Bjarnason

Euthanasia for Individuals with Disabilities

By Halldor K. Bjarnason	Vancouver, B.C - January 1998
Barrister and Solicitor

The purpose of this paper is to aid in developing a position with respect to the taking the life of, or intentionally not providing life support to, a person with a severe disability - on the grounds of the disability.

Key Points

In preparing this discussion, I assume agreement with the following:

- Our society values human life:

- People with moderate-to-severe disabilities, are equal members of society; and

- It is appropriate to assist a person suffering from severe physical mental or emotional pain.

In discussing this issue, it is important to note several key points:

Currently in Canada, assisting a person to commit suicide is illegal, and depending on the circumstances, constitutes either murder, or in less serious circumstances, "aiding or counselling suicide."

Suicide (and/or attempting suicide) is NOT a criminal offence in Canada. It was illegal until about 10 years ago, in order to give police the power to control suicidal individuals. This has been replaced with provisions under the Mental Health Act.

Physicians' professional obligations, under the College of Physicians and Surgeons, require them to "make all reasonable efforts to sustain life... unless such efforts would not restore any quality of life." (It appears that determining what constitutes a reasonable quality of life is left to the physician's discretion.)

In Canada, the Charter of Rights and Freedoms prohibits discrimination on the grounds of mental disability. As a result, any decision that a person with functioning mental capacity is permitted to make, can also legally be made FOR a person who can't make their own decisions, by their representative. As a result, if a law was passed which followed positions such as those taken by the Coalition of People with Disabilities, enabling only people who have the requisite mental capacity to request assistance in committing suicide, it would likely be immediately struck down as both discriminatory and unconstitutional.

Depression is a treatable medical condition. Many people who wish to end their own lives are in a depressed state.

There is evidence that both physicians and nurses, and in many cases members of the general public, have a belief that a person with disability has a very low quality of life, and thus, the medical professions often connect "disability" with "suffering." This belief, often in direct contrast to the person with a disability's own perception, leads to the belief that the person would be better off dead than "suffering.^"For example, a study in the Annals of Emergency Medicine 23 (1994) pp.807-812 found that 86% of high-level quadriplegics rated their lives as "average" or "better than average." In the same study, 17% of doctors and nurses surveyed thought they themselves would have an "average" or "better than average" quality of life if they became disabled.

Problem

The key problem in the whole assisted-suicide/euthanasia debate is the presumption that the options for a person with a disability are either:

a) To live and suffer, or

b) To be allowed to die to escape their torturous existence,

and the news media and other commentators tend to base their discussions on this simplistic view of the circumstances.

There are several factors relating to disability, often over-looked, that need to be considered before wandering into the assisted-death debate.

Is the person really in pain and/or suffering, or is that the PERCEPTION of the care-giver. As noted above, there is a documented perception among nurses and doctors that individuals with moderate to severe disabilities have a low quality of life, are "suffering" from either their disability or the public's reaction to their disability, and are better off dead.

In concluding that a person is dying and thus needs "assistance" in speeding the process, is the perception based on the fact that the person has a terminal condition, or simply a severe disability? Often, a chronic condition or disability is perceived as a ^"terminal illness" by uninformed members of the medical profession.

The evidence presented in the 1996 BC Health Care Access Project, co-ordinated by Nancy Noble, indicates that medical personnel in some circumstances don't understand the difference between a disability and a terminal illness. As a result, there are presumptions made that individuals with non-terminal disabilities, such as cerebral palsy, are in a terminal state and beyond recovery.

If the individual is supposedly in pain, but is unable to communicate (such as Tracy Latimer), how has the pain been assessed? Is the assessed pain presumed or real? What does the individual making the claim of pain have to gain?

If the individual with a disability is actually in physical pain, what has been done to control the pain? Physicians such as Vancouver doctor Will Johnston, and American advocates like Wesley Smith, submit that with proper understanding, all pain is controllable. However, pain management is not a key part of medical school curriculum. As a result, many physicians are ignorant with respect to techniques for controlling pain without causing adverse effects. This leads to erroneous beliefs about creating a chemical dependency.

In addition, has an effort been made to ascertain the REAL cause of the pain? For example, is a severe, agonizing neck or back pain really a result of cerebral palsy? Or, is it a result of insufficient exercise, a poor mattress, an improperly fitted wheelchair, or other factors? Can this problem be corrected? In the Latimer case, Tracy's alleged pain was caused by a dislocating hip. However, Latimer apparently refused corrective surgery - surgery that would reduce the pain.

If the pain is emotional - i.e. the individual with a disability wants to die - claiming that their disability is "too much" (a view that is often supported by the medical profession, and hence perceived as "normal" or a natural reaction to having a disability), what has been done to ascertain the REAL cause of pain? With a disability, there are often different stages of "coping": denial or rejection, depression, and acceptance. The individual will usually move between these stages. With support, the progression is faster, but without help, the individual can remain at the depressed level indefinitely. If the medical professional views depression as b a rational part of having a disability, he/she would not recommend treatment for the depression.

Consider the scenario of an individual with a disability, living environment which provides no meaningful mental or emotional stimulation - for example: a non-verbal young adult with sever spastic cerebral palsy, living in an institution or senior's facility. After many years in a frustrating environment, she has reached the conclusion that she wants help to die. Is the desire to die based on a rational analysis of her options? If, instead of having assistance with her death wish, she is provided with a stimulating environment, would the desire for suicide still exist?

The upshot is, particularly for a person with a severe disability, there is often a misperception by others about their quality of life. On the occasions when the perception is correct and the existing physical or emotional pain causes the individual with a disability to believe that "life is not worth living," the causal factor is often unrelated to the disability. As a result, rectification of the problem may be possible, but not often considered.

Effect of Legalizing Assisted-Death

Currently, the only country which has legalized euthanasia is the Netherlands. In 1990, as a result of anecdotal information, the Dutch government commissioned a report to determine the occurrence of involuntary doctor-assisted suicides.

The figures from the Remmelink Commission are interesting. There were almost 130,000 deaths in 1990 in Holland. Approximately 43,300 were sudden - heart attacks, accidents, etc. and involving no physician's intervention. However, of the remaining deaths, 2,700 were doctor-induced at the patient's request, 1,0 persons died from involuntary euthanasia (without patient's consent), and 8,100 patients died from an intentional overdose. The upshot is, 8.5% of Dutch deaths were physician-induced, and over half of these were involuntary or non-consensual. (p.98-99, Forced Exit)

This suggests that the legalization of euthanasia may lead to the abuse of power by physicians. Ultimately, the individuals being killed are those who are most vulnerable - those with severe disabilities and those without a support network.

The New Your State Task Force on Life and the Law, in 1994, after studying the issue for a year, concluded unanimously that legalizing euthanasia would lead to severe abuses. Similarly, the British House of Lords, in their study concluded that the potential for abuse outweighed any possible benefits of legalizing assisted suicide. It is interesting to note that these studies were carried out by committees whose membership included people with initially strong pro-euthanasia positions.

A secondary consideration, highlighted by Wesley Smith, is the fact that when assisted suicide is available, it is perceived as a means of relieving another^'s "burden." Essentially, individuals request to be put to death out of guilt feelings for being a burden to care-providers, family, friends, etc., without wishing to die for their own sake. Particularly for isolated individuals (as are any persons with severe disabilities), this guilt can be easily imposed on a dependent person by a caregiver. This makes the request for "assistance to die^"appear voluntary, but in actuality, the request is involuntary and an abuse of the system. Unfortunately, if assisted suicide is legalized, there is NO way of safeguarding against this phenomenon.

A major problem with legalizing assisted death is that all the options are rarely considered. The decision to invoke or assist death, even when made with the best intentions, is often based on fictional beliefs. As a result, there is no way to design a system that will safeguard the rights of particularly vulnerable members of society - including individuals with disabilities.

Summary and Recommendations

For organizations that advocate on behalf of individuals with disabilities, it is important that they aim at promoting the highest quality of life for those members of society with disabilities. With the current debate narrowly focused on either suffering with a disability or alleviating the suffering by death, there is little impetus to develop reasonable alternatives. By allowing the legalization of assisted death for persons with disabilities, either through statute change (revising the Criminal Code) or common law (court decisions such as Latimer), there will be no impetus to develop alternatives. Assisted death will often be viewed as THE alternative.

From a purely rights-based analysis, there are grounds for the argument that "assisted suicide should be legalized to allow individuals with disabilities equal access." However, the problem is that: a) the desire for self-destruction often arises due to an untreated medical condition (depression), b) the right would also have to be extended to persons unable to form their own decisions, or who cannot independently communicate their wishes, allowing for potential abuse; and c) the option is open to pressure, making it open to persuasion or coercion, minimizing the benefits of the "freedom of choice". It is important to remember that in the Sue Rodrigez case, the Supreme Court of Canada, accepting that a ban on assisted-death was an infringement on rights, found the infringement justified given the huge potential for misuse.

While I am in no way implying that all the physicians and nurses have a secret wish to execute their patients, the reality is, medical professionals are often as ignorant as the rest of the population with respect to disability. With a common view that living with a disability is a traumatic experience, there is a belief that individuals living with disabilities wish to "escape" their "prison". As a result, legalizing euthanasia, based on the Dutch experience, will increase risk to individuals with a severe disability.

I recommend a policy that:

Strongly opposes legalized assisted-death;
Advocates for the same quality of medical treatment for people with disabilities as their able-bodied peers; and
Encourages the enlightenment of the medical profession.

My research indicates that while there is a legitimate argument for a "right to choose," there are inherent flaws in the medical system with respect to attitudes towards individuals with disabilities. Any organization with a mandate to advocate for improving the lives of individuals with severe disabilities would be delivering a conflicting message by advocating a pro-euthanasia position.

I am happy to provide further information. References are available for all of the above points.

/hkb

(604) 733-0744 or (604) 205-9455