With this post, I begin a multi-part series about the views of those who oppose medical-assistance-in-dying (MAID) or have written critically about MAID laws. I think there are some good ideas that we can learn from these critics to help us improve MAID laws, though that is not their intent. They will oppose MAID under any law, no matter how carefully written.
Recent comments in opposition to a proposal for MAID in Virginia is my starting point. The comments can be found in a document released by Not Dead Yet (NDY), a disability rights organization, and ADAPT, “a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.”
A senior policy analyst for the Disability Rights Education & Defense Fund, Marilyn Golden, referenced in NDY’s written comment, summarizes her opposition to MAID laws:
If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes, coercion and abuse. No safeguards have ever been enacted, or even proposed, that can prevent this outcome, which can never be undone.
A lengthier, detailed view in support of Golden’s conclusion is provided in written testimony to the Virginia MAID proposal by Diane Coleman, President/CEO of NDY. I have numbered major critical points to better track them for reference.
1. There have been mistaken diagnoses
No one doubts that doctors make mistakes in diagnoses. Sometimes people die from being misdiagnosed, but this occurs in situations that have nothing to do with MAID laws. The remedy for a possible misdiagnosis in all situations is to get a second opinion, or even a third opinion in some cases. Mistaken diagnoses are not a failure of MAID laws, but a fact of life for which there is a simple remedy.
2. There have been mistaken prognoses
Estimating how long a person might live after being correctly diagnosed is not an exact science. It depends on the diagnosis, the stage of the illness (how far it has progressed), whether there are treatments available, the efficacy of treatment options, the decision of the patient to accept a particular treatment, the patient’s immune system in some cases, the aggressiveness of the disease, and perhaps the attitude and psychological makeup of the patient. Often doctors make prognoses in terms of a range of time, eg., from six months to a year. There is nothing magical about a six-month terminal diagnosis, but lawmakers had to set some standard, and that standard is “six months to live.”
The fact that some people’s experience proves a prognosis inaccurate is not a ground to declare the entire system invalid. It is the best that medicine can provide and requires no one to immediately end their life. Patients in such circumstances usually wait until their symptoms become too uncomfortable or unacceptable for them to endure. When that discomfort does not come when expected, it is normal for the patient to put off taking the lethal dose of medicine. After all, most such patients are not eager to die, but eager to avoid unwanted symptoms that their disease is expected to produce.
3. Severely disabled people could discontinue treatments that keep them alive in order to qualify for MAID
One concern of opponents of MAID is that a disabled person dependent on life-saving treatments could become despondent and discontinue treatments in order to access a MAID law. If so, a properly administered MAID law should catch any severe depression that has led to this circumstance. However, a person does not have to be severely disabled to qualify for a MAID law by voluntarily refusing treatments or discontinuing treatments. This happens regularly with those who are believed to have a terminal condition but are not yet disabled by the condition and find the treatment(s) more undesirable than death. All of us have the right to reject unwanted medical treatments. That is our constitutional right.
A related concern is that a severely disabled person may not be able to afford life-sustaining treatments and be compelled to use a MAID law. For a discussion of this issue, see number 4 below.
4. The inability to pay for health care can result in a terminal condition and death
This truth is the greatest tragedy of the US health care system. I have a friend who has no health care coverage and is two years away from being eligible for Medicare. He has had two heart attacks and a year ago was diagnosed with prostate cancer, but he does not have the financial ability to pay for the medical care he needs to treat either condition.
The Harvard Gazette reports that
Nearly 45,000 annual deaths are associated with lack of health insurance, according to a new study published online today by the American Journal of Public Health. That figure is about two and a half times higher than an estimate from the Institute of Medicine (IOM) in 2002.
The study, conducted at Harvard Medical School and Cambridge Health Alliance, found that uninsured, working-age Americans have a 40 percent higher risk of death than their privately insured counterparts, up from a 25 percent excess death rate found in 1993.
The uninsured have a higher risk of death when compared to the privately insured, even after taking into account socioeconomics, health behaviors, and baseline health,” said lead author Andrew Wilper, M.D., who currently teaches at the University of Washington School of Medicine. “We doctors have many new ways to prevent deaths from hypertension, diabetes, and heart disease — but only if patients can get into our offices and afford their medications.”
We live in a society that can afford to pay $350 million each year for halloween costumes for our pets, but we are unwilling to make sure every American has health insurance. Our country, in our names, will spend trillions of dollars on unnecessary wars, often for scurrilous reasons. We should all be ashamed, especially our politicians, that there is not excellent health care for all Americans, but the absence of adequate health care is not an argument against MAID laws. It is an argument for universal health care. The involvement of clinical social workers in the MAID process could assist those unable to afford life-sustaining treatment to find the resources needed to treat their terminal condition.
5. Suicide prevention and other supports are denied to the disabled and those with chronic conditions
The basic argument is this:
Under assisted suicide policies, many people with chronic conditions or disabilities would qualify for assisted suicide and be denied the suicide prevention and other supports that nondisabled people would take for granted if they expressed a desire to die. By denying equal suicide prevention and other supports to people deemed “terminal”, assisted suicide laws are inherently discriminatory against old, ill and disabled people.
MAID laws are premised on the assumption that suicide can be a rational decision. See here, here, and here. If a person is not clinically depressed, schizophrenic, or otherwise severely mentally ill, their decision is assumed to be rational. If it is determined to be a rational decision, suicide prevention is not considered appropriate for them in their exercise of the autonomy all persons should have. However, if the decision appears irrational for any reason, all means of suicide prevention should be available. I have found no evidence that suicide prevention has been denied to anyone merely because they are “old, ill, or disabled.” In fact, in my recent experience, suicide prevention is such an aggressive process in Oregon, that old people have been involuntarily detained in hospitals for talking about wanting to die when there has been no finding of mental incapacity.
6. There may be an inherent conflict of interest in having healthcare providers act as the gatekeepers under assisted suicide laws
I have previously argued that the most appropriate gatekeepers in implementing MAID laws are clinical social workers. They have the training to assess mental health condition, find needed and useful resources, and coordinate a wide variety of those resources to serve the role of gatekeeper without the perceived conflicts healthcare providers may have.
7. Evidence and data support the claim that the Oregon MAID law is subject to abuse
8. Terminal predictions are difficult to make for some conditions
9. Terminal predictions do not have to take into account the likelihood that a person could live longer than six months with treatment
The arguments made in items 7, 8, and 9 are based on the bogus claim that annual reports from The Oregon Public Health Division about Oregon’s AID law show that “non-terminal people have received lethal prescriptions every year except the first.” In support of this nonsensical proposition, Coleman uses Oregon’s annual reports on MAID participants to argue that “In 2017, at least one person lived 603 days; across all years, the longest reported duration between the request for assisted suicide and death was 1009 days. In every year except the first year, the reported upper range is significantly longer than 180 days.”
The facts are that people do not take lethal drugs until their illness reaches the point that continuing to live is unacceptable due to irremediable suffering or unwanted symptom control, such as losing the ability to swallow. See the discussion of prognosis inaccuracy in item 2, above.
10. Those who provide the predictions for life expectancy do not have to be specialists in the disease for which the prediction is made.
This is a matter that could be addressed easily by a change in the Oregon MAID law to require that diagnoses be made by specialists in the appropriate medical field. Since almost all participants under the Oregon MAID law have health insurance, they could afford to consult specialists for their respective diseases. I am not aware of evidence that medical generalists are regularly making prognoses for MAID applicants, so this complaint may be a red herring.
In Part 2, I will address the issues of 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.
“Know your enemy and know yourself and you can fight a hundred battles without disaster.” —Sun Tsu
Someone, I don`t remember who, once said; “We have the ‘right to die’ in this country already ; it`s called lack of insurance.”
On another note: In 1998 Ann Arbor hosted the national meeting of the Hemlock Society and the Not Dead Yet folks demonstrated and also tried to crash the meeting. Since I was working security there I got to talk to some of them and none of them could tell why they were so afraid of RTD. They had no examples to present to prove their fears were based on actual events backing their fears. I never could convince them of the element of CHOICE in our movement. Didn`t surprise me since in my 28 years as a patient escort at our local Planned Parenthood none of our protesters could ever grasp the meaning of choice either. The difference being that the NDY people, at least the ones I talked to, see this has a personal issue and not a religious one.