News and Narratives of Interest-Feb 2013
An article in the fall 2012 issue of the Health Advocacy Bulletin, The Journal of the Health Advocacy Program at Sarah Lawrence College, by Vicki Breitbart, Director of the Program and one of WELC’s Advisory Board Members, addresses a situation experienced by many of us as caregivers for elderly parents.
Vicki’s mother, age 93 and living independently, began to steadily decline, losing sight, hearing, and mobility. When she was admitted to the hospital for surgery, the downward spiral was accelerated by a cascade of interventions, poor communication, uncoordinated care, and challenges to her agency. “With all my knowledge about the health care system, we still were caught in the irrational, uncoordinated and often chaotic care for the elderly ill and dying,” writes Vicki.
[Link to this article and the fall 2012 Health Advocacy Bulletin: http://www.slc.edu/graduate/programs/health-advocacy/Health_Advocacy_Bulletin.html]
In October a series of newspaper articles highlighted the very painful personal and family turmoil felt when a young person’s wish not to be kept alive on life support goes counter to her family’s wish to keep her alive. Grace Lee, 28, was on life support at North Shore Hospital in Long Island with terminal brain cancer when the private conflict she felt between individual autonomy and her family’s wishes became public news on a YouTube video made by the family http://www.youtube.com/watch?v=9I2fAnZg-Bs and in a newspaper article http://www.nydailynews.com/new-york/queens/paralyzed-terminally-ill-patient-fight-death-article-1.1174383. After a court ruling that affirmed Grace Lee’s mental capacity to make her own decisions about her care, Ms. Lee decided, for family and religious reasons, that she would stay on life support, and have her father, a pastor in a Korean church, be her health care agent should she become incapacitated. http://www.nytimes.com/2012/10/07/nyregion/sungeun-grace-lee-changes-her-mind-and-decides-to-stay-on-life-support.html
Another example of a patient making decisions about her own care was published in The New York Times in January by Theresa Brown, a nurse and writer. Brown uses the case of another nurse who was diagnosed with Stage 4 breast cancer and, understanding the tradeoff between quantity of life and quality of life when faced with a poor prognosis, chose to forgo aggressive treatment. Too often, writes Brown, patients do not understand these tradeoffs, and health care providers do not make them clear. http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/?hp
Reinforcing the theme that informed patients, including those who are clinicians themselves, may refuse aggressive treatment when they are faced with their own terminal condition, a California family doctor reports that “Doctors die differently.” “Doctors don’t want to die any more than anyone else does. But they usually have talked about the limits of modern medicine with their families. They want to make sure that, when the time comes, no heroic measures are taken.” http://online.wsj.com/article/SB10001424052970203918304577243321242833962.html
Doctors who wish to support their patient’s wishes about not being treated aggressively at the end of life, are under their own pressure to “do something.” Palliative care specialists, like Diane Meier, recognize that physicians need to learn to give “contemplative” care, “the discipline of being present, of listening before acting,” which is counter to how the American medical system is structured. How can these doctors be supported as they push back against the pressure to “do something.” http://well.blogs.nytimes.com/2012/11/26/aiding-the-doctor-who-feels-cancers-toll/
Ezekiel Emanuel, oncologist and bioethicist, challenges the “conventional wisdom that end-of-life care is an increasingly huge proportion of health care spending.” He writes, “Wrong. Here are the real numbers. The roughly 6 percent of Medicare patients who die each year do make up a large proportion of Medicare costs: 27 to 30 percent. But this figure has not changed significantly in decades. Even hospice care does not save as much as we think. Whether or not they save money, says Emanuel, the health care system should do four things to improve care of the dying.” Read more here: http://opinionator.blogs.nytimes.com/2013/01/03/better-if-not-cheaper-care/ and the response by bioethicist Daniel Callahan challenging Emanuel’s cost analysis here: http://www.nytimes.com/2013/01/11/opinion/costs-of-medical-care-at-the-end-of-life.html?_r=0
Dudley Clendinen is a former national correspondent and editorial writer for The Times, and author of “A Place Called Canterbury.” His blog post is about living with ALS and his decisions about how and when he wishes to end his life. http://abook.org/the-good-short-life-an-essay/
A series on Frontline explores assisted suicide http://www.pbs.org/wgbh/pages/frontline/suicide-plan/
In the November 19, 2012 issue of The New Yorker, Roger Angell shares his thoughts about how the gulf between the living and the dead grows, and “what the dead don’t know piles up, though we don’t notice it at first.” This beautifully written piece about memory, “Over the Wall: A Change of Plan,” explores how time has passed and life has gone on after his wife died. http://www.newyorker.com/reporting/2012/11/19/121119fa_fact_angell (Note: This article is available online only to subscribers, but can also be read at your local library.)
To download this article: News & Narratives of Interest-Feb 2013