Palliative Care Grand Rounds: August 2009

Welcome to the seventh issue of Palliative Care Grand Rounds, a potpourri of insightful, relevant, challenging, oft-times poignant and always well-written postings from the blogosphere. PGR appears the first Wednesday of each month. As your host for August, I admit I have given you a considerable assignment for your mid-summer reading. But there were just so many blogs I wanted to share with you! I don't know where to start! And if you enjoy what you read, don't forget to leave a comment of appreciation--and tell 'em where you heard about their post. (And please forgive my inability to to get the formatting right!)

A number of blogs this month have taken eloquent exception to the outrageously stupid characterization by certain Republican politicians that having end-of-life conversations with patients is tantamount to euthanasia. In his blog, David Fisher, a family physician, does a good job of explaining the proposal to reimburse physicians for having an "advance care planning" discussion with their patients once every 5 years. Fisher even had a run-in with Rush Limbaugh on the topic! Marya Zilberberg, a hospital intensivist, offers a frontline corrective to the Republican nonsense in her blog, What's really killing grandma at Healthcare, etc. Her typical scenario: "The family when consulted of course opts for "everything" without a clear understanding of what that "everything" entails."

Buckeye Surgeon weighs in too, with feeling, "I can't tell you how many times a month I find myself seeing a demented patient in the ICU on pressors, intubated, gorked out, sustained solely by machines and no one knows what to do, no one in the family is prepared to "make the big decision" because no one ever thought to ask the patient when she was lucent: what do you want us to do when you're deathly ill and are unable to make decisions for yourself?"

In his blog, Medical Futility, Thaddeus Pope reflects that patients want guidance from their physicians, pointing out that there is nothing wrong with end-of-life persuasion. And certainly not least, Drew Rosielle, founder of our beloved Pallimed, chimes in with this advice:"I say Be Out, Be Proud, Superb End-of-Life-Care for All - No Apologies!" I agree!

David Cox, blogging at Open Salon, and not a healthcare provider, doesn't mince words when he offers his take on how the wheels of healthcare spin along regardless of the condition of the patient. Describing his father's death, he says, "The surgeon's bill for the operation was over $35,000, and along with the hospital's bill the total was over a hundred thousand. All to keep a dying man alive for twelve more hours."

But if you're not convinced (preaching to the choir, here), Martin Welsh, another doctor, now also a patient with ALS (Lou Gehrig's disease), gives a moving narrative of what it means to think about end-of-life issues when he says, "Today, I find myself facing the kind of 'quality of life' issues I discussed innumerable times with patients." Speaking of ALS, hospice doc Bob Sawicki found himself uncharacteristically watching ESPN on July 4th, appreciating a tribute to Lou Gehrig, 70 years after he made his famous farewell speech at Yankee Stadium. His meditation that "not much has changed" is quite moving.

GeriPal (a blog combining geriatrics and palliative care) has posted two recent blogs about hospice care in the elderly. Nurse Practitioner Patrice Villars critiques the "morphine-and-lorazepam-fix-everything" mentality and reminds us that end-of-life care for the elderly requires a special set of skills and knowledge. Physician Eric Widera rants about innappropriate medications in the hospice setting. His "top 3 potentially inappropriate drugs for use in hospice patients" are: colace, statins, and multivitamins. Physician Roseanne Leipzig wholeheartedly agrees that the health care system deserves failing grades in geriatric care, in her Op Ed piece in the NY Times. Her story of "killing grandma" is the real deal.

Caregivers have a lot to teach us about palliative care. In Alzheimer's: A Caregiver's Story, Open Salon blogger, aim describes being a paid caregiver as a labor of love: "I could not have done this job without allowing myself to fully love him. Now I'm learning how to let go, painfully, one step at a time." In Words from a Witness, Kristin tells of reaching an emotional breaking point as a caregiver for her mother, watching her mother languish in a wheelchair with escalating pain. Hospice volunteer Monique, also blogging at Open Salon, reflects in Visits with Mr. 'M' on the social function of smoking at the nursing home. And, if you haven't yet discovered Gail-Rae's blog, I urge you to visit The Mom and Me Journals. It's a thoughtful, intense, creative, and well-researched gem that you will want to come back to again and again.

Here are some stories about how different people approach dying. I adored this story of the Sisters of Saint Joseph, living in a convent in Pittsford NY, who approach caring for each other at the end of life with the equanimity and faith that was undoubtedly the original impetus for hospice. As Sister Mary Lou Mitchell explains, "We approach our living and our dying in the same way, with discernment." And in Pallimed Arts and Humanities Blog, we hear the story of musician and songwriter Warren Zevon who was diagnosed with mesothelioma and refused any treatment, preferring to finish his final album in the time he had left. In her blog The Good Death, Jessica Knapp shares an email with us from a woman diagnosed with stage IV rectal cancer who, following surgery in 2005, followed a palliative care approach rather than any further cancer treatments. "Had I opted for chemo, followed by liver resection, and then hepatic artery infusion, I would have been long dead", she muses.

On to a few blogs by those angels, hospice nurses. With her usual wry humor, Deathmama tells us about a drunken tuck-in, a nurse fight (sorry, no fistacuffs), arming with pepper spray for psychotic house calls, and Michael Jackson's death, all during a week of 9 deaths. A bit less jaded, NurseTeeny, still a nursing student, explains her intention to become a pediatric palliative care nurse. Teresa Yarbrough, in Alive Hospice Blog, tells us the about the inspiration that brought her, roundabout, to hospice nursing. And hospice RN, Sarah Skiba, in her blog, A Journal of a Hospice Nurse, writes about patients who ask "why is it taking so long to die?" Neuroscience ICU RN Jerry, in his blog Death Club for Cuties (gotta love that moniker), is an ELNEC (End of Life Nursing Education Curriculum) trainer, so I am giving him honorary hospice nurse designation here. In this post, Jerry uses the metaphor of Two Paths through Pines, when talking to patients about comfort measures. With a lovely picture to boot.

Docs get plenty of kudos from me too! In Two Women Blogging, Jay tells us the blessings of a long day of conference calls and home hospice visits. Lovely writing here, as in: "I stood a moment and felt my soul start to uncrumple." Speaking of palliative care docs, don't forget to nominate your favorite! The Hospice Foundation of America Caregiving Blog announced a new award for physicians who show examplary care in advancing end-of-life-care.

Not to leave out social workers! In her blog, Confessions of a Young (looking) Social Worker, LeighSW, a hospice SW, blogs about the special sadness of working with a family about to lose a 13 year old girl and how they make funeral plans, in Small Coffins.

Here is a blog I rate for creativity and loose associations that make me ponder life and death . Shrimplate, an Emergency RN, has a unique way of rambling provocatively about everything, including end-of-life care. She warns, “Before you get so sick that you have to go to the local emergency department, you first have to build a hospital and train and hire the staff.” This, in the midst of telling a story about a makeshift urinal that got stuck.

I hope everyone that hasn't already done so will take a look at the site How We Die. It includes a collection of personal stories, blog-like enough so I thought I would include one here. Cody Curtis 52 years old and diagnosed with cholangiocarcinoma, tells us about considering hastening her death using the death with dignity law. “The outcome is clear in my case. If you’re willing to look at what’s likely to happen, it’s fairly awful. People with this kind of cancer die of massive organ failure and it’s not pretty. The hardest part about the Death with Dignity stuff is deciding when to take the drugs."

Thanks to all my palliative care pals who sent me suggestions for this month's Grand Rounds! For good reading and great commentary, follow your prior hosts of grand rounds!

Christian, Drew, Thomas, and Lyle at Pallimed

Deathmama aat Dethmama Chronicles
Jessica Knapp at The Good Death
Thaddeus Pope at Medical Futility
Angela Morrow at About.com The Palliative Care Blog

Tim Cousounis at http://palliativemedicine.blogspot.com/

PCGR now has subscription options; you can follow by email or RSS feed.

The next PCGR will be out September 2nd and will be hosted by LeighSW who blogs at Confessions of a Young (looking) Social Worker !

Don't forget to check it out!

I died as a mineral and became a plant, I died as plant and rose to animal, I died as animal and I was Man. Why should I fear? When was I less by dying? -Rumi