What We Are Becoming: Time to Dehydrate Debilitated Stroke Patient
Labels: Food and Fluids. Humane Care.
A disturbing column in today's LA Times has a woman wanting to "let" her Dad go by removing his feeding tube--which would really be to make him go, since there could only be one outcome from such a decision.
Dad isn't unconscious. He is debilitated and disabled by a stroke. He apparently had an advance directive eschewing "extraordinary" care, which the family--rightly in my view--did not see as applying to a feeding tube. And yet, we are told that even so, he should be "let go," e.g., be dehydrated to death, because his life isn't worth living. From the column, byline Diana Wagman:But what kind of life? Since that morning, he has been in a deep sleep, rousing rarely and unpredictably and only enough to say a word or two. He's paralyzed on his right side. His eyes are closed, and the nurses, the doctors and his family cannot wake him. The rehab doctor literally knocks on his chest and shouts "Wake up, Arthur!" and he does not respond. He is not in a coma, he is not in pain, he is breathing on his own, his heart is strong, but he has basically checked out. The doctor said it's not uncommon to be lethargic after a stroke, although my father's response is unusually severe. The scans of his brain show that the bleeding and swelling have stopped, but he is not getting better. A feeding tube is keeping him alive.
Now the hospital wants to move him. It is not a long-term care facility, and he does not need acute care. He needs what they call sub-acute care, daily maintenance and monitoring, some rehab therapy to keep blood circulating. We have begun the depressing, complicated process of looking for a home. The nicest place we found is $10,000 a month once his insurance and Medicaid run out. We have no idea how long he'll be there. My stepmother would have to sell the income property whose rent supports them. Then she would have to figure out another way to live.
But do we really want to be a society that dehydrates people to death because they are debilitated elderly or have serious disabilities? Probably not--if these attitudes spread throughout the society we will be a society that wants to lethally inject them to death because we are, after all, humane.
I have great empathy for Wagman and her family. I certainly support their refusal of antibiotics or CPR in such a case. But depriving Dad of food and water--as she really does understand in this piece--is a huge thing, both medically and symbolically.
posted by Wesley J. Smith @ 9:33 AM
16 Comments
16 Comments:
I have a different take on this. As I wrote on the NDY blog yesterday (this article appeared on Sunday), I can sympathize with what Wagman was feeling.
I cannot and will not sympathize with her words and actions. Telling anyone - let alone your own father - "it's time to die" and then leave is really inexcusable.
To top it off, Wagman wants us all to know she doesn't regret her words - and by publishing this essay, she's turned her private behavior into a public request for affirmation.
My take is here:
http://notdeadyetnewscommentary.blogspot.com/2008/12/la-times-time-for-dad-to-die-really.html
I agree with Steven. We should always have empathy for whatever pain another human being is experiencing, including that which is related to long-term care for a loved one. But, that isn't the point in this case. Money should not be an objective in these cases because we should take the responsibility of providing some subsidy or even charitable monies to assist such families. I also disagree strongly with withholding antibiotics. I don't think that that is any more acceptable than withholding food or fluids when the infection is something as mundane as the flu, a UTI, or anything else that any one of us could contract regardless of our physical state. I think that the fact that the gentleman involved is not in pain is a blessing and that that alone lends powerful support to continuing rehabilitative treatment. And, even if he doesn't get that much better, what's wrong with sleeping most of the day? He isn't hurting himself or anyone else. If, after pursuing therapy, his body still wants to sleep, let him sleep. He, like everyone else, will die at one point or another. He doesn't need to be hurried along by being neglected (even though his relatives presumably aren't thinking of it in this way).
Moreover, I would never withhold food, water, or antibiotics from my parents, and I wouldn't want to medical establishment to use cases like this to force me to do soHow people can argue that dehydration and unchecked infection are peaceful ways to die is beyond me.
It will be no surprise to anyone that I think what this woman is proposing is horrifying and completely, absolutely wrong. And her attitude appears pretty sophomoric. ("Basically checked out"--deep, man.)
Practical question: Is it in fact necessary for a person in this man's situation to go to a nursing home? Could he not be cared for at home?
I agree with everything said here. WHO does she think she IS?
...The nicest place is insanely expensive, so let's just kill dad for being sick?
Oh, and I'm going to tell him to just go die, and then announce to the world that I don't regret it at all?
0.o
Wow. Gal actually went below that Singer dude.
(clarifying last comment: that prof. who promotes killing babies and the elderly, but took care of his mom-- he may be a hypocrite, but he didn't try to kill his mom....)
$10,000 a month, huh?
Lesse...
My best friend collects Transformers. Hey, don't knock it - some of the old ones we used to play with would be worth upwards of $100,000 today if we hadn't, you know, played with them... and destroyed them... and all that good jazz.
Anyway!
Both of us add to her collection, because my cats haven't learned they're inedible yet. Her cat knows better. Both of us spend about $45 a month on average to add to her collection.
My dad collects knives and swords. He spends about $250 a month on his collections.
We don't spend that money every month, though. Every other month we pool our spending cash and it goes into the collection plate, so... lesse...
3 people annually = (256 * 6 months = 1500) + ([45 * 2 people = 90] * 6 months = 540) = $2040.
Long term care annually = 10,000 * 12 months = 120,000
2040 * 24 months (give monthly instead of bi-monthly) = $48,960
120,000 - 48,960 = 71,040.
So, okay, how many people in the community would have to give up a hobby to pool together to reach that remaining $71,040 a year? I'm not talking about people who have sick or elderly relatives or small children - I listed myself, my best friend, and my dad, and none of us has any kind of dependent.
I mean, it's doable! You wouldn't even need the entire community to get together on it - just some people who give up spare spending cash, not people who dip into their necessity funds. There would be people left over to help contribute to the other neighbors who need help as well.
I don't feel like screwing around with the math anymore tonight, but imagine if I cut out my monthly spending on video games and DVD purchases and just rented movies from the Red Box for $1 instead. And there are my art supplies - go a bit cheaper and buy the stock brand of paper instead of the really expensive stuff. Buy my cats the store brand cat food instead of Fancy Feast.
We're a community. Society survives when people pull together. Why shouldn't I make a small sacrifce in my play time to help someone else out? And as someone else pointed out, that's the top tier place. I can imagine that there are other facilities that cost less that are still in excellent shape. We ought to be pulling together, instead of looking at the costs. She and her family should never be entertaining these thoughts of dehydrating her dad to death. Nobody should ever have to.
This story is an interesting coincidence. Some of you long-time readers of Wesley's blog might remember me. My mother has had a progressively debilitating series of ministrokes over the last few years, and I left work in 2006 to care for her and my late stepdad. She had a major stroke last month, necessitating her admission to a rehab facility, but now seems to be s-l-o-w-l-y improving. She just might be able to return home in January or early February after all, though in the interim I have had to apply for Medicaid in case she must stay in long-term care (i.e., nursing home).
I just had a falling-out with my brother because of his complete unwillingness to help me care for Mom--either by relieving me for a day or two periodically, or assisting financially. For example, while I was takiong care of both Mom and my stepdad, he gleefully took his wife's daughters (from her previous marriage) camping for a whole week, even after I asked him to give me a couple of days off from caring for two people. His attitude from day one has been that I should have dumped Mom in a nursing home, even though I explained to him at the time that she was actually ineligible for nursing home care or Medicaid. Until this latest major stroke, she was ruled eligible only for assisted living, for which the family must pay as Medicaid does not cover it at all.
The criterion for long-term care is skilled nursing care. Nurses don't handle daily things such as dressing, bathing, or feeding, any more than you would call the hospital to send a nurse to dress your kid every morning. But my brother has consistently refused to understand this difference, and he has copped the attitude that he shouldn't have to help because Mom should have been in a nursing home all along. Because of this, in his view I shouldn't have left work in the first place, so financial help from him to help pay Mom's bills should not be necessary as it was "my choice" to leave work and forego the income.
(I should note that as seems to be the dynamic in so many families, he asked for and accepted family financial help often in the past--but does not want to hear about it now that the shoe is on the other foot. I just stumbled across a check ledger entry in my late stepdad's handwriting where he and Mom withdrew $275 to help my brother. The same thing happened with my mother's older half-brothers and -sisters decades ago when her father, my grandfather, likewise had a stroke and required care. They refused to help in any fashion either. But they sure came out of the woodwork when he died to see what he had left them...)
My brother is younger than me. But his attitude is all too common, especially among those in their thirties and younger. They all seem to have the misconception that you simply take Mom or Grandma to the nursing home, push her out the car door, and keep going. They seem to believe that Medicaid automatically covers nursing home patients and do not understand that (1) the program never has and (2) criteria to receive the help have been progressively tightened since the early 1990s.
But most critically, they also overwhelmingly have the attitude that people such as Mom are simply burdens, better off warehoused or dead. Futile care theory and calls to remove feeding tubes as in the story Wesley cites here are merely symptoms of the larger attitude. And those people in their 20s and 30s are today's newest or soon-to-be doctors and nurses. It makes me very nervous about the future.
I posted a comment on the second print of the article, as referred by NDY's site. It had to be anonymous b/c I didn't feel like setting up yet another account...so it hasn't appeared yet.
I also wrote a letter to the LA Times which I fear was a bit too mean to publish. I should have waited until this morning to edit it.
My point was that it is tempting to judge her, or speculate on the level of weakness and/or selfishness that is behind her actions. But I feel that it is next to impossible to judge the true complexity of another person's needs, desires and decision-making.
Ms. Wagman, perhaps even more so with her father, should have this same attitude toward a man who cannot communicate easily to her, and thus err on the side of humble fortitude in the face of this part of his life.
Well, that is the nicest I can be about it. Mostly, though I am with Stephen Drake on this. The idea of telling someone to "let go," and then forcing him to slowly dehydrate to death when he has a diminshed ability to fight for his own existence....it makes me sick.
Holyterror: Too mean to publish? Who's mean? Your last paragraph said who is.
K-man: Your post reminds me that the real issues we are dealing with here is our capacity for love and selflessness. About a year ago, I posted a story about a BBC presenter who supports assisted suicide because she doesn't want to take care of her aging parents.
This kind of disconnect from family and our mutual obligations and interconnectedness is really alarming. If the basic structure of mutual support in society disintegrates, the government will never be able to take up the slack.
Good for you for your devotion. I am sorry you are facing resistance from the inside.
"The day before I returned to Los Angeles, I was alone with Dad.... I leaned over and whispered to my father that it was OK to stop fighting. I told him we all loved him and we would never forget him. I said it was time to die. It was not easy, and I cried.
The next morning on my way to the airport, I stopped by the hospital. The nurse said that earlier Dad had opened his eyes, looked right at her and said, 'Good morning.' He was asleep again as I kissed him goodbye. I don't want to be the one to remove the feeding tube, but I am not sorry I said what I did. It is time for him to go."
Seems pretty clear to me that Dad doesn't share her view. What the heck is her hurry? He'll die eventually. We all will.
That's right, Laura, what's her hurry? And how is it her -- or anyone's -- business when he dies? Where did she get the omniscient knowledge that it's "time" for someone to die?
The hospital that murdered my mother had the same attitude. When doctors and hospitals do this everyone is supposed to believe that they are entitled to because they are "doctors." Crimony.
I had to give up everything in my life, and move back to my hometown, at tremendous cost and loss to myself, to attend to my mother and the fixes she had gotten herself into as an extraordinarily high-functioning, independent, stubborn geriatric. It's amazing how people feel entitled to have opinions, express them, offer opinions when one looking out for an elderly parent -- the same way they act toward pregnant women and mothers of infants and young children. Those who have done it understand; the rest, who have never had, or had to look out for, or were not willing to, and have no idea what it is to have no siblings, and to be an only child born "late" in one's parents' lives, can't stick their noses out of it and mind their own business; they go on about how sad it is that one has had to give up one's own life, give pitying look, tell one one is being manipulated...say that if one really wanted to one could and would just walk away, even suggest that one do that... I have great admiration and respect for what you are doing, K-Man. People kept telling me how difficult it must be to be doing it as an only child, and I'd reply that it was easier than what people who have siblings have to put up with. You're doing the right thing, and it's an experience that, despite all one goes through and all it costs one, ends up enhancing one's life and being immensely. Good luck and God bless you and your cherished parent.
People just think that their "lives" are too terribly important to "interrupt" by attending to eldercare. It is indeed difficult, especially when the geriatric parent behaves the way geriatric parents often do, and when the hospital wants the parent dead because they are old, and when as a result of these factors one suffers losses, but people are just too spoiled -- and stupid, not to mention arrogant -- they have never been old themselves, and apparently they don't mind that one day they will be thrown away, and are prepared to endure that... right.
I wrote a piece calling for a national debate right after Terri Schiavo's execution. In it I asked how a judge could sentence a citizen to die without her hearing the charges against her and without a trial.
I raised the specter of all the other people out there who are also partly dead (heart beating but not yet alive, as some regard an infant, to heart still beating but already dead, as some regarded Terri S.)
As a disabled person without a voice, Terri apparently had forfeited her rights under the Americans with Disabilities Act of 1990. One might have supposed that the ADA, a federal act which presumably, until Terri Schiavo, applied equally to all U.S. citizens, confers the right to remain disabled indefinitely. That it does not is perhaps the most frightening implication of this event to those of us who care for the severely disabled.
I did not know Terri S.; I only heard about her on the news. But I have an 18-year-old son who, according to his medical file, might seem a lot like Terri. You can read my thoughts at http://www.damnyankee.com/page1/page66/page67/page67.html
David A. Woodbury
Lincoln, Maine
Woodbury Yankee: That's brilliant. I wish I'd thought of the same when I was trying to save my mother's life, or that I had had, or even had been able to had been able to retain, counsel who did. You should see the New York State "guardianship" law, which is Article 81 of the NYS Mental Hygeine Law, and what it has engendered here.
The first step to taking away everyone's rights is to flout the rights of those who cannot defend themselves, or even protest. That's what the right to life movement is really about.
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