End-of-Life Choice, Palliative Care and Counseling

Compassion & Choices Takes Campaign to Honor Patients’ Wishes to Premier Health Care Venuesby Sonja


by Compassion & Choices staff
March 7, 2013

Compassion & Choices staff and advocates elevated the importance of honoring patients’ wishes before several of the most prestigious audiences in the health care field, driving home the imperative to end unwanted medical treatment.

The influential Institute of Medicine (IOM) has re-formed its Committee on Transforming End-of-Life Care, which in 1997 issued a significant report from its previous work. During its first public hearing February 20, Compassion & Choices Chief Program Officer Mickey MacIntyre advised the committee that “many patients’ decisions are overridden or ignored in the weeks and months before their deaths … for a variety of reasons and can lead to invasive and fruitless testing, needless suffering, unrelenting pain and a prolonging of the period before death. Patients are tethered to monitors and machines despite their determination to reject unwanted treatment.”

As the committee makes its recommendations MacIntyre urged that policymakers “provide both the carrot and the stick to ensure that patients’ wishes are honored: financial incentives for honoring advance directives and financial DISincentives for disregarding patients’ expressed wishes.” He also offered a list of specific recommendations to ensure advance directives are honored and medical institutions’ payments are curtailed when they are not. Those are contained in his complete testimony, available here.

Testifying after MacIntyre was Rosalind Kipping, president of the national capital area chapter of Compassion & Choices, who stated that aid in dying “is the self-affirming decision of a person who is dying and can only choose the manner of an imminent death.”

MacIntyre’s warning about unwanted medical treatment was bolstered by newly released research lead by Dr. Joan Teno, a professor at Brown University and a member of the IOM committee, published in the Journal of the American Medical Association (JAMA) that found that between 2000 and 2009, treatment in intensive care units in the last month of life increased from 24% to 29%. The accompanying JAMA editorial concluded, “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.”

Compassion & Choices President Barbara Coombs Lee provides the takeaway for healthcare consumers from the JAMA study in her new blog. She writes: “The advance directive says, essentially, ‘no life-sustaining treatment if I am dying.’ But left to their own habits and sensibilities, doctors define ‘dying’ very, very narrowly. So long as some technology, futile or not, remains in medicine’s bag of tricks, the patient is not ‘dying.’ In this sense, doctors are like a procrastinator putting a task off until tomorrow and believing that, technically speaking, ‘tomorrow’ never comes.”

She urges patients and their advocates to start the difficult conversation: “Doctor, am I dying?” or “Is my mother, father, sister, spouse or other loved one — dying?”

From here, patients and their families are likely to get an honest answer, more likely to get the treatment they want … and less likely to get treatment they don’t want. Read Barbara’s blog here.

Later this month, March 12-15, Compassion & Choices is a co-sponsor of the Aging in America Conference in Chicago. This conference draws thousands of advocates and experts on health care and public policy for older Americans. In addition to reaching attendees in an exhibit booth, Compassion & Choices will convene a session on patient- and family-centered care. Leading experts will join Mickey MacIntyre, including Lynn Feinberg, MSW, Senior Strategic Policy Advisor, AARP Public Policy Institute; Brian Lindberg, MA, Executive Director, Consumer Coalition for Quality Health Care; and Andrew MacPherson, Director of Government Affairs at Jennings Policy Strategy, Inc. More information about the conference can be found here.

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