Autistic Self Advocacy Network IOM Statement

March 13, 2015

The Autistic Self Advocacy Network supports the Institute of Medicine’s recommendations that care near the end of life be compassionate, person-centered, and include strong focus on shared decision-making and palliative care. However, as an organization representing many people with disabilities that can affect communication and health care decision-making, we urge IOM to include more explicit guidance on shared decision-making for people with long-term communication support needs that predate any life-threatening illness or injury. We also have grave concerns with the potential implications of the implementation of several recommendations in this report.

Recommendation 1: Delivery of Care

For many people with disabilities, there is no clear definition of individuals with “advanced serious illness who are nearing the end of life.” Many people with disabilities live long lives, punctuated by acute health crises that may be life- threatening. Often, whether or not a health crisis is seen as “the end of life” depends on whether a person – or the person’s surrogate decision-makers – decide to pursue life-extending treatment.

Recently, the Autistic Self Advocacy Network submitted an amicus brief in Disability Rights Wisconsin v. University of Wisconsin Hospital Centers, et al. One of the incidents giving rise to that lawsuit was the death of a thirteen-year-old boy with developmental disabilities, which serves as a stark example of how decisions about survivable illnesses can become “end-of-life” decisions as a result of doctors’ and substitute decision-makers’ negative attitudes about disability. Doctors at the University of Wisconsin had determined that the teenager, who had a history of respiratory infections that responded well to antibiotics, had a “low quality of life.” The decision that the child had a “low quality of life” was based neither on communication with the patient himself nor on discussions with his immediate caregivers; instead, they were based on the fact that the patient had a significant disability. Based on that determination, they helped his parents develop a plan to withdraw nutrition, hydration, and antibiotics the next time he developed an infection. He died after administration of morphine, within a day of intake for his next hospital admission.

We recommend that “end-of-life” care be defined to recognize that the “end of life” can result from decisions not to treat an underlying illness and that treating an illness inappropriately as an “end-of-life” matter can result in dramatically shortened lives for people with disabilities.

In addition, although we agree that “Palliative care should encompass access to an interdisciplinary palliative care team . . . ,” we urge that peers with similar health conditions or persons with experience from the standpoint of the patient be considered and included in the decision-making process, just as there is room for non-medical team members like social workers and chaplains.

Recommendation 2: Clinician–Patient Communication and Advance Care Planning

Established programs for advance care planning (ACP) often presume an individual who initially has no communication-related or cognitive disability, but may develop one in the future. This is not the case for many people with developmental disabilities. Nevertheless, people with developmental disabilities have a fundamental right to participate in decisions about their own medical care. Many adults with intellectual or developmental disabilities are excluded from these kinds of conversations because they are perceived as unable to make health decisions for themselves. Sometimes, they have been placed under a health care guardianship and no longer have the legal authority to consent to or refuse treatment. Even when an individual is not under guardianship, doctors may speak to caregivers or support persons instead of the patients themselves.

We are concerned that, although IOM explicitly acknowledges the rights of children to participate in their own health care decision making, it does not include any similarly explicit acknowledgment that people with intellectual or developmental disabilities also have the right to participate in planning, even if they are under medical guardianship, cannot use language to communicate, or need significant support in order to make their own decisions. Failure to speak directly to a patient can be fatal, as in the case of the teenaged boy in Disability Rights Wisconsin v. University of Wisconsin Hospital Centers.

We recommend that the IOM recommendations be revised include a reference best practices in supporting people with disabilities to make health care decisions, including supported decision-making.

We are also deeply concerned that 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.”1

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

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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.

This bias can be especially harmful when, in the name of “simplifying” information, doctors fail to provide sufficiently detailed information about life-sustaining procedures. For example, some information on end of life planning makes vague references to “needing a machine” to breathe or eat, or to “heroic measures.” Many people may feel differently about using a ventilator to survive for several months or years in the community than they may feel about emergency life-support measures that are not expected to extend life for very long.

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;
  •   POLST forms should not be completed by a court-appointed surrogate,

    without first consulting with the patient;

  •   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.

    Again, thank you for this report. We strongly hope that you will take ASAN’s recommendations into consideration.


Samantha Crane Director of Public Policy