Opposing the right to die

One of the most organized efforts to defeat right-to-die (RTD) legislation wherever it is proposed is spear-headed by Not Dead Yet (NDY) under its current President, Diane Coleman.  NDY claims to represent, or be representative of, at least 12 disability rights groups who oppose RTD legislation.  Coleman’s failed appeal to Maine Governor Janet Mills to veto the RTD law, passed narrowly by Maine’s legislature*, presents an outline of the arguments used to oppose such RTD laws.

Let’s assume that 100% of those who seek the right to die are disabled, as NDY claims.  From that assertion, NDY argues, that because a lethal prescription is cheaper than courses of medical treatment that could be life-sustaining, the profit-driven health care system will choose the least expensive way to rid itself of people who are costing it profits.  However, no evidence that this is a widespread practice is provided by NDY.

Certainly, the US has an often dysfunctional health care system.  Since I turned 65, I have received some of the best health care in my lifetime through Medicare and a supplemental insurance policy.  Those coverages cost me $319 per month (includes no premium for Part A, and premiums for Part B and Part D, and a supplemental insurance policy).  Everyone should have health care at least as good as I have received under this system.  Because Medicare is not-for-profit, the incentive to deny life-saving treatment I may need is not the same as Coleman claims it is for profit-making insurance companies.

However, the problem for people who are dying from an incurable disease is that there is no treatment that will cure them, and they may face weeks or months or years of suffering, which they wish to avoid.  At some point in every disease process, most people, I suggest, recognize that their death is getting nearer and is inevitable no matter what treatments are offered.

For example, there are over 600 neurological diseases, many of which can be treated and controlled, at least for a time.  However, many are incurable and eventually result in intolerable suffering and/or a quality of life unacceptable to the sufferer.  Those I hear about most include ALS, Huntington’s, Parkinson’s, Lewy Bodies Dementia, and Alzheimer’s.  With most of these diseases, the individual may choose not to live until they have no life that is meaningful to them or they lose control of their bodies and minds due to the disease.

I would never deny or seek to deny such persons the personal autonomy to make such decisions for themselves.  I also reserve the right to make such a decision for myself.  However, that is not the position of NDY, which supports the wholesale denial of autonomy to individuals to decide when they no longer have a life worth living.  NDY believes it is suited to make life and death decisions for others.

I also agree with NDY that physicians make mistakes in diagnoses and prognoses, but that is a poor excuse to deny patients, who may receive second or third opinions from other clinicians, an opportunity to prevent unwanted suffering when their diagnosis or prognosis is confirmed to their satisfaction.

NDY also asserts that one problem with current RTD laws is that if patients cannot find a clinician willing to write a lethal prescription for them, they will keep looking until they find one amenable to carrying out their rights under current RTD laws.  Of course, this is exactly what people do in many medical as well as other situations, such as finding a therapist or a lawyer.  Also, students may become dissatisfied with a college curriculum and decide to switch to a school that is more amenable to their interests.  In spite of NDY’s assertions to the contrary, there is nothing wrong in seeking services that satisfy one’s needs.

The safeguards found in all RTD laws are roundly condemned by NDY because no regulations mandate investigations and enforcement actions to assure that neither doctors nor caregivers nor family members coerce patients into ending their lives prematurely.  The safeguards NDY finds unacceptable are repeated requests for a lethal prescription, mental competence of the patient, waiting periods, the involvement of two physicians, the opportunity for referral for a mental status evaluation if a physician believes a referral is warranted, and a terminal diagnosis and prognosis by qualified clinicians.  It seems that NDY would be satisfied only if some other authority would be involved with second-guessing two or three medical professionals, creating another infringement on the personal liberty of the patient.

Further, we have laws in all states that protect the elderly and disabled from abuse.  Prosecution of such cases is usually the responsibility of local district or county attorneys, or attorneys general.  If cases aren’t being prosecuted to the satisfaction of NDY, perhaps the organization should turn its attention to those prosecutors’ actions or inactions.

NDY also finds the personal decisions of terminally ill and suffering patients unacceptable because the reasons reported by their physicians about why they used a RTD law include factors such as  “loss of autonomy,” “less able to engage in activities,” “loss of dignity,” “losing control of bodily functions,” and “burden on others.”  Even if we assume that these reasons for using a RTD law are correct  (physicians are the source of these data and may not always know why a patient chooses the RTD), it is not anyone else’s right to decide for another what their reasons should be.  NDY’s view of this issue is paternalistic, degrading, arrogant, and presumptuous.

Finally, NDY misleadingly suggests that RTD laws result in increases in suicides (what NDY refers to as “suicide contagion”) among “those aged 35-64,” using data from 1999-2010 in Oregon that show a 49% increase in suicide during that period for that age group.  However, this sly misuse of statistics is easily discovered by looking at the death rates for suicide for the entire US population, rather than the narrow age range chosen by NDY for Oregon.  

According to the Centers for Disease Control, suicide rates went up more than 30% in half of the states between 1999 and 2016.  During this period, suicide rates increased in all but one state–Nevada.  In ten states, they increased between 38% and 58% during this period, and none of these ten states have RTD laws.  The Oregon rate of increase for all ages during this period was 28.2%–less than the average rate of increase nationwide.  

It is anyone’s guess why NDY chose this age range and these years of data to argue for a “suicide contagion” effect in Oregon.  According to the 2016 report by the Oregon Health Authority on that state’s RTD law, 80.5% of participants were age 65 or older, not middle-aged, the statistic used by NDY.  The suicide-rate-of-increase-for-those-aged-35-64 argument is a red herring at best, and intentionally deceitful at worst.  It chooses to ignore the fact that over half of all suicides are by firearm.  Instead of proposing solutions to firearm suicides, it attacks laws which account for less than one-tenth of 1% of all self-controlled deaths.

The main problem with NDY’s position on RTD laws is that they view all decisions to use RTD laws as suicides, rejecting the position of the American Association of Suicidology, which has found at least fifteen differences between suicide and the use of RTD laws.  See this article.

I have some of the best medical care available in the US, am fortunate to have no financial pressures, and live in a completely handicapped-accessible home (which we designed to be able to age in beyond physical disability).  As a result, I have none of the pressures that NDY believes would compel me to want to die.  Yet, NDY wants to prevent me from being able to obtain a legal, lethal prescription that I can use to hasten my own death when and if I decide that I no longer want to suffer through pain or live with no purpose, as I define that for my life.

The one common ground I share with NDY is the urgent need to make excellent health care available to all Americans.  I will work with them to achieve that purpose, but I will not support their efforts to decide for me that I cannot end my life at a time of my choosing with help from my physician.

* Maine’s RTD law was signed by Maine Governor Janet Mills on June 12, 2019, and goes into effect on September 17, 2019, 90 days after the end of Maine’s current legislative session.