Palliative Care Grand Rounds - May 2010

I am pleased to host Palliative Care Grand Rounds for May 2010.  As last month’s host, Tim Cousounis, more colorfully explained than I ever could, PCGR is a “monthly (first Wednesday) summary, or mash-up, of thought-provoking, timely, relevant, humane, and exceptionally well-written postings from the blogosphere.”  The objective for the instant post is to highlight some posts made to a wide spectrum of end-of-life blogs during April 2010.

Autobiographical Blogs

Both PalliMed and the Hospice Foundation of America’s Hospice and Caregiving blog collect and comment on some of the growing number of blogs written by individuals living through a terminal illness.  Judi Chamberlain ran this blog through January when she died of a lung condition. Other young women bloggers who recently died include:  Eva Markvoort, Alicia Parlette, and Michelle Mayer. 

I never specifically looked for this before, but was surprised at just how many first-person or family member blogs about dying there now are.  Some are collected here at blogcatalog.

The story of one patient, who was also a palliative care physician, has been widely discussed across the blogosphere.  Buckeye Surgeon, among others, discussed a NYT story about Desiree Pardi, who “chose to pursue every means of aggressive treatment, no matter how futile, up until the very end.”

Practical Patient Advice

April 16^th was National Health Care Decisions Day.  The Compassion & Choices blog offers some language to add to your advance care planning documents in case you are admitted as an inpatient to an institution that will not honor your advance directive due to religious, moral or ethics policies.

At the Palliative Care Blog, Angela Morrow explains how and why “death from kidney failure is considered a ‘gentle death.’”  She provides information you need about dialysis, making the decision to stop it, and dying of kidney failure.

At the American Journal of Bioethics blog, Summer Johnson brings our attention, in “Green in Life, Green in Death,” to a funeral alternative eco-friendlier than cremation and burial:  water resolution.

The Hospice and Caregiving blog brings our attention to the Sesame Workshop’s film, “When Families Grieve,” which presents families’ personal stories about coping with the death of a parent, as well as strategies that have helped these families move forward.  An even fuller review is provided by Fresh Widow.

Check out the Checkout Line, a daily online advice column for the terminally ill, and their friends and relatives.  Every day, it answers questions about dying — how it affects you, how to deal with it.

Practical Provider Advice

The American Bar Association Health Law Section has an excellent new podcast (with superb panelists Richard Payne and Charlie Sabatino) titled “Five Big Myths of Advance Care Planning and How to Stay Anchored in Reality.”  This program addresses the five biggest myths that plague advance care planning and how to steer clear of them and make advance care planning more effective.

• People should use their state’s official advance directive form(s).
• Your advance directive should include as specific instructions as possible.
• Advance Directives are legally binding so doctors have to follow them.
• Doing everything possible for dad means keeping dad alive at all costs.
• A written advance directive is better than talk.

Relatedly, the Alive Hospice blog provides “10 Things Everyone Should Know about Advance Care Planning.

Both for those already in the field and those new to hospice and palliative medicine, GeriPal recommends Palliative Care: Transforming the Care of Serious Illness.  The detailed book review described the book as “a whirlwind tour of the history of the hospice and palliative care movement and how it is reshaping the care given to those with serious illnesses”  It is edited by Diane Meier, Stephen Isaacs, and Robert Hughes, and incorporates some of the very best works that the field has to offer.

At Palliative Chronicle, Judy Littleford suggests using Wordle to monitor ongoing symptom burden in selected patients.  Words (e.g. anxiety, pain, nausea) can be weighted to increase their prominence by font, color scheme and layout.

The new blog of the American Academy of Hospice and Palliative Medicine announced AAHPM’s partnership with ReachMD that helps medical providers stay abreast of new research, treatment protocols and continuing education requirements via XM Satellite Radio Channel 160 and online streaming.  Recent programs in the “Perspectives in Palliative Medicine” series include:

• The Challenges to Pain Management in Geriatric Patients – 04/12/2010, with R. Sean Morrison, MD
• Religious Issues Affecting End of Life Care – 04/05/2010, with Richard Payne, MD
• Palliative Care’s Role in Treatment of the Seriously Ill - 03/29/2010 with Russell K. Portenoy, MD
• Warning Shot: How to Deliver Difficult News – 03/22/2010, with Gail Austin Cooney, MD.

Death Maiden describes the “death rattle,” often referred to as "excessive respiratory secretions.”  It was the subject of her nursing dissertation.

Arts & Literature

PalliMed Arts & Humanities reviews (positively) You Don’t Know Jack, the new film about Jack Kevorkian.  “He pleads a sympathetic case for his cause.”

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Public Policy

Michael Miller, at the Health Policy and Communications Blog, illustrates (through both text and a great cartoon) the challenges of implementing health reform -- how it takes months and years after a law is signed to create the implementing rules and regulations, and to contract with organizations to actually carry out significant parts of the new law.

For the latest on physician aid-in-dying (FKA assisted suicide) developments in Montana and Connecticut, there is probably no better source than the Compassion & Choices blog.

Bernard Freedman discussed funding for physician discussion of end-of-life decisions at Clinical Bioethics Blog.

At his Bioethics Discussion Blog, Dr. Maurice Bernstein collects and reviews three stories in “Looking Back at Terri Schiavo 5 Years Later.” 

He also reprints and comments on President Obama’s April 15^th Memorandum to DHHS to promulgate regulations to protect visitation and healthcare decisions rights of surrogates, including same-sex surrogates.  Carol Levine provides a more detailed analysis at the Hasting Center’s Bioethics Forum.

Next Month

Palliative Care Grand Rounds in June (on Wednesday, June 2) will be hosted at Bedside Manner.  Please submit interesting or enlightening posts by May 28^th to Julie Rosen, Executive Director, The Kenneth B. Schwartz Center (jarosen at partners.org).  The Schwartz Center is an organization dedicated to strengthening the relationship between clinical caregivers and patients.