A Good Death?

We live in a period of history like no other. The science of medicine is just one example of our advanced civilization. Medical discoveries and advancements continue unabated, diseases are vaccinated against and in some cases practically eradicated, and conditions that would otherwise kill can be treated to extend life. On the flip side, dying can also be prolonged. Medical intervention can sometimes keep a person alive for months or years longer than if a disease, condition or injury took its natural course. When a person is diagnosed with a terminal illness or has an accident from which there is no hope of recovery, decisions about care need to be made — difficult decisions — all in the milieu of grief and fear. Sometimes loved ones want doctors to do “whatever it takes” to keep the patient alive. Other times, patient’s themselves want to “die with dignity”, referring to physician-assisted suicide. There is much debate surrounding such decision-making.

creative commons licensed ( BY-NC-SA ) flickr photo shared by Kalense Kid

In broad strokes, most evangelical Christians find physician-assisted suicide morally unethical and argued against fairly easily. However, the issues become more difficult when a loved one is lying in a coma, or is in a permanent vegetative state, or nearing the end of a terminal illness. This is what this essay aims to take a closer look at. At what point, if at any, is it morally acceptable to withhold or withdraw life-sustaining treatment from a terminally ill or injured patient? I will explore three possible instances in which, according to Scott B. Rae in Moral Choices, it is morally acceptable to do just that; when a competent adult refuses the treatment in the face of a terminal illness, when further medical intervention is futile and finally, when treatment harm outweighs treatment benefit.

In Canada, it is within a person’s rights to refuse treatment. Justice Robins of the Ontario Court of Appeals says:

The right to determine what shall, or shall not, be done with one’s own body, and to be free from non-consensual medical treatment, is a right deeply rooted in our common law. This right underlines the doctrine of informed consent. With very limited exceptions, every person’s body is considered inviolate, and, accordingly, every competent adult has the right to be free from unwanted medical treatment. The fact that serious risks or consequences may result from a refusal of medical treatment does not vitiate the right of medical self-determination. The doctrine of informed consent ensures the freedom of individuals to make choices about their medical care. It is the patient, not the physician, who ultimately must decide if treatment — any treatment — is to be administered.[1]

This means it is lawful for anyone who is conscious, aware of their situation, and able to communicate in some manner to request that no further efforts be made to treat their disease, condition or injury. This is also allowable if the patient has an advance directive or a proxy decision-maker. Being lawful, however, does not necessarily make it moral. Some may argue that such a refusal to treatment is paramount to suicide and that a person is obligated to make every effort to live.

Does the termination of life-sustaining treatment, by physicians or by patients, abuse the sanctity of life? This may be true if this life was our end goal. As Christians, however, we know that this life is only the beginning and death is a transition to ultimate healing and life in the presence of our Creator. Hauerwas suggests:

Christians are a people who are formed ready to die for what they believe…Life for us, therefore, is not an absolute, for that which we think gives our life form will not let us place unwarranted value on life itself. At the very least this means that accepting the fatedness of our ending is a way of affirming the trustworthiness of God’s care for us. It means I will not fight my death nor the death of others when it cannot be avoided.[2]

It is not suicide, then, when the situation is terminal and treatments no longer improve one’s situation. Suicidal people are those who seek to end their lives. People who terminate treatment most often do not want to die, but rather are making the decision to refuse more treatment based on the knowledge that it is no longer helping, and instead making a choice about how to best spend their remaining time. The sanctity of their life is not abused or misused in this situation.

The same is true if the decision to terminate life support or medical nutrition is made by proxy. In Moral Choices, Rae explains that in this case,

the physician does not intentionally cause the patient’s death. Rather, the disease or condition affecting the patient is simply allowed to take its natural course. Thus the disease, not the doctor (nor the family who makes the decision), is responsible for the patient’s death.[3]

It would seem, then, that a competent adult who is suffering from a terminal illness or condition can morally refuse to be treated further if the treatment is not of any further benefit to the patient’s well being or quality of remaining life. But what of the patient who, for whatever reason, whether illness or injury, has succumbed to a permanent coma or vegetative state?

According to Rae in Moral Choices, a permanent vegetative state is one where the patient has

lost all higher brain function and for whom the only part of the brain that continues to function is the brain stem, which controls the person’s involuntary activities, such as breathing, heartbeat, and digestion[4]

Often a person in this state who has no other underlying disease or illness can live a long time with medically provided nutrition. They can have awake states and sleep states, which can make a loved one feel they are aware, though they cannot be. Does this mean that the person inside is already dead?

James Rachels would say the part that matters is dead. His position is that there is a difference between a biological life and a biographical life. In the case of a person in a permanent vegetative state (PVS), their biological life might be functioning but their biographical life has ended, thus they are no longer a person. By biographical life, Rachels is referring to the ability to have goals and desires and aspirations, etc. In order to do this people have to be functional as far as being conscious and aware. In a permanent vegetative state, then, the biographical life is gone and the biological life is rendered irrelevant. For Rachels, this makes termination of life acceptable since in his view the “person” is no longer there, just simply a human being.

Many people who have had loved ones in this condition identify with Rachels’ view. For example, to them “Mom” is just a shrunken shell of her former self. The woman they knew is “no longer there”, and so on. There is also a certain theological view that holds to a type of functionalist perspective of personhood, as described above, that suggests that when a person is in a PVS, they can no longer carry out their God-given functions of redemptive and creative work and thus their organic life (or biological life) has no further purpose or meaning; they are dead. Thus,

we no longer have an individual who commands the special respect due a person, because we no longer have a person.[5]         

Moreland and Rae, however, disagree with Rachels’ view as well as Wennberg’s view. Their definition of personhood differs in that they ascribe to a substance-dualist view of personhood.

The capacity to have a biographical life—far from rendering biological life irrelevant—actually presupposes it…What makes biographical life possible is a set of capacities grounded in one’s essence.[6]

Human beings are made in God’s image and have souls. It is in this essence that humans have the ability to develop a “biographical life”. If the ability to do that is taken away, it does not change the essence of a person.

Moreland and Rae give an example of someone in a temporary coma to show the inconsistency in Rachels’s view. A human being in a temporary coma also meets Rachels’s criteria for having lost their biographical life. In such a state, with only biological life functioning, the “person” is gone and thus would have no rights or protections; treatment could be stopped or the patient could be euthanized. This, of course, would be decried because the coma is only temporary and the patient will wake up. But,

…to make such an objection the functionalist must appeal to some other criteria for personhood and protection of that patient besides the particular functions deemed necessary for personhood. But in doing so…one must appeal to some essential quality, which may or may not be expressed at any give time. In other words, functionalists are implicitly appealing to higher-order capacities, which they deny are critical for determining personhood.[7]

 With such a flaw exposed in the functionalist perspective of personhood, we must necessarily reject both the views of Darwinian Rachels and theologian Wennberg mentioned above. But where does that leave our PVS patient? Morland and Rae have established with their substance-dualist view that such a patient is still a person with a soul, made in God’s image. That carries implications. Is there an obligation, then, to keep such a person alive at all costs? Not according to Rae. As mentioned at the beginning, his criteria for the acceptability of stopping life –sustaining treatment are: if it is done by a competent adult, if the treatments are futile or if the treatments come to a point where they ultimately do more harm than good.

The PVS patient does not meet the criteria for the first situation because they cannot speak for themselves any longer (unless they had an advance directive in place). Nor does it meet the criteria of the last situation because with only the lower brain stem functioning, they are not suffering pain and have no awareness. This patient does, however, meet the criteria of futility. Rae explains that when medical treatments reach a point where they are futile, that is

if they will not restore the patient to an acceptable quality of life,[8]

then they may be withdrawn or withheld.

With PVS, as mentioned above, there is no longer any higher brain function, and this is often called being “brain dead”. However, if the substance-dualist view of Moreland and Rae is correct, the PVS patient still has a soul, and is still a person and must be treated with respect and dignity. To be noted though,

there is no obligation to treat these patients, since any treatment would be futile. Providing palliative care, or relief of pain, is not an issue due to their inability to experience pain.[9]

Withholding medical nutrition and hydration for this patient would be included as medical treatment and thus not an obligation. What is necessary, however, as the PVS patient passes away is

dignity care. This would include measures such as keeping the patient groomed and bathed or providing ice chips for the patient’s face and lips to alleviate the effects of dehydration.[10]

The final instance in which Rae suggests it is acceptable to withhold or withdraw medical intervention is when the burden to the patient outweighs the benefit.[11] This is when the treatment increases the overall suffering of the patient near the end of life, even though it may be helping in some small way. Rae goes on to say that

a good case can be made that it is unethical for families to increase the net level of suffering for their loved ones and that treatments in which the burden exceeds the benefit ought to be discontinued.[12]

In regards to this, Peter Singer, professor of Bioethics at Princeton asks,

If an incurably ill patient can refuse burdensome treatment, knowing that this refusal will mean his or her death, why should an incurably ill patient who is not being kept alive by any medical treatment, but finds that the illness itself makes life burdensome, be unable to seek assistance in escaping that burden?[13]

Implicit in his question, is Singer’s argument for physician-assisted suicide being the equivalent of withholding or withdrawing treatment. In this argument, the claim is that

there is really no moral significance to the distinction between acts and omissions.[14]

This means he is drawing no distinction between a doctor administering a lethal injection to a terminally ill patient (an “act”) and/or terminating life support to allow the disease to run its course (an “omission”).

There is, however, an important difference. Though both scenarios end in death, one is caused by the doctor via the patient’s wishes and one is caused naturally by the disease/illness or injury of the patient. If the doctor does something to interfere with the dying process already underway, such as a lethal injection or prescribing a lethal dose of medication that causes the patient’s death, this is an action with moral consequences. If a patient asks to die before his disease takes hold, he is considered suicidal and should be treated as such, according to Paul Chamberlain in his book Final Wishes.

In this tale of the issues surrounding physician-assisted suicide, Chamberlain argues that all suicide attempts or requests for suicide are a call for help.

There is always some reason causing a person to want to die, and it’s usually deep depression caused by something else.[15]

People, healthy or sick, should be helped and counseled through this. People with a terminal illness should also be counseled that their value as a person has not ended because they are no longer healthy. Dying with dignity is not about control over the time and circumstances of our death, but rather the way we respond to the circumstances we have been dealt. Pain and suffering can be alleviated by medication in most circumstances, even when other forms of medical intervention have become too burdensome for the patient and/or have been stopped. In fact, this is the way many doctors choose to die, ironically enough. These physicians who take extreme measures to keep people alive on a daily basis respond to death in a remarkably different way. In The Health Care Blog, “How Doctors Die,” Ken Murray, MD says,

Doctors…don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days.[16]

Thus, when there are so many choices available to dying patients that afford comfort and can relieve the burden of treatments that cause suffering in their process of dying, let us not add the burdensome choice of physician-assisted suicide to an already vulnerable person. Let us, instead, affirm the value of the ill or permanently injured person before us, providing comfort, alleviation of pain, and the respect that comes with being created in God’s image as they journey this difficult road. Maybe in the process, we will learn, ourselves, how to die a good death.

As mentioned above, there are three situations in which terminating life-sustaining treatment is acceptable. The first, as was explored earlier, is when a competent adult refuses treatment of his or her own free will knowing full well the consequences of their act. As we saw, this is not the same as physician-assisted suicide because most often these patients do not wish to die. They just have come to the realization that treatments are only prolonging the process of dying. The second situation where termination of life-sustaining treatment is morally acceptable is when the treatment is futile, and the third is when the treatment causes more burden than benefit to the patient. In exploring these situations and what it means to be a person, it is clear that these make a morally acceptable guideline that can assist in making decisions about withdrawing or withholding life-sustaining treatments of the terminally ill or injured patient.

[1] Justice Robins as quoted in Kenneth G. Evans, B.SCc, B.Ed, LLB. “Consent: A Guide for Canadian Physicians.” http://www.cmpa-acpm.ca/cmpapd04/docs/resource_files/ml_guides/consent_guide/com_cg_informedconsent-e.cfm#informedrefusal [accessed October 13, 2013].

[2] Stanley Hauerwas. “Memory, Community, and the Reasons for Living: Reflections on Suicide and Euthanasia.” In The Hauerwas Reader, edited by John Berkman and Michael Cartwright, (Durham and London: Duke University Press, 2001), 587.

[3] Scott B. Rae, Moral Choices. 3rd ed. (Grand Rapids, Michigan: Zondervan, 2009), 220.

[4] Scott B. Rae, Moral Choices. 3rd ed. (Grand Rapids, Michigan: Zondervan, 2009), 223.

[5] Robert N. Wennberg, Terminal Choices, as quoted in J.P. Morland and Scott B. Rae, Body & Soul. (Downers Grove, Illinois: InterVarsity Press, 2000), Kindle e-book, 4.299

[6] Ibid. 4170-4171.

[7] Ibid, 4182-4183

[8] Scott B. Rae, Moral Choices. 3rd ed. (Grand Rapids, Michigan: Zondervan, 2009), 223.

[9] Rae, J.P. Morland and Scott B. Body & Soul. (Downers Grove, Illinois: InterVarsity Press, 2000), Kindle e-book, 4233.

[10] Ibid, 4.403.

[11] Scott B. Rae, Moral Choices. 3rd ed. (Grand Rapids, Michigan: Zondervan, 2009), 223.

[12] Ibid, 223.

[13] Peter Singer. “The Right to Die.”  (2007). http://www.utilitarianism.net/singer/by/200701–.htm [accessed October 13, 2013].

[14] Martha Butler, Marlisa Tiedemann, Julia Nicol, Dominique Valiquet. “Euthanasia and Assisted Suicide in Canada.”  (2013). http://www.parl.gc.ca/Content/LOP/ResearchPublications/2010-68-e.htm#txt21 [accessed October 13, 2013].

[15]Paul Chamberlain. Final Wishes. (Downers Grove, Illinois: InterVarsity Press, 2000), 71.

[16] Ken Murrey, MD. “How Doctors Die.” In The Health Blog, (2012), http://thehealthcareblog.com/blog/2012/08/06/how-doctors-die/ [accessed September 28, 2013].