When safeguards become roadblocks, Part 1

In the nine states/jurisdictions in which medical assistance in dying (MAID) is allowed through legislation or referendum, the insistence on extensive safeguards has served less to protect vulnerable individuals than to limit access to MAID.  This limiting is a primary goal of opponents of MAID, including the Catholic Church, other anti-choice groups, and some disability advocates.  

Many MAID proponents also support limiting access because they see the limitations as a way to overcome political opposition and achieve legalization of MAID.  But when access is too circumscribed, people who are suffering are denied an opportunity to end their suffering peacefully and on their own terms.

Such so-called safeguards appear to be unnecessary.  In Montana, the one state that has adopted MAID by judicial decree, access is limited primarily by the lack of public information about which clinicians are willing to participate in the practice.  Even though none of the safeguards common to MAID-law states are in place, in Montana, no outrages to vulnerable populations have come to my attention.

The other states that have adopted MAID–Washington, Vermont, Maine, District of Columbia, Colorado, California, Hawaii, New Jersey– have all followed protocols similar to those in Oregon, the first state to authorize MAID over 25 years ago.  The protocols were intended to safeguard against sick people deciding to end their own lives with a lethal prescription provided by a clinician peremptorily, because of depression, or because of pressure from relatives or others.

Thaddeus Pope explains why the statutes adopted by states are so similar: 

It is understandable why each jurisdiction that legalizes medical aid in dying enacts a virtually identical statute. Politically, it is easier to defend the legitimacy and safety of a law with a proven track record. However, political expediency does not necessarily entail ethical justifiability. The ethics of access to medical aid in dying is important to oncologists, because nearly 80% of patients using medical aid in dying have been diagnosed with cancer. (Citations omitted.)

One argument to increase safeguards is to assure that greedy heirs will not encourage vulnerable next of kin to hasten their death.  The more than twenty-five years of experience in Oregon has shown that this argument has little, if any, merit.

Terminal illness criterion

The central common point of agreement among the nine statutes, and arguably Montana’s Supreme Court decision, is that the person choosing MAID must be terminally ill. “Terminal illness” is defined in all MAID jurisdictions, except Montana, as six months or less to live, based on reasonable medical certainty.  Montana’s Rights of the Terminally Ill Act provides that 

“Terminal condition” means an incurable or irreversible condition that, without the administration of life-sustaining treatment, will, in the opinion of the attending physician or attending advanced practice registered nurse, result in death within a relatively short time. (Emphasis added.)

Why a state may decide when it is legally acceptable to medically hasten death from an illness that will inevitably kill a person is unclear, since none of these states prohibit taking one’s own life by other means.  The six-month standard probably was seen as a pragmatic limitation to obtain public and political support, and is widely in use in the medical system.  However, this should be a privacy issue between a patient, clinician, and family or friends whom the patient may want to involve. 

If a terminal illness, broadly defined, is to remain a standard for access to a MAID law, the timing of the hastened death should be left to the decision of the patient.  Using Montana’s more flexible definition of terminal illness may be a good alternative to the rigid six-month requirement, if “relatively short time” is left to the patient to determine.

All MAID states require that at least two physicians agree about the six-month prognosis.  Perhaps in recognition of Montana’s statute, Pope has suggested changing the definition of terminal illness to death within a reasonable period of time.  Pope discusses how this process could be modified without endangering participants:

Both the prescribing and consulting physicians must determine that the patient has “6 months or less to live.” But this rigid time frame excludes patients with grievous and irremediable conditions that cause suffering intolerable to the individual. Some medical conditions may cause individuals to irreversibly decline and suffer for a long period before dying. Instead of demanding a strict temporal relationship between a medical condition and death, these statutes might be more flexible and instead require that death be “reasonably predictable.”

Final Exit Network (FEN), for example, accepts patients who fit into the terminal illness category, but does not limit such people to a six-month prognosis and does not require a terminal illness.  Instead, FEN focuses on the broad criteria “suffering” and “quality of life”:

Final Exit Network recognizes that many people with unbearable suffering or an intolerable quality of life do not qualify under existing medical aid in dying laws, which are currently only available in a handful of states. Applicants to the Exit Guide Program must demonstrate serious physical suffering or an impending loss of selfhood, but they need not be terminally ill or within six months of death. 

In addition to these general criteria, FEN has specific criteria, which will be discussed later.  These criteria have proven over many years to be workable, though determining the exact boundaries is sometimes difficult, one reason FEN uses a Medical Evaluation Committee (MEC) of three volunteer medical doctors to review applications.  Other people also assist in the process both before acceptance into the education and training program, and afterwards,, including a coordinator, an interviewer, a senior exit guide, and an associate exit guide.  These seven volunteers, along with a supervisory group of three experienced FEN volunteers, help assure the integrity of the program.  FEN usually has the services of about seven or eight volunteer clinicians to participate on the MEC when called upon to do so.

Adults-only criterion

Thaddeus Pope has argued that limiting access to MAID laws to adults aged 18 and over is unduly restrictive: 

Many states already allow terminally ill mature minors to withhold or withdraw life-sustaining treatment. If a minor is mature enough to make other life-and-death health-care decisions, then he or she is also mature enough to choose medical aid in dying. (Citations omitted.)

In addition, I note that most states place criminal liability at age 17 and allow marriage, a momentous decision in its own right, and emancipation at ages younger than 18, though often with parental involvement in the decision.

Mental competency criterion

All states that allow MAID require that the person be mentally competent at the

time of the request for assistance, as well as at the time of the hastened death, often referred to as “contemporaneous capacity.”  Pope has noted that the requirement of both terminal illness and mental competency presents unnecessary roadblocks for some suffering people: 

[T]his dual mandate excludes many patients who have no other exit option. For example, patients with advanced dementia will not have the capacity by the time they are terminally ill. For 40 years, patients have been able to complete advance directives to withhold or withdraw life-sustaining treatment.  (Citation omitted.)

Arguably, an advance request for MAID is not significantly different from traditional advance directives that control medical care and treatment after a person has become mentally incapacitated.  In such directives, a person can request certain medical treatment or care and can forgo any treatment or care as determined by the person while still mentally competent.

Administration of lethal drugs

All MAID jurisdictions currently require an eligible person obtain lethal drugs from a prescribing clinician and then take the drugs themselves; that is, self-administer.  They may have no assistance in the final act, whether it is lifting the glass to the mouth and swallowing or initiating a plunger when the drugs are administered through a gastrostomy tube or similar method (as can be done in California and perhaps in other jurisdictions).  The key is that the drugs must be “ingested.”  Pope offers these thoughts on this process:

Although this requirement may help assure voluntariness, it has significant drawbacks. First, it excludes patients who lose the ability to self-administer before they otherwise become eligible. Second, self-ingestion is associated with complications. For example, around 3% of these patients had difficulty ingesting or regurgitated the medication. Other patients regained consciousness after ingestion. Such complications may rise as clinicians increasingly use less-tested, lower-cost medications. In contrast, Canadian patients avoid all these problems, because physicians usually administer the medication. As a result, only 5 of more than 2,000 Canadian patients who used medical aid in dying self-ingested the lethal medication.  (Citations omitted.)

Part 2 on this subject will continue to examine criteria used for MAID eligibility as contrasted with the criteria used by FEN’s Exit Guide program, look at other impediments to MAID, and acknowledge one recent minimal change that has been made to Oregon’s law.