DWD and disability–Part 2

The idea suggested by some disability rights advocates, that most of us will be disabled in one way or another by the time we reach the end of our lives, has been borne out in my experience.  Virtually everyone I have known who has died has met, days or weeks or months before their deaths, the definition of disability under the Americans with Disabilities Act (ADA):  “a physical or mental impairment that substantially limits one or more major life activities of such individual,” which may include, “but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.” 

Disabilities vary widely, each requiring individual consideration.  My own situation is not unusual or extreme, but it may be illustrative of what most people face, in one degree or another, as they age.  

Like my mother and her mother, I’ve had osteoarthritis all of my adult life, which has caused me to think a lot about disability during the last few years as the condition has worsened.  Arthritis has crippled my joints and interfered with the functions of my spine.  At age 70, I developed other serious but treatable medical problems that limit the amount of physical exertion I can manage.  Beginning two years ago, I had four major surgeries, first a major clean-out of boney deposits in my lower back, then one knee replacement, then another, and finally a hip replacement.  

My “recovery” has been much slower for each joint replacement than my surgeon told me it would be.  Finally, about a month ago, I was able to stop using a cane for walking, though I will never get back to the physical ability I once had.  If I live long enough, I’ll have more surgeries related to arthritic deterioration.  There are many former activities that I can no longer enjoy, which means I have to pay people to do them for me, or I am helped by my wife or friends, or I simply forego the activity.

My condition doesn’t come close to being as severe as the difficulties many others face.  However, this is not a game of “I’m more disabled than you.”  The way some people adjust to or cope with their own disabilities is often remarkable.  I remember a woman in law school in the 1970s who was able to navigate a wheelchair only with a mouth control and needed an aide to manage academic requirements and provide personal care.  

The progressive physical disabilities of Stephen Hawking, along with advanced support that helped him continue to contribute to his fields of theoretical physics and cosmology, were on display for 50 years before his death earlier this year.  Some people, like Hawking and the law school student, in order to live their lives to the fullest that is possible, require a level of assistance that should be readily available in a civilized world.  Unfortunately, this world is not as civilized as it should be, especially in the US.

Whatever level of disability I may experience, one value that I share with those in the disability rights community is the importance of autonomy–the right to make basic decisions about our own lives.  But this autonomy requires having the necessary resources to make available to everyone the full range of options that exist to support the maximum amount of independence.

My dad died of complications from Alzheimer’s at age 94, fifteen years after he was diagnosed with the disease.  Because I was one of his primary caretakers, I was able to see first-hand how the disease progressed.  I decided that I would not want to live all the way through such a progressive condition.  But this thought never, apparently, occurred to Dad, and no one ever suggested it to him at any stage of his illness, though he was aware of what he would almost surely face.

About ten years before he died, he and my mother were living in a residential retirement community that provided apartments, an assisted living unit, and an Alzheimer’s facility, all in the same building.  Once, when my spouse and I were visiting them, they offered to show us the rest of the facility, the part adjacent to the independent apartments where they were living.  We looked at the assisted living unit and then at the Alzheimer’s section.  Each room in the Alzheimer’s area had an ample-sized display case built into the hallway wall next to the door–a visible place for mementoes and keepsakes for the resident.  When we were looking at one of the rooms, Dad mentioned that he expected to be in this unit eventually.  Then, he pointed at the display case and said, “I guess that’s where I’ll keep your mother.”  We all laughed at the comment, including Dad.

He knew the fate that awaited him, but he kept a surprising sense of humor that lasted at least for as long as he was aware of his condition.  His choice about his fate was his and his alone.  Mine should be mine and mine alone, as well.  Until disability advocates who oppose the right to die (RTD) recognize and deal with the inherent contradiction in their opposition to the RTD, they will compromise what should be their primary focus–namely, advocating for resources adequate to assure that all people have complete choice at every stage of their lives.

As I have thought about resources or procedures that could be included in DWD laws to make disability advocates less hostile to expanding control over the end of our lives, the first that has come to mind (and suggested by one such advocate) is requiring a third-party agent, whose task would be to assure that no one one ends his life as a result of coercion or other undue influence.  This addition to the laws might answer the concerns that there is “foul play” or coercion at work “behind closed doors,” as activist Diane Coleman claims.  

However, I would not want another person to intrude into my choices and my privacy in such a way, nor would I need it.  Before qualifying in Oregon (and generally in the other six jurisdictions with similar laws) to use its DWD law, I would have to have a medical doctor agree to my oral request for lethal medication; have two witnesses to my written request for the medication; have a second “consulting physician” confirm my diagnosis and prognosis; in some cases (determined by the two doctors), be evaluated by a psychologist or psychiatrist; be asked (though not required) to notify my next-of-kin about my decision; be informed by the prescribing physician of alternatives to ending my life, such as hospice care and/or palliative care; and have the pharmacist who fills my prescription informed of the purpose of the drug.

Is another person really necessary to assure that I have not been coerced into requesting that I be allowed to swallow a lethal medication?  I don’t think so.  In fact, I would resent the intrusion of another stranger into the process just for that purpose.  And I reject the ideas offered by Bradley Williams, President of Montanans Against Assisted Suicide, who favors a witness to the death so that predators cannot force euthanasia on people, based on the false assumption that coercion is happening now.  

Williams also wants to prohibit an heir from being part of the process, which means freezing out most family members and friends at a time when the patient may most need their presence.   Williams wants death certificates to list suicide by the drug used as the cause of death, rather than the underlying illness.   He believes that DWD laws are being used as subterfuges for the trafficking in organ and tissues, which demonstrates he doesn’t understand the organ and tissue donation process in the US.  And he thinks that “corporate facilitators” are “profiteering” off of DWD laws, a matter he claims is “of public record in the industry,” though he doesn’t cite any sources for this absurd claim.

I now return to an idea that I proposed previously–using a social worker as the gate-keeper for the entire process–someone on whom an applicant can rely for help.

Instead of having physicians in charge of the process, a licensed clinical social worker, whose training and experience is to evaluate and assist with the entirety of a person’s life–family dynamics, other significant relationships, mental health, life goals, medical condition, financial problems, inheritance issues, disabilities, and other counseling needs–could put those skills to use.

If clinical social workers were part of medical practices or hospital systems, the cost for their services could be included in claims made to healthcare or medical insurance providers.

Under Oregon’s 20-year old DWD law, last year 218 people obtained (but not all used) lethal prescriptions; 212 obtained prescriptions through Washington’s similar nine-year old law.  A handful of clinical social workers could manage such a workload, even if many more people sought to use the laws.  And such social workers could make the process more humane for applicants, acting as an intermediator with all of those who might be involved in the process.  

They would know which physicians are willing to participate in the law, making referrals as needed and easing the burden on applicants to find cooperating physicians, an often difficult task in both states, especially for a sick patient or one without adequate assistance from others.  They would know the best hospice programs to help the patient at the end of life, if that course is acceptable to the patient.  They would know about other alternatives to DWD laws that could be considered when appropriate, such as stopping treatments and turning to palliative support, terminal sedation, voluntarily stopping eating and drinking (VSED), and the training and education provided by FEN.

Because social workers have mental health training, they might be able to resolve mental health and competency issues without referral to other mental health professionals.  But the main function of licensed clinical social workers is to ease the burden on sick, exhausted, and physically debilitated patients who believe that the time has come to hasten their own deaths.  They would function as guides, facilitators, protectors, and compassionate presences in the lives of people in need–the role social workers are trained to fulfill.

I do not suggest that licensed clinical social workers will solve all the problems that DWD law critics raise.  Anyone who opposes such laws on religious grounds is not likely to be satisfied with anything other than having no such laws.  But using social workers will solve most of the problems brought up by disability activists.  

 I hope others will suggest more potential remedies for the concerns raised by such activists.  We should take these concerns seriously as long as they are genuine and not facades behind which they can hide their unalterable opposition to such laws.  The burden is on the sincere and truthful disability activists who oppose DWD laws for actual, rather than imagined, deficiencies to make them better, rather than nonexistent.