Readings & Links

The Cost Issue Death & Dying End-of-Life Care Palliative Medicine Living Wills Books Additional Resources

THE COST ISSUE

• Weighing Medical Costs of End-Of Life Care How much money is being wasted on needless tests, useless procedures at the end of life? It's hard to know which critically ill patients will benefit from these measures and which will not. That distinction needs to be made clear when considering only the costs of treating patients who have died. What about the ones who survive? (From The New York Times' series "Months to Live," Dec. 22, 2009)
• Researchers Find Huge Variations in End-of-life Treatment Another New York Times article: "New research shows huge, unexplained variations in the amount, intensity and cost of care provided to Medicare patients with chronic illnesses at the nation's top academic medical centers, raising the possibility that the government could save large amounts of money." (April 7, 2008)
• The Cost of Dying: End-of-Life Care A 2009 60 Minutes report analyzing the cost of end-of-life care -- with more than $50 billion in Medicare funds spent on the last two months of patients' lives in 2008 -- and asks if there's a better way for United States to spend its health care dollars. (Nov. 22, 2009)
• Debating the Ethics of Rationing End-of-Life Care View or read the transcript from a PBS NewsHour-moderated debate at the University of Virginia's Miller Center of Public Affairs. Featured participants are Ira Byock, a doctor and director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon N.H., and Ken Connor, a lawyer who represented former Gov. Jeb Bush's defense of Terri's law, the legislation named for Terri Schiavo. (April 26, 2010)

DEATH & DYING

• Illness As More Than Metaphor An excerpt from David Rieff's insightful memoir on the last months of his mother Susan Sontag's life: "There are those who can reconcile themselves to death and those who can't. Increasingly, I've come to think that it is one of the most important ways the world divides up. Anecdotally, after all those hours I spent in doctors' outer offices and in hospital lobbies, cafeterias and family rooms, my sense is that the loved ones of desperately ill people divide the same way."
• Talking Often, and Calmly About Dying Dr. Pauline Chen's blog post about caring for a patient during his final days: "The truth is that we never talk or even want to think about talking about dying because we are afraid of dashing our loved one's or our patient's hopes. The truth is that we fear -- even abhor -- these discussions because we believe that by talking about dying we are giving up."
• Dying Words Through one patient's story, Dr. Jerome Groopman reflects on the issues surrounding doctor-patient conversations at the end of life and questions whether there really is a "best approach" in telling a patient that the end of her life is near. "After caring for patients with advanced cancers for more than twenty-five years, I have told nearly five hundred people that they were going to die …"
• What Broke My Father's Heart Another from The New York Times, this poignant piece from Katy Butler chronicles her family's journey both before and after her father is outfitted with a pacemaker, a device that keeps him alive despite his dramatic decline in health. (June 18, 2010)
• The Politics of Death For a political and historical perspective, The New Yorker's Jill Lepore explores why Americans are preoccupied with life and death issues, focusing on the 1975 case of a comatose teenager, Karen Quinlan, whose family went to court after doctors refused their request to remove her from her respirator. (Nov. 30, 2009)

END-OF-LIFE CARE

• Letting Go What can medicine do when it can't save your life? The New Yorker's Atul Gawande maintains modern medicine needs to focus more on improving the days that terminal patients have left, rather than on aggressive interventions. (Aug. 2, 2010)
• Improving End of Life Care: Why Has It Been So Difficult? A collection of essays by bioethicists, legal scholars and physicians from The Hastings Center, "a nonpartisan research institution dedicated to bioethics and the public interest since 1969."
• Long-Term Care Hospitals Face Little Scrutiny A February 2010 New York Times investigation into the explosion of long-term care facilities and the lack of oversight plaguing the industry. Includes a graphic showing the growth of long-term care facilities since 1996.
• Controversies in the Determination of Death The President's Council on Bioethics' white paper on how medical technology is shaping the medical, philosophical and ethical debate surrounding the definition of death. (December 2008)

PALLIATIVE MEDICINE

• At the End, Offering Not a Cure but Comfort Published as part of The New York Times' "Months to Live" series, this piece profiles palliative care doctors and their patients. Included are accounts of how doctors deliver "a grim prognosis" to patients and their families, as well as information on lessons learned, hospice care and resistance about palliative care from some doctors. (Aug. 20, 2009)
• Helping Patients Face Death, She Fought to Live This article, also part of the "Months to Live" series, profiles a leading palliative care doctor and cancer survivor who, in her late 40s, experiences a recurrence of her disease and is confronted with her own personal struggle about stopping treatment. (The New York Times, April 3, 2010)
• New Studies in Palliative Care An hour-long radio program from WAMU's Diane Rehm discussing new research in palliative care with four experts, including Dr. Diane Meier, director of Mount Sinai's Center to Advance Palliative Care, and Harvard's Dr. Atul Gawande. (Aug. 24, 2010)
• 8 Facts to Know About Palliative Care This article lays out the basics on palliative care -- and some of its misconceptions -- and offers useful, easy-to-follow advice from leading doctors around the country. Above all, the message is: Start the conversation early. (U.S. News & World Report, Aug. 25, 2009)
• American Academy of Hospice and Palliative Medicine AAHPM supports a site just for patients, with extensive information about palliative care -- what it is, what it can offer and when to seek hospice treatment.
• Center to Advance Palliative Care CAPC at the Mount Sinai School of Medicine is a leading resource for those seeking to develop, implement, and run palliative care programs, offering toolkits, education and information for health care professionals. For patients and families, CAPC offers this comprehensive site, with a directory of palliative care providers by state. The CAPC also has this state-by-state report card that rates palliative care programs on a regional and national level.
• National Hospice and Palliative Care Organization A nonprofit membership organization for hospice and palliative care programs and professionals, NHPCO offers members education, research and advocacy services and tools through its site. NHPCO also runs Caring Connections, a national consumer and community engagement initiative that offers information for patients and families, including an online search tool for local hospice and palliative care providers. It also provides free advance directives, or "living wills," with instructions for each state.

LIVING WILLS

• Five Years After Schiavo, Few Make End of Life Plans A 2010 AP story on why only 20 to 30 percent of Americans report having an advance directive such as a living will. According to the article, "Much of the problem with advance directives is people aren't entirely sure what they do, or fear they mean they'd be forced to forgo lifesaving treatment." (March 30, 2010)
• Overview on Living Wills and Intensive Care This research from the online intensive care journal Critical Care explores why, even when patients have an advance directive, physicians are often unaware of their patients' end-of-life preferences. One large-scale study found that only 25 percent of physicians knew their patients had advance directives on file. (July 11, 2007)

BOOKS

Byock, Ira. Dying Well: Peace and Possibility at the End of Life

Callahan, Daniel. The Troubled Dream of Life: In Search of a Peaceful Death

Groopman, Jerome. The Anatomy of Hope: How People Prevail in the Face of Illness

Lynne, Joanne. Handbook for Mortals: Guidance for People Facing Serious Illness

Kaufman, Sharon. And a Time to Die: How American Hospitals Shape the End of Life

Ofri, Danielle. Singular Intimacies: Becoming a Doctor at Bellevue

Nuland, Sherman. How We Die -- Reflections on Life's Final Chapter

Reiff, David. Swimming in a Sea of Death: A Son's Memoir

ADDITIONAL RESOURCES

• The Dartmouth Atlas of Health Care This site provices comprehensive research on disparities in end-of-life medical spending broken down by region, race, sex, class and age.
• The Hastings Center A bioethics think tank dedicated to improving the quality of end-of-life care, its website offers in-depth readings, reports and analysis of the latest developments in the field.
• The Robert Wood Johnson Foundation This nonprofit provides a comprehensive guide to the latest research and policy briefs on end of life and palliative care.