I am pleased and honored to host Palliative Care Grand Rounds for March 2010, highlighting the best of the end-of-life care blogs from February. Although there was an impressive volume of web activity, links and sites to sort through, and tons more great material than I could hope to include here, it has motivated me to dig deeper into this medium. I am not the most prolific of the bloggers who belong to this community, but the inspiration for bigger things now lies at my fingertips.
Good reading — and good inspiration for your own blogging. Let's start with the topic of social media themselves.
The American Academy of Hospice and Palliative Medicine launched a new group blog (www.aahpmblog.org) stirring up interest in its annual meeting in Boston, which starts March 3, 2010. I should also mention that the conference includes a workshop on social media in palliative care communities, with presenters from the Pallimed and GeriPal blog pages — stalwarts of this blogging community — March 5 at 7 am. The Pallimed blog (www.pallimed.org) in February and March offered several features for AAHPM conference novices, variously addressing conference twittering, networking, handy hints for how to "do" a national meeting, how to give a great medical presentation, and information about the Pallimed "street teams" that will be pushing "P" stickers in Boston. I wish I could be there with them.
The Growth House blogging portal has announced (http://growthhouse.typepad.com/les_morgan/2010/02/growth-house-needs-bloggers.html) that it is looking to add more guest bloggers to ensure that all of the disciplines in hospice and palliative care are represented. Hospice and palliative care professionals that would like to learn more about becoming guest bloggers may call Growth House at 415/863-3045. Growth House President Les Morgan just posted a blog piece about a major international study of national palliative care guidelines and end-of-life care practice statements in BMC Palliative Care. The study concludes that "an integrated model of the best palliative care practice is generally lacking" in the 56 documents analyzed, although that may reflect inevitable issues of context, such as specific cultural settings and patient variables.
Speaking of blogging and other social media, a member of our community, Jerry Soucy, an ICU nurse and grad student who blogs at Death Club for Cuties (http://deathclubforcuties.blogspot.com/), has just completed a comprehensive and occasionally irreverent research paper on blogging as an assignment for nursing grad school, entitled "Bloggers blogging blogs: Who we are, what we're doing, and what happens next." He writes about the assignment at his death club blog and has posted the full paper at a second site. He defines blogging and how it developed in the context of advances in information technology, concluding that "everything is tied to everything else — in multiple ways"; and "blogging is all about self-discovery." The blogger, he explains, is today's equivalent of the writer, publisher, distributor, bookstore/newsstand proprietor, media producer and researcher in one.
In the shadow of the national health care reform imbroglio, end-of-life care, DNR (do not resuscitate) orders, advance directives, when is it appropriate to do "everything" medically possible, and all points in between are getting unprecedented attention and debate. Thaddeus Pope's Medical Futility Blog (http://medicalfutility.blogspot.com) posting, "Not so fast with that DNR order", reviews two new articles taking what seems to be an unconventional approach to DNR orders, extolling "the benefits of proceeding with CPR even against steep odds." Writes Boris Veysman in Health Affairs: "Only after you have made every effort to let me be happy and human, ask me again if my life is worth living." That would seem a reasonable threshhold for making life-and-death decisions, except when you consider the realities of the full press of battle in an ER or ICU.
Both Pope and Lyle Fettig at PalliMed cite the recent, impassioned MSNBC opinion piece by Keith Olbermann about health care reform, "death panels," advance care planning, palliative care and his own father's suffering from advanced illness. Dr. Fettig further analyzes the underlying issues — including the benefits and limitations of advance care planning and advance directives. He also highlights a new journalistic treatment of end-of-life care by Michael Vitez in the Feb. 28 Philadelphia Inquirer. Vitez won a Pulitzer prize in 1997 for a series of articles on this same topic.
Francis Shani Parker's Hospice and Nursing Homes Blog (http://hospiceandnursinghomes.blogspot.com) highlights two short films about marginalized populations at the end of life. The first is a six-minute video from an unfinished documentary, "Prison Terminal," by Edgar A. Barens, portraying the "Sail to Serenity" hospice volunteer program at Iowa State Penitentiary. Except for captions, the film is wordless, although the faces of dying patients and volunteers, many of them lifers, and visiting family members, are eloquent.
The second is "Gen Silent," a Stu Maddox film about homophobia in nursing homes, long-term care and assisted living. Vulnerable Lesbian-Gay-Bisexual-Transgender elders, quite understandably, may feel compelled to return to the closet when they need long-term care, simply to survive in LGBT-hostile environments. This results in even more alienation and isolation than other LTC residents experience. Hospice Foundation of America's Hospice and Caregiving Blog (http://hfahospice.blogspot.com/) also cites the Maddox film but offers examples of positive advances such as a Massachusetts nursing home specifically for LGBT elders and a specialized LGBT bereavement support group offered by a Connecticut hospice.
HFA's blog also pointed me to a Milwaukee Courier article by Clarene Mitchell, community liaison for VITAS Innovative Hospice Care, listing 10 prominent African Americans who received hospice care. A fascinating article in the Wichita Falls Times Record News describes how Hospice of Wichita Falls is attempting to improve its outreach to culturally diverse communities by working with Elaine Magruder of Volunteers International. Magruder spent 15 years trying to organize hospice services and a national hospice organization in Vietnam, where today palliative care is offered in every hospital. "Now we realize we can bring the lessons we learned there back to the U.S. to help hospice services reach a much more diverse community,” she says.
Other Caregiving Perspectives
Through our near neighbors at the EldercareABC Blog Carnival, I found Tom Bill's In-Law Suite (http://in-lawsuite.com), a blog about how the author's family used a residential, in-law apartment built into the garage to bring his elderly mother-in-law into their home to get the contact and attention she needed without sacrificing the family's privacy. A recent post addresses signs, symptoms and care for depression in the elderly. It offers a down-to-earth discussion of this woefully underrecognized symptom of chronic illness, its causes, how to deal with it, how to help, and when to seek professional assistance.
Englishman Malcolm Payne at the St. Christopher's Blog (http://blogs.stchristophers.org.uk/one/) just returned from a conference in Japan on holism in palliative care, pondering what that really means, given that holism too often fails to get beyond "the slogan of togetherness."
Debra Bradley Ruder's Goodbyes Blog at Growth House (http://growthhouse.typepad.com/goodbyes/) tells a simple story she heard from the locksmith at Dana-Farber Cancer Institute about an unforgettable encounter he had with a patient, who "taught me not to take life for granted."
Angela Morrow's Palliative Care blog (http://dying.about.com) talks about "nearing death awareness" in patients who report seeing dead loved ones or predict the time of their own death — and how to make sense of this phenomenon, which is commonly reported in hospice.
A recent blog by Hospice Physician (http://hospicephysician.wordpress.com) says frustrating encounters with family members can sometimes leave a palliative care professional with little choice but to take a deep breath and go home to his or her own family, remembering that families often make decisions that the professional might not agree with.
At GeriPal, nurse practitioner Patrice Villars offers a call for hospice reform, with nurse practitioners leading the way. Villars was a hospice nurse for eight years before getting her NP degree, and thinks NPs can be the "middle children" and bridge to better symptom management in hospice care, with their advanced training in medical diagnostics and treatment giving them the ability to think in terms of diferential diagnoses, like a physician, while retaining the holistic philosophy of a nurse. "Surprisingly, NPs do not play a pivotal role in most community hospice agencies," she notes. But I wonder how many HPM-specialized NPs are out there today, ready to fill that pivotal role in America's 4,000+ hospices.
Scanning Google Reader led me to two articles about dementia by Frena Gray-Davidson, who tries to describe what it might be like to have dementia, based on her years as a long-term Alzheimer's caregiver. At her blog, Soul of Dementia, she teaches the realities of dementia and "the art and psychology of understanding what is not lost" in patients who have dementia. She is also a seminar presenter and author of the book, "Alzheimer's 911: Hope, Help and Healing for Caregivers."
I was really touched by two searingly honest, ongoing multi-part blog conversations by young widows with young children, both of them trying to make sense of where fate has taken them. In Fresh Widow (http://freshwidow.blogspot.com) the blogger Supa Dupa Fresh has written a "where you came from" series dedicated to her six-year-old daughter, Short Stack, entitled "Your Birth Story," although knowing that her husband Gavin will die from cancer 30 months after the birth casts a deep shadow across the whole series:
- Part 1(http://freshwidow.blogspot.com/2010/02/your-birth-story-part-1.html)
- Part 2(http://freshwidow.blogspot.com/2010/02/your-birth-story-part-2.html)
- Part 3(http://freshwidow.blogspot.com/2010/02/your-birth-story-part-3.html)
- Part 4(http://freshwidow.blogspot.com/2010/03/your-birth-story-part-4-afterbirth.html)
It poignantly conveys to me (who hasn't had the experience) the chaos and crazy thinking of childbirth from inside the maelstrom. After what seemed like endless labor, Supa Dupa Fresh writes, she exhaled for five counts and "Whoosh!! My daughter zoomed out like a torpedo." Later, the daughter is "a little rosy burrito, packaged in the hospital's neutral striped blanket."
At Widow Wise (http://widowwise.blogspot.com), Gretchen Olchawa talks about how she and her husband Kevin painstakingly discussed and then decided to pursue in vitro fertilization following his first round of treatment for rectal cancer and during his three-year struggle with the disease, in "The Great IVF Debate" Parts 1-4. The latest posted on Feb. 26. "Most people get that permanence thing when they have a child. I think it becomes more profound when... death is actually residing in the house."
I didn't set out to do a comprehensive survey of young widowhood, although I personally know a wonderful young woman whose vibrant husband lost his life in a climbing accident just months after their wedding in Yosemite Park. We often hear about the parallels between birthing and dying, but these blogs really bring that lofty sentiment down to earth. I also want to cite Crash Course Widow (http://crashcoursewidow.blogspot.com) who was 27 in 2005 when her husband crashed a bicycle into a pole and died instantly. Her posting on Valentine's Day for 2010 includes cute pictures of her husband and daughter from Valentine's Day 2005, shortly before something changed everything for them.
A blogger named Star, aged 29, calls her blog And you may ask hourself — well... how did I get here? (http://sumstarles.blogspot.com). Her husband Roger died following a car crash six months after their wedding. In a recent posting, she addresses her ongoing hurt feelings about a well-intended gift bag delivered from the Brain Injury Association (http://www.biausa.org/) a day after the accident, five days before his death, urging her to have hope. These sites by young widows will point you to plenty more.