Anyone who knows up close what it is like to have a loved one die of Alzheimer’s can’t help but sympathize with the pain of a husband watching his wife fade away from the dread brain disease. I’ve been there. My uncle died Alzheimer’s.
But legalizing euthanasia for people with dementia would open the door to mercy killing precisely because it is so hard on families. Indeed, the story of a husband who wants his wife mercy killed illustrates the point precisely. From the story:
Jack Barnes, 81, has been married to his 80-year-old wife Faye for 59 years. He said they have had a long, fulfilling life together and now his wife wants to “die with dignity,” but North Carolina law does not permit euthanasia. N“It doesn’t make sense to keep her alive,” he said. “She’s basically dead.”
No, she’s not. She is profoundly disabled, and I think that gives her a greater claim on all of us for love and care, which honors her dignity and her equality. And indeed, those services are available for people in Faye’s condition–as they were for my uncle.
But things should never get that far, said Carol Long, director of adult daycare at Onslow County Senior Center. Long not only works with the elderly, she cared for her mother who was stricken with Alzheimer’s disease for 15 years before her death in 1999. “No way would I ever consider euthanasia,” she said. “Alzheimer patients don’t know they have the disease. They are comfortable with their situation. Who is suffering the most is family and caregivers who cannot see past the need for 24 hour care.”
Indeed. My aunt suffered for her husband. My mother suffered for her brother. My cousin suffered for her father. I suffered every time I visited and held him in my arms–my wonderful uncle. And therein, in the guise of compassion, lurks pronounced danger to the medically defenseless:
Barnes said he doesn’t feel the laws in North Carolina will change in time to help him or his wife, but maybe the next generation could be spared the pain he has endured watching his wife die in increments.
Barnes is undoubtedly a loving husband at a loss over his terrible loss. That leads to despair and the desire to do the wrong thing for the right reason.
But there would be others who would have different motives–easily masked by “compassion,” such as the killer George Delury. Besides, the moment we declare some of us are killable, they will have ceased to be “us,” but become “them.” That should unacceptable in even the most difficult circumstances.
March 29th, 2010 | 3:32 pm
” … now his wife wants to ‘die with dignity,’ but North Carolina law does not permit euthanasia.”
There’s nothing like good advanced planning. The obvious answer to this particular problem is for Mr. Barnes to check out the regulations in other jurisdictions where it might be possible to honor his wife’s wishes without the unwanted ministrations of officious do-gooders. My own living will directs my administrator specifically to move me to the nearest jurisdiction in which my wishes will be honored, even if the act of moving shortens my remaining life. Can’t be too careful, you know.
March 29th, 2010 | 4:05 pm
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March 29th, 2010 | 5:14 pm
I’m curious to see how this term disabled is so often used now by those who oppose patient choice at the end of life. So too is Stephen at Not Dead Yet, a disability rights group. http://notdeadyetnewscommentary.blogspot.com/2010/03/terri-schiavo-family-guy-family.html
A couple of notes: Disregard for the emotional needs of caregiving family is callous and unethical (but all too common among those who are anti-choice/anti-medical intervention during pregnancy and anti-choice but pro-futile/aggressive care at the end of life).
Alzheimers is a terminal disease. We often fail to recognize it’s mental AND physical effects. 4.5 million Americans, that’s 1 in 10 over 65 and half of those over 85. The best way to prepare for such an illness is to plan in advance.
Forty years ago, death meant the almost simultaneous cessation of heart beat, respiration and brain activity. Medicine can now maintain the former two almost indefinitely. So what does death mean now? This is what society and laws are working to reckon with.
The recent special issue on “assisted suicide” by Disability and Health Journal works to include all of us in the disability category because we will all suffer some disability (frailty, immobility, loss of function) if we live long enough. While this is a fantastic classification for disability rights, I wonder how it affects patients’ rights and autonomy and our struggle to define death. http://www.disabilityandhealthjnl.com/webfiles/images/journals/dhjo/PR_DHJ_Assisted_Suicide_FINAL.pdf
The facts of the Delury case are highly contested. WJS cites his own article.
Today, most states allow the denial of aggressive/futile medical care although many bills are working to deny patients even those rights. See Idaho and any other provider refusal law that takes the decision-making out of the hands of the patient and their proxy and gives it to the state or medical institutions and providers.
Hospice care does the best job of supporting the needs of family members, keeping patients comfortable, and honoring patient choice in medical care.
March 29th, 2010 | 8:25 pm
“…many individuals with dementia rate their overall quality of life as good or excellent, despite losses that some would consider devastating.” Langdon, McCurry and Teri in “Alzheimer’s Care Today” 10/07, vol. 8 #4, pp.309-318.
I saved this quote because I knew it was very poignant the minute I read that journal article about quality of life for dementia sufferers.
The husband says she wants to “die with dignity,” and then a short while later, “she’s basically dead.” Which is it? If she’s basically dead, then how do you know she wants to die with dignity? The key to quality of life in dementia sufferers is not to eliminate life, but to CARE for them and treat them with the dignity they have as persons.
March 29th, 2010 | 8:35 pm
Unfortunately, we now seem to live in a society that has, either explicitly, or imlpicitly, accepted the validity of utilitarianism as a legitimate ethical theory. We need to reconsider the deontological approach, which indicates that all humans have intrinsic worth, regardless of their physical or mental states.
March 29th, 2010 | 9:15 pm
The best way to allow someone his or her dignity is to treat that person as if he or she is beloved despite the ravages of disability or disease.
I am so sorry, HW, that you feel that your life is worthless if you are not healthy and well. It makes me very sad.
March 29th, 2010 | 10:57 pm
AN-I find it hilarious that you cite Stephen Drake as someone who would side with you on this issue. NDY was formed SPECIFICALLY to OPPOSE euthanasia and mercy killing of the handicapped, including those with Alzheimers, cancer, etc. Go dunk your head in some cake batter.
March 30th, 2010 | 9:08 am
holyterror: If my life devolves into the reality of lying in a bed blind, deaf and insensate then it will, in my judgment, be worthless to me. The quality of one’s life is best decided by the person to whom it belongs. Opinions vary, and people will disagree. You may be saddened by my choice, but ultimately it’s MY choice, not yours, to make, just as it is not my place to make decisions about the value of your life to you.
I base my opinions on the concepts of free will and liberty, which recognize the autonomy of the person and his right to maintain control over his own life. The Declaration of Independence has immortalized this as “life, liberty and pursuit of happiness.” In my opinion, once a person accepts the argument that another person or institution has a superior claim to his existence than his own, he admits to being no better than a slave.
March 30th, 2010 | 3:42 pm
Only if he has all the facts. And you do not have all the facts. You do not know what living with such disabilities is really like.
April 1st, 2010 | 1:37 pm
Mary:
Why not pause, go back a few steps and re-read your post.
Who, do you suggest, can possibly know more about how I feel than I? Do you claim to have that knowledge yourself; or is there someone you think is better-qualified than I am to make a decision concerning how I feel about the disabilities with which I may be living?
The idea does sound odd, if not downright presumptuous. Whose life is it anyway?
Care to elaborate?
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