On this blog, Professor Thaddeus Pope tracks judicial, legislative, policy, and academic developments concerning medical futility and the limits on individual autonomy at the end of life.
"Imagine that it is 2016 and you are a 65 year old boomer. You have been admitted to your local community hospital . . . . You have had blood pressure problems and diabetes for a few years, and have just been diagnosed with renal failure. . . ."
"You feel vaguely uncomfortable as you are placed in . . . the Comfort Care wing of the hospital. In moments of lucidity, you wonder if you shouldn't have some oxygen, an IV or SOMETHING! But the appropriate therapy, kidney dialysis, is not on the approved list of treatment . . . . It was decided at the highest levels that for those over 65 years of age, renal dialysis would not be a beneficial treatment . . . ."
"You signed an advanced directive indicating that you did not want extraordinary care for a terminal condition, and under the new protocols renal failure, although treatable, qualifies as a terminal condition."
An article in today's Lexington Herald-Leader reviews several recent cases in which Kentucky nursing homes "have been cited by state investigators for failing to perform lifesaving measures on residents who had requested that they be resuscitated."
Other nursing homes were cited for ignoring written orders that residents not be resuscitated.
Kentucky is hardly alone. Hospitals and nursing homes regularly fail to comply with advance directives. But why? The legal obligations are clear and many. Compliance is required by Medicare COPs, by state healthcare decisions laws, by licensure laws, by informed consent and battery laws. Is the risk of auditing too low? Are the penalties too low?
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 theAmericanAcademy 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 beenamongst the most popular imagesof 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"
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:theGo Wishcard "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 theArt of Oncology section ofJournal of Clinical Oncology.A recent issue had another discussion abouthope 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.”TheFDA had published amemo on stopping production of highly concentrated liquid morphine and otheropioids.The comments came very quickly after the post went up onPallimedon April 1st. Andthe 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 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.
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)
