Wednesday, May 6, 2009

Palliative Care Grand Rounds v4

Welcome to the 4th edition of Palliative Care Grand Rounds.  Palliative Care Grand Rounds is published the first Wednesday of every month by a different host.  Next month, it will be hosted by Angela Morrow, RN at the About.com Palliative Care Blog.  Incidentally, today is National Nurses Day, and Angela has 10 Ways to Show Your Appreciation. 

Given the huge number of interesting, compelling, inspiring, and educational posts; I tried to group them into categories to make things more manageable and navigable. 

Healthcare Provider Experiences

At Healspiel, a Los Angeles medical student describes an experience that she had with a young woman dying of breast cancer. 

At MormomMD, a Child Neurologist (in training) reflects on some recent experiences in “The Long Slow Goodbye.”    

At the blog of the Center for Practical Bioethics, Rosemary Flanigan discusses a case involving a fifty-nine-year-old male who was being readmitted to the hospital from a nursing home because he has gangrene of three right toes and both his heels.  He is being told that amputation is necessary . . . . What does he say?  ‘Let’s wait it out.’ And his family concurs.  Well, of course, the doctors wondered at his capacity, and voila! didn’t they discover that nine years ago, the family chose not to be his legal guardian so he was appointed one. So shouldn’t the team contact the guardian?”

At KevinMD -- If you think medical school is already difficult, try doing it while battling leukemia.  That is the situation facing Yale medical student Natasha Collins.

At the Froedtert & Medical College of Wisconsin Reading Room, Dr. Bruce Campbell reviews the fictional “Fourteen Stories” by Jay Baruch.  “As I listen to my patient run through the latest disasters, I wonder how I could share her story, honestly and reflectively, in a way that betrays nothing of the patient’s private experience. . . .  I decide to pass on turning this woman's difficult struggles into an essay. Maybe a small piece of it will end up in a work of fiction someday.”

MedScape Nursing (okay, not a blog) interviewed Dr. Porter Storey, executive vice president of the American Academy of Hospice and Palliative Medicine.  We're growing so fast that it's becoming difficult to find doctors to fill the palliative-care need.”  He advises physicians:  “If you're considering being trained or certified in palliative care, now is the time to do it.”

Family Experiences

At Words from a Witness, Kristen reviews an NPR interview with Dr. Robert Martenson about his book entitled A Life Worth Living:A Doctor’s Reflections on Illness in a High-Tech Era.  Kristen then relates the discussion to her mother’s own cancer treatment.  “Her doctor is fabulous, and does spend time with my mother to discuss treatments, but it is within the context of prolonging her life (a noble and worthwhile goal, obviously).  But the conversation exists almost wholly apart from the fact that this is a terminal illness.”

The Bioethics Blog addresses a mother in Texas who wants to posthumously extract sperm from her son.

Over at Risa's Pieces, Risaden has a fantastic entry on pain and missing kidney dialysis due to pain.

Over at Chris’s Space, a young male widower has a very poignant post about being a year out form a death.  Harvey and I have just reached the 12 month barrier. This time last year I was helping Harvey understand that Jo had just died. . . .  Harvey has turned six (nearly seven now) . . . .”

Over at the Checkout Line, Lacy asks Judy:  “My father . . . was pretty insistent that “Do Not Resuscitate” meant what it said.  Guess what happened? . . . They completely ignored his DNR card which he always kept with him, and restarted his heart.”  Judy explains “Only a doctor can issue a DNR.”

At Mothering Mother and More, Carol O'Dell writes about finding a community of Parkinson's caregivers.

At More than Meets the Eye, Yvonne Perry, discussed using tattoos as a memorial.  “This growing use of memorial tattoos is making something of a comeback. Historically, these have been amongst the most popular images of body art. People have always needed a way to grieve, honor and remember lost loved ones and tattoos have provided a very personalized way to memorialize someone.”

Buck Bannister, Oregon Man Thrown Out of Partner's Hospital Room  How are traveling nurses to be adequately "educated" on scores of local and state laws about "domestic partnerships" or "civil unions"

Over at InSicknessInHealth, Barbara Kivowitz has a three-part article dealing with the "caregiver/partner as jerk":  What if Your Partner is a Jerk? and Part Two and Part Three.

The Mom and Med Journals provides a lay exploration of Broken Heart Syndrome, prompted by its recent mention on an episode rerun of the television program House. The post includes the dialog from the episode mentioning the diagnosis, discussion of and links to online literature about research into Broken Heart Syndrome and personal speculation about BHS and its applicability to grief, mine and others

The Mom and Me Journals also discusses covers the grief assessment tool, Texas Revised Inventory of Grief, including: (i) links to two version of it, (ii) a review of its popularity, (iii) how it is used and scored, and (iv) speculation about using it for self-assessment.  Also included are the contents of the TRIG with the results of her own self-administered TRIG grief profile, including: (i) her thoughts as she considered each statement, (ii) her perceptions about what her overall scores mean, (iii) her reactions to taking it, (iv) why she rated each statement as she did, and (v) criticism of the scoring as an accurate portrayal of a grief response. 

At Pallimed: Arts & Humanties, Amy Clarkson examines how Spanish painter Francisco Goya’s close call with death affected his painting.  She earlier examined how Franz Schubert’s deteriorating health after contracting syphilis affected his music.

At Goodbyes, Debra Bradley Ruder posts and describes a story about a labor and delivery nurse who sews tiny outfits for the rare times when a baby in her hospital doesn't make it.  Then the nurse’s own son dies.  “Heartbreakingly powerful.”

Hospice

Dr. David Tribble, the Chief medical Officer at Alive Hospice, blog at the Alive Hospice Blog about how hospices have “grown up.”  In hospice care, the main thing is still compassionate, capable end-of-life care for all who need it.”

  • We have ongoing clinical research which allows us to apply real data to our decision making in terms of efficacy of interventions, prognosis in various diseases, and such.
  • With the advent of the Medicare Hospice Benefit, agencies that had to struggle to provide minimal care on donated dollars now can provide sophisticated end-of-life care involving the use of complex treatments the originators of hospice in America never had available.
  • Hospice and Palliative Medicine has achieved recognition as a subspecialty for physicians, with a certification process now approved by the American Board of Medical Specialties.
  • There is now good information that hospice care is not associated with earlier death, but rather with better survival.

At the Alive Hospice Blog, Jan Jones, the President and CEO of Alive Hospice, describes her experience “riding along with one of her awesome social workers . . . as he visited with several of our patients and families.”  “I went home that afternoon full of excitement for what I am blessed to do and full of love and appreciation for those with whom I work and those whom we serve.”

Fran Johns has a beautiful post on facing death honestly and with compassion, from the example of visiting two men in a VA hospice care facility.

Sherri Stinson, a hospice volunteer, blogs at the Alive Hospice Blog, about the “pleasure of being invited into those last sacred moments of a person’s life. What an honor! We can’t change a person’s outcome, but we can make it more comfortable and peaceful for the patient, family and friends.”

More on hospice volunteers from the Hospice Foundation of America:

The Alive Hospice Blog has a short piece with tips on how hospice workers can take care of themselves.

Communication

At GrowthHouse, Les Morgan discusses one of his favorite tools for advance care planning:  the Go Wish card "game" provided by the nice folks over at the CODA Alliance.  The game is a set of 36 cards, each with a short statement of things people often cite as being important to them in the last weeks or months of life. The format is similar to playing cards, and referring to it as a "game" helps make it less scary to think about the subject. 

Over at Pallimed, Drew Rosielle has an interesting case study on hope and truth-telling.

The blog of the Hospice Foundation of America has a piece that discusses a new study which sadly shows, at many hospitals, doctors are choosing not to use interpretation services.

Hospice Doctor, blogged by an anonymous hospice doc, has a great post on trying to mediate between the wishes of family and the patient.

At Pallimed, Drew Rosielle reviews observes that “some of the best 'conversations' in journals right now about cancer communication are happening in the Art of Oncology section of Journal of Clinical Oncology. A recent issue had another discussion about hope and truth-telling, relating a story of a young woman dying of cancer.”  Drew carefully and critically examines both sides of this case.

Policy

Over at The Treatment, Jonathan Cohn discusses David Leonhardt's latest interview with President Obama in the New York Times: “I give Obama enormous credit for talking about this, and not just because he's obviously developed a very sophisticated sense of health care policy. The mere mention of treatment guidelines and end-of-life care invites demogoguery; rest assured, there will be right-wingers pouncing on the above statements as proof that Obama wants to pull the plug on every sick person over 65.  He doesn't, of course. He simply realizes this is a conversation we need to have. And it appears he's determined to start it, notwithstanding the political peril.” 

Of course, those in positions of authority and influence listen when President Obama speaks.  But they also listen when blog readers communicate.  At Pallimed, Christian Sinclear discussed the “Role of Social Networks in FDA Morphine Reversal.”  The FDA had published a memo on stopping production of highly concentrated liquid morphine and other opioids. The comments came very quickly after the post went up on Pallimed on April 1st. And the FDA reversed the decision.  Christian flags “the role of social networking in getting this message out” and put together a slide show to review the events and how we can learn from this event.

At the Bioethics Discussion Blog, Dr. Maurice Bernstein asks: What is Death?  Is Brain Dead Dead Enough?  A question prompted by the recent publication of the white paper of the President's Council on Bioethics and D. Alan Shewmon’s article "Brain Death: Can It be Resuscitated?" in the March-April 2009 issue of The Hastings Center Report.

Over at the Placebo Journal Blog: Medical Humor with a Purpose, Michael Gorback reviews the legal and policy history of marijuana legalization and criminalization.

At Angela Morrow's Palliative Care Blog, she answers some Frequently Asked Questions about Medical Marijuana. 

Arts

At the BMJ Medical Humanities blog, Deborah Kirklin recommends: Two Lovers: a film about love, loss and living on the edge.  “If you’re drowning, literally and metaphorically, and if breathing out for one last time seems the least painful choice, choosing to breath in, knowing all too well the pain that will follow, must surely take courage and then some.  And isn’t there something absurd about risking loving, no matter how sweet, when the pain of its loss has already proved itself beyond bearing?” 

At Pallimed: Arts & Humanities, Amber Wolleson, discusses the end of the television series ER.  She was “pleasantly surprised” to find several palliative care themed plot lines in the final episode.  “I think that death is commonly dealt with on ER but what I find interesting in this episode is how it is dealt with more as a natural part of life, not always a struggle. Comfort is actually brought up in both of the last two story lines I mentioned. So, farewell ER! While I haven't been a devoted follower, I am a fan of this episode.”

On the Lighter (or Alternative) Side

In Defiance of Death...How Far Will We Go? Dethmama I was very inspired by Jessica Knapp's post, Cryonics in which she points to a fascinating episode of This American Life that deals with the screw-ups and very shaky ethics of cryonics enthusiast, Bob Nelson. Dethmam then started me on a search regarding the subject of head transplants and grafts. I didn't have to look far... and what I found was not the least bit funny.

KevinMD answers the age-old question, Can you electrocute yourself from peeing?  The answer – from a German collection of 30 illustrations showing how you can die from electrocution

Over at the Mental Floss Blog, Maggie Koerth-Baker teaches you 10 Things Your Body Can Do After You Die.  From getting hitched to saving the environment, here’s proof you can still be a busybody long after you kick the bucket.”

Perhaps aiming to balance out Mental Floss’ list of things your body can do after you die, at Improbable Research, Marc Abrahams identifies at least one thing that you CANNOT do after you die:  adopt your niece.  An 89-year old man had begun adoption proceedings but then died.  Circuit Judge Steven Levin granted the adoption three days after the man’s death, seemingly giving her rights to both his and his deceased wife’s estates and trusts. 

Dethmama Chronicles: The True Adventures of a Hospice Nurse posts Enema Addict Meets Enema Enabler, in which she very colorfully describes how she was having one of those "theme nights" – “the patients were providing a veritable potpourri of gastro-intestinal delights.”

About Palliative Care Grand Rounds

PCGR now has subscription options; you can follow by email or RSS feed.  An aggregated feed of credible, rotating health and medicine blog carnivals is also available. Angela Morrow at About.com Palliative Care will be hosting next on June 3rd so please send her any good links (email  dying.guide@about.com). Christian needs hosts for the upcoming months of PCGR (email ctsinclair@gmail.com)

22 comments:

Christian Sinclair, MD said...

Awesome set of links. And great quick summaries to understand if it is of interest or not. You have set the bar high my friend! I am off to tell other people about this!

Gail Rae said...

I'm off to "alert the media", as well; and working my way through the posts (multi-tasking becomes me, I hope). Thanks! Grand, grand round!

Angel said...

Great job Thaddeus! There's enough great reading here to last me a week! I'll put the word out too.

risaden said...

What Christian said. This is fantastic! Now I'll never be able to host a grand rounds, that bar is way too high! But really, thank you, lot's of new stuff, new people, worthwhile pieces, great commentary.

Thaddeus Mason Pope said...

I have to say that the process of reviewing suggestions and just looking beyond the ledge of my usual feeds was rewarding. I got both to see new issues and to see familiar issues approached from fresh perspectives.

I hope that the simple task of collecting, organizing, and editing a collection of links can help a few readers to similarly broaden their take on these topics -- and perhaps discover a new blog to follow.

LeighSW said...

Very impressive collection! I can't wait to check out all the links...in my spare time:)

Dr. D said...

Thank you for the wonderful articles. Who knew you tube has such great stuff????

Jessica Knapp said...

This is amazing! Great work. I know what you mean about finding it rewarding to go through all of the links and suggestions.

My favorite part about this whole endeavor is that it's really starting to make it look like there's an actual community of bloggers out there working on palliative care, death, dying, etc.

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