I forgive you, mother, I can hear you
And I long to be near you
But every road leads to an end
-Sufjan Stevens, song "Death with Dignity"
A death with dignity is exactly what it sounds like: a death free from indignities, such as those found in excessive suffering or in diseases that are progressive, ugly, and incurable.
In the U.S., as of June 2024, there are only 10 states plus Washington D.C. that allow death with dignity.(1) In each of these states, dementia is exempted because the law only applies to 1) a patient with 6 months left to live or less and 2) a patient that can fully consent to the procedure.(2) Dementia patients can, unfortunately for them, live for years after the worst of the disease has taken effect, and they are not, unfortunately for them, capable of consenting to their death. Ironically, it is exactly the long life under a life-ruining disease and the lack of a sound mind that contribute to dementia’s worthiness of death with dignity considerations.
I defend the following argument:
1) If late-stage dementia is a fate worse than death, then those who suffer from late-stage dementia should be given a death with dignity.2) Late-stage dementia is a fate worse than death.3) Therefore, those who suffer from late-stage dementia should be given a death with dignity.
You might recognize that you already agree with the argument. That wouldn’t be too surprising, given the general support for death with dignity according to polls.(3) What’s funny about these poll results is that folks are more supportive of death with dignity when the word “suicide” is not used. That makes sense to me:
“A doctor should be allowed to kill…”—I think not.
“I want the freedom to choose among end of life care options, including the option to end my life when I see fit.”—much better. Freedom sounds better than killing, even though both mean the same thing in this context.
This means the biggest obstacle to death with dignity is optics, not truth.
For the first premise of the argument, it’s true by definition that it’s better to be dead than to suffer a fate worse than death. But the first premise contains more than just this self-evident truth. It contains implicit claims about legality, culture, and medical procedures—namely, that it should be legal for families and doctors to agree that a family member would be better off dead and to thereby pursue medical procedures accordingly, and that the wider culture should be on board with this. Moreover, there is the implicit claim that it’s morally right for a person to administer this death to the patient, and to do so even when the patient is a) innocent, b) a person with value, c) a person with a right to life, and d) not able to consent to their death. All of this opens up premise 1 to many objections.
Premise 2 is easy to defend. My mom was diagnosed with early onset dementia roughly 10 years ago, and is now in the late stage. Her symptoms include:
-unable to clothe self
-unable to feed self
-unable to bathe self or maintain hygiene
-unable to form new memories or recall old ones
-always at risk of getting lost; doors must be kept locked from the inside at all times
-reliant on others 24/7 to survive
-often bored, asks questions like “What can I do?”, but there is nothing she can do
-unable to be of help
-unable to hold a normal conversation
-unable to socialize properly; loss of social skills
-unable to participate in life in any meaningful way
-unable to improve in any way, and capacities worsen each day
-occasionally becoming self-aware and expressing despair over her situation
-constantly in a state of confusion and distress
-meltdowns whenever left alone; in constant need of emotional support
-daily meltdowns, even when not alone, that last for hours
The last symptom on the list is the one that makes it clear to anyone who has lived with someone with this particular variation of dementia that this variation of dementia is a fate worse than death. The other symptoms make it all the more clear.
While the suffering of the patient in question is most important, it’s also important to not ignore the suffering of family members. My dad has become a full time caretaker and I can only guess at the extent of the stress this has caused him. There have been days where I struggle to get out of bed myself. Beyond my dad and I, my brother and his family, and my sister and her family, suffer too. Our neighbors, who have called 911 because my mom escaped the house and got lost, suffer too. Friends and church members who have seen her on Sundays suffer too. Folks are uncomfortable, disturbed, and saddened by the situation. When one person in a community suffers, the whole community suffers.
I'm 99% confident that if my mom at 40 years old saw what she would be like at 60, she would make plans to end her life early. The only reason she didn’t is because 1) it was a frog boiling in the pot situation, 2) because she didn't live in a society that was sophisticated enough to give her the option, and 3) she once remarked to me that she was okay with the situation (which wasn't really true; she expressed despair and misery from the beginning) because she was told she would be in a happy mood while the disease progressed. I don't know who told her this, but it was completely mistaken. She has daily emotional meltdowns and is in a constant state of either boredom, confusion, or distress. She especially would not accept the suffering caused to her family and friends.
Not only does the disease cause loved ones to suffer, there’s another serious consequence: How the disease causes the patient to be remembered. We want to be remembered well, but a disease like dementia makes that impossible for those afflicted. We don’t have many videos (I can’t think of any off the top of my head) of my mom before she changed. Given how slowly the disease progresses, it becomes harder and harder to remember her as her ordinary self. We want our family members to remember us well; we want to leave behind good memories. But the disease leaves memories of her in a wretched, undignified state. Far from leaving behind good memories, she will leave behind emotional scars. This is not her fault of course; the enemy is the disease; the enemy is the culture that opposes death with dignity.
This essay by philosopher Elizabeth Telfer mentions the financial costs of opposing euthanasia and how those resources could be put to better use.(4) While folks will protest caring about money more than a person’s life (something our oligarchic systems do anyway), there is a common sense point to be made here. If I were dying, I would not expect society to spend 100 billion dollars to keep me alive for 30 more minutes. That would clearly be unreasonable. It would be unreasonable to spend any amount of money to keep me alive for 10 years if the quality of life during those 10 years was unacceptable. So there simply is a point at which the money is worth more than the life. While this is an uncomfortable truth, it is one we must face.
There is an even further consequentialist argument in favor of death with dignity more generally: the advantages of death days. Here are two end of life scenarios, with one clearly better than the other:
1) The parent dies, possibly in great pain from advanced disease, either unconscious or semi-conscious, confused and senile, alone in a hospital room.2) The parent dies in peace, painlessly, after spending a day surrounded by loved ones, sober and awake and able to say goodbye to everyone.
Reliably achieving scenario 2 requires scheduling a death day in advance, which means ending the life of the parent prematurely. It can be difficult to know whether the parent would survive another week, or 6 months, or even years. But it can also be difficult to know the exact quality of life those extra months would have, or whether the parent would have a later chance to say goodbye. So it’s not the simplest calculation. Nonetheless, families should have the option of scheduling death days. But that would require common sense death with dignity laws to be enacted across the country. It would also require Americans to have a more mature attitude toward death, which is to say that it likely requires too much.
Objection 1: Laws allowing dementia patients to be euthanized will lead to abuse cases.
We might call this the safeguard objection. How can we implement death with dignity while safeguarding the right to life?(5) The fear is that doctors or nurses would have sole authority to end the lives of their patients, or that families would conspire to end the lives of otherwise healthy members.
Obviously, common sense death with dignity laws would not give any one person sole authority for deciding who lives and dies. We can safeguard against abuses by one or more of the following:
a) Requiring neutral, non-family, non-medical witnesses to the unbearable suffering of the patient;b) Requiring a second opinion from a qualified physician as to the nature of the progressive, incurable disease of the patient;c) Requiring physicians to opine on the possibility, efficacy, and burdensomeness of medication and alternative treatments;d) Requiring a neutral third party to review the case and approve it, such as a court judge (with or without a jury).
There is the worry that patients suffering from mental health issues would be wrongly administered death when they need therapy and medication. I share this worry, which is why I do not advocate for death with dignity to apply to those who have depression or similar mental health issues.
Currently, it is already the case that doctors could, if they wanted to, end the lives of vulnerable patients, and families could, if they wanted to, conspire to have family members killed. But we trust them to not do this. I don’t see how death with dignity laws, with common sense safeguards, would require us to rely any more on that trust. In fact, by not allowing death with dignity, you create situations where patient quality of life drops far below what is ethically acceptable. It is in these extreme cases that doctors and nurses will be most tempted to take it upon themselves to end patient lives without due process. Ironically, far from causing abuse cases, I can see how death with dignity laws would reduce abuse cases.
Objection 2: Euthanasia is an extreme measure. We should pursue treatment first.
I agree. When you invent a cure for dementia, let me know?
Glibness aside, it’s true that the worst of my mom’s disease, at least until the very late stage, is her constant state of distress. Medical marijuana might be a solution to that problem.(6) (Of course, my mom is in Kansas where medical marijuana is illegal.)
I advocate for more options, more freedom. Both treatments and death with dignity should be available, and we can determine on a case by case basis which is the better path. I imagine a typical case would involve medication for the early stages of the disease, and then death with dignity when the untreatable symptoms become unbearable.
Some treatments are not worth pursuing. Medication that “zombifies” the dementia patient does nothing to solve the problems of relying on others and not being able to participate in life meaningfully.
Objection 3: This would force medical professionals to administer lethal medications against their conscience.(7)
No, this wouldn’t. Doctors who have a personal objection could simply be exempted.
It’s worth noting that in death with dignity lawsuits, doctors are often among the plaintiffs.(8) This makes sense: Patients, or their families, approach their doctors looking for common sense end of life options. Doctors wish to help, but can’t.
Objection 4: It’s always wrong to kill an innocent person.
Imagine getting into a skiing accident that left you paralyzed and brain damaged. You are bound to a bed for the rest of your life, and you’re only conscious enough for life to be a never-ending fever dream. Would you prefer to live this life, or would you prefer death?
I would prefer death. While dying in a skiing accident is tragic, it would be far more tragic to be forced to suffer a fate worse than death for decades. You can either extend the tragedy by forcing someone to live without any quality of life, or you can truncate the tragedy and choose the lesser of two evils.
In this case, I would hope to be “killed” (practically speaking, I’m not alive in any relevant sense anyway) even though I am innocent.
Objection 5: It’s always wrong to kill someone without their consent.
Again, in the skiing scenario, even though I am unable to consent, I would hope that my family and doctors (and any judge or jury presiding my case) would have the common sense to recognize my fate as one worse than death and to end my life accordingly.
It’s arguable whether killing me in this case would count as violating my consent in any relevant sense. If I were able to communicate in this scenario, I would communicate my desire to die. Those around me can’t know this (unless I had expressed such a desire beforehand), but they could know that I would prefer death over being incurably bedridden and half-conscious if I were rational. Rational consent in this context is the consent I would give if I were capable of understanding the badness of my situation and thus the reasons for resolving that badness. Arguably, rational consent matters more than non-rational consent.
It’s important to know why there is no consent. If there is no consent because the patient competently and rationally refuses consent, then euthanizing that patient would be clearly unjustified. But if someone refuses consent because of incapacity or irrationality, then euthanasia can still be justified if the patient is experiencing unbearable suffering due to a progressive, incurable, and effectively untreatable disease.
However, even if killing me in the skiing case counted as an evil violation of my consent, it would be nowhere near as evil as forcing me to suffer a fate worse than death for decades. The lesser of two evils should be chosen.
For a more moderate death with dignity law, we could require future consent be given by a patient at the time of a diagnosis to pursue death with dignity when the family feels it is time. In these cases, the patient is not capable of consenting at the time of death, but the wishes of the patient as their rational self would trump the wishes of the patient as their incapacitated or irrational self.
Objection 6: Who gets to decide what counts as a fate worse than death?
We do. To give us an idea of a reasonable definition of “fate worse than death”, here are three criteria the MAID laws in Canada include in their eligibility requirements(9):
- have a serious and incurable illness, disease or disability;
- be in an advanced state of irreversible decline in capability;
- have enduring and intolerable physical or psychological suffering that cannot be alleviated under conditions the person considers acceptable.
We could conduct survey experiments to gather people’s answers to the skiing accident case, and variations of the case, to get a sense of what counts as a fate worse than death for the typical person. That data could in turn be used to create an empirically supported criteria for a fate worse than death. (Assuming such data hasn’t already been gathered.)
Objection 7: Euthanasia goes against Christian ethics.
I don’t know of any verse in the Bible that strictly forbids death with dignity. There is the Old Testament commandment of “Thou shalt not kill”, but Christians immediately qualify the commandment by saying killing in self-defense is fine. This is because we see the irrationality of forbidding people from killing in self-defense. Self-preservation is one of the hallmarks of rationality, and it’s difficult to fault someone for acting rationally. But if we can qualify God’s commands in this way, then we can continue to use our reasoning and qualify further, and the case I’ve laid out here provides an example of doing just that on behalf of death with dignity.
Deontic considerations
So far I have focused on the consequences of ending the lives of those whose fate is worse than death. But we should also consider the nature of the actions associated thereof, and whether they are the kinds of actions we can morally tolerate. From a deontological perspective, if an action violates someone’s right to life, for example, then that action is wrong even if the consequences of doing so are a net good.
Objection 8a: Euthanasia fails to treat people as an end unto themselves.
The opposite is the case: by caring about the person themselves, your compassion causes you to desire to see them free from unbearable suffering. Their suffering becomes yours because of your regarding them as an end unto themselves.
This objection would have force if the motivation behind death with dignity was purely to spare friends and family members from suffering. But this isn’t the case. Death with dignity can be justified purely on the grounds of the suffering of the patients themselves. The suffering of friends and family only provides bonus weight in favor of death with dignity.
Though, it is arguable that friends, family, and the wider community collectively suffer more than the patient. This would be due to the wider community a) outnumbering the patient and b) being starkly aware of their own suffering while the patient is unaware or only partially aware depending on capacity.
Objection 8b: Death is a harm and doctors are obligated to Do No Harm.
Why is death a harm? I would say: death is a harm because it precludes future flourishing for the one who dies, it destroys a web of flourishing (i.e., it damages a community’s structure), and it causes the (often sudden) agony of grief and loss to surviving loved ones.
In the case of a patient suffering from late-stage dementia, a) there is no significant flourishing precluded, only further (and worsening) suffering; b) the community’s structure was already damaged by the disease; and c) while death of the dementia patient would cause grief and loss to loved ones, they are the ones (in theory) advocating for death with dignity in the first place for reasons already discussed.
So in extreme cases, death is not a harm, or is the lesser harm. Therefore, by forcing the patient to live a fate worse than death, you are harming that patient. The system, as a whole, is failing to abide by “Do No Harm” by opposing death with dignity.
Objection 8c: To euthanize someone is to fail to have good intentions / a good will.
If we have already established that death is, in some rare and extreme cases, a net benefit for the one who dies, and if it’s clear that the one who brings about this death does so for that benefit, then it follows that intending such a death is not an evil intention.
Intentions matter greatly. We want those around us to be the right kinds of people and have the right kinds of motivations. If an action is the kind of action that comes only from the wrong kind of person, or only from the wrong motivations, then I agree that this action is evil regardless of its consequences. However, whether an action is such an action will of course depend on its consequences, as the motivation to perform an action depends on the action’s consequences. If the consequences are good (for others and not only for me), and my motivations are tied to those good consequences, then my motivations will be good too.
The concern is that by pursuing death with dignity we are acting selfishly, that we care more about our burdens than the lives of the unfortunate. But I am certain that is not what’s going on. It’s clear to me that we are the right kinds of people and we have the right kinds of motivations when we, with due process, prevent our loved ones from suffering a fate worse than death. As I mentioned before, it is because of our compassion that we suffer when they do; it is because of our love that we wish to see them dignified.
Objection 8d: Euthanasia fails to treat the patient with dignity.
The opposite is the case. The Elizabeth Telfer essay gives examples of aspects of dignity, including independence, autonomy, and privacy. I take indignities to be anything that humiliates, reduces, makes you weak or lesser, or robs you of your power or status. To be dignified is to be glorified, to be raised up, celebrated, to occupy a higher status, to be free, independent, and powerful. To be dignified is to be above, and to be undignified is to be below.
We can ignore death in cowardice, or we can rise above our fear and face it head on. We can be stripped of our power or have the freedom to die on our own terms. We can cling to life and let ourselves degrade into a sickly heap and die shriveled and unconscious, or we can be strong and let go at the right time, dying with poise and pride. We can die alone or with a goodbye. Which is the more dignified way?
Technically, there is no such thing as a death free from indignity, as death itself is one of the worst indignities one can suffer. Death reduces you to nothing. Yet, when it comes to fates worse than death, there is even worse indignity. When someone is suffering permanent dependence, weakness, embarrassment, pointless suffering, the inability to improve or participate in life in any meaningful way, and so on, then death is a more dignified state, especially when the condition can only get worse and eventually leads to death anyway. We should minimize the indignities we face when we face death and dying, and a death with dignity gives us that.
Hypocrisy
There is another deontic consideration: the consistency of action. The idea is that any hypocritical action is wrong, because to be hypocritical is to be self-contradicting, and to be self-contradicting is to be irrational.
This rejection of hypocrisy can be expressed in Jesus’ command that we should do unto others as we’d have them do unto us. But instead of this opening up an argument against death with dignity, it opens up an argument for it. If you wish for others to take on a certain attitude (e.g., mercy killing can be justified) in the case you find yourself suffering a fate worse than death, but do not yourself take on this attitude, then you are being hypocritical. We can show this in the following argument:
1) We should do unto others as we'd have them do unto us.2) We would have others apply death with dignity to us in circumstances where our fates are worse than death and death is the only way out. (Like in the skiing accident case)3) Therefore, we should apply death with dignity to others when their fates are worse than death and death is the only way out.
Here is a more nuanced version:
1) We should do unto others as we'd have them do unto us.2) We would have the appropriate persons (family, doctors) be informed about what we consider to be a fate worse than death, and have death with dignity applied to us, authorized by such persons, in the case we suffer such a fate.3) Therefore, we should be informed about what those individuals to whom we count as appropriate persons consider to be a fate worse than death, and apply death with dignity to them in the case they suffer such a fate.
There are problems with Jesus’ golden rule, and even with Kant’s universalization principle that tries to solve those problems.(10) Still, it's irrational to not take on the attitudes you wish others would take on.
One last point: humans run on hope. Humans can endure an incredible amount of suffering as long as there is a light at the end of the tunnel. One reason why children make our lives so meaningful is because they represent the future; they grow and improve over time. With a progressive disease like dementia, there is no improvement, only decline, only darkness at the end of the tunnel. Family members, friends, doctors, and caretakers are asked to hold on. It’s hard to hold on without hope.
With these objections answered, I conclude that there are no good moral arguments against death with dignity, even in extreme cases where consent is impossible due to incapacitation or irrationality. I can’t help but feel that most opposition to euthanasia is due to optics, emotions, or virtue signaling, not arguments. It’s easy to virtue signal. It’s much harder to live the nightmare day after day, year after year, praying for a miracle that will never come. Those who oppose death with dignity are paving a road to hell with good intentions. Until changes are made to our attitudes and our systems, patients and their families will continue to burn in that hell every day.
(2) OREGON (1997): https://www.oregonlegislature.gov/citizen_engagement/reports/deathwithdignityact.pdf.
WASHINGTON (2008): https://doh.wa.gov/data-and-statistical-reports/health-statistics/death-dignity-act.
VERMONT (2013): https://legislature.vermont.gov/statutes/fullchapter/18/113.
CALIFORNIA (2015): https://www.cdph.ca.gov/Programs/CHSI/pages/end-of-life-option-act-.aspx.
COLORADO (2016): https://www.uchealth.org/colorado-end-life-options-act/.
D.C. (2016): https://dchealth.dc.gov/sites/default/files/dc/sites/doh/page_content/attachments/Death%20With%20Dignity%20Act.FINAL_.pdf.
HAWAII (2018): https://health.hawaii.gov/opppd/ococ/.
MAINE (2019): https://www.mainedeathwithdignity.org/wp-content/uploads/2023/02/QA-for-Death-with-Dignity.pdf.
NEW JERSEY (2019): https://www.nj.gov/health/advancedirective/maid/.
MONTANA: It was established by legal precedent, not statute, in 2009 that physicians will not be prosecuted for aiding in the death of a “competent and terminally ill patient.” See: http://eol.law.dal.ca/wp-content/uploads/2015/06/Baxter-v-Montana.pdf.
https://deathwithdignity.org/wp-content/uploads/2023/06/toplines.DC-Death-with-Dignity.f.071015-1.pdf - from: https://deathwithdignity.org/states/district-of-columbia/.
(5) See: https://www.cnn.com/videos/tv/2023/02/27/dr-madeline-li-euthanasia-canada-maid-paula-newton.cnn.
(7) See the paragraph addressing “professional autonomy”: https://plato.stanford.edu/entries/euthanasia-voluntary/#MoraCaseForVoluEuth.
(8) See for example: https://www.nytimes.com/2023/09/16/health/aid-in-dying-new-jersey.html.
(10) See the chapter on Kant, starting on pg 167, of The Fundamentals of Ethics, 5th ed., by Russ Shafer-Landau.
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