What a Dying Person Wants

drugsA recent Medscape health bulletin contains a remarkable personal story by sociologist Margaret Nelson called Listening to Anna, about the difficulties that family members, those given ‘durable power of attorney’, and executors of ‘living wills’ face trying to decide what is ‘best’ for a suffering, terminal, and/or incapacitated patient.
 
Most of you don’t know it (or don’t want to believe it) but at some point in your life there’s a high probability you will have to make such a decision. It will present you with several serious quandaries:
  • The wishes the patient expressed in a healthy, rational moment may appear significantly different from what you perceive his or her wishes to be at a critical stage of illness.
  • Those wishes may also be at odds with what you think you would want in the same circumstances.
  • You may not know the patient’s personal views on using extraordinary means to extend life, especially if great or continuous pain is involved.
  • Frequently, 30% of life-long health costs can be burned through in the last six months of a person’s life, and if costs are not fully covered by insurance, the desire to give the patient the best possible care can be in conflict with the desire not to burden family and descendants with unnecessary, fruitless and/or crippling bills.
If that weren’t bad enough, the ideologically-crazed Bush Administration has waded in, with its outrageous, Taking Care: Ethical Caregiving in Our Aging Society ‘recommendations’, including this especially egregious one:

Advance instruction directives (or living wills), though valuable to some degree and in some circumstances, are a limited and flawed instrument for addressing most of the decisions caregivers must make for those entrusted to their care.

In other words, as demonstrated in the Schiavo debacle, if doctors and loved ones do not do everything possible to keep a patient alive, at any cost, the state licensing authorities and the government may choose to investigate, censure, intervene, override, and impose its values on your personal decisions. 
 
Whether or not you live under such a regime, if you want to spare yourselves and your loved ones the agony and cost of uselessly and painfully prolonging the terminal period in your life, you need to ensure you and your loved ones have the kind of clauses Anna had in her living will:

In the event that I suffer from a condition in which there exists no reasonable expectation of (a) my recovering the use of my mind, memory, and imagination, and/or (b) recovering the physical and mental resources needed for living with adequate independence from medical, mechanical, and nursing support, then I want to be allowed to die as quickly and painlessly as possible.

If I suffer a condition from which there is no reasonable prospect of regaining my ability to think and act for myself, I want only care directed to my comfort and dignity, and authorize my agents to decline all treatment (including artificial nutrition and hydration) the primary purpose of which is to prolong my life.

Most boiler-plate living wills/health powers of attorney do not have such specific clauses in them — they refer only to the right and responsibility to make “personal care decisions” in the case of a patient’s incapacity to do so.

And then, once you and your loved ones have these clauses in place, and a wallet card to indicate to medical authorities you have a living will, you all need to be ready to do battle with family members and/or doctors and/or government meddlers with their own personal ideological agenda who will try to overrule the clear wishes stated in these clauses. This will come at a time when you and your loved ones will be especially vulnerable to doubts and coercion — sleepless, exhausted, stressful times when this unneeded and unhelpful outside pressure will only make matters much worse.

I keep saying it is not in our nature to plan ahead, to prepare for unforeseen eventualities. But after reading Anna’s story, I’m damned well going to make sure that these clauses are in my living will, and that I sit down with each of my loved ones and make it absolutely clear in everyone’s mind that, if and when the time comes, I am counting on them to have the courage and integrity to pull the plug.

You’re my witnesses. D–N–R. “Don’t leave ’em nothin’ to work on.”

Category: Being Human

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6 Responses to What a Dying Person Wants

  1. Dave Pollard says:

    Oh, and don’t forget to sign your organ donor card, too.

  2. Wrapped up in the idea of artificially prolonging life–regardless of the condition–is the sentiment that death is bad. Certainly an unusually early death for a person is often tragic, but in general (especially for the elderly) death is part of life’s cycle. It’s unfortunate that a written request is sometimes required for this.

  3. Calvin Hobbes says:

    Hi Dave,How are you?Found an interesting article as to why the world might be soooo screwed up!!http://gopikrishna.us/articles/nobel.htmlRead it slowly and carefully and let me know what you think about it.Love all your articles and analytical conclusions!!Thanks,Calvin

  4. This is a fine post, Dave. I’m saving Anna’s words so I can use a version of them in my own health directive. I’ll also be linking to this piece from my blog. I agree with the commment above, that many people see all death as bad instead of realizing that it is part of the life cycle. Life is terminal. Keeping a person alive just so we can say we kept them alive is not a reason to let someone continue suffering. Compassion sometimes calls for allowing a person to have a peaceful death.

  5. Barry Vornbrock says:

    My husband and I were talking about this yesterday. We thought of two additional, helpful :-) items to include with a DNR: WNP — Will Not Pay and a dollar sign/circle/slash.Right on Dave!

  6. Mariella says:

    In february, my mother and I had to face this situation. My mother´s brother, 83 years old got a severe brain stroke, he had always asked, that when the moment came, to let him died naturally in his home bed….. when the moment came, even though we knew there was no way back, (unfortunatedly, my bio energetic doctor that also works helping people to die naturally, was on a trip) we had too many doubts about how to relief his pain so we called a “normal” doctor…. Of course the doctor wanted us to take him to the hospital.. “you cannot know what he wants now” she said…. and then she told us in a very accusating tone : you are letting him die…!!! And we answered “yes” that is what we are doing…. My uncle died in three days… his body collapsed naturally…. each day the doctor or nurse came to see him they said: you see, he is retaining water… or he is breathing to quickly…. he will collapse………. Now I know what it is that these hospitals do : they keep your body from collapsing for a week or two, and maybe you´ll come out of the stroke absolutely limited in your functions, or die anyway….. It was a very hard decision to take… because of our ignorance, our little and fearfull contact with death, I felt lots of doubts and guilt… today I know we did the correct thing…. Along with Dave´s suggestions, I think it is wise to contact doctors that help people dying peacefully at home….. and read about what in spanish is called “bien morir” = well dying. It will be much easear if we are prepared… my mother comes from a small rural Andean town, she had witnesed the death of 3 brothers, and old relatives…. she knew what dying was about so she could face the doctors anger….

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