Opposition to medical-assistance-in-dying–Part 3

A major reference for most of the medical-assistance-in-dying (MAID) opposition articles that I have read is a Michigan Law Review article, Physician-Assisted Suicide in Oregon: A Medical Perspective, written ten years ago by Herbert Hendin and Kathleen Foley.  Hendin has been a professor in psychiatry and behavioral sciences at prestigious universities over a 60-year career.  He has written extensively about both suicide and assisted suicide.  He opposes both.

Kathleen Foley is a neurologist with impressive credentials, associated with several medical centers and programs during her professional life.  She and Hendin have collaborated as co-editors of a book that argues against assisted suicide, The Case against Assisted Suicide: For the Right to End-of-Life Care.

Suicide shaming

Hendin and Foley always refer to “assisted suicide” when discussing MAID laws.  They insist that someone who chooses to use these laws to take a lethal dose of a prescribed drug is committing suicide, even though these laws routinely provide that MAID is not suicide: such a death (in Oregon) “shall not, for any purpose, constitute suicide, assisted suicide, mercy killing, or homicide under the law.”  

One tell-tale sign of an opponent of MAID is to notice the words used to describe any of the seven MAID laws now found in Oregon, Washington, Vermont, District of Columbia, Colorado, California, and Hawaii.  The word “suicide” is seldom used by those who support MAID laws to describe what happens with a MAID patient.

A leading professional organization committed to suicide prevention has declared that MAID is not suicide.  The  American Association of Suicidology (AAS) explains that in suicide a life that could have continued indefinitely is cut short, while in MAID a person who is dying hastens their death to avoid an undesired death process.  Suicide usually involves a mentally ill person, while MAID does not.  MAID patients would prefer not to die, but have decided to avoid an inevitable and undesirable death with the help of MAID.

The insistence of Hendin and Foley to use the terms suicide and assisted suicide, and their refusal to use terms such as right-to-die, hastened death, physician-assisted-death, or MAID amounts to suicide shaming.  They know that suicide is inaccurate and pejorative, resulting in opprobrium, shame, and guilt for the families of people who take their own lives, whether or not they are terminal, and carries with it only negative connotations.  Suicide shaming reminds me of racism and ethnocentrism–an effort to belittle someone who is different or whose values are different.  Wherever possible, I will avoid using the word suicide, including the phrase physician-assisted-suicide (PAS), a favored description of those opposed to MAID.

Palliative care

Hendin and Foley believe that the alternative to MAID is simple.  What is needed is “competent care for the dying” instead of “physician-assisted suicide.”  This dichotomy, however, does not exist in the real world.  It is not a matter of either competent care for the dying or MAID.  It should be both competent care and the right to choose to die before one’s body (or mind) deteriorates to a point that is unacceptable to the individual.  If a person makes the choice for MAID, it is not because that person is suicidal.  It will be because he or she does not want to suffer through what will be undesirable, tortuous, painful, emotionally unacceptable, and/or futile.

Perhaps the most significant failure of the Oregon law, according to Hendin and Foley, is the failure of the OPHD to assure that all Oregon physicians who participate in the law follow best medical practices with regard to palliative care.

Several years ago, I heard a presentation by a palliative care physician from Oregon, who explained that the purpose of palliative care is to help sick people feel better. Palliative care prevents or treats symptoms and side effects of diseases and treatments, along with emotional, social, practical, and spiritual problems that may result from a patient’s circumstances.

Most important, palliative care is not just for end-of-life illnesses. It should be provided when any illness is diagnosed, throughout treatment for the illness, during a follow-up period, and at the end of life.  Palliative care should be available at the same time a person is given treatments meant to cure or treat the disease, as well as when curative treatments are ended.  Hospice, in contrast, applies palliative care only when curative treatment has ceased and a person is preparing to die.

A person being treated for cancer, for example, should receive palliative care throughout the treatment process.  If the person cannot be cured of the cancer and no further treatments are available or wanted by the patient, the person may choose continued palliative care through hospice or choose to end their life at that point through MAID in those jurisdictions where it is available.  Those jurisdictions now include about one-third of the population of the US.

Hendin and Foley support more education for physicians about palliative care because some data suggest that the more doctors know about palliative care, the less likely they will favor MAID.  This reasoning places the doctor in the position of advocate for a particular choice by a patient.  I prefer doctors who are neutral about choices and present each one to a patient fairly and fully.  I don’t want advocates for medical options treating me.  I do, however, think more education about palliative care would benefit patients, especially if doctors can put aside their personal views about MAID and treat the patient, rather than promote their own preferences and personal values.

Safeguards

One complaint made by Hendin and Foley is that the Oregon Public Health Division (OPHD) does not produce more data that might be of use to researchers.  As a result, Hendin and Foley rely on six case studies based on limited information gleaned from doctors, families, newspaper accounts, and others who have cared for some of those who have used Oregon’s MAID law (known as the Death With Dignity Act–DWDA) to reach their conclusion that DWDA “safeguards are circumvented in ways that are harmful to patients.”  While this may be true for a handful of Oregon residents, about whom they have insufficient information, no extensive data suggest that the safeguards are routinely ignored or are inadequate, though I am willing to consider that possibility if and when sufficient evidence is produced showing the failure of safeguards.  

The role of physicians and other professionals in Oregon’s DWDA

Another significant failure of Oregon’s DWDA, according to Hendin and Foley, is that it does not require physicians to behave like social workers by “inquiring into the source of the medical, psychological, social, and existential concerns that usually underlie requests for assisted suicide. . . .”  While neither Hendin nor Foley actually knows these concerns any more than I do for any other person, I know from my own experience of over 25 years talking with hundreds of people who are considering hastening their deaths or who support their own right to do so that there are many common reasons for wanting access to MAID, especially to assure that they experience a good death.  Often, palliative care can satisfy those concerns and reasons, but not in all cases.

In the most painful illnesses, palliative sedation is often available.  However, not all of us wish to be sedated into unconsciousness until we die, whether that takes a few hours, a few days, or a week.  People with serious neurological conditions (for example, ALS, Huntington’s, dementia) may not want to live past a time when they are minimally functional, especially cognitively functional.  For these patients, palliative sedation is not available because they likely do not suffer sufficient physical pain or have a terminal diagnosis that justifies its use.  The same may be true for some of us who live with life-threatening and debilitating health conditions that make it impossible to enjoy life or derive sufficient satisfaction from it, even when we have unlimited resources to assist us.  For these individuals, an alternative to continued medical treatment may be a hastened death.

To be clear, I am not suggesting a hastened death for anyone.  But I am suggesting that there should be such an option for those who want it for themselves.

Many of the concerns of Hendin and Foley involve the possible inadequacy of physicians, psychiatrists, and psychologists who become involved with DWDA patients.  It is certainly possible that the best medical and mental health care is not practiced in Oregon (or any other state).  If so, this should be remedied.  However, without an extraordinary intrusion into the privacy of patients without their consent, it is not possible to know whether inept medical/psychological care is leading to unnecessary use of Oregon’s DWDA.

Though I don’t question that their instincts and insights into the human condition may be excellent, exceeding those possessed by most of us, many conclusions of Hendin and Foley in this paper are hypotheses, not proven or even supported by sufficient evidence.  Many of their opinions are just guesses or based on prejudice.  For instance, they believe that anyone who wants to hasten their death requires “psychiatric evaluation.”  This prescription is likely offensive to most of us who support a right to die.  I know many people who support this right and only rarely have I had reason to think that anyone expressing such views needs to see a psychiatrist.  As Abraham Maslow once said, “I suppose it is tempting, if the only tool you have is a hammer to treat everything as if it were a nail.”

Hendin and Foley also insist that anyone who wants to hasten their death is “usually ambivalent.”  I know that some such people are ambivalent, but this is not the usual state of those I encounter.  A related assertion is that “Physicians inexperienced in dealing with suicidal patients tend not to hear this ambivalence.”  This assumes that patients who are dying and wish to hasten their deaths are “suicidal.”  It also assumes inadequate training of physicians about suicide.  While these assertions may be true, Hendin and Foley do not cite any evidence for them.

Using six limited case studies to draw broad conclusions about various purported defects in Oregon’s DWDA is like a lawyer, whose first criminal case involves an absolutely innocent defendant, concluding that all defendants must be innocent.  The conclusion may be true for that case, but not for most cases.

An even more poorly-supported claim by Hendin and Foley is that if someone asks a physician for assistance under Oregon’s DWDA, they are desperate and in “mental and physical distress.”  This may be true for some, or for a brief time for all those who receive a terminal diagnosis, but it is not universal, especially after the diagnosis is accepted, as the case of Brittany Maynard demonstrates. Hendin and Foley also claim that if someone who wants MAID is treated for symptoms of desperation, anxiety, depression, and suffering, “their wish to die usually disappears.”  Further, they claim that most requests for assisted suicide are by individuals with these symptoms.  None of these opinions are sourced in their article.

I can’t imagine a clearer example of physician paternalism than the role of doctors that is promoted by Hendin and Foley.  They cling to the traditional, paternalistic view that doctors know best, that what doctors say should be unquestioningly followed by the patient.  Any notion of a shared decision-making relationship between doctor and patient would destroy their view that hastening one’s death is nothing but plain old suicide.

Coercion in Oregon’s DWDA process

Hendin and Foley suggest the possibility of coercion in the DWDA process by using a  case study that does not include sufficient information to know whether the individual was coerced, though she could have been.  Coercion is a major argument against MAID among disability rights advocates; it occurs in many situations we encounter in life.  Coercion is the purpose of advertising, though it is called by other names.  It would be extraordinary if it did not happen in the DWDA process on occasion, but no data suggest it is widespread.  As I have argued in parts 1 and 2 of this series, the use of social workers as gatekeepers in the DWDA process would do more to prevent coercion, both active and passive, than any other suggestion of which I am aware.

Depression and MAID

Depression is referenced throughout the paper as a major stumbling block to DWDA participation, though exactly what level of depression would be needed is not clear.  Hendin and Foley seem to think that anyone who wants a hastened death in the face of terminal illness is depressed. There is no simple way to deal with depression in the DWDA context.  If the standard is too too strict, no one would qualify to use the law.  At the other extreme, no one would be denied.

Most people probably would agree that a person suffering from a “Major Depressive Disorder” would not be able to make an informed and competent decision about DWDA participation.  Determining a “Major Depressive Disorder” requires a clinical finding of five or more symptoms out of a list of nine, along with other criteria as described in the Diagnostic and Statistical Manual, 5th Edition.  A lesser degree of depression creates room for disagreement regarding a person’s ability to make an informed and competent decision.  Again, we need social workers to determine the need for appropriate evaluation of a patient who shows signs of depression to assess its affect on competence.

Dignity

I note that the use of dignity in describing MAID has been controversial since the adoption of Oregon’s law and the use of the phrase death with dignity by OPHD.  The term is a malleable concept, subject to many different meanings.  In fact, some proponents of MAID use the term to refer to conditions faced by many disabled people who require assistance with personal care–including toileting, eating, breathing, and moving from one place to another.  What may be viewed as undignified to someone who is not disabled is a fact of life for many disabled individuals, who rightly resent having the reality of their lives called undignified.  Dignity is a term that is better left in the dictionary, unused in reference to discussions of MAID.

Autonomy and control

Because Hendin and Foley prefer the traditional physician-patient relationship, they view a patient’s desire for autonomy and control over their life and death as a weakness or defect in personality or character.  It is “related to patients’ fears of the future,” their inflexibility, and their desire not to be “dependent on others.”  I don’t like being dependent on others, but I am a realist.  I know that dependence is always a fact of life at some level, so I try not to be too stubborn in resisting it when it is necessary.

As to control over my life and death, I would ask Hendin and Foley if I would have a more balanced personality if I let someone else control my decisions.  Maybe they would like to play that role in my life.  If control is so terrible, a personality defect even, how do they account for the large number of Oregon DWDA patients who receive lethal drugs and never use them?  Control means self-determination and independence–values widely shared by both the opponents of MAID and the proponents of the right to decide one’s own life and death.

Many in the disability rights community who reject MAID disrespect people with disabilities as “weak, incompetent, easily coerced and inclined to end their lives,” in the words of disability rights scholar Anita Silvers.

Finis

I would like to find common ground with the suicide-shamers, the disability rights advocates, and those with religious objections to a right to die, but I have found only a few areas where we share common ground.  The need for universal health care and related services should be an area of agreement, but even that is fraught with religious objections by some who would limit what medical treatments and procedures are allowed in some religiously-affiliated facilities, notably those controlled by the United States Conference of Catholic Bishops.  

Disability advocates favor self-determination and autonomy as long as we accept their values about a right to die.  I recognize the discrimination that the disabled have faced and still face, but that should not limit my choices, or their choices.  We should all have the full blessings of liberty and see the distinction between what Katharina Heyer has termed “the decaying and dying body, and the disabled and living body.”

Whether we are disabled or not disabled, if we exist in a “decaying and dying body,” we should have the autonomy to seek the best good death that we can.