Not Dead Yet Comment on Institute of Medicine’s Report on Dying in America

[Submitted March 13, 2015]

Not Dead Yet is committed to continue work on advance care planning and professional education.  People with advanced serious illness almost always acquire disabilities even if they did not have a disability before.  People with disabilities have important insights that can help improve health care and related support services.

Recommendation 1:  Delivery of Care

While some individuals with “advanced serious illness who are nearing the end of life” have conditions that prevent life from being extended appreciably by medical intervention, this is not true for all.  Common examples are ALS and other progressive neuromuscular disorders, which most often become “terminal” because of a decision not to use a ventilator.  The decision making process is, therefore, of critical importance and is addressed below.

We agree that “Palliative care should encompass access to an interdisciplinary palliative care team . . . ,” but just as there is room for non-medical team members like social workers and chaplains, there should also be room for peers with similar health conditions, or persons with experience from the standpoint of the patient.

Recommendation 2:  Clinician–Patient Communication and Advance Care Planning

Established programs for advance care planning (ACP) were developed without input from people with disabilities who have first hand knowledge of how to live happily and productively with significant disabilities or chronic illnesses.  As renowned palliative care physician Ira Byock said regarding the exclusion of the disability perspective from the “end of life” initiatives of the 1990’s, “It was a deliberate decision — and it was irresponsible.”  (

The result of that exclusion is that ACP was infused with common societal prejudices about disability, with materials often suggesting that disability is a fate worse than death and encouraging people to give up their lives by refusing life sustaining care rather than adapt to disability.  Whatever the good intentions of those involved, ACP materials are permeated with the “better dead than disabled” message.  Disability advocates have begun dialogues with ACP programs, such as Respecting Choices, but all communities need to address the problem of disability bias and its devastating consequences for people who acquire disabilities in a medical environment that is so abysmally ignorant and negative about living with disability.

Recommendation 3: Professional Education and Development

Professional training, certification, and licensure requirements should include education in rehabilitation medicine, which pertains to living with disability.  Moreover, people with disabilities should be among the instructors or guest lecturers in professional training programs.

Recommendation 4: Policies and Payment Systems

Bias against living with disability is prevalent in educational materials on Physician Orders for Life-Sustaining Treatment (POLST).  In addition to addressing that problem, POLST must include key patient protections, such as:

  • POLST is only for persons at the end stage of a serious illness;
  • POLST advisory groups must include disability advocates;
  • Signature of patient or surrogate must be required;
  • POLST discussion must present choices without steering patients toward particular options, disclosing both the benefits and risks of entering an immediately effective medical order that applies regardless of circumstances.