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death with dignity

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The Right to Die and Government Intervention

stained glass depicting two figured displaying mercy to dying man

On June 14th 2022, 44-year-old Federico Carboni became the first person to die as a result of physician-assisted suicide in Italy. Carboni was paralyzed in a car accident in 2010 and fought for many years for access to death with dignity. In 2019, Italy’s Constitutional Court ruled that assisted suicide is constitutional under the conditions that the patient seeking it is capable of making autonomous decisions and is in overwhelming and persistent pain. Health authorities granted permission in November 2021 for the death to take place. Carboni died in his own home as a result of taking a prescribed lethal drug.

Euthanasia is very controversial in Italy; it is opposed by the Catholic Church. Indeed, in a dominantly Catholic place like Italy, some are concerned that religious values are unduly influencing the extent to which people can behave autonomously. A debate about this general issue is raging across Europe:

Should people be able to choose the conditions of their own death? Should doctors ever assist patients in bringing about death? If so, how and under what conditions?

There are two general types of euthanasia: passive euthanasia – the withholding of life preserving treatments – and active euthanasia – administering a lethal drug to directly cause the death of the patient. Active euthanasia is legal in Belgium, Luxembourg, and the Netherlands. Passive euthanasia is legal in those three countries and also in Finland, Sweden, Norway, and Austria. Euthanasia of any form is illegal in France, but they allow patients who are terminally ill and in terrible pain to be kept under “deep sedation” until they die.

In 2014, Belgium became the first country to provide access to active euthanasia to children with parental consent. To qualify, the child must demonstrate that they understand what will happen when they are euthanized and they must be in serious pain. In Belgium and in the Netherlands, patients can request euthanasia if they feel that they can no longer live with mental illness. In 2016, Mark Langedijk, a patient in the Netherlands, became the first person to be euthanized because he no longer wanted to suffer from alcoholism, a problem for which he unsuccessfully sought treatment in rehab twenty one times (for discussion, see Marko Mavrovic’s “What It Means to Legalize Euthanasia”).

Euthanasia is controversial in the United States as well. Physician-assisted suicide is legal in ten states: California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Oregon, Vermont, Washington. The practice is illegal in 33 states.

Those who support euthanasia often argue that respecting the conditions under which a person wishes to remain in existence and those under which they don’t is fundamental to treating that person with dignity. What’s more, governments shouldn’t be in the business of preventing these kinds of decisions. Human beings are not the property of any government; it should not be in a position to answer for a person what is, at its core, perhaps the most deeply personal question there is: the question of whether to continue to have subjective experiences at all.

If this is the case, whether someone is permitted to die humanely and on their own terms shouldn’t vary from one country or region to the next. Instead, it should be understood as a universal human right.

Many who agree with these points about respect and dignity argue that there continues to be a role for the state in all of this.

Even if governments ought not to get involved in answering the general question of whether patients have a right to die, it might be important for them to have a set of laws and policies in place that lay out the conditions under which it can happen.

If governments have an obligation to protect their citizens, some patients might need protection against manipulation, coercion, and impaired thinking. For instance, a person who is suffering from a lengthy disease might be concerned that they are too much of an emotional and financial burden on their family. Though they might not actually want to die, they may choose euthanasia to save their loved ones’ time and money. Another person might, in a moment of frustration and pain, make a decision to end their own life that they might not have made at a later time. A person may be too young or incapacitated to make a truly autonomous decision. These might all be legitimate reasons for state intervention.

We might also consider the issue from perspectives other than suffering individuals who might have their preferences thwarted. A country’s health care system is one of its central human services. The government has an interest in making sure that people are well cared for, and that doctors and other medical professionals have the kinds of values to do their jobs well. They want medical professionals who have respect for life and don’t have inclinations to do their patients harm.

In response, advocates of death with dignity argue that respect for life entails more than extending any given life as long as possible. When we say that life is valuable in the case of a human person, it is because there is a subject present who is capable of valuing their own existence and of having positive experiences in the world. Real respect for life entails empathy for living things when what is valuable about life for a given person is forever beyond their reach. Sometimes, death is a health care decision.

In the United States, twenty-seven states still use the death penalty as punishment. In most of these states, euthanasia is illegal. This sends the message that the state is in a position to judge when a person should die before the natural termination of their life, and is even justified in executing the person itself, but a suffering patient, in consultation with their doctor, is not in a position to make the same decision about their own life in accordance with their own values. This set of policies suggests that such governments value retribution more than mercy and control more than autonomy.

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Cryonics: The Trap Objection

photograph of hand pressed on thawing glass

Cryonics is the technique of preserving the bodies (or brains) of recently deceased people with the hope that future scientific advances will enable these people to be revived and live on. The technology to revive cryons (i.e., cryonically preserved people) doesn’t exist, and there’s no guarantee that it will ever be developed. Nevertheless, there’s a chance that it will be. This chance motivates people to spend money to undergo cryonic preservation.

The basic argument for cryonics is that it might not work, but what do you have to lose? As my colleague Richard Gibson has noted, we can think of the cryonics choice as a wager.

If you choose not to be preserved, then you certainly won’t enjoy any more life after death (I’m assuming there’s no spiritual afterlife). But if you choose to be preserved, then although there’s a chance you won’t be revived, there’s also a chance that you will be revived, enabling you to enjoy more life after you die.

Therefore, choosing preservation is a better bet, assuming the costs aren’t too high. By analogy, if you have to choose between placing a bet that has no chance of winning, and placing a bet that has some unspecified but non-zero chance of winning, the latter is definitely the better bet (ignoring the costs of placing the bets).

I want to explore an objection to this argument. Call it the Trap Objection. The Trap Objection questions the presupposition that revival would be a good outcome. Basically, the Trap Objection points out that while revival might be a good outcome for a cryon, it’s also possible for a cryon to be revived into a situation that is both undesirable and inescapable. Thus, the wager is less straightforward than it appears.

To appreciate the Trap Objection, first note that life is not always worth living. Life is filled with lots of bad things, such as pain, grief, and disappointment, to which we would not be exposed if we were not alive.

Most of us believe that most of the time the good in our lives outweighs the bad, and thus life is on balance worth living despite the drawbacks. Such assessments are probably usually correct (although some question this). It sometimes happens, though, that the bad things in life outweigh the good.

For example, the life of someone with an agonizing incurable illness may contain lots of pain and virtually no compensatory goods. For this person, life is no longer better than nothing at all.

Second, note that sometimes suicide is on balance good and consequently justified when life is no longer worth living. For example, the incurably ill person may reasonably view suicide as preferable to living on since living on will bring him more bad than good but death will permanently close the account, so to speak. And because suicide is sometimes justified and preferable to living on, it is sometimes a great misfortune when someone loses the capacity to choose death. If the incurably ill person were unable to choose to escape the agony of his life, this would likely be a great misfortune for him.

Let a Trap Situation be any situation wherein (i) a person’s life has permanently ceased to be worth living yet (ii) the person has lost the capacity to choose to end their life. For example, individuals with late-stage Alzheimer’s disease are often in Trap Situations, unable to enjoy life but also unable to end it. Trap Situations are very bad, and people have very good reason to want to avoid them.

Now we are in a position to formulate the Trap Objection. The Trap Objection is that there is a chance that choosing cryonic preservation will lead to a Trap Situation, and until we have some understanding of how high this chance is and how bad the most likely Trap Situations would be, we are not in a position to determine whether cryonic preservation is a good or bad bet. But a death without cryonic preservation will certainly not lead to a Trap Situation. Thus, choosing against preservation is arguably the safer and better option.

By analogy, if you have to choose between placing a bet that has no chance of winning or losing any money, and placing a bet that has some unspecified chance of winning you some unspecified amount of money and some unspecified chance of losing you some unspecified amount of money, the former is arguably the safer and better bet (ignoring the costs of placing the bets).

Cryonics could conceivably produce many types of Trap Situations. Here are some examples.

Brain Damage: The cryonics process irreversibly damages a cryon’s brain. The cryon is revived and kept alive by advanced technology for centuries. But the cryon’s brain damage causes her to suffer from irreversible severe dementia, rendering the cryon unable to enjoy her life and also unable to end it.

Environmental Mismatch: A cryon is revived into a radically unfamiliar social, political, and technological environment. The cryon is unable to adjust to this new environment and reasonably wants to end her life. The cryon is unable to end her life, however, because suicide is culturally and legally prohibited, and the means exist to enforce this prohibition.

Valuable Specimen: The technology to revive cryons is developed in the distant future. Future humans are interested in learning about 21st century humans, but only a few have been successfully preserved. A cryon from the 21st century is revived and studied. The study techniques are barbaric and make the cryon miserable to such an extent that the cryon reasonably wants to kill herself. But because the cryon is a valuable specimen this is not permitted.

Mind Upload: A cryon’s brain is scanned, and the cryon’s consciousness is uploaded to a virtual world that is owned and operated by a technology company. The cryon finds life in the virtual world to be unbearably depressing and wants to opt out, but because the activities of the virtual world’s digital inhabitants generate economic value for the technology company, inhabitants are not permitted to terminate themselves. Mental processes in the virtual world are simulated at 1,000 times their normal speed, such that one day in the real world feels like one thousand days to the digital inhabitants. The virtual world is maintained for 50 real-world years, which the cryon experiences as 50,000 years of unbearable depression.

This sampling is meant to illustrate that revival needn’t be a good thing and might actually be a very bad thing – even an astronomically bad thing, as in Mind Upload – for a cryon. It does not represent an exhaustive mapping of the relevant possibility space.

I don’t know how likely it is, either in absolute or relative terms, that a cryon will be revived into a Trap Situation, although the likelihood is definitely non-zero. Moreover, it’s unclear how to go about determining this likelihood from our current perspective. Contemporary cryonic practitioners will claim that they would never revive a cryon into a Trap Situation. But it is very unlikely that the technology to revive cryons will be developed within the (natural) lifespan of any living cryonic practitioners. Moreover, the world could change a lot by the time the technology is developed. So, the significance of these claims is dubious.

It seems that even if we ignore pre-preservation costs, choosing cryonic preservation is not clearly a safe or good option.

If you are so terrified of nonexistence that you would prefer the chance at any sort of future life to certain annihilation, then cryonic preservation does seem reasonable. But this preference seems unreasonable. In some situations, the certainty of death should be preferred to the uncertainty of life.

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Marieke Vervoort and Deciding How to Die

On Tuesday, October 22nd, Belgian Paralympian Marieke Vervoort ended her life. She had signed papers eleven years prior gaining authorization to decide when to end her life, as medical aid in dying is legal in Belgium. Vervoot had a degenerative spinal disease that caused intense pain and interfered with her ability to sleep, sometimes limiting her rest to minutes a night. She won multiple Olympic medals for wheelchair racing: gold and silver medals at the 2012 London Olympics, and more in Rio de Janeiro. In interviews she explained how participating in sports kept her alive, and how the intensity of her pain could at times make those around her pass out.

Vervoot expressed that without the authorization papers she obtained over a decade ago, she would have chosen to die sooner. “I’m really scared, but those papers give me a lot of peace of mind because I know when it’s enough for me, I have those papers,” she said. “If I didn’t have those papers, I think I’d have done suicide already. I think there will be fewer suicides when every country has the law of euthanasia. … I hope everybody sees that this is not murder, but it makes people live longer.” Vervoot’s statement suggests that allowing people to make their own determinations regarding ending their lives is actually a way of valuing life – not only out of respecting their autonomy (their ability to make choices regarding their own life paths), but also offering encouragement and protection.

This attitude towards aid in dying is consistent with cases in the US, though there are important distinctions in the law between Belgium and the states where physician aid in dying is legal. The US requires a person to have a terminal illness, assessed by two diagnosing physicians, in order to be considered a candidate for aid in dying. However, the trend of patients going through the process of seeking aid in dying, but ultimately looking for something more complex than to die immediately bears true: a full one-third of the patients in Oregon and California do not end up taking the prescribed medication after going through the procedures of procuring aid in dying. This tendency is attributed to the importance of having control over the manner in which you die, for which having the option (rather than following through) is sufficient.

In California and Oregon, “pain” does not make the top three reasons that a patient reports seeking aid in dying; “autonomy” typically tops the list. As for people in all stages and conditions of life, having control over the narrative and shape of one’s life is critically important. One of the principal harms of illness is that it can take so much of this control away from a person.

It has been twenty years since Oregon adopted its Death with Dignity Act, and now most Americans support physician aid in dying. The characterization of these policies, now passed in nine states (plus DC), as “deciding how to die” plays a significant role in the public discussion. But this support is only currently available for patients who are terminal, not patients like Vervoot.

The difference between cases like Vervoot’s and cases that are legal in the US is the presence of a terminal diagnosis. This constraint restricts aid in dying from being available to those patients with dementia or with other degenerative conditions, like Vervoot or actor/comedian Robin Williams.

There are a cluster of cases that raise worries about broadening aid in dying policies to include patients beyond those with terminal diagnoses. Cases where individuals are not getting sufficient treatment, and therefore they may have a reasonable chance at a good or worthwhile life (by their own standards). And yet, the healthcare system’s not providing such options cause justifiable concern among disadvantaged groups. In such cases, a patient may opt to end their life due to injustices present in the healthcare system rather than an objective terminal diagnosis.

It is telling that the policies in the US are promoted by groups with names like “Death with Dignity”; the effects of illness on terminal patients’ lives are the focus of the discussion, empowering patients to make decisions about the end of their lives in the face of degenerating conditions and abilities. However, the very conditions said to be threatening patients’ “dignity” can be the very same conditions that differently abled individuals live with every day. For this reason, some disability rights advocates find some aid in dying discourse demeaning for people that judge their lives to be meaningful and fulfilling while also living with conditions that require significant interdependence and care: “Some right-to-die activists have written about assisted dying as an antidote for indignity that occurs at the end of life, such as needing help to dress or use the bathroom. If you’re a person with functional limitations, that’s a real slap in the face,” says Carol Gill, PhD, APA working group member and professor of disability and human development at the University of Illinois at Chicago. The stigma of living a dependent life alters doctors’ and patients’ assessments of the quality of life, and so rather than providing resources to reduce the burden of the “debilitating” conditions, physicians sometimes offer aid in ending life: “There are no assisted-dying laws that guarantee those resources, and that feels discriminatory to a lot of people with disabilities,” she says.

Practical considerations must inform the moral ones in cases like these, and the reality of healthcare disparities in the US make the question of physician aid in dying worrying for many. If patients are more likely to seek aid in dying because their health needs are not being met, this presents a real justice concern because health care resources are not being distributed equitably or anywhere near sufficiently. These factors for choosing aid in dying will weigh more heavily for disadvantaged groups, and facing the decision to hasten death could be less of an empowering narrative than the one Vervoot tells (she said it gave her control and put “my own life in my hands”). These concerns regarding vulnerable populations and the value-laden judgments regarding which lives are worth living even count against the policies allowing aid in dying that the US has passed.

There are a variety of conditions that could interfere with someone’s ability to live what they deem to be a worthwhile life. Both psychological and physical conditions can bring about such states, and terminal and non-terminal conditions may meet this standard. The relevant distinction may turn on whether reasonable hope of treatment exists or not. As we have seen, there are a number of practical difficulties to determining which cases fit into which category, especially given the inadequate care currently on offer and the unjust distribution across vulnerable populations.

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A Right to Die

The California legislature recently passed a controversial bill, which they are calling the “End of Life Option Act”. If signed by the Governor, it will go into effect this January. The bill states that it would allow adults suffering from terminal illness that meet “certain conditions” to request and be administered a dosage of life-ending drugs. There would need to be documentation of both oral and written requests. As an accompaniment, it adds that doctors, workers, etc. will not be treated as criminals or subjected to disciplinary action as a result of the lawful practice of this procedure. Euthanasia Pro Con does a very good job of bringing together some of the various arguments for and against the so-called “right-to-die” laws.

Continue reading “A Right to Die”