments. CVC’s carry a high risk of infection, particularly septicemia, and one night during his treatment Sid developed shaking chills and a fever of 103, requiring immediate hospitalization.

I never saw Sid again after the ambulance picked him up that night.

As I later learned, the surgeons on Sid’s case presented him with the option of having his entire left arm amputated at the shoulder. They were candid with him about the fact that he might not survive the surgery because of his poor cardiac status.

They also noted that he would likely need to have his right arm amputated, as it too was becoming ischemic.

Sid decided that life without one or both arms was not worth living. He chose instead to have his CVC removed and his dialysis treatments stopped. He moved in with his daughter and obtained the support of hospice services for the last two weeks of his life.

The Rest of Sid's Story

The folks who initially supported the preparation of this material suggested that I provide some sort of summary paragraph to the unit. They felt that without such a summary, you might feel that you've been left hanging.

Fair enough, but after thinking about it I guess there are plenty of times where that's exactly was does happen - we're left hanging. We step into a situation that's probably been going on before we arrived on the scene (or before the patient's presented to us), we do what we can and need to do, the patient moves on, and we never know how it all turns out.

Can you live with that? It's a rhetorical question. You'll have to live with it, at least sometimes.

In the case of Sid, we were able to obtain bits of information from the unit's social worker, who herself obtained some information from the hospital's social worker, who helped to direct Sid's final placement and home care. We learned what I wrote in the unit - that he had taken himself off dialysis and had gone to his daughter's home.

A colleague on staff brought in a copy of Sid's obituary (he lived in the next town from where the dialysis unit was located). A couple of my colleagues went to the funeral home, though I did not. Having dialysis staff attend patient wakes and funerals is actually something that happens pretty frequently. As I mentioned earlier, there's a strong sense of community and continuity in this setting. While this community and continuity also raises issues and challenges regarding professional boundaries, there's often the chance to "close the circle" and not be "left hanging," and it's a valuable opportunity.

And just so I don't give you the impressions that working with patients who have end stage renal disease is relentlessly dreary, there are also some "happy endings," like when a patient gets a kidney transplant. In such a case, we all celebrate with them.

And Sid's decision and outcome, while sad, wasn't dreary to me. He took control, and made the critical decisions himself, knowingly. He also spent his final weeks with his daughter and grandchildren, in the comfort of their home, with enough medication and support to be without pain. Isn't that how we'd all like to go?

We got a card at the unit from Sid's daughter, thanking us for taking care of her dad in what turned out to be his final 5 months, and letting us know that he really came to enjoy his time at the unit. I sent his daughter a sympathy card of my own, and told her that I was glad for the chance to meet Sid. He really was a nice guy.

We also spoke individually with each of the other 11 patients who shared Sid's treatment time, so that all of us could acknowledge what had happened. That's just another part of the sense of community and continuity that I mentioned earlier.

So, the folks who worked with me on this unit had a point - I hadn't told you everything in this instance, and I had indeed risked leaving you hanging. So there it is, for now.

"It's not just a body..."

2009-10-24T10:44:00.000-07:00

Robert Bouchie (far left) leads a moment of silence in the anatomy lab before a body is cremated and returned to the donor's loved ones. The pine box also contains notes of thanks from the students.

- photo by Kalman Zabarsky for Bostonia

Our family is the first on either my wife's or my side where every member has at least a bachelor's degree, so we get a fair number of the kinds of alumni magazines at our home that we never saw as kids - including from UConn ("Go, Huskies!"), Harvard ("Don't be so smug."), UMass/Boston ("The campus that political corruption built."), and the Massachusetts College of Art and Design ("Home of the Fightin' Picasso's - Go Pablos!").

My wife went to grad school at Boston University ("We don't have a slogan."), and while idly thumbing through the Fall, 2009 issue of Bostonia I came across Caleb Daniloff's wonderful article, "Parting Gifts." The subhead says, "Robert Bouchie adds one final lesson to the training in the med school's anatomy lab: how to honor the dead."

Bouchie is a BU alum and former football defensive lineman. He worked as a pharmaceutical salesman before earning a degree in mortuary science. He has directed the morgue at the Children's Hospital Boston, and now manages the anatomy lab at BU's School of Medicine and coordinates the school's anatomical gift program.

The online version of the article includes a video featuring Bouchie and the work in his lab, where he tells the students that each person on the dissecting table is, "your first patient, your first instructor."

There are two philosophies in anatomical donations...sometimes the people that have the position that I have, they don't want to sensitize the students, they don't want them to buy into that this was a person that was a friend, father, neighbor, grandparent. They want the students to just view it as a vessel...as a tool.

I'm from the other side of the street. I expect them to care as much as I do. It's not just a body in front of them. It's a real person, and they should never lose sight of that fact."

In the weeds

2009-10-21T12:51:00.000-07:00

Part of my garden, before the frost

Time flies, especially when I'm trying to write for this blog on a regular basis. It's been a month since my last post, and I've been caught up in too many other matters to turn my attention here. I want to change that, because this blog is a priority, as is keeping current and finding new bloggers who're also writing about end of life care.

A substantial chunk of my recent writing energy went into completing the third assignment for my class on information systems in healthcare. Sure, it's not a huge paper by any standards - but most of my time was spent on trimming it down. I find that cutting words and focusing a theme is harder than trying to say lots about more.

I've also been working with my daughter, who graduated from art school and is trying to put together some ways to earn some money doing what she loves. I'll post a link to her site when it's ready.

I'll be joining some colleagues on Thursday to participate in one of the introductory ELNEC modules. There are 30 nurses from all areas of the hospital who've signed up for the 3-session, 9-module course, and I've been asked to help answer a question that often arises, namely, "What can we do to involve our colleagues and improve end of life care on our own unit?"

I'll be conducting the module on ethical/legal issues during the final session in early November, and will also post the materials and notes here at that time.

This is the hospital-wide ELNEC course, and not the ELNEC course and team building program that'll take place on the neurosciences ICU where I work. Three colleagues have so far stepped forward to join that effort, and there are three others that want to talk with me about it more. I expect to formally start the program right after the holidays with 6-8 members.

Finally, I just want to mention the excellent Palliative Care Grand Rounds hosted earlier this month by the bloggers at GeriPal. This series has been a great opportunity to catch up with, or learn about, the many fine bloggers who're working in and writing about palliative care and end of life matters.

I particularly want to recommend the series, 'A Matter of Life and Death,' at Flyp, an interactive online magazine, that was highlighted at GeriPal. Flyp uses multiple media to tell the stories. It's a great example of what's possible out here on the innertoobz. Check it out.

I wanna take a minute to celebrate

2009-09-28T14:00:00.000-07:00

They also won it all in 2007

I first proposed developing an end of life care team in January, and while my nurse manager and others have been completely supportive from the start, it's taken until today to get the official word out to colleagues with this announcement and recruitment email:

Hi Folks:

This is a lengthy email, but here are a couple of quick questions to decide if you should continue reading it -

1.Do you want to develop or enhance your you current skills in caring for patients and families at the end of life (EOL) as a central part of your clinical practice on 9C/D?

2.Will you commit to actively participating in a series of half-day educational programs to develop your EOL care skills?

This commitment will require you to read on different topics from a variety of sources in preparation for the sessions, actively participate in workshop exercises and group discussions, and engage in self-reflection through writing and story telling.

The expected outcome will be that you will be capable of providing expert EOL care; review and assess current policies regarding EOL care; help develop new policies and tools to improve EOL care on 9C/D; and be a visible and active resource to our colleagues regarding EOL care.
"The End-of-Life Nursing Education Consortium (ELNEC) project is a national education initiative to improve end-of-life care in the United States. The project provides undergraduate and graduate nursing faculty, CE providers, staff development educators, specialty nurses in pediatrics, oncology, critical care and geriatrics, and other nurses with training in end-of-life care so they can teach this essential information to nursing students and practicing nurses. The project, which began in February 2000, was initially funded by a major grant from The Robert Wood Johnson Foundation (RWJF). Additional funding has been received from the National Cancer Institute (NCI), the Aetna, Archstone, and California HealthCare Foundations, Open Society Institute, and the Oncology Nursing Foundation."
Jerry, a qualified ELNEC trainer, will direct a series of 3 four-hour sessions starting in the coming months to develop an EOL nursing care team specifically for 9C/D patients, families and fellow staff. The educational program is based on the ELNEC curriculum.

You can learn more about ELNEC here.

As a member of the 9C/D EOL Care Team following your training, you will provide direct EOL care to patients and families and also be a visible and active resource to colleagues when you are not directly assigned to a patient and family at EOL.

You will help with the early identification of potential ethics consults, and provide monitoring and follow-up on patients who die on 9C/D on behalf of the New England Organ Bank, the Bereavement Committee, and other related groups here.

Finally, you will help assess and develop tools, policies, and practice standards for EOL care on 9C/D; and help improve the overall quality and effectiveness of the EOL care we provide on our unit.

Jerry developed this project as a result of his own clinical interest in caring for patients and families at end of life, and based on his qualifications and professional development.

Jerry has been a nurse for 33 years. He earned a diploma in nursing from Catholic Medical Center in Manchester, NH in 1976; a bachelor of science in nursing from Boston State College (now Umass/Boston) in 1981; and a graduate certificate of special studies (CSS) in health policy from Harvard University in 1987. He is currently enrolled in the master of science in nursing program at St. Joseph's College in Standish, Maine.

Since 2002, his professional development has focused exclusively on EOL care through programs and training at Beth Israel Deaconess Medical Center, the MGH Institute, the Harvard Medical School Center for Palliative Care, the Harvard Center for Bioethics, and ELNEC.

Jerry's 14 years of clinical experience in critical care and hemodialysis has brought him into frequent contact with patients and families at end of life. He also spent 19 years in the information technology field, working with computer systems in clinical settings.

Jerry became an ELNEC trainer in October, 2008

The ELNEC curriculum is divided into 9 distinct modules -

Module 1 - An Introduction to Palliative Care
Module 2 - Pain Assessment and Management
Module 3 - Managing Other Symptoms at End of Life
Module 4 - Ethical and Legal Issues
Module 5 - Cultural Considerations
Module 6 - Communication Skills for End-of-Life Nursing Care
Module 7 - Loss, Grief, and Bereavement
Module 8 - Achieving Quality Care at the End of Life
Module 9 - Preparation and Care at the Time of Death

ELNEC trainers can adjust the sequence and specific focus of the individual modules to meet the needs of the audience. The first half-day program for the 9C/D EOL care team will include the content from the modules on Ethics, Communication, and Grief/Loss to accommodate several non-nurses who have expressed an interest in attending that session.

The two subsequent sessions will focus on content from the other modules specific to nursing practice.

Each half-day program will include a mix of lecture, case studies, class discussions, and media presentations. You are expected to prepare by reading the essential materials; to actively participate in discussions; and continue your learning beyond the classroom through self-directed reading and research, and self-reflection via journaling and story-telling.

At the conclusion of the program you will be recognized as being ELNEC trained, which includes a special pin for your ID badge or scrub stop. Note that this is not a certification or credential, but it is an explicit acknowledgement of your accomplishment. You will also earn CEU's for 12 contact hours of approved content, and become an essential member of a team dedicated to improving and maintaining the quality of EOL care on our unit.

If you're still interested, please contact via email to me , with a copy to Vince and Jerry.

In your email, please describe your own interest, experience, and goals pertaining to end of life care. It will be very helpful for you to include a brief story about a case where you were called upon to provide EOL care. That experience can either be a positive or negative one. In either event, indicate what you learned from it.

In the meantime, if you have any questions or comments specifically about this program, please ask Jerry via email or in person. For any logistical questions please contact me.

This email will help me understand the level of interest and allow me to plan appropriately.

Thanks for reading through to this point, and for your consideration.

Shaun

It's a big moment for me, personally and professionally.

And the Red Sox are looking pretty good heading into 2009 postseason play...

Update 10/2: Here's another reason for me to celebrate - I just got my first reader comment in quite a while!

A little respect

2009-09-22T12:45:00.001-07:00

I met the Surgeon General. He offered me a cigarette.

Here's an email I got today from Christian Sinclair, a hospice and palliative care physician, and co-editor of Pallimed.

We have the December slot (for Palliative Care Grand Rounds) open if you think your Death Club blog would be up for it?

Great job writing so far. I have been meaning to highlight a few of your posts but have not gotten to it yet. I plan on submitting some for the upcoming PC Grand Rounds at Geripal.

I most certainly am up for it! I'm grateful for the chance.

I'm also glad to learn about GeriPal, and have added it to my blogroll.

And since I'm in a Rodney Dangerfield kind of mood...

Closer to dying, far from dead

2009-09-15T12:28:00.000-07:00

Photograph by Richard Avedon.
Jacob Israel Avedon, Sarasota, Florida, December 19, 1972.

(this portrait is part of a series that the photographer made to record his father’s last years)

It's often difficult to keep track of exactly how things happen out here on the Innertoobz, but I'll try to summarize one recent chain of events:

Yesterday, I stumbled across a blog called Boston Health News (BHN). I honestly don't know how I found it, but I'm glad that I did - the writing's excellent, and the news is timely - and I promptly added it to my blogroll category, 'Healthcare, Death, Life, etc.' I also posted a brief comment over there, and subsequently heard back from the blog's owner, health and science writer Tinker Ready.

Tinker also sent along the following email:

Hi Jerry, I like your blog and I like the name, but I’m not sure others will get it. So I’m going to link to you under “End of Life Care.” Let me know if that’s a problem.

I think it’s an important topic in this age of death panel-baiting. Thanks for checking in.

Links are the figurative coins of the blogging realm, and I think it's really important to find like-minded bloggers, read and comment on their stuff, and exchange links to promote each others' work when the fit seems right.

Tinker also told me about another of her blogs, Boston Boomer News (BBN).

I checked out a brief story posted at BBN on September 11, "Doctors need to ask different questions as you age," which led me to an assessment tool developed by the Health Committee at the Boston Partnership for Older Adults (BPOA). The tool provides guidelines to primary care providers for conducting a comprehensive functional assessment of older adults, and there are versions available in English, Chinese.

So, the story thus far: Innertoobz stumbling --> find BHN --> exchange comments, email, links with link-minded blogger --> learn about BBN --> read story at BBN about an assessment tool for PCPs to use with older adults --> go to BPOA.

The BBN story and the information at BPOA reminded me of a magazine article on the subject of aging I had read, written by one of my own favorite health writers, the surgeon and author Atul Gawande. That led me to a search for Atul's own web site, and subsequently to the reprint of his article, "The Way We Age Now."

Gawande's article includes an account of time he spent with Juergen Bludau, the chief geriatrician at the Brigham and Women's Hospital's Center for Older Adult Health in Boston, as Bludau examined a patient.

I tried to think what could be accomplished in this visit. She was in good condition for her age, but she faced everything from advancing arthritis and incontinence to what might be metastatic colon cancer. It seemed to me that, with just a forty-minute visit, Bludau needed to triage by zeroing in on either the most potentially life-threatening problem (the possible metastasis) or the problem that bothered her the most (the back pain). But this was evidently not what he thought. He asked almost nothing about either issue. Instead, he spent much of the exam looking at her feet.

“Is that really necessary?” she asked, when he instructed her to take off her shoes and socks.

“Yes,” he said. After she’d left, he told me, “You must always examine the feet.” He described a bow-tied gentleman who seemed dapper and fit, until his feet revealed the truth: he couldn’t bend down to reach them, and they turned out not to have been cleaned in weeks, suggesting neglect and real danger.

Gavrilles had difficulty taking her shoes off, and, after watching her struggle a bit, Bludau leaned in to help. When he got her socks off, he took her feet in his hands, one at a time. He inspected them inch by inch—the soles, the toes, the web spaces. Then he helped her get her socks and shoes back on and gave her and her daughter his assessment.

So, what's my point?

Well, I guess it's simply that in paying such careful attention to the needs of patients and families at end of life, we in this field can overlook the people who are far from dead, but who may be getting closer to dying.

Hmmmm, that sentence doesn't seem quite right. I can understand how somebody might misunderstand it or become alarmed, but I'm not sure how else to say what I'm trying to say.

How about this - any of us may reach the end of our lives suddenly, from a serious accident or other trauma; or we may come down with an illness that results in a series of sharp declines, perhaps interrupted by periods of reprieve or temporary improvement.

But those are just two models. There's at least one other trajectory, one where the slow but inevitable march of time takes away the things that are important to us, but takes them away in such small increments that we don't really notice until a large pile of accumulated pieces gets our attention, or the attention of others around us.

I don't have any answers or advice about what to do with this thought just yet, except maybe to note it as another link in the chain that started when I was stumbling around on the Innertoobz and found Tinker Ready and her blogs.

One other quick note - Juergen Bludau's a member of the Board of Directors at BPOA. Small world.

From his final note

2009-09-10T11:01:00.000-07:00

When I first wrote about Ted Kennedy's death, I anticipated the temptation to add to the essay in subsequent days. And I was tempted. And I did add to that initial essay.

Perhaps it's because I grew up in a very strongly Democratic household, the son of parents who lived their most formative years during the Great Depression and directly experienced the many ways FDR sought to alleviate their hardships, and who saw John F. Kennedy not only as an inspirational candidate and leader, but also as a neighbor from a city just an hour's drive from our own home.

Or maybe it's because the policy issue that Ted Kennedy has been most closely associated with, and will likely always be most remembered for, is the policy issue that I care most deeply about, and that has defined my entire working life so far.

In either case, I was pleased to hear the President include parts of a letter written to him by Ted Kennedy in last night's remarks to a joint session of Congress on health care. And I was moved by what Ted Kennedy had to say:

I saw your conviction that the time is now and witnessed your unwavering commitment and understanding that health care is a decisive issue for our future prosperity. But you have also reminded all of us that it concerns more than material things; that what we face is above all a moral issue; that at stake are not just the details of policy, but fundamental principles of social justice and the character of our country.

And so because of your vision and resolve, I came to believe that soon, very soon, affordable health coverage will be available to all, in an America where the state of a family’s health will never again depend on the amount of a family’s wealth. And while I will not see the victory, I was able to look forward and know that we will – yes, we will – fulfill the promise of health care in America as a right and not a privilege.

Then again, don't we all?

2009-09-08T10:58:00.000-07:00

Yeah, I guess sometimes I DO act like a dick...

On one occasion when I was caring for a patient whose family had decided to redirect care, the new resident asked for directions on how to order morphine to manage the patient’s pain and dyspnea.

“Order a drip of 100mg in 100ml,” I replied. “And set the dosing at 0-10mg per hour, titrated as required to control symptoms.”

That’s what I told her to do because, well, I guess that’s how we always do it. I admit that wasn't a very well thought-out line of reasoning. And while it maybe wasn’t a particularly dick-ish position, it certainly set the stage for what followed.

A colleague, D--, overheard our conversation. She had recently completed a clinical practicum in palliative care as part of her nurse practitioner program, and was well-aware of my interest.

D-- approached me and asked, “Why are you doing a morphine drip?”

That’s when my hackles went up. That’s when the dick-ishness kicked in.

I gave her my best blank stare, and though I can’t remember exactly what I said in response, I do know that my internal alarms were screaming, “Hey! I know what I’m doing! This is MY patient! Go away!"

Maybe it would have been more helpful if my internal alarms had screamed, “Hey! Don’t be a dick! She might be trying to help!”

D-- said our hospital had recently issued new guidelines for managing symptoms at end of life, but I couldn't hear her through the closed door of my mind, and the screaming. I was using my internal energy to defend an indefensible position. Dicks don't listen.

The better angel of my nature began to assert itself, at least to the point of saying, "Well, if you've got something you can refer me to, let's see it."

I made a dismissive gesture with my hand. "Now go away."

But now at least a door was open.

To her great credit, D-- didn't respond to my ridiculously bad manners and utter lack of professionalism. Instead, she returned to her laptop, looked up the relevant guidelines, and placed a printed copy on my workstation as I retreated into the patient's room to compose myself.

I picked up the guidelines and reviewed the section on morphine dosing that applied to my situation. The guideline recommended starting opioid-naive patients on an intravenous dose of 2-4mg, given as needed, as frequently as every hour.

The guidelines stated that a continuous infusion of intravenous morphine was appropriate if the patient's symptoms were not well-controlled with the as-needed dosing, and if the patient required doses every single hour.

Instead of a vague parameter like "set the infusion at 0-10mg per hour, then titrate as required to control symptoms," the guidelines also provide mechanisms for setting an appropriate initial infusion dose, based on the previously-tried as-needed dosing; and for increasing the dose when required.

The wisdom of following established guidelines and using proven tools should be obvious. But as Betty Ferrell and Margo McCaffery say in their 1997 study, Nurses' knowledge about equianalgesia and opioid dosing:

Nurses are recognized as the cornerstone of palliative care. Yet, surveys of nurses' knowledge of cancer pain management reveal serious knowledge deficits that could adversely affect the care of patients with cancer pain.

This work is difficult enough, and there's always a lot to be learned. I've learned not to complicate it further by being a dick.

Thanks, D--.

Where to sit?

2009-09-06T10:50:00.000-07:00

Sean O’Mahony, a palliative care doctor, with a patient, Deborah Migliore, in the Bronx.

Photo - James Estrin/The New York Times

I came across the piece accompanying this photo in a recent issue of the New York Times. It's titled, "At the End, Offering Not a Cure but Comfort."

It's the third in the series, "Months to Live." The first, "Fighting for a Last Chance at Life," appeared in May. The second, "Sisters Face Death With Dignity and Reverence," was published in July. (free registration required for access)

I highly recommend each one, and look forward to future installments.

I was most struck, however, by this reader comment:

I don't know if the picture at the top of the first page of the article was posed but one thing struck me. The medical personnel are on one side in opposition to the patient. It really made me feel the distance they were maintaining from the patient they were trying to help. Someone could move to sit beside her and perhaps the group dynamics would change and the information exchange would be enhanced. These seem like very caring team members, but little things can make a big difference....

It's an astute observation, and prompts a story of my own -

I once took over the care of a patient who was less than 30 years old, after a colleague who was working 7am-3pm left for the day. I've always worked 7am-7pm, and so was going to be with this patient for 4 hours. I had not previously cared for the patient or met any of the patient's family or other visitors.

The patient had experienced prolonged global cerebral anoxia the prior week, and was now suffering from the complication of profound autonomic dysfunction.

While the patient still had some brainstem activity, the overall prognosis was extremely grim, and had been from the beginning.

The patient's parents were divorced, but both had maintained an active presense. An older sibling was also closely involved in directing decisions on the patient's behalf.

A few days after the patient had been admitted, one parent and the sibling had advocated against a tracheostomy (trach) and percutaneous enterogastric (PEG) feeding tube for longer-term respiratory and nutritional support, saying that the patient would not have wanted to be kept alive under such circumstances.

The other parent held out some hope, and wanted to give the patient a chance for recovery, so the decision had been made to proceed with the trach and PEG.

The three family members had also agreed to revisit the patient's goals for care after one week, and that time had now arrived. The hospital's palliative care team had been consulted, and was going to meet with the family later that afternoon.

The parent who had held out the most hope was in the room when I took over, accompanied by a supportive sibling. They both sat to one side of the bed.

The attending physician and fellow from the palliative care team arrived at about the same time I did. I joined them as they entered the room to introduce themselves.

The parent wanted to wait until the patient's older sibling arrived before beginning any discussion, and anticipated that it would be at least another hour. The parent's demeanor was very guarded, almost angry. The two physicians gave me their pager numbers, and as they left I agreed to contact them when the sibling arrived.

There were now four of us in the room - the patient, the parent, the parent's own supportive sibling, and me. It was suddenly very still and quiet. I was the only one standing.

I felt a sob well up in my chest. I don't know why, exactly - maybe it was because the patient was not much older than my own two children, or because the parent looked so sad and lost.

I managed to stifle the worst of the sob, but it was all I could do to look at the parent's tear-filled eyes and simply choke out, "I'm so, so sorry."

I really meant it. There was nothing else that I could do or say. The parent nodded.

Then I squatted down besides the parent's chair. There was no other place for me to sit. We were all now looking in the same direction, towards the patient lying just above the level of our eyes in the bed several feet away.

A minute or two passed without a word, then the parent started to talk.

There's much more to the story, certainly. But the point I wanted to make, the point that was prompted by the reader comment, was simply that sometimes it's so important to sit next to somebody in order to actually be with them.

What it really looks like

2009-09-03T11:25:00.001-07:00

Registered Nurse N. Von Reiter comforts Ramond Garcia as his health quickly declines at the Hospice of Saint John. Garcia had been admitted to the hospice after suffering a stroke.

from Caring for the Terminally Ill, a photo essay by John Moore.

I learned about this photo essay through Michael Shaw, one of my favorite bloggers, at BagNewsNotes, one of my favorite blogs. Shaw writes:

As a sensitive reply to the callous, two-dimensional and endless right-wing references to "pulling the plug," Moore's images capture the enormous cost -- in painstaking effort, intense emotions, agonizing choices, and yes, financial burden surrounding the terminally ill. Most significantly, he frames the end of life as a process and a life stage -- in contrast to its absurd framing as either a pre-paid ticket or somehow a determinative act.

Some shameless self-promotion

2009-09-01T13:59:00.000-07:00

I'm blogging about my new grad school adventures at another site, and I submitted my first assignment for my first course today.

(polite golf claps)

Why, thank you. Thank you very much.

Anyway, my assignment was to identify five sites out there on the innertoobz, using a search tool. The assignment included the suggestion that the search focus on an area of personal clinical interest, so for me that obviously meant, you know...caring for patients and families at end of life and stuff.

Anyway, to make a long story shorter, you can find the post here. It's chock-full of good information for anybody who shares my interests in this field.

And so the day has arrived

2009-08-26T08:33:00.001-07:00

My first post in this blog last February anticipated this day, and so it has arrived - as it always does, and as it will for all of us.

I don't really have much more to say about Ted Kennedy. There are plenty of detailed accolades already in print and online, and so many more to come.

He was my Senator for the entire 32 years I've lived in Massachusetts. I was happy to vote for him, proud. If he had come to our hospital when he first became ill with the brain cancer that ultimately killed him, my colleagues and I would have provided him with the best care possible, because that's what we do for every one of our patients.

The fact that he has died proves he is, in the most essential ways, no different than the rest of us. Sure, his father was one of the richest men in the country of his time, and that fact brought opportunities and advantages to Ted that most of us can only imagine, or envy.

But my work, our work, with the dying and their families brings us closer to people than most others will ever experience. That, too, provides opportunities and advantages, most notably the chance to see that we're pretty much all the same.

photo cropped from one taken last year by Stephan Savoia for Associated Press, obtained at this site, and captioned "Sen. Edward M. Kennedy, D-Mass., smiles as he sit with his daughter, Kara Kennedy, in a family room at the Massachusetts General Hospital in Boston."

Update: AdamB, writing at DailyKos, links to Ted Kennedy's speech at the 1980 Democratic National Convention, when he conceded the nomination to Jimmy Carter. This passage stands out among many noble phrases:

"...we cannot have a fair prosperity in isolation from a fair society. So I will continue to stand for a national health insurance. We must -- We must not surrender -- We must not surrender to the relentless medical inflation that can bankrupt almost anyone and that may soon break the budgets of government at every level. Let us insist on real controls over what doctors and hospitals can charge, and let us resolve that the state of a family's health shall never depend on the size of a family's wealth."

Update #2: NCrissieB, also writing at DailyKos, has a passionate essay:

"Most of the time, funerals aren't really about the dead but about the living. The dead need mourning rituals the way fish need bicycles. It's the living who need those mourning rituals, to communalize the grief and crystallize what is now absent by celebrating what was once present. Most of the time, the eulogy is about our memories of the deceased, what he/she meant to us.

Read the whole thing.

Update #3: Here's the C-Span feed of the closing song from Kennedy's Friday night 'Celebration of Life.' Indeed, "it's the living who need these mourning rituals."

Watch the whole thing. I'm glad somebody uploaded the C-Span feed, and not the feed from NECN or some other outlet where the newsreaders feel obligated to endlessly chatter their nonsense.

Update #4: Joan McCarter, writing at DailyKos, says:

"He recognized that by a twist of fate by being born a Kennedy, he was born into a life of wealth, power, and privilege. But unlike so many of the wealthy, the powerful, he lived daily with the conviction of the inequity of life in America."

Three to get ready...

2009-08-25T07:14:00.000-07:00

Now go, cat. Go!

So, I guess I can say that it's semi-official - my proposal to develop and end of life care team specifically for our unit has been approved to actually happen. I'm psyched.

We're looking at a series of three class meetings held one month apart, beginning in October. Each will last four hours, and the entire course will touch on the full set of nine ELNEC modules.

I was also asked to build the first class around modules that would be useful for non-nurses, because at least one physician, our unit's assigned chaplain, and one or both of our assigned social workers want to attend that session. At this point, I'm planning to build content around the topics of ethics, communication, and grief/bereavement.

There are also three other ELNEC trainers at my hospital, and two of them are heading up a 3-part course in October/November that is available to nurses on all of the units. They've asked me to help with one of the modules, and of course I'm very happy to do so.

It's been clear to me for as long as I can remember that end of life care needs to be a huge overall priority, not just at my hospital but throughout the health care system. The dying and their families are very badly served in the acute care setting that many of us practice in.

That's certainly not for lack of caring. I think most of us do our best on a case by case basis. It's just that hospitals, medical centers, and clinicians are geared to other things.

But the wheel's turning, even if it's turning more slowly than I'd like.

Have these lying idiots created an opening?

2009-08-21T06:45:00.001-07:00

I made a conscious decision to avoid overt political discussions when I started this blog.

I also felt it was important to not comment on the ridiculous assertion that proposals to reform our very dysfunctional health care system include ominous provisions that would "pull the plug on grandma."

I don't have the patience to listen to folks who demagogue the issue, or to counter, point by point, their gross distortions.

Thankfully, comedian/TV host Jon Stewart does:

Part 1

Part 2

Liars.

Idiots.

Lying idiots.

However, in my search for the silver lining, here's a question - "Have these lying idiots created an opening? Is this our chance to have more and better honest discussions with people about end of life care?"

It's a rhetorical question. We can always have more of these conversations, and better ones, with our family, friends, and patients.

But maybe now it just got a little bit easier.

And maybe now I can go back to following my earlier inclinations to avoid overt political discussions.

8/24 Update: And the lying idiocy continues.

9/2 Update: The Hospice and Palliative Nurses Association tackles this issue head-on in their latest newsletter:

Opponents of health reform efforts are misrepresenting parts of the House and Senate legislation. In particular, the Affordable Health Choices Act contains a provision (page 425 of H.R. 3200) that would provide coverage under Medicare for people to talk to their doctor about their wishes. This provision has been used as a scare tactic by those who are claiming that it is a step toward government-mandated euthanasia for the elderly.

In fact, it is nothing of the sort.

More here.

Another poem

2009-08-04T08:15:00.000-07:00

I've been busy, certainly. My work is daily contact with sickness, pain, death, and grief. It's work that I've chosen to do, that I've sought out and been educated for, that I actively engage with.

I haven't shared any specifics yet, either from my current practice or from past encounters. I very much want to, and I'm going to find ways to do so that are consistent with ethics and the law.

I just don't know what those best ways are right now.

In the meantime, here's another image and poem:

Theresa Seeley is comforted by a friend as she clutches the American flag presented to her at the burial of her son, U.S. Army Sgt. Michael Seeley, in St. Anthony's Cemetery in Fredericton, New Brunswick, Canada, Thursday, Nov. 9, 2006. Seeley, a member of the Mi'Kmaq First Nation, was killed in a bomb attack on Oct. 30 while on duty with the U.S. Army in Iraq.
(AP Photo/Andrew Vaughan, CP)
Evening
by Gail Mazur
Sometimes she's Confucian--
resolute in privation. . . .
Each day, more immobile,
hip not mending, legs swollen;
still she carries her grief
with a hard steadiness.
Twelve years uncompanioned,
there's no point longing for
what can't return. This morning,
she tells me, she found a robin
hunched in the damp dirt
by the blossoming white azalea.
Still there at noon--
she went out in the yard
with her 4-pronged metal cane--
it appeared to be dying.
Tonight, when she looked again,
the bird had disappeared and
in its place, under the bush,
was a tiny egg--
"Beautiful robin's-egg blue"--
she carried carefully indoors.
"Are you keeping it warm?"
I ask--what am I thinking?--
And she: "Gail, I don't want
a bird, I want a blue egg."
- - - - -

Returning to the poetry of grief

2009-07-21T10:25:00.000-07:00

I began a regular series of "diaries" several years ago as a registered member of the DailyKos community, based on linking wire services photos, mostly from the invasion and occupation of Iraq, with poems that I was familiar with, or that I found online.

My idea was to use the words and images to acknowledge and express grief - both as a witness to the grief of others; and as a more direct personal statement about what was happening.

I developed over 600 entries in the DailyKos series, beginning just after the 2004 presidential election and lasting until mid-January, 2007, at which point I developed a blog that continued the series, though with less frequency, for another year.

I haven't done anything else with my project since that time, but thought it would be good to try picking up again here. I'll start by simply copying from that earlier work, at least once each week.

- - - - -
Cayetana G. Palacios cries as her son, U.S. Army Corporal Eric G. Palacios-Rivera, of Atlantic City, N.J., is posthumously recognized with the Drum Major for Community Service award, during the New Jersey Martin Luther King Jr. Commemorative Commission's annual King Holiday Celebration, Sunday, Jan. 14, 2007, at the War Memorial in Trenton, N.J. Palacios-Rivera was killed in action in Iraq on Nov. 14, 2006. He is pictured on his mother's shirt.
(AP Photo/David Gard)

from Mass for the Day of St. Thomas Didymus

by Denise Levertov

ii Gloria

Praise the wet snow

falling early.

Praise the shadow

my neighbor's chimney casts on the tile roof

even this gray October day that should, they say,

have been golden.

Praise

the invisible sun burning beyond

the white cold sky, giving us

light and the chimney's shadow.

Praise

god or the gods, the unknown,

that which imagined us, which stays

our hand,

our murderous hand,

and gives us

still,

in the shadow of death,

our daily life,

and the dream still

of goodwill, of peace on earth.

Praise

flow and change, night and

the pulse of day.

Some helpful constructs

2009-07-11T08:53:00.001-07:00

Two Paths Through Pines
photograph by Mark A. Kawell

I’ve developed several metaphors that have proven helpful when talking to families facing catastrophic injury/illness and the possibility of death, and who need to understand end of life care in a meaningful context.

To start, let's stop using the awful expression “withdrawing care.” None of us would feel comfortable taking something away from a loved one, especially when that something is literally keeping our loved one alive.

I use the term “redirecting care,” to emphasize our conscious decision to focus on a specific set of objectives – most notably comfort, dignity, and family closeness. This idea also makes better sense when considered in the context of what I describe to families as the three basic paths guiding care in the acute setting.

Curing – The first path focuses on curing the patient’s underlying illness or injury. I use antibiotic therapy and surgery as examples. Often, the patient’s own history includes one or more initial treatments directed at curing, so this is pretty straightforward for most people to understand.

When a patient’s condition is dire, it also helps the family see that the path to a cure may be highly uncertain at best, or even unrealistic, no matter how desperately they may hope otherwise.

Support for Healing – The second path emphasizes actions that support the patient’s own ability to heal. I point to interventions like the nutrition from high calorie/high protein tube feedings, and intubation with mechanical ventilation, as ways that we help a patient get better. I also point out that these measures are generally only needed for a limited time, even if that temporary period extends for weeks.

When a patient hasn’t improved or recovered despite our actions, the family usually finds it easier to understand that the possibility for healing has become more remote.

Comfort and Dignity – The third path is entirely devoted to keeping the patient comfortable in whatever way is required - controling pain, easing air hunger, and calming agitation; and to maintaining the patient’s identity as a person with friends and family who love them.

I also emphasize and identify ways that the family can join in providing this comfort and insuring this dignity.

Families are more at ease when they’re confident we’ll help keep their loved one comfortable, and when they know they’ll all be treated with respect and not left alone.

I’ve found that these three concepts of care support more meaningful discussions with families to determine the most appropriate goals of care. We’re less likely to get into misunderstandings and struggles, and more likely to focus on what we all agree is most important.

- - - - -

Mark Kawell lives in Minnetonka and Ely, Minnesota…He studied photography, film, art and architecture at Bemidji State College, the University of Minnesota and the Minneapolis College of Art and Design.

Kawell worked for many years as a product and architectural photographer and was an instructor of large format photography at Bemidji State College

(snip)

During the last decade Mark has devoted more time to his personal photography. He has photographed in England, Holland, Italy, Germany, California, Washington, North Carolina Canada and Minnesota. He works primarily with a 4x5” wood field camera.

Vacation soon, then activity

2009-07-08T18:43:00.001-07:00

I'm finally putting some things to rest, as I prepare to start some new activities including, I so fervently hope, my plans for developing an end of life care team at work.

I had a couple more discussions with the nurse manager of our unit this past week, and it seems like I'm finally going to soon get the formal go-ahead for the project I first proposed in January, and for which I started preparing last October.

Maybe I've been preparing for this project since I first attended an end of life care program in...2003, maybe. That was a day-long event at Boston's Beth Israel Hospital, now known as Beth Israel Deaconess Medical Center. BI is home to one of the best medical writers around, as well as to a blogging CEO.

Then again, maybe I've been preparing for this project since 1976. That was the year I graduated from a hospital-run school of nursing, and that my father died.

I'll ramp up the frequency of my posting here, and plan to include accounts of the project as well as others related to, or provoked by, the topics of living, dying, death, and the things that precede and follow them.

I've been working on a piece, mostly in my head, about the sudden loss of a colleague last month. I hope to get it down in pixels, in a form that's worthy of the subject, while I'm recharging next week.

Meanwhile, I came across this site while scoping out something entirely unrelated to where I ended up. Ain't that always the way?

Today is the first day after we buried Pablo's physical body in the ground at Forest Lawn. He is now fully and completely at rest. Now we will begin our journey of looking for Pablo's spirit and energy in our lives, in each other, in the world. It's not hard. He cast a wide net, my little Scrapper.

I want to write about the past two days, and I will. But today it's too hard. I can't touch it yet. It's too hot.

Filling in the time

2009-06-24T09:25:00.000-07:00

I've made several false starts in writing about my presentation to the NICs in April. I'd hoped to build a series of posts around the various points that I made, as well as summarize some of the questions and comments that came from our discussion.

So, for starters, here's the cartoon that I pulled from an old copy of the New Yorker magazine, and included on my hand out. I've been collecting cartoons on the 'death theme' for a while.

I mean, if you can't laugh about death, what can you laugh about? Maybe I'll start putting up a cartoon every week, just to get in the habit of more regular and frequent posting.

One of the NICs asked if I was going to insist that everybody use the name that I initially chose for my project, "Death Club for Cuties."

I replied that I would not insist on it, and that I had chosen to call it "Death Club for Cuties" simply as an initial code name.

I expect that, if we go forward with this project, it'll end up being called something bland and inoffensively descriptive, like the "Neurosciences Intensive Care Unit End of Life Care Team."
That'd be fine with me, just as long as we get things moving.

But in my own mind, it'll always be a death club. For cuties.

One small step at a time

2009-05-30T21:44:00.000-07:00

Yes, I did that presentation last month to the NICs, and I think it went well. I'll write up the particulars in a separate post, along with my plan to get this project actually rolling.

Until then, here's an article by Max Alexander that I came across in the March issue of Smithsonian magzine, "The Surprising Satisfactions of a Home Funeral." In it, Alexander compares the after-death care of his father in law with that of his own father. The two men died within just a few weeks of each other.

One was buried, one was cremated. One was embalmed, one wasn't. One had a typical American funeral-home cotillion; one was laid out at home in a homemade coffin. I could tell you that sorting out the details of these two dead fathers taught me a lot about life, which is true. But what I really want to share is that dead bodies are perfectly OK to be around, for a while.

Until we’re really rolling…

2009-04-23T14:20:00.000-07:00

I noted in my last post (last month?!?) that my nurse manager supports my proposal to develop a core group of end of life care nurses in our specialty intensive care unit, based on the ELNEC curriculum. This group will have primary responsibility for caring for patients at the end of life, and we will be resources on the topic for our colleagues.

It’s a big unit, and we’re very busy pretty much all of the time. We have 20 beds, and 100 nursing staff. Our house staff includes a dozen and a half residents enrolled in a 6-year surgical subspecialty program; rotating fellows in critical care medicine and interventional radiology; and an ever-changing cast of medical residents rotating through for a taste of our specialty.

And we’ve started counting our dead.

Every few weeks for the last year and a half, we've sent out condolence cards to the families of the patients who died while in our care. We average 10 deaths each month, so a program to improve the end of life care that we provide makes sense.

But the wheels turn slowly in large university medical centers. Or maybe it just seems that way when a project I feel so strongly about is just one of many items on someone else’s agenda.

No, the wheels do turn slowly – slower than I’d like, anyway. But that’s the reality, and so here we are.

This project has been put on the agenda for next week’s all-day off-site meeting of the permanent NICs (nurses in charge), and it is important that this group understand the project and support its goals. I may have up to one hour to present the project and conduct a discussion, or as little as half an hour.

I’m flexible.

Our institution, like too many others, is addicted to the relentless and indiscriminate use of PowerPoint – a surefire way to bore an audience to tears and kill any chance for a useful and productive interaction. You know – teaching and learning, that sort of thing.

I’ve been fighting a lonely battle against this kind of foolishness. So, to answer those folks who may be asking, “Hey, will you be handing out any PowerPoint slides at this presentation to the NIC’s?” the simple answer is, “Fuck, no!”

There are much more effective techniques for presenting information, and I plan to draw upon them next week, and in the coming months. I’ll let you know how it’s going.

Also:

I was happy to learn about two new blogs today on the subject of palliative care – Pallimed, and HospiceNP. The network grows…

Bonus - a meditation:

Not quite rolling yet

2009-03-28T17:08:00.000-07:00

My nurse manager has agreed to my proposal to guide the development of a core group of end of life care resource nurses in our 20-bed specialty intensive care unit, and we're working up the final pieces of the plan.

I want to use this site as an important part of the project. I'll include materials from the series of classes we'll be conducting, and hope that the participants will contribute posts and comments here.

One step at a time, though. Things often don't move as quickly in large institutions as I'd like.

Until then, I hope you'll read a very fine essay that I just came across at DailyKos. It's called "Wife," and it's a loving tribute by The National Gadfly to his grandmother. Here's a small taste:

In reality, the memories of the dead can never do justice to their lives. No monument or story or reverence can replace or recreate the impact of anyone. It is simply not possible. What we can do, is to do what they did - live, and do so with every ounce of care and commitment that we can generate. The greater the legacy we might wish to honor, the greater the commitment we share with those that live with us now.

Ted Kennedy, Living

2009-02-15T00:35:00.001-08:00

Caroline Kennedy hugs her uncle, Ted Kennedy,
after both spoke at the 2008 Democratic National Convention.

I saw a Globe newsbox promo on this series recently, and said to myself, "They're starting the wake a little early."

Several of my colleagues and I were kinda glad that he went to MGH, then Duke, for his surgery. Not that we didn't want to care for him - we very much did. It would have been a privilege. But a VIP's entourage can be a real pain in the ass.

Yeah, he's gonna die at some point. He'll be gone, and nobody will ever fill the shoes he's gonna leave behind. Not another Kennedy, anyway.

But when he does die, I hope it's down in Hyannisport, with fine weather and a soft breeze off the ocean.

I hope the house is filled with a lifetime's worth of family and friends, drifting between the downstairs rooms and the big porch and onto the soft green lawn and into the driveway made from crushed clam and oyster shells crunching underfoot, all quiet and tearful, not from grief but from honor and respect and an appreciation of what they know is going to happen no matter how much they don't want it to.

I hope that the people who know and love him as father, husband, uncle, dearest friend surround him in his final hours and minutes, right to the very end, and that his death is as quiet and peaceful as a gentle exhalation, because surely he's earned at least that.

When Ted Kennedy dies, I'm going to take a moment to silently thank him for his humanity.

After that, as soon as I can, I'm going to pour myself a generous swallow of Tullamore Dew, and a pint glass of Harp or Guiness, or maybe half of each, to toast a life lived as fully as can ever be.

And then, life will go on. Not quite the same, of course. But it will go on.

Until that time, here's a toast to Ted Kennedy, living.

Thanks to mem from somerville for her diary at DailyKos that got me started on this thought.

Updated 2/21/09 by adding the last sentence, because he's not dead.