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Jacob M. Appel

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"Mercy Killing": When Love & Law Conflict

Posted: 09/25/09 10:58 AM ET

I'd sooner be dead than live in a nursing home.

I've chosen to emphasize that point now, when I am relatively young and in good health, to show solidarity with two brave men who have recently found themselves at the center of the public debate over assisted suicide. One is Paul Weinstein, a 78-year-old retired pharmacist from New Rochelle, New York, who killed his dementia-afflicted wife of fifty years to fulfill a pledge not to institutionalize her. The other is James Fish, a 90-year-old California physician who shot to death his 88-year-old wife, Phyllis, to end her ongoing suffering from dementia and terminal pancreatic cancer. Mr. Weinstein now faces murder charges, while Dr. Fish -- who is recovering from a self-inflicted gunshot wound -- will apparently be tried for manslaughter. Such prosecutions may vindicate the rule of law, but they do so by compounding human suffering. The real tragedy in both of these cases, beyond the obvious misfortune of human illness, is that both Mr. Weinstein and Dr. Fish felt compelled to act illegally. But the fault is not theirs. The blame rests squarely with a society that forces devoted husbands and wives to choose between the welfare of their spouses and the letter of the law.

Which returns us to nursing homes. I respect the fact that some older Americans find rich and meaningful lives within such institutions, and that many of the caregivers at these facilities are deeply devoted to their work. I would certainly never deny anybody the right to live out his final days in such a place, if he affirmatively so chooses. At the same time, such facilities impose grave limits on human autonomy. These restrictions often encroach upon the residents insidiously, as their conditions decline. One may enter a nursing home with mild cognitive impairment, but soon enough one needs permission to leave one's room unsupervised or is being forcibly medicated to reduce unwanted behaviors. That is a risk I am entirely unwilling to take. As a personal matter, I find the prospect of relying on another human being to change my clothing or to empty my bedpan incompatible with the minimum level of human dignity that I ever wish to endure. When I can no longer manage my activities of daily living at home, I am prepared to conclude my life with the same dignity that I hope I have displayed during my life. I prefer a timely death to a lengthy sojourn in a human warehouse. Moreover, when I do pass on, I want my money to go to the causes that I believe in and to the people that I care about -- not into the coffers of health care conglomerates. Needless to say, the nursing home industry views matters differently.

Some opponents of legalized aid-in-dying are genuinely motivated by a concern that the process will be abused -- and these concerns ought to be taken seriously. Any legislation on the subject should certainly include safeguards to ensure that participants are willing, or if incapacitated, have spelled out their wishes clearly in advance. Other opponents of legalized aid-in-dying appear to believe that human suffering is somehow ennobling and that God's mission is for each of us to die a "natural" death. These zealots are often far harder to engage in any meaningful dialogue, as there is little purpose in discourse with individuals who believes they are acting in accordance with divine will. What should not be overlooked is that there are also organizations, such as "True Compassion Advocates" of Washington, which oppose legalized aid-in-dying in the name of better end-of-life care. These groups would have us believe that well-funded palliative therapies and hospice programs cannot exist simultaneously with legalized aid-in-dying. The experience of the Netherlands, which has both a well-developed aid-in-dying system and some of the best palliative care in the world, belies this claim. However, as people choose to control their own deaths and the legal system increasingly accepts these choices, as is already the case in Oregon, Washington and Montana, one can expect these palliation-only organizations to align themselves ever more closely with a "nursing home-industrial complex" that stands to lose billions of dollars if people choose to die on their own terms.

Each year, millions of Americans enter into conversations similar to the discussion that Paul Weinstein allegedly had with his wife, Helena. Mothers and fathers tell their children that they would rather die peacefully at home than in hospitals or nursing facilities. Husbands and wives pledge to each other than they will never end up in institutions. I have witnessed these conversations in my own family and, during my work as a clinical ethicist, I have heard them recounted at patients' bedsides. Unfortunately, the vast majority of these individuals do end up in nursing care, often against their own strongly-stated wishes. Most families are not equipped to care for their loved ones at home. Some such patients lack any social support at all. So their choice is either the "slow glue factory" -- as my grandmother used to call nursing homes -- or to convince someone to help them die. In an ideal world, that would be a clinic where trained professionals could ease the suffering out of earthly existence. Or they might summon their own family physicians, who would provide lethal cocktails to be consumed in a home setting, as is done in Holland. The cruel reality, in forty-seven states, is that the suffering must hope they have relatives or friends who love them enough to sacrifice their companionship, and to risk prison time, in order to effectuate their wishes.

Mercy killing is not a problem. It is a symptom. While I certainly do not encourage the spouses of terminally ill or chronically suffering patients to take the law into their own hands when asked, I cannot fault those who do so. It may be that the tide is finally turning on aid-in-dying, as the cause has gone from a television spectacle associated with Jack Kevorkian to a matter of personal dignity embraced by large numbers of ordinary citizens. Great Britain is poised to establish guidelines for when not to charge those who aid in dying. California and New Hampshire appear ready to follow in the path of Oregon and Washington. After centuries of suffering, jointly-fostered by a partnership of church and state, a moment of moral enlightenment appears at hand. Alas, that does little good for men like Mr. Weinstein and Dr. Fish. Or for their wives. They do not have time to wait for the dithering of legislators to overcome political inertia or for meddlesome bishops to adopt a different cause célèbre. So while legalized aid in dying may be a few years off for many, we desperately need a moratorium on prosecutions in cases where such action is both altruistic and desired.

Men like Paul Weinstein and Jim Fish are neither heroes nor villains. They are ordinary men who have been forced to make decisions that no reasonable human being ought ever have to confront. We should honor their fortitude, but temper any admiration with a healthy concern for the value of the rule of law. And, most importantly, we should change that law. As much as I wish that, when I'm no longer independent, I have someone who cares about me enough to help me die, even if doing so is still illegal, I can only hope that nobody ever has to choose between love and the law on my behalf.

 
I'd sooner be dead than live in a nursing home. I've chosen to emphasize that point now, when I am relatively young and in good health, to show solidarity with two brave men who have recently found t...
I'd sooner be dead than live in a nursing home. I've chosen to emphasize that point now, when I am relatively young and in good health, to show solidarity with two brave men who have recently found t...
 
 
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11:18 PM on 09/28/2009
Congratulations John Appel on your compassionate and logical argument. Legislators world wide still appear to have problems coming to grips with this important social issue, but we are slowly making progress. Eventually the debate must lead to a result where voluntary euthanasia, with strong safeguards against abuse, is available as a legal option to those with a hopeless or terminal illness.

Here in South Australia, we have recently formed a group, Christians Supporting Choice for Voluntary Euthanasia, with the aim of showing our MPs there are thinking Christians included in the 4 out of 5 people in Australia who support having the choice of having an assisted death, when faced with a hopeless or terminal illness and pain that cannot be relieved. (Newspoll 2007).

We seek to counter the vocal Christian minority who oppose what we perceive as compassionate and caring legislation. Currently before our Parliament is a Bill to have voluntary euthanasia included as an option in our Palliative Care Act, to cover cases when good palliative care is not effective.

Ian Wood
Christians Supporting Choice for Voluntary Euthanasia
South Australia
10:22 PM on 09/25/2009
Mr. Appel,

I live in New Rochelle where I run our hyper-local news site: http://www.newrochelletalk.com/

I can tell you that little about Mr. Weinstein has been published in the newspaper. So, I wonder how you are able to discern this:

"Men like Paul Weinstein and Jim Fish are neither heroes nor villains. They are ordinary men who have been forced to make decisions that no reasonable human being ought ever have to confront."

You know NOTHING about Mr. Weinstein, his "ordinariness" or lack thereof, whether he was "forced" to make a decision or anything else about why he did what he did. For all you know he was having an affair and was caught and killed his wife in a fit of rage. Or he was drunk. You have no idea.

The initial quote that is the basis for almost all of the reporting is he "claimed that his wife was terminally ill and she had been suffering for years and he didn't want to put her in a nursing home so he took her life".

Confronting dementia or painful terminal illness in a family member is terrible. I am inclined to be sympathetic in this case but Mr. Weinstein has been charged with second degree murder. There will be a trial or some admission of guilt in a plea deal. Why not wait until we know more about Mr. Weinstein's actions before labeling him?
08:06 PM on 09/25/2009
It is an issue of control and choice, and the suffering/dying should have the right to control their own destiny and make their own choice about their own life or death, and at the same time, those who oppose such measures of course have the right to live out their days however they choose. But, our culture is so absolutely terrified of death that the majority of people would rather suffer excruciating, unimaginable pain, then to offend someone else's...or some imaginary spaghetti monster's sensibilities by ending their suffering. And if that suffering and/or death can not be halted by one's own means ie suicide, then it should be fully legal ad recognized that an appointed proxy be allowed to participate in the assisted suicide when there is no alternative
06:09 PM on 09/25/2009
My father fell into a coma after surgery for triple bypass. After 3 weeks, when his kidneys began to go, doc told my mom decision time. Persistent vegetative state and extremely decreased quality of life *if* he awoke or the plug. She was lamenting not knowing what to do, my sisters opted out, my brother waffled with the "your husband you decide." I kept saying over and over again, "dad always said take me out back and shoot me if, _____ (whatever sad human condition be it dementia, coma, paralysis etc)"

The respirator was turned off and we watched him die. In a similar situation, I hope my daughter does the same for me. We all have a right to die and we all have a responsibility to make out a living will.
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dollymajig
stuck in the wrong demographic
03:04 PM on 09/25/2009
I agree with Mr. Appel. Fortunately, I was able to get my parents' wishes for end of life care respected, but it was not easy. I can only hope my own living will will be honored, but I hope that by the time that becomes necessary, we'll have better rules. If my life has deteriorated to where I can no longer be 'me', then please, don't turn me into an expensive lab 'preparation', or oversized infant. I enjoy living, but certainly can't justify keeping the body that I inhabit going if it can't be healed, or if the control room has shut down.
11:56 AM on 09/25/2009
The "God's Will" people also mystify me - but I think you have largely misdiagnosed the nature of their disagreement. It's not, in my experience, so much that people think suffering is good and God's will. After all, unless you are a strict Christian Scientist, nobody has a "natural" death anymore. All of us regularly cheat death in ways that, 100 years ago - indeed, even 50 years - wouldn't been available to us through numerous medical interventions, ranging from tetanus shots and antibiotics to chemotherapy.

Most of the Christian opponents to assisted suicide (and, for that matter, me) believe that the gift of healing comes from God, given by Him because He loves us and doesn't want us to suffer. The main problem is that they've convinced themselves that God alone has power over death and that it is therefore Godly to always pursue life, no matter what form it takes. Of course, this belief is in part a reflection of our very human fear of death.

So instead of writing them off as unreasonable zealots, I think that you meet them on their own terms. To wit: if you believe that, for example, a feeding tube that keeps us alive after dementia would have us starve to death comes from God, then why not believe that the means for assisted suicide also come from Him - after all, both interventions help us avoid the same very unpleasant death.