I came across a post recently on end-of-life care and disability by Ann Neumann on her blog, otherspoon. The focus of the post was on the conflict between the disability community and the “aid in dying†movement.
Neumann pointed out (correctly) that the disabled and their advocates have frequently sided with “pro-life†groups over the issue of aid-in-dying; particularly in relation to death with dignity laws such as those in Oregon, Washington and Montana. I commented on the post, but continued to think about the points it raised and the complexity of end of life for persons with disabilities.
Before retiring two-plus years ago, I was responsible for end-of-life services for persons with developmental disabilities for a state agency. Before taking over I had no formal training in end-of-life, except for a college course on death and dying. I did however have personal experience having lost both my mother and father to death after long illnesses when I was in my 20’s. That was my first encounter with the bureaucracy of illness and dying.
Illness and dying are difficult under any circumstances, but for people who are developmentally disabled it is even more so. For the disabled just living, working and doing the things most of us take for granted is tough and inequitable in our society; and dying is often even more so. In the five + years managing end-of-life care there were a variety of experiences with hospitals, physicians and others in the medical community who at times were reluctant or even averse to treating our clients in the same manner that they would treat you or me.
One such experience was a female client who had been diagnosed with breast cancer, at the first meeting post-diagnosis with the physician he asked, “So what do you want me to doâ€. After clarifying that he was indeed talking about whether or not to treat with chemo/radiation, the caregiver accompanying the client told the physician simply, “I want you to treat her in the same way you would treat your sisterâ€. At other times a client would go into the hospital with a routine and treatable condition such as pneumonia, only to have the physician suggest to the family a Do Not Resuscitate Order (not an Advance Directive, which could have been appropriate) and then treat them accordingly rather then pursue more typical (curative) treatment with antibiotics, etc. This would typically get corrected quickly, but there were times we would have to rely on intervention by the hospital ethics committee to get the needed treatment initiated.
Another complicating factor, it is not a rare occurrence for a person with developmental disabilities to have a feeding tube, rely on supplemental oxygen or have other means of medical support that with the typical population would be considered an "extraordinary measure". However in the disabled community these are simply medical aids a person might need on a daily basis to live and function, like a diabetic needs insulin. Nevertheless, for those outside the disability community, it was another factor that confused and blurred the line between having a severe disability and having a terminal illness.
After many battles advocating for the needs of the client, I came to believe that for the majority of cases what we were up against was not an unwillingness on the part of physicians and hospitals to appropriately treat individuals with developmental disabilities, but rather a case of them seeing the disabled person as someone who was both very sick and had no apparent quality of life – in their judgment. Remember, being very ill and appearing to have little or no quality of life are markers indicating when a person has gone from being very ill but with an expectation of recovery, to being terminally ill with none.
Once a person crosses that threshold the way they are responded to medically changes from curative type treatment to "comfort based" only (non-curative) treatment. To be clear, when a client did have a terminal illness palliative care was appropriate and was initiated usually through hospice services. It was only when the client did not have a terminal diagnosis or condition that aggressive curative treatment was expected and sought after.
In my experience, it was this basic misunderstanding/misconception of the "disabled condition" (not something that is really covered in medical school, plus clinical experience with disabled has been very limited historically) that more than anything else was responsible for the biased attitudes and practices in treating the individual. In my mind, it is experiences and knowledge of this sort that makes the disabled community understandably apprehensive toward end-of-life issues, and particularly of the laws having to do with aid-in-dying.
For more information about end-of-life for individuals with developmental disabilities see: Last Passages and EOL Care for People with Developmental Disabilities