Not Having a Right to Die as a Limiting of Personal Freedom

In 2014, the US watched as Brittany Maynard, the 29-year-old newlywed diagnosed with terminal brain cancer, chose her dignity over her life when she decided to move to Oregon and undergo physician assisted suicide, announcing this decision to the world via social media and providing thorough updates and defenses for her decision in the months that preceded her death. She was met with countless amounts of hate mail and negativity, all claiming that she had no right to give up the most precious thing the universe (or, in many arguments, God) had given her. This opened a nationwide dialogue for an ethical debate that had been brewing under the surface for years: do humans have a right to die? Physician assisted suicide, also known as euthanasia, has caused the most friction in the ethical dilemma that asks us “if people have an intrinsic right to live, do they have an intrinsic right to die?”. Euthanasia is defined as the ending of one’s own, or another’s, life for the compassionate alleviation of suffering, a “mercy killing” or “good death”, making it hard to distinguish the difference between suicide and euthanasia. This is where the lines become fuzzy- when is killing oneself okay? I will argue that Euthanasia is ethically permissible under the circumstances of terminal illness in consenting adults (or by the consent of their next of kin if unresponsive) because all persons should be granted the right to a clean and peaceful death based on one’s own autonomy and right to die with dignity.

Legally (on a federal scale), Euthanasia is still considered suicide and is, therefore, illegal. However, Washington, Oregon, Vermont, and Utah have put in place what are called the “Death with Dignity” laws. The Death with Dignity movement began in Oregon in 1993 with the founding of the Death with Dignity National Center- a nonprofit organization whose goal was to “expand the freedom of all qualified terminally ill Americans to make their own end-of-life decisions, including how they die, provide information, education, and support about Death with Dignity as an end-of-life option… [and] mount legal defense of physician-assisted dying legislation” (deathwithdignity.org). This organization still exists today with those same goals, as well as trying to “promote Death with Dignity laws around the United States based on the groundbreaking Oregon model”. The Death with Dignity website largely advocates the Oregon model, which states that each of the following criteria must be met for any patient to be given the option of euthanasia: the patient must be terminal (meaning only six months to live), must give continual request both orally and written, must show rational competence as determined by a psych evaluation, and must have the ability to administer the drug themselves. This is where Death with Dignity becomes a bit more controversial than just letting terminally ill citizens make their own decisions. Unfortunately, these laws allow very few people to be granted these rights, specifically patients with terminal illnesses besides cancer. Upon reading the personal stories on the Death with Dignity website, you will find that all those who were actually able to receive the right to physician assisted suicide were cancer patients- any other mention of debilitating terminal illness (MS, kidney failure and diabetes, coma patients, stroke victims) is about how much people wish the people affected by those events were able to receive the kind of care available now.

It’s important to understand that a patient with AIDS, Huntington’s, Parkinson’s, MS, Lesch-Nyhan, or any other debilitating or degenerative terminal illness that isn’t cancer would still likely not be granted those rights today under Death with Dignity as many of them do not fit the criteria for euthanasia laid out by the Oregon model. Aside from cancer, very few diseases allow for someone to administer their own drug, nonetheless maintain the rationality or even physical ability to write several requests, in their last six months of life because, though they are still alive, they have lost their personhood by then. Mary Anne Warren theorized that personhood can be determined by five criteria- consciousness, reasoning, self-motivated activity, capacity for communication, and presence of self- and in order to be considered a “person”, one must meet all these criteria. Unfortunately, as aforementioned, many of these diseases, take Parkinson’s for example, are degenerative and debilitating, leaving the patient far from many of these criteria, like capacity for communication and reasoning, by their final six months. One option to fix this flaw is to extend that time to a year or 18 months prior to expected death, but this issue of personhood also often comes up in case studies of those who have entered a coma or “twilight state” after some sort of trauma. The person experiences physical trauma that eliminates all parts of their personhood, leaving them with no option of active voluntary euthanasia (the willful killing of oneself that Death with Dignity proposes), however the next of kin may opt for passive involuntary euthanasia (“pulling the plug”). Though this seems like a reasonable alternative, case studies will show that this is not always effective in providing the victim with release.

In the case of Terri Schiavo, a woman who was left in a persistent vegetative state known as a “twilight state” at 26, she was kept alive for 15 years with little to no consciousness and minimal communication skills until she was unable to live without a feeding tube- it was in that year, 2001, that her family requested her feeding tubes be removed. Though they were removed, by some sort of fluke she lived without food or water for 13 days (terrischiavo.org). In a perhaps more extreme case, Karen Ann Quinlan entered in a coma at 21 after consuming copious amounts of drugs and alcohol in 1975 and fell into an irreversible persistent vegetative state. After her parents fought for the legal right to remove her respirators, they decided to keep her connected to feeding tubes so she could die somewhat “naturally”. She remained alive for almost 10 years, experiencing uncontrollable body thrashing until the end and weighing only 80 pounds at her time of death (nytimes.com). In both of these cases, something could have been done to release these innocent and helpless individuals from their irreversible and painful states, but by the will of the parents and the law these two girls had to live with the pain for much longer than necessary. In Shiavo’s case, legally nothing could be done, as administering any drug (ex. morphine) would have been considered homicide by law and malpractice by medical codes. In Quinlan’s case, the parents used “God’s will” to argue why they would not remove the feeding tubes before she died, claiming that this would make her death more natural and an “act of God”. In both cases, the reason these girls were kept alive was that to do any more would be to kill them rather than to let them die. The moral question this raises is this- what is worse: killing to alleviate suffering or letting die to naturally prolong life?

Utilitarianism will always argue for the alleviation of suffering. John Stewart Mill’s basis for the utilitarian theory is that the goal of ethics should be to cause the most pleasure and reduce the most suffering for the greatest amount of people. In Euthanasia, this comes down to a question of quality of life- is the welfare of a person being attended to if they are being kept alive in suffering? According to Mill, no. If the quality of life is irreversibly affected by a persistent suffering and the only way to escape that suffering is death, then death is the answer. This applies to the merciful killing of oneself as well as of a loved one who is not in a responsive state to make the decision. If a rational and autonomous person has the option to either prolong a life of suffering or end that life to cease the suffering forever, for oneself or one’s next of kin in unresponsive cases, Mill tells us we must choose the latter.

Deontology, however, provides the opposite side of the argument. Kant’s ethical basis is entirely absolutist- that is, there are intrinsic truths and what he calls “perfect duties” that tell us what we ought not to do. He defines anything as ethically impermissible if it fits the criteria for what he dubbed the “categorical imperative”. The categorical imperative consists of two formulations, the first being the “principle of universalization” (could I, rationally, will this action onto every person in the universe at this moment?) and the “means-ends principle” (am I using any person as a means to an end?), and if any action fails either or both of these functions, it is always ethically impermissible (Traditions of Ethics, 414-420). As a non-consequentialist theory, this formula takes the ethical focus off ends and puts it on actions. That said, killing of anyone, including oneself, does not pass and is it therefore, according to Kant, a categorical imperative, a “perfect duty” to never kill under any circumstance. Period. No debates. Unfortunately, this sort of absolutism isn’t built for a case by case extreme circumstance like terminal illness. However, Kant and deontology do not care about terminal illness- euthanasia is either suicide or murder.

This brings up the next question- what is the difference between euthanasia and suicide/murder? In the case of voluntary active euthanasia like with Brittany Maynard, what differentiated her death from being suicide? The most obvious answer is that she was going to die anyway. Yes, all people will die anyway, but Brittany Maynard was going to die in less than a year and in great pain. Not only would she die so soon, but because of the nature of her disease- brain cancer- by the time of her death Brittany would have lost all sense of self, all personhood. In a way, Brittany would already have been dead, and all that would remain would be a suffering body. To ask for death while she was still Brittany Maynard, before she forgot who her husband was and before she stopped recognizing herself in the mirror, no longer seems so absurd. Naturally Brittany looked for release, but it is understandable why perhaps it would still have been considered suicide had she hanged herself or purposefully overdosed on sleeping pills instead. Now brings the question of methods into the spotlight- what is it about a “clean and peaceful death”, an important right emphasized by advocates of euthanasia, that makes it so different from suicide? A Lithuanian artist and engineer, Julijonas Urbonas, proposed a “death coaster”, a coaster that used g-force to effectively euthanize its riders in two minutes. Though this seems extreme (especially considering since he has pitched it, he has suggested it could be used from euthanasia to general population control, which sounds a bit like fascist eugenics), it does force us to consider why it seems extreme as opposed to, say, a lethal dose of morphine. This comes back to the concept of a “death with dignity”. A clean and peaceful death in one’s own home, in one’s own bed, surrounded by family while still being the person they want to be remembered by their family as, before they’ve lost all personhood, while they still have the autonomy to make the choice, that is a death with dignity. No one has to wipe blood off the walls or drag a body off a death coaster or watch their loved one suffer seizure after seizure in a hospital bed until they die naturally.

But what about those who are no longer conscious to make the choice? Those who have already lost their personhood and autonomy too soon and can’t have that choice to die a peaceful death in their beds as the people they want to be remembered as- what about Terri Schiavo and Karen Ann Quinlan- how can they get a death with dignity? The utilitarian answer is, if the next of kin is rational and the victim is completely unresponsive they should be able to give their loved one the same thing. Perhaps they can even take them home, get them out of the hospital or hospice or whatever horrible foreign place they’re being kept, and administer the dose there, via IV, and give the suffering victim a peaceful and painless death in a familiar place with family. The right to die with dignity should belong to everyone whose dignity is at stake in death.

Now we must ask- who does have the right to decide to die with dignity? Surely we can’t just let all suffering people kill themselves, we all suffer, so how far is too far? Europe proves very liberal with their euthanasia laws; recently, European nations have tried to make cases that would make euthanasia possible for all kinds of sufferers- from people with autism to bullied kids to old people who just want to die. In recent years, Belgium and the Netherlands began offering euthanasia by lethal injection to persons diagnosed, not with a physical disease, but a psychological disorder. According to Charles Lane’s Washington Post article, Europe’s morality crisis: Euthanizing the mentally ill, “Belgium legalized euthanasia in 2002 for patients suffering ‘unbearably’ from any ‘untreatable’ medical condition, terminal or non-terminal, including psychiatric ones”, this included patients with issues as common and non-terminal as bipolar disorder (washingtonpost.com). In this article, Lane reveals that between 2014 and 2015, 124 of almost 4,000 euthanasia cases in Belgium involved, not the terminally ill, but the mentally ill (this is 3.1 percent of the cases of that year). In fact, there were a recorded total 594 cases for non-terminal patients who were euthanized (a staggering 20.8 percent of cases of that year). These numbers are far too high to be normal. This is the fear in the fight for the right to die- if death becomes normalized then life no longer holds the same value. Here, people seek a permanent solution for a temporary problem. Therein lies the main difference. Though these things may not be curable, they certainly exist in a world where treatment exists for non-terminal patients. Autism, schizophrenia, bipolar, and depression (all disorders had by patients who underwent euthanasia in this last year) may not be curable but there are cognitive/behavioral methods as well as pharmaceutical methods, for certain cases, available and, in the end, these things will not kill their patients and with proper care will not remove their personhood, even if it is already lost it can often be restored to enough extent to eliminate suffering through psychiatric care. Not only that, but anyone suffering from a psychological disorder distressing enough to ask for death is almost certainly not in a sound or rational state of mind. Those suffering from cancer, MS, Parkinson’s, they will lose their personhood and they will die horribly painful deaths- that is the nature of these diseases and if they can prevent their impending deaths while of sound and rational mind, that becomes a very different situation.

It all comes down to the value we, as humans, place on life. To alleviate the suffering of those who have certain deaths coming is to place a value on life beyond just the physical living, but on the quality of life and the welfare of the individual as they face their own death. To alleviate the suffering of just anyone feeling pain, even temporary pain, by death is to lose that value, to give up the most valuable gift the universe can give and use oneself as a means to an end for the selfish alleviation of temporary suffering. This is the difference between suicide and euthanasia- there is no dignity in taking a life that isn’t doomed for worse. Therefore, for the alleviation of suffering for those who need and deserve it, euthanasia is ethically permissible in terminally ill, rational, and consenting adults (or their rational, consenting next of kin, if they’ve lost all consciousness or means of communicating) on the grounds that as free, autonomous, living people, they should have a right to a death with dignity- safe, clean, peaceful, and surrounded by those who love them and can remember them as those free, autonomous, living people and not as suffering, sad shells taken by illness and stripped of personhood.