Thursday, December 31, 2009

A year ended

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.

Tuesday, December 29, 2009

Closer Grief

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

Monday, December 21, 2009

Blogging about blogging about blogging

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.

Saturday, December 19, 2009

A lesson from the Glimmer Twins

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.


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.

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

Tuesday, December 1, 2009

Palliative Care Grand Rounds 1.11

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. "

Thursday, November 26, 2009


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

Friday, November 13, 2009

My First ELNEC Presentation (lengthy post)

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.

Monday, November 2, 2009

Busy, busy, busy

Social Media Venn Diagram T-Shirt

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.

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

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

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.

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.

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.

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.

Saturday, October 31, 2009

Failed Kidneys, Hangnails, Living, and Dying

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.

Saturday, October 24, 2009

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

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 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."