In Part 1 of this series, I addressed ten criticisms of MAID laws, particularly those in Oregon and Washington, though most such laws are modeled largely on Oregon’s law. In Part 2, I look at criticisms of MAID laws concerning economic pressures, coercion, depression, inadequate resources for MAID clients, doctor shopping, inadequate Medicaid rules, ableism, and the failure of the drugs prescribed to MAID clients. My hope is that we can learn from opponents of MAID laws how to make the laws better.
Most of these criticisms come from Diane Coleman, President/CEO of Not Dead Yet. I have continued numbering the major objections below.
11. “[N]either doctors nor witnesses need know the person well enough to certify that they are not being coerced.”
12. Economic pressures and coercion affect some people who use MAID laws.
13. Some people with treatable cancer can survive much more than six months if they are treated, so they should be encouraged by their doctors to accept treatment.
If a clinical social worker were the gatekeeper of the MAID process, establishing the presence or absence of coercion would be mandatory under the ethical standards for social workers (see here and here). Gathering a thorough history of the client, including understanding their current living arrangement and the dynamics of the client’s relationships with family and friends, would be an important part of the process that a social worker has the skills to accomplish.
What a clinical social worker may lack in knowing the client for a long time would be satisfied by thorough case work that should satisfy concerns about coercion. For instance, such a work-up on me would show that I have made my views known publicly on the question of the right to die for over 25 years, from the time I helped organize a Hemlock chapter in the Austin, Texas, area, and including my first efforts to write a dementia advance directive for myself twenty years ago.
As to economic pressures that may affect a decision to hasten death, I have no doubt that they can be a consideration for some people. I have talked to several such people, but am unwilling to base public policy on anecdotal evidence. One example from both Washington and Oregon is given by Coleman. A Washington woman had filed for bankruptcy two years before her death under that state’s MAID law and was low-income, according to a New York Times article. That information, alone, does not support a conclusion that she chose to hasten her death for economic reasons, though that could have been a factor in her decision. In the second example, an Oregon MAID death in 2008 of a person whose estate was defrauded after his death, clearly has nothing to do with the MAID decision and provides no evidence that either coercion or penury was involved in his death.
Furthermore, no one has a right to question a person’s decision that the quality of their life is so poor and unlikely to change that there is greater value in leaving something to one’s heirs than to continue to live. I might not make that decision, but to deny another the right to make that determination when they expect to die within a few months is oppressive, if not tyrannical.
As further support for her coercion argument, Coleman asserts that a spouse heard one Oregon doctor encouraging a patient to use the MAID law. I can’t know whether this happened, but I will contrast this with the policy of the Final Exit Network (FEN), which is that FEN neither encourages nor discourages people to hasten their deaths. What FEN supports is the right to die when a mentally competent individual makes that decision for himself or herself.
FEN’s Guiding Principles include the following:
We hold that mentally competent adults who suffer from a terminal illness, from intractable physical pain, or from a constellation of chronic or progressive physical disabilities, or who face an impending loss of autonomy and selfhood through dementia, have a basic human right to choose to end their lives when they judge their quality of life to be unacceptable.
We hold that a mentally competent person with intolerable suffering or pain has the right to end his or her life, choosing the timing and persons present, and should be free of any restrictions by the law, clergy, medical profession, friends or relatives.
We do not encourage anyone to end their life and are opposed to anyone encouraging anyone to end their life.
We do not provide the means for self-deliverance and we do not assist in self-deliverance.
We support research for safe, inexpensive medications or other safe, certain and painless methods that would allow for a peaceful self-deliverance.
I can’t know how every oncologist might interact with patients, but in those instances with which I am familiar, I have found that oncologists routinely explain treatments and their side effects, leaving the treatment decision to the patient. If a treatment is deemed efficacious by an oncologist, I can understand if he or she encourages a patient to accept it. But to assert that an oncologist should encourage acceptance of a treatment that will extend the patient’s life beyond six months is patently authoritarian and suggests a desire to control the lives of others to an alarming extent. To treat a patient without informed consent is to commit a battery on that person, and is actionable in a court of law.
14. No independent witness is required “to confirm whether the lethal dose was self-administered and consensual.”
This is another role that can be played by a clinical social worker or an associate of the social worker–an independent witness who could attest that the drug is self-administered by the client. Whether such confirmation is needed will require much more evidence of involuntary use of lethal drugs than we now have.
15. The reasons participants use MAID laws are insufficient because they are based on inadequate resources for MAID participants.
Coleman expresses this argument this way:
The top five reasons doctors give for their patients’ assisted suicide requests are not pain or fear of future pain, but psychological and personal care issues that are well understood by the disability community: “loss of autonomy” (91%), “less able to engage in activities” (90%), “loss of dignity” (76%), “losing control of bodily functions” (46%), and “burden on others” (44%) (page 10). . . . Three of these reasons (feeling a loss of autonomy, loss of dignity, feelings of being a burden) could be addressed by consumer-directed in-home long-term care services, but no disclosures about or provision of such services is required. Some of the reported reasons are clearly psychosocial and could be addressed by disability-competent professional and peer counselors, but this is not required either.
The reasons people use MAID laws are personal. I have excellent health care resources through Medicare and a Medicare supplement, plus Part D drug coverage. In addition, I have above-average long-term care insurance that will afford me in-home services, as well as residential services should I need them. Yet, my decision to hasten my death will depend in one degree or another on all of the factors mentioned by Coleman. My resources may delay my decision to hasten my death, but the factors listed will all play a role in that decision. If those arguing against MAID would deny me my well-considered opinions about my own life, they are being paternalistic at best or authoritarian at worst.
16. “[O]nly 4.9% of patients who request assisted suicide were referred for a psychiatric or psychological evaluation, despite studies showing the prevalence of depression in such patients.”
17. Most people with depression cannot be diagnosed in one visit, the limit imposed by Oregon’s MAID law on psychiatric consultations, according to a 1996 article in the American Journal of Psychiatry. (Ganzini, et al., “Attitudes of Oregon Psychiatrists Towards Assisted Suicide,” American Journal of Psychiatry, Vol. 153, 1996, pp. 1469 – 75.)
18. When someone who may be depressed is turned down for MAID law participation because they are not terminal, they should be referred for a psychiatric evaluation.
I won’t question that many people who decide to hasten their deaths may be depressed. But the essential question is not depression alone, but the extent of the depression. If the depression is so severe that it distorts the capacity to make a well-reasoned decision, there is cause for concern. If the depression leaves the person without sufficient capacity to make their own medical decisions, there is cause for intervention in the decision. Once again, a clinical social worker is much better able to determine the need for a psychiatric or psychological referral than are most primary care physicians. I would leave a referral in that person’s hands, including for those who do not have a terminal diagnosis.
I would note, however, that those with neurological diseases, such as ALS, Huntington’s, Alzheimer’s, Parkinson’s, and Lewy Body Dementia, among others, will seldom qualify for MAID laws because they will not receive a six-month terminal prognosis until the disease, in most instances, has rendered them mentally (and probably physically) incapacitated so that they could not qualify for MAID laws. All of these laws now discriminate against those who suffer from neurological disease, the outcome for which can be devastating.
19. Doctor shopping allows individuals to go from one doctor to another until they find a doctor willing to prescribe the lethal medication–sometimes these willing doctors are suggested by Compassion & Choices, which has been involved with 75% to 96.6% of cases.
Golden makes this assertion in the report from the Disability Rights Education and Defense Fund. I can’t confirm or refute it. The reality is that doctors are not required to participate in MAID laws. It is often difficult to find doctors who are willing to participate. If a group can help find doctors who are willing to participate in the law, they are providing a service needed by some MAID clients, just as Not Dead Yet provides a needed advocacy voice for many of the disabled.
20. Oregon’s Medicaid law will not provide treatments that are not expected to have a 5% chance of a 5-year survival time, but they will cover the drugs for MAID.
Coleman argues that “Though called free choice, when insurers won’t pay, assisted suicide is a phony form of freedom.” I don’t quarrel with Coleman’s point. If the treatment will provide for a reasonable (whatever that may be) survival time, it should be available. However, I don’t have the expertise to argue about medical economics, medical futility, or how publicly-funded medical care systems should be run. I do think a requirement for a five-year survival time is extremely excessive. For some people with a terminal illness, survival for a few weeks or months can allow them time to wind up their affairs, talk with friends and loved ones, and accomplish whatever other interests they may have.
I know of many people who wanted to take care of home repairs before their deaths so their spouse would not be faced with that burden. Others want to take a last vacation before dying, some want to finish writing a book, and some want to see the birth of a grandchild. The reasons we may want a little more time before dying are as varied as we are. Medical resource restrictions should not be based on purely economic considerations.
21. Six patients in Oregon were intentionally given overdoses of medications by nurses that resulted in the patients’ deaths, but none of the nurses were prosecuted.
These possible crimes are not evidence of any defect in MAID laws, nor do they relate to or justify opposition to MAID laws. The acts complained of concern assisted suicide or homicide, not MAID.
22. “Assisted suicide is not about relieving the suffering of the dying: it is an expression of the most toxic and deadly form of ableism, which holds that life with a disability is not worth living.”
This criticism by Bruce Darling, National Organizer for ADAPT, assumes that readers will know what ableism means. I don’t know what Darling means by the term, but ableism is defined by the Center for Disability Rights as
a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other.
From my vantage point, Darling’s view discounts the autonomy of mentally competent individuals, whether or not they are disabled. When they are disabled, Darling’s ableism insult is itself a form of ableism in that it would deny the disabled autonomy over their own lives. Support for MAID is not grounded in disability. Rather, support for such laws is grounded in the desire to avoid unwanted suffering from debilitating diseases.
23. The lethal drugs prescribed for MAID participants do not always provide a peaceful death and fail completely in some cases.
The Disability Rights Education and Defense Fund, cited in Coleman’s testimony, claims that a study in the Journal of the American Medical Association (Vol. 280, No. 6, August 12,1998, p. 512) shows that such failure occurs 15% to 25% of the time under MAID laws. I was unable to access this study to verify the claims. However, if we assume the data are correct, the failure is not of the law as much as it is of following protocols that would assure the prescribed drugs are adequate and are taken in the proper way, including the use of an antiemetic preceding the ingestion of the drugs. Here, supervision by persons trained in the process would help avoid such failures.
A few preliminary conclusions for Parts 1 and 2
Disability rights groups’ positions on MAID laws clearly have identified a major social failure of the US–the absence of comprehensive medical care and related social resources that would allow disabled people to live their lives as they choose.
A second major area of agreement that I have with MAID critics is that the laws can be improved. My view is that clinical social workers should be the laws’ gatekeepers, not physicians, though physician involvement is essential. However, the critics I reviewed are interested not in improving the laws, but in eliminating them or preventing their adoption. One strategy that seems apparent in their arguments against MAID is to further complicate the MAID process by making it more difficult to access MAID services.
Their opposition to MAID laws (and probably the work of FEN) disregards the autonomy all human beings should have over their own lives. Such opponents reserve autonomy for themselves to live their lives according to their own desires, but seek to deny the same autonomy to others when they disagree with the choices others may make for their lives.
In Part 3, I will look at more of what opponents consider evidence against MAID laws.
Interesting series. Thank you.
After scouring, reading and contemplating the Right to Die movement in The Netherlands (in the original language, Dutch) for the last five years, I have come to the conclusion that this is done with much care in that country. The countries’ General Prosecutor receives the required reports about finished assisted deaths. There is some opposition, but it is very, very limited, it takes on the form of questioning. The general, effective powder to end your life is available with careful protection against misuse. Once per ten years the General Prosecutor’s office publishes a report identifying abuses. There have been cases where the question of “a bit too soon” was raised, but no protests from the population came forth.
So, all the argumentative words written in this blog are typical American, and similarly to another country’s disastrous behavior (Brexit), most likely an outflow from using an non-precise language, English.
Yes, as someone who speaks, and reads German, Dutch and English fluently including the nuances, I am warning Americans about this.