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Risa Denenberg

Risa Denenberg
Location
Seattle, Washington, USA
Birthday
February 25
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Smart Girls Ink
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I also blog about end-of-life issues at http://risaden.blogspot.com/

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FEBRUARY 18, 2009 12:06PM

Why even bother to sign a living will?

Rate: 23 Flag

Recently I met with the family of a man in his late sixties who had had undergone emergency surgery for a bowel obstruction, then had a cardiac arrest, spent 3 weeks in the ICU, and now was in a vent-weaning facility. Second wife, three adult children, one adult grandchild. The patient was lying in bed attached to the ventilator through a tracheostomy, otherwise appearing serene and unbothered. Completely unresponsive, and no wonder, he was receiving a considerable load of sedating medications. When the sedation level was lowered, to test his potential to breathe on his own, I am told that his appearance changed totally, breathing rate increasing into the 50's, anxiety and panic transforming his expression. Still his physician remained hopeful that he was making some progress towards weaning from the vent.

The family was lovely and in agreement about wanting what was best for this man. They had no doubts that he was receiving excellent care. One of his daughters was a social worker who worked in a nursing home who told me that she often helped her elderly patients to fill out advance directives. The patient and his wife both had spoken about what they would not want to go through in an event just like the one I am describing. He had a written, legally recognized advance directive saying that if a trial of artificial ventilation did not suffice, he would not want prolonged ventilation, would not want dialysis, would not want to be fed through a tube. But here he was, after a long hospitalization, now in a hospital devoted to long-term ventilation care, sedated, with a trach, on a ventilator, with a feeding tube.

The wife told me that he had an "ominous" feeling about the surgery and had reminded them of his advance directive as they wheeled him into surgery. The family agreed that his health had been very poor over the past year, due to chronic heart, lung, and kidney disease, and that he often talked about not wanting to live if he would have to reside in a nursing home. They had only recently been told that if weaning from the vent was successful, he would face another 6-9 months of rehabilitation during which he would need to be highly motivated to relearn to walk and do ordinary self-care activities. Knowing him, they doubted that he would have this motivation. He had been miserable during cardiac rehabiliation after a previous heart attack. In fact, it is not an exaggeration to say that this family was wracked with guilt that they were doing exactly what this man had told them he would never want.

How did this happen? I see situations similar to this quite often. I don't know the answer, but I do think part of the problem is that we fill out advance directives (those of us who bother to do this task at all) with our minds. Emotionally, we have no sense of what we are saying or doing. We don't go that extra mile to really imagine being in the situation we are saying no to. The persons that we ask to speak for us in our extreme vulnerability have no idea what we are really asking of them. When a close family member is asked to speak for someone who cannot speak for herself, there is a powerful urge to follow a course based on their own desires, not necessarily the patient's. And then on top of this, no one along the way sits down and describes how the "rest of the story" is likely to unfold. Families get told that "the kidneys are doing better today" or that "he has a good chance of breathing on his own if we give him a few more weeks". The most likely outcome--that he will go from the hospital to a vent weaning facility for four months and then to rehab for 6 months and possibly never return to being able to dress or feed himself--is not revealed. It's the combination of "piecemeal" optimism, inability to predict outcomes very well, and the failure to find out from the family what an acceptable recovery really would look like for this individual that combine to create unbearable pressure against following the directives that we agree to adhere to in the name of patient autonomy.

Perhaps we all lack the courage of our convictions. Or perhaps there really is no such thing as individual autonomy, and therefore, no value in creating advance directives. I am thinking today, at least, that there really is no such thing, it's an illusion that we are all complicit in. Outcomes,  guilt, stories, families, decisions,healthcare providers, estrangements, lab results, God, CT scans, emotions, legacies, factors innumerable ... somehow combine in an unpredictable forcefield along a path that no one controls. This is our healthcare system.

At the moment, I can't think otherwise. How else can I understand this story?

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So much to ponder, but in the end it is an individual choice in a system that treats us as a jumble of biological conditions, instead of living, thinking, sentient beings.

and what could possibly be going on in a mind that cannot make itself heard? that is the scariest question of all.

I've seen the movie "Who's Life is it Anyway?" with a young Richard Dreyfuss. His cogently passioned argument that the system had no right to torture his mind by keeping his body alive was a desperate plea to be heard before his body deteriotated past the point of his being able to "direct a good god-damned thing"

rated.
Mom has an AD I'll honor. My siblings, who at the moment would say they support her AD, will fight it but I have her POA (both medical and financial).

But on the other end are the fine folks at hospice (a wide brush there). When I put my grandmother in a nursing home, she was receiving hospice. Big fight ensued when they didn't want to let her have antibiotics for a UTI which was a palliative care issue and not related to her congestive heart and other co-morbidity factors.

Risa, I just don't know why we can't all handle the end of life in a more honest fashion.
I'm right in the middle of this one. My husband's uncle had a living will and his wife faithfully was trying to enforce it. His sisters got together and overtook the situation and had a feeding tube reinserted against his will. (He was late state Alzheimer's and was at the point of functionins as a two year old, to the point of not even staying dressed and clean.) His will was completely ignored... what does a living will mean other than saying: here's what I want. Doesn't mean it will be done. I must say I'm confused about the whole topic.
You express the problem and its really true... we have an illusion that we can do the right thing as we see it. It still depends on the doctors/medical system.
I am increasingly uneasy about some supposedly enightened end of life care. My uncle had Parkinson's Disease but was coping, living at home with his wife, being very careful. He developed pneumonia; the hospital basically said feeding tube or it is too dangerous to feed him. Up until then, he had been eating normally. He had made clear in an advance directive that he didn't want a feeding tube. No one tried to feed him again, even though there he hadn't suffered from aspiration pneumonia. They convinced my aunt that the humane thing to do was only to hydrate him, keep him comfortable until he died.

Quality of life is an individual judgment, isn't it?
Argghhhh. My grandmother was cremated even tho she was a Catholic and very much against it. Nobody listened to what she wanted. rated.
This is a very important post that should be on the cover!

I've seen this kind of thing both working in hospitals and in hospice and it is truly the living who can't let go of someone who is basically dead or dying or will live with no quality of life.

And I've also told people many times that an Advanced Directive is only as good as the person who you give the decision to, as hospitals won't go against the family even if you have other wishes in writing. So you really need someone who can make a tough decision, and also you need to really talk to them and make it clear what you want. That's what I've done with the people I have designated (primary and secondary) in my Advanced Directive. Some experts advocate not naming a spouse as your decision-maker for the very reasons you portray here. My partner (we're not married) named me because otherwise by law it would fall to his young adult son and he didn't want to put that burden on him. he knows that I'd consult him before doing anything but more importantly, I have the wherewithal to "pull the plug" if I think that's what my partner would want.

Talking to people about all this, esp to those people like a spouse who have legal decision making unless you designate someone else, is actually far far more important than the piece of paper. As you say, without that understanding, the piece of paper can be worthless.
So much to ponder here. Considering someone other than a spouse or family member as the designee in a living will might help ensure it's enforced as you intended.
This is something I needed to think about. Thanks for writing it.
My mother had a DNR (do not resusitate) order in her freezer - she was against extra-ordinary measures on her behalf.
One thing she said to me stuck in my mind: "Doctors and medicine don't help you live longer - they just keep you old longer".
She died in her sleep. Her days before death were a mixture of lucid and oblivious; I loved the lucid ones, but the oblivious ones were a foretaste of what I would experience after she died. Keeping her alive would have meant enduring an unending sense of grief without closure and, in my mind, would have been a dishonour to who she was.
My point being, my mother made her choice on meeting her inevitable death on her terms. We all have that choice.
There's no doubt in my mind that the discussion needs to happen with the primary care doctor and everyone in the family so that the wants and needs of the patient can be met as completely as possible, and as honestly as possible. Very important post...thank you rated
Goes hand-in-hand with the excellent piece about organ donation yesterday.

What you want, what you express, what you document...not always going to be what happens when the people left to speak for you are making decisions emotionally rather than rationally.

Cat, glad to hear you have POA. That's critical.
Death is the natural end of life. It is not failure, as much of the medical community seems to believe. I think it helps if there is someone sympathetic, but slightly removed to talk to the family, to help them understand that death can be a beautiful transition if it is free from machines and needles. Read Ram Das and his work with dying patients. Read the guidelines of Hospice understand the normal stages of death.

Personally, I attended my father-in-law's death. It was very peaceful, although in a hospital. We withdrew all treatment three days before he passed. I had a sound-machine of ocean waves and a ceramic Christmas tree in his room.

My own father passed on a year ago January 11th. It began as a routine hospitalization, with everything being done to keep him alive against his will. Even though we all agreed never to do this. We knew that as teenagers that our parents didn't want to be kept alive this way. But it took the two sibling from out of town to say, "It's time to let him do what he wants to." We quit life support, and loaded him in an ambulence and at four p.m. took him home to hospice care. He died at nine that night, in his living room, fire in the fireplace, with the TV on (as it always was) surrounded by all of his children and most of his grandchildren, and with his beloved "Diddy-dat," the cat, beside him. We should be so lucky.

This is possible if we can leave behind the fear, and learn to work in harmony nature, not against it. Good luck to you and to all who make these decisions.
any good american has a gun in the bed-side, put it to use while you still can. when you can't, you put an enormous burden on family. don't expect them to do for you what you are too foolish to do for yourself.
To do what you do would take more than I could bear, Risa. Thank you for raising these questions and putting them so cogently and non-judgementally. No amount of logical reasoned discussion, prior to the critical event, can prepare you for the moment when these decisions must be taken. I, too, am glad you have POA, Catamite. It will serve you well in countering the objections of other family members. I fear you will need more than just the AD and the POA, though I hope not. Despite all my training, I found myself just as hysterical as everyone else, railing against fate, slapping at that bad ol' Bogeyman and clinging on - for MY sake, I admit now. I have a friend now with Parkinson's who speaks frankly of her AD and the arrangements for her death. It breaks my heart but at least I am not her family.
We don't let go easily of those we love. But then, why should it be easy? (Rated)
Thank you, Risa, for this important post – truly a critical issue. I really think your notion of “piecemeal optimism” and the inability to reliably predict outcomes are at the heart of the situation. It is still hard to believe that things can wander so easily away from the documented wishes of the patient. Glad that this piece is now getting coverage on the front page that it deserves.

FYI, the organ donation post referred to by Verbal Remedy is Why be an Organ & Tissue Donor? Because of Sarah.. It is something that is near and dear to my heart as well.
yeah, this is on the cover! Glad it's getting deserved exposure.
Wonderful post. Having been through this several times with my parents and my wife's, I can attest that Living Wills do work if the family makes them work. Someone has to stand there every step of the way and say "no. We aren't doing this." The system will continue to treat unless stopped from doing so. I think more people should consider in-home care for loved ones nearing the end. Much easier to keep control.
My mother died in September 2008. Prior to this, we spoke many times of how she wanted the end of her life handled. She signed a DNR, and told me repeatedly that she wanted to let go when it was time, no measures to prolong her life. The toughest thing for me as her only child was to watch her decline in a comatose state, with nothing to do for her but pray that the end was close and she felt no pain. At her bedside, I saw one last smile from her right before the end, and I felt comforted by it. For my part, I will designate one child who is strong enough to carry out my decisions in this regard, and back it up with legal documents. Thank you for this post, Risa. Rated.
Perhaps this will be one of the toughest situation that a child or a spouse of person under this condition would face. In hoping that the love one would get better, the family would believe the doctor's opinion and forego the living will of the patient. It is difficult to judge this action because it was done out of love.
Great article... now I am hoping that I wouldn't have to face a similar situation. :)