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.
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.
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.
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.
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.
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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.
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.
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.
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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.
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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.
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.
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.
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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.
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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.
"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."
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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…
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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.
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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?
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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.
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.
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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.
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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.
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. "
Expert nurse for patients and families facing serious illness and end of life. Certified in palliative care and hospice. Experienced in multiple settings, including specialty intensive care (high-risk bone marrow transplant, neuroscience), hemodialysis, inpatient palliative care, and hospice care in the community. Services: case management, consultation, advocacy, and education for clinicians, caregivers, and the community.
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You can even draw upon stuff here for your own material, but please give it proper attribution. It would also be nice to hear from you if you do use anything.
Thanks.
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