Jeff Stephenson
The Debate of Quality of Life as it Relates to End of Life Decisions
In 1990, Terri Schiavo had a heart attack that placed her in a vegetative state for over a decade. The debate that surfaced as a result of her ailment had an enormous impact on how Americans viewed clinical autonomy. Clinical autonomy is the ability to appoint a person the control of your treatment in case you are not able to. Unconscious and unable to even feed herself, Terri was considered a “vegetable.” Prior to having a cardiac arrest, Terri had legally appointed her husband as the sole person in charge of her outcome in case such an incident occurred. Terri had told her husband that if she were ever in a vegetative state, she would want to end her life.
The choice to end one's life is never an easy one; there are a substantial number of factors that must be taken into consideration, particularly when one is disabled. Some see the practice as unethical, as people should not help others to meet their own demise. However, others sympathize with those who are in so much pain that their quality of life will never improve to a level the individual finds tolerable. This has sparked a debate about what is commonly called “physician assisted suicide” or Referred to as “aid in dying” by the supporters. This allows a physician to write a prescription for a lethal drugs if requested by someone who is terminally ill and mentally competent according to the author (Karaim 449).
Supporters cast the issue as one of individual choice, believing the terminally ill have a right to decide whether to obtain prescriptions that allow them to avoid final days stricken with pain or other debilitating conditions and choose the manner in which they meet an inevitable death (Karaim 452). Supporters are on the side of assisted suicide as a moral right. To let someone suffering be given an aid in a relaxed peaceful death on the patient’s own terms is a common idea with supporters. The debate regarding whether assisted suicide should be a legal and ethical decision continues to rage in many medical circles; despite this academic discussion, the effects on real people are incredibly tangible and long-lasting.
In order to best explore the concept of physician assisted suicide, it is important to understand the two primary types of euthanasia. Passive euthanasia is conducted when life-sustaining equipment or drugs are simply omitted or left out; this is equivalent to when someone is taken off life support and left to die of their own devices. Active euthanasia, on the other hand, is when direct inducement of death occurs; someone takes active measures to end the individual's life (Asch & Dekay, p. 891). There are many who debate on which type of euthanasia is more humane; some actually believe that active euthanasia is more humane, as it allows those who are in intense pain and anguish to end their suffering; however, its status as an active and knowing termination of a life leaves it the most controversial of the options available for physician-assisted suicide (Rachels, p. 78).
Passive euthanasia is the kind most often utilized by medical professionals, as most acceptable cases of euthanasia occur when the patient's quality of life is so low that they are potentially unrecoverable; their condition would kill them if not for medical intervention. Effectively, the passive vs. active argument boils down to how one considers the role of the physician in the assisted suicide: are they allowing the body to fail as it inevitably would without medical intervention, or are they actively taking steps to hasten the end for their patient at their request? The difference between the two is what seems to stymie many on both sides of the debate, as doctors do not want to kill their patients, yet may be forced to by the medical realities of their patients' condition and their possible wishes. Simultaneously, passive euthanasia does not put the direct ending of life in the hands of another, but may prolong suffering and take up valuable resources that could go toward helping others who have actual issues.
One of the biggest questions regarding euthanasia is the possibility of a 'slippery slope' occurring, wherein allowing euthanasia to be committed on some people will make it much easier to expand the practice. As a result, even involuntary euthanasia would be much more likely to become acceptable. Opponents of physician assisted suicide cite this slippery slope as one substantial reason to not allow the practice; they believe that it would make it far too simple to apply euthanasia to incredibly troublesome and complicated situations. According to the slippery slope argument, those who accept the practices of voluntary euthanasia or physician assisted suicide will open it up in the future for even more extreme practices to become acceptable; to that end, the first step must be resisted in order to prevent these other (arguably worse) situations from occurring (Lewis, p. 197).
However, these concerns have some opposition, as euthanasia advocates state that laws could be put in place to prevent truly unethical practices of euthanasia (including the aforementioned involuntary euthanasia), thus rendering these concerns somewhat moot (Dayton, 2010). This has already been put into effect in the Netherlands, where studies have been conducted reviewing the past two decades of the practice of euthanasia; according to research, "public control and transparency of the practice of euthanasia is to a large extent possibleno slippery slope seems to have occurred" (Rietjens et al., p. 282).
The issue of physician assisted suicide is often chalked up to the concept of 'quality of life,' in which the relative enjoyment or ability for a human being to engage in fulfilling and pleasurable pursuits is considered. Often, the argument for assisted suicide, particularly in the disabled, is that their quality of life is so far below others that the very life itself is not worth continuing. To that end, the issue of 'quality of life' is central to the debate regarding physician assisted suicide.
Established by various literatures, the quality of life position is based on societal norms and viewpoints. Lennard Davis in “Constructing Normalcy” points to how everything is measured from the “average” or the bell-curve. People considered unordinary or on the extremes of the bell-curve are looked at differently, most of the time in a negative light if disabled. This is because people with disabilities cannot do as many normal activities. Thus, they are deemed to have a low quality of life. “Since it is only the experiences I have which are valuable and not life itself, then it is possible for my life to have a negative value if the negative experiences in my life outweigh the positive experiences.” (Smith, 50)
In the middle is sanctity of life. People who hold this position believe human life is sacred but is not an “absolute”. This side believes life should not be intentionally taken away but also that treatment should be given if it is predicted to be effective. Those taking this position look to see whether or not the value of the treatment is worthwhile. (51) Ironically, disability rights activists seem to stay away from the religious, sanctity of life argument of pro-life because it takes a more spiritual stance and most disability rights activists are atheists (like Harriet McBryde Johnson). They seem to side more with the vitalism argument. They argue that life can be lived in many different ways and could still be enjoyable regardless of a person’s disability (Johnson). Even Smith concludes that in actuality, sanctity of life and vitalism are too close to be differentiated since both are based on the fundamental, “preserve life if possible” position. Singer goes on to explain sanctity of life as a doctrine that absolutely prohibits either intentionally killing a patient or intentionally letting a patient die: “When those who uphold the sanctity of human life say that it is never right intentionally to take an innocent human life, they really do mean never” (Singer, 74).
Harriet McBryde Johnson argues that this kind of thinking will ultimately lead to assisted suicide since a patient’s perception of the value of their life ultimately depends on society as a whole. If the society in which a patient is part of believes their life is not worth living, the patient will come to this conclusion as well. Thus, Smith’s autonomous position really becomes a position of societal beliefs instead. Singer argues that the sanctity of life position is egocentric. This is because from the religious point of view (which sanctity of life is based upon), only the lives of humans are considered sacred. Singer believes all life should be equally sacred including those of animals.
Various arguments abound on either side of the euthanasia debate, with its numerous facets being weight and evaluated in terms of their moral standing. Passive and active euthanasia are distinctly different practices, yet each carry their own potential ethical value (passive euthanasia allows nature to take its course, while active euthanasia could potentially end unnecessary suffering). The slippery slope argument is often used by anti-euthanasia advocates to warn against the threat of increasing metrics for applying euthanasia, but has been somewhat debunked through research and studies in nations that have practiced euthanasia for substantial periods of time.
As it pertains to disability, the issue of physician-assisted suicide deals primarily with whether or not one believes one's quality of life is irreparably damaged through disability. While some experts argue that people adjust more to this problem than they commonly expect, medical professionals believe that the care given to someone with a disability, given appropriate intensity and diminishment in quality of life, should inevitably include questions about continuation of life with said disability. In order to address the attitudes people with disabilities experience, however, adequate and even-handed portrayals of people with disabilities in the media and in society may help to diminish the attitudes of those without disabilities regarding their perceived loss in quality of life.
Do people with disabilities actually have less quality of life than those without? Is it worth actually comparing these kinds of medical metrics to socially acceptable conditions? Is the status of a person's body an accurate indicator of how happy and fulfilling their life is? These are the questions and arguments that those on either side of the debate consider. The social and medical models of disability studies also explore these concepts in detail; according to the social model, people with disabilities are just different than those without, and their quality of life is not inherently affected by the disability itself. Conversely, the medical model claims that disability is a negative, and medical professionals are the ones who must decide whether or not their condition warrants continued existence.
It is these two opposing views - essentially boiling down to distinct definitions of the effect of disabilities on a person's life - that structure the debate regarding physician-assisted suicide of those with disabilities. While the debate continues to press on, in the wake of Terry Schiavo and other people receiving end of life care, understanding the motives and arguments of this issue can foster greater appreciation for the importance the topic holds for a great many people.
Works Cited
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Davis, L.J. “Constructing normalcy.” The Disability Studies Reader (2nd ed.). CRC Press, 2006.
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Johnson, H.B. “Unspeakable Conversations.” The New York Times, 2003 Feb 16.
Karaim, Reed. “Assisted Suicide”. CQ Researcher 23.19 (17 May 2013): pp. 449-472.
Lewis, P. “The empirical slippery slope from voluntary to non-voluntary euthanasia.” J Law Med
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Rachels J. “Active and passive euthanasia.” N. Engl. J. Med. 292.2 (January 1975): 78–80.
Rietjens JA, van der Maas PJ, Onwuteaka-Philipsen BD, van Delden JJ, van der Heide A. “Two
Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?”. J Bioeth Inq 6.3 (September 2009): 271–283.
Singer, P. Rethinking life and death: the collapse of our traditional ethics. Macmillan, 1996.
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