Disability Group Urges IOM to Remedy “Glaring Omission” in Membership on End-of-Life Committee

On Tuesday, January 29, 2013, Not Dead Yet submitted recommendations that two new members be appointed to the Institute of Medicine’s recently formed Committee on Transforming End-of-Life Care to remedy what it called “glaring omissions.” The group recommended Kelly Buckland, Executive Director of the National Council on Independent Living, and Dr. Ira Byock, Director of Palliative Medicine at Dartmouth Hitchcock Medical Center.

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Kelly Buckland, National Council on Independent Living

Not Dead Yet Recommendations: ". . . [T]he factors impacting people with life threatening health conditions very often derive from the presence of disabilities that accompany a terminal illness."

Rochester, NY (PRWEB) January 30, 2013

On Tuesday, January 29, 2013, Not Dead Yet submitted recommendations that two new members be appointed to the Institute of Medicine’s recently formed Committee on Transforming End-of-Life Care to remedy what it called “glaring omissions”. The group recommended Kelly Buckland, Executive Director of the National Council on Independent Living, and Dr. Ira Byock, Director of Palliative Medicine at Dartmouth Hitchcock Medical Center.

“We recognize that the existing appointments may be considered to be sufficient,” said Diane Coleman, President and CEO of Not Dead Yet, “but we hope that the appointing authority will not only find the proposed candidates eminently qualified, but recognize that it would be a glaring omission to leave them out of the Committee.”

The IOM first examined the issue in its 1997 report Approaching Death: Improving Care at the End of Life. An online description of the project describes its mission and rationale as follows:

“While the 1997 IOM Report made important and wide sweeping recommendations, progress in implementing them has been slow. . . .Given the importance of death and dying to our citizens and our nation, the IOM plans to examine the current state of end-of-life care with respect to delivery of medical care and social support; patient-family-provider communication of values and preferences; advance care planning; health care cost, financing and reimbursement; and education of health professionals, patients and their loved ones. The study will also explore approaches to advance the issues surrounding the end of life from a wide variety of perspectives including clinical care and delivery, resources and workforce, economics, spirituality and compassion.”

Public comment on the list of provisional appointments to the Committee was requested in the form of online submission.

“Our highest priority is the addition of a qualified disability expert to the Committee,” Coleman added. In submitting its recommendation of Kelly Buckland, Executive Director of the National Council on Independent Living, Not Dead Yet provided the following explanation:

“While the relevance of [disability] may not be immediately obvious, the factors impacting people with life threatening health conditions very often derive from the presence of disabilities that accompany a terminal illness. While people may not immediately think ‘disability’ when they think of terminal illnesses, functional losses and the need for assistance in the activities of daily living are central issues in advanced terminal illness, and that means disability is a central issue. Disability experts in the field of independent living are people with disabilities who have first hand experience in how to maximize functional activities despite impairments, how to use adaptive devices and technology, how to maintain a sense of personal control and how to achieve the best possible ‘quality of life’.”

The group also recommended Dr. Ira Byock, M.D., a palliative care physician and long-time public advocate for improving care through the end of life. His books on the subject of improving end of life care include Dying Well(1997), The Four Things That Matter Most (2004) and The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (2012).

“Dr. Byock demonstrates a deep respect for the individual, and his methods reflect the best values in person centered care,” said Stephen Drake, Not Dead Yet’s research analyst. “If I were terminally ill, I would want him as my doctor.”


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