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.

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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.

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.

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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.

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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.

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.

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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.
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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."

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

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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.
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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.

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

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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. "

9 comments:

  1. Great job Jerry! Thanks for the kind words for Pallimed. I think you covered a lot of interesting posts here. I can't wait to take a little time and go through them all , but for now I have to finish my talk on Palliative Care Emergencies.

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  2. feel like I just stumbled into a goldmine!! Thanks... now I can't wait to get home from work and start checking them all out- yours included...

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  3. Wow! What a great collection of posts!

    Thanks for including me, and here's a clue on how to pronounce "Øystein" :)

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  4. Thanks so much for the mention, Jerry ~ I am honored! You're a breath of fresh air, and I love your writing style. Thanks, too, for pointing us to some of the best stuff out there. Well done!

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  5. Great job Jerry, lots of stuff here that I already love and more that I didn't even know about! Thanks for including me, but especially for all of your posts.

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  6. Thanks! lots to chew on. Sandwich included.

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  7. I'm thrilled with all the new stuff, honored that my post is a part of this edition and enjoy all the set-ups. Thanks, Jerry, for your splendid hosting this month.

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  8. It took me two days just to digest it all. Thanks for great links and thanks for including GeriPal!

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  9. Great job Jerry! I'll be reading this for the next week, I'm sure. Unfortunately, this month flew under my radar (I can't imagine how that could happen during the Holiday season?!) and I didn't get to send you my submission. I'll post a link here to a beautifully uplifting story I published on my site last month, the story of Baxter the therapy dog.http://dying.about.com/b/2009/11/18/moments-with-baxter-the-hospice-angel.htm

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