Lessons about PAD from disability rights advocates

Disability rights groups that oppose self-determination for people who seek physician-assisted dying (PAD ) argue that such people should not have the right to decide for themselves when their lives are no longer tenable.  Nevertheless, the disability rights groups do make points related to PAD that are worth considering; for one, they have helped me realize that over the last ten years I have become disabled.

Until I read the view of Not Dead Yet (NDY) that as people age they frequently become disabled, I had not thought of myself as disabled.  But as I read definitions of “disabled” provided in the Americans with Disabilities Act (ADA), I realize that I clearly fit.  The ADA defines disability as “a physical or mental impairment that substantially limits one or more major life activities of such individual.”  So I consider myself part of the disabled community.

Major life activities include “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.”

The law explains further that “a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.”

Judging just from my peer group of those over 70, few of us think of ourselves as disabled, though many activities we once enjoyed are no longer enjoyable, or can no longer be done.  But I am convinced by NDY’s argument and my own analysis that I fit among those who are disabled.  In fact, according to a Pew Research Center analysis, nearly half (49.8%) of Americans 75 and over report “living with a disability.”  Difficulty with walking and independent living are the two most prevalent conditions that affect this age group.

Other comparisons between the disabled and the non-disabled provide a fuller picture. Cornell University has estimated that more than 26% of disabled Americans live below the poverty line–about double the overall US poverty level of 12.6 to 14%, according to UCDavis research.  Clearly, on the whole, disabled Americans are far more economically disadvantaged than the non-disabled population. 

And there are other differences between the two groups.  This research shows that those who describe themselves as disabled are more politically involved than the non-disabled, but they are less likely to use technology, such as computers, broadband, and smart phones.  This diminished use of technology, of course, could be caused by lower incomes and a lack of experience with computers.  Hearing, ambulatory difficulties, and independent living problems are the most prevalent disability issues according to the US Census surveys.  This fact suggests that when dealing with a disabled person, we should be aware that income vulnerability could influence their decisions.  I also realize that, unlike many other disabled people, I am one of the fortunate who have adequate resources to manage my disabilities. 

As I have previously commented, disabilities take a wide variety of forms and vary in intensity, and not all disabled people think alike.  As a disabled person (I accept NDY’s description that I am a part of “the aging community with acquired disabilities”), I respectfully disagree with much of NDY’s analysis of the right that I assert, namely, that I have a right to decide when it is time for me to die (assuming this choice is not made for me by one of my medical maladies).

 A spokesperson explained NDY’s opposition to assisted suicide laws:

As long as the majority of Americans with disabilities continue to live in poverty and unnecessary isolation, without access to appropriate mental health care and comprehensive, fully-funded and operational systems of assistive living services, our alarming and distressing rates of suicide, including assisted suicide, will go unchecked.

Aside from the incorrect statement about the number of disabled people living in poverty, combining suicide with assisted suicide obscures a significant difference between the two.  Disabled people who are most at risk for suicide almost always are ineligible for assisted suicide in Oregon, which requires a 6-month terminal diagnosis.  Thomas Weiss, writing for Disabled World, states that among the disabled, the most vulnerable for suicide are those with spinal cord injuries and multiple sclerosis, and yet the rate of suicide for them is less than among the general population.  People with these two conditions almost never meet the 6-month terminal diagnosis criterion, and none show up in Oregon’s 2017 report on its PAD law.  Assisted suicide, then, has not been used by such disabled people.

It is my good fortune that I do not live in poverty and am not isolated.  I have complete medical care through Medicare and my supplemental insurance policy.   I have mental health care.  I have an excellent long-term health care insurance policy, which covers services both in my home and in an appropriate medical facility.  I have had the help (provided by my spouse) that I needed during rehabilitation efforts from seven surgeries in the last five years, four of which have been major procedures.

Everyone in a decent society should have the same benefits.  On this point, I am in complete agreement with NDY.  However, I find fault with some of their claims about Oregon’s assisted dying law (with which I have my own disagreements), claims stated by ADAPT, a disability rights group closely aligned and approvingly quoted by NDY: 

. . . people seeking the suicide drugs in Oregon cited loss of autonomy, feelings of being a burden, loss of the ability to engage in activities, loss of the ability to control bodily functions and loss of dignity as the top reasons for wanting to die. These are disability issues, not just terminal illness issues. Attendant care services and other supports in one’s home are the solution to this, not doctor assisted suicide!

Similarly, Oregon’s report on its assisted dying law for 2017 lists participants’ end-of-life concerns (in descending order) as

• decreasing ability to participate in activities that made life enjoyable (88.1%) 

• loss of autonomy (87.4%)

• loss of dignity (67.1%)

• burden on family, friends/caregivers (55.2%)

• losing control of bodily functions (37.1%)

• inadequate pain control or concern about it (21%)

• financial implications of treatment (5.6%)

An important point to note, and one that has been ignored by almost everyone who writes about this subject, including NDY and ADAPT, is that the patients who used Oregon’s PAD law did not complete this survey themselves.  In correspondence with Craig New, Research Analyst, Oregon Health Authority, I learned that after their deaths, the “Attending Physician” for each patient completed the questionnaire, providing the answers the physician thinks are accurate for each patient.  Patient doctors could choose as many criteria as they thought applicable.  

According to their physicians, the two criteria that affected the most substantial number of participants (at just under 90%) were decreasing ability to participate in activities that made life enjoyable (88.1%)  and loss of autonomy (87.4%).  These are major factors in my decision-making about when I would be ready to die.

I assume that the “loss of dignity” reported is in the eye of the beholder–each person’s “Attending Physician” in this case.  The questionnaire “only asks if the physician believes ‘a loss of dignity’ contributed to the patient’s DWDA request.”  No one knows exactly what definition was used by those doctors.  The phrase is not defined in the questionnaire or in the law.  The questionnaire may reflect the views, biases, or concerns of the doctors as much as, or more than, their patients.

I do know that if I become unable to behave in the ways I wish because of my medical condition, I might consider that inability a loss of dignity, just as I would if I become unlikely to be respected for those attributes that are important to me, such as exhibiting kindness, being compassionate, writing, and talking about ideas.  But this assessment would be my view, whether or not it is that of my physician or any other person.

In a similar fashion, I don’t want to become an unacceptable burden, as I view that concept, on my family, friends, and caregivers, though if caregivers are paid, I assume they have expected whatever burden my care creates for them.  I should have the autonomy to decide this burden question, unbothered by the opinions of my physician or other disabled people and their organizations.

If someone is bothered by “losing control of bodily functions,” I would hope they had access to the latest resources to deal with such issues.  I am aware of many people using pads of various sorts when loss of urinary control became a problem for them.  Usually, this has been successful.  I, myself, have had to use a Foley catheter with a leg bag and a larger night-time bag for a while, and I helped my father with his catheter and bags for about three years before his death.  Still, some people might find this arrangement unacceptable.  If so, that is their decision, not mine.

The inability to achieve adequate pain control (or concern about that issue) is clearly a subjective determination, which a patient may have revealed to his or her doctor.  As long as appropriate medical services are available, I can’t understand why this would be an objectionable criterion for use of the Oregon law.

Since over 99% of participants in Oregon’s assisted dying law had health insurance, I’m not sure that access to health care is an important consideration.  However, if those participants did not receive adequate palliative care that could be an issue.  But Oregon’s Health Authority suggests this is not the case.   In Oregon and in any decent society, appropriate palliative care should be available for every patient.

NDY’s opposition to the Oregon law does not persuade me that the law is bad for the disabled because NDY has not shown that unserved or untreated disability has led to the decisions of those who have used Oregon’s PAD law.  In fact, the data suggest otherwise.

By opposing the option of PAD for those near death, NDY seeks to be the decision-maker for all disabled people.  I reject their playing that role in my life and don’t believe they can justify assuming that right for any other person, whether disabled or not.  I do applaud them for working to assure that no one is denied resources that enable them to make free, fair, and autonomous decisions.  I will continue to work for that same goal.

I believe that we have a moral duty to do all we can to prevent suicide by those who lack the mental capacity, either temporarily or permanently, to freely decide that their life should end.  If lack of medical, personal, and social resources might drive a person to suicide, similarly, we should act to eliminate the resource gap so that no one takes their own life for reasons other than their own freely-considered personal values.  It is neither fair nor equitable to deprive one person of autonomy because another person may not have adequate resources.