5 minutes till 12
in which we look at an ethical problem downstream from legalized euthanasia
Wow. Do I even need to mention this is Bing AI?
I try to tell my students, moral commitments have trajectory. Commit to some moral assumptions and it will likely lead to certain problems and resolutions further “downstream.” Big committments lock in lots of downstream moral committments.
For instance, If you start with the idea that pleasure and pain are the most simple, primitive elements of good and evil (e.g. all good things are reducible to pleasant feelings and all bad things are reducible to painful feeling) then its going to be ALOT easier for you to end up a consequentialist of some form or another.
Now, stay with me, I’m getting to euthanasia. Another of those watershed decisions that will affect downstream resolutions is whether you think suffering is largely subjective.
If you think someone’s suffering is totally a matter of what the individual thinks it is, then only the individual can rightly decide when suffering is irredeemable or to much to bear. There is a level of pain where the agony of continuing is worse than death. Now, is the same true for suffering? If so, and if suffering is totally subjective then it’s going to be ALOT easier to argue not only is assisted suicide is permissible; it might be a duty.
Enter Irene Merkel, 82, who has Alzheimer’s.
In the not-so-distant future, it will no longer be safe for her to stay at home alone. She had a bad fall and broke her elbow in August. She does not feel she can live with her children, who are busy with careers and children of their own. She is determined that she will never move to a nursing home, which she considers an intolerable loss of dignity.
Irene Merkel has determined what is an intolerable loss of dignity: Moving to a nursing home. You might think, that seems a bit extreme, but if suffering is subjective then one person’s chronic, debilitating pain can easily be someone else’s nursing home admission. That’s the downstream moral problem that follows from the assumptions about subjective suffering.
In chapter 5 of Practical Bioethics, we hear something similar from Brittney Maynard who doesn’t have Alzheimers but she does have an inoperable brain tumor that gave her dementia. She took advantage of Oregon’s euthanasia statute before her cognitive decline just like Irene Merkel.
I would not tell anyone else that he or she should choose death with dignity. My question is: Who has the right to tell me that I don’t deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?
Notice the moral assumptions bubbling on the surface of those questions. The principle of autonomy plus subjective suffering means Brittney, Irene, and anyone else get to decide when suffering is intolerable.
Irene lives in the Netherlands which has some of the most permissive physician-assisted suicide (PAS)laws in the world. She’s applied for PAS.
The Netherlands is one of just four countries (plus the Canadian province of Quebec) that permit medically assisted death by advance request for people with dementia. But the idea is gaining support in other countries, as populations age and medical interventions mean more people live long enough to experience cognitive decline.
In Practical Bioethics, I mentioned that given the moral assumptions (principle of autonomy and non-physcial subjective suffering) that PAS not only for terminal but chronic or debilitating conditions seems to follow.
. . . [W]ould a chronic mental condition such as schizophrenia or multiple personality disorder qualify under Brittany’s reasoning provided that the condition is resistant to treatment? It would cut short prolonged suffering and would be voluntary. Indeed, such patients could argue that they should be able to end their life before they become so incapacitated that they cannot make their own decisions.
Now let’s paddle even further downstream. You might think given the permissive views about euthanasia that Dutch doctors would have no problem making this intuitive jump and help people like Irene. You would be wrong.
The Dutch public strongly supports the right to an assisted death for people with dementia. Yet most Dutch doctors refuse to provide it. They find that the moral burden of ending the life of someone who no longer has the cognitive capacity to confirm their wishes is too weighty to bear.
Because the assumptions involve autonomy, then the moral reasoning involves consent and decisional-capacity—-two very problematic elements when talking about Alzheimers. THe patient has to have capacity enough to consent to to assisted-suicide (aka medically assisted death) but decisional-capacity isn’t just subjective like suffering. It has external criteria.
Dr. Bert Keizer is alert for a very particular moment: It is known as “five to 12” — five minutes to midnight. Doctors, patients and their caregivers engage in a delicate negotiation to time death for the last moment before a person loses that capacity to clearly state a rational wish to die. He will fulfill Ms. Mekel’s request to end her life only while she still is fully aware of what she is asking.
This sort of 5 till 12 dilemma is only found, I think, downstream from the permissive euthanasia assumptions. If the doctor waits too long to assist in death, the dementia makes consent questionable.
In Practical Bioethics, I reference Alan Wertheimer who says consent is “morally transformative,” That is consent makes what is normally impermissible, permissible. The Dutch doctors are “feeling” this concern.
Dutch med providers prefer voluntary euthanasia. In a pinch they will perform euthanasia on a non-voluntary patient who is in a persistent vegetative state. They are, however, very concerned about involuntary euthanasia. As one Dutch doctor explains,
“ . . . neither of you quite knows what the prognosis is, how things will develop — and so the harrowing aspect of this whole thing is looking for the right time for the horrible thing.”
One doctor bluntly explains to his patients facing dementia,
Assisted dying while mentally incompetent, it’s not going to happen. So now we’re going to talk about how we’re going to avoid getting there.”
Five-to-12 makes the burden being placed on physicians morally tolerable. Ironically, the subjective element here is the how comfortable the doctor is.
“As a doctor, you are the one who has to do it,” said Dr. Stigter, a warm and wiry 44-year-old. “I’m the one doing it. It has to feel good for me.”
In 2016, a [Dutch] doctor who provided an assisted death to a 74-year-old woman with dementia was charged with violating the euthanasia law. The woman had written an advance directive four years earlier, saying she wished to die before she needed to enter a care home. On the day her family chose, her doctor gave her a sedative in coffee, and then injected a stronger dose. But during the administration of the medication that would stop her heart, the woman awoke and resisted. Her husband and children had to hold her down so the doctor could complete the procedure.
The doctor was aquitted in 2019. The patient’s advanced directive was evidence of her consent. Still, the case had the same sort of impact that say Canterbury v Spence or the Karen Ann Quillan case do in the U.S.
The struggle for doctors is figuring out definitions of intollerable suffering downstream from subjective accounts of suffering
Dr. Stigter pushed Mr. Zuidema to define what, exactly, his suffering would be. “He would say, ‘Why is it so bad to get old like that?’” Ms. Zuidema recalled. “‘Why is it so bad to go to a nursing home?’” She said the doctor would tell her father, “ ‘Your idea of suffering is not the same as mine, so help me understand why this is suffering, for you.’ “
As long as doctors take the time, the 5 to 12 moral/philosophical negotiation occurs. However, there is another worry:
For five to 12 to work, doctors should know their patients well and have time to track changes in their cognition. As the public health system in the Netherlands is increasingly strained, and short of family practitioners, that model of care is becoming less common.
Only time will tell how the 5 till 12 moral dilemma will work itself out in the Netherlands. It is certainly something I will include in a second edition of Practical Bioethics. Message me if you have thoughts.