Wednesday, June 10, 2009

'Well, I’m still in a quandary over that...'

Two related articles on surrogate decision making.

Research on Aging has a study about older adults' understanding of their spouses' end of life preferences. The data come from the Wisconsin Longitudinal Study - a large, decades long study of many thousands of people who graduated from Wisconsin high schools in 1957 (nearly all participants are white). This study involves ~2700 married couple, all approximately 65 years old, who were surveyed in 2004 and were asked, among other things, questions about EOL treatment preferences: the scenarios given were basically 'you're dying and in severe constant pain - would you/spouse want to continue/not all life-prolonging treatments?' & 'you have limited ability to speak/walk/recognize others - would you/spouse want to continue/or not life-prolonging treatments?' Respondents said what they'd want and what they thought their spouse would want.

Most people (80% range for pain, 90% range for cognitive impairment) said 'No' to life prolonging treatments in both scenarios for both themselves and their spouses and there was good concordance (in the 80% range). About a third of participants had named a health care power of attorney; and about half said they had discussed preferences with their POA. There weren't any real gender differences and respondents reporting that they had spoken about their preferences with their spouse weren't any better predictors than those that hadn't.

A few thoughts about this. The concordance rates here are significantly higher than prior research into this (this is me speaking from memory here - my general impression over the years from following similar research is that surrogates/spouses' predictions are very accurate), however pretty much everyone here was saying 'no thanks' to these scenarios which make this difficult to interpret. This represents further research showing that having a conversation with a loved one (or at least reporting you've had a conversation) does not improve accuracy in predicting what that loved one would say in these EOL scenarios. Finally, what gives me pause about this whole thing is wondering how helpful the scenarios actually are, particularly the first one. (The second scenario essentially describes severe dementia and most Americans seem to say 'keep me comfortable' when severe dementia is described to them, which is not to say that is what happens by any means.) The first scenario describes a thankfully rare situation, and I can't remember the last time, when I sat with a surrogate and said 'your choices are maintaining your loved one is a state of permanent severe pain or keeping them comfortable.' This is for a lot of reasons of course, but most of the conversations/scenarios are much more ambiguous and aren't 'either/or' Comfort+Death-sooner vs. Agony+Death-a-little-later scenarios. And I'm glad they're not. But the fact that most people don't choose Agony+Death-a-little-later for their spouses (who agree!) is not particularly telling about the accuracy of surrogate decision-making.

Of course the Real Big Question here is if so many of us (by us I guess I mean Americans) want no life-prolonging treatments in the setting of advanced dementia why are so many of us getting them?

Journal of Aging and Health has a qualitative study on how surrogate decision makers of patients with dementia arrived at their knowledge of patients' EOL wishes. The study involves interviews with 34 surrogates (76% white, 79% female, 38% children, 35% spouses) of nursing home residents with advanced dementia, and involves asking them about EOL decisions, what the surrogates base that on, etc. Most of the paper is a thematic, narrative description of what these surrogates said about conversations they had, how/why the patient filled out an advance directive, what prompted having a discussion about EOL care with the surrogate (if ever), what the surrogate is basing their decisions on, etc. I basically found it an interesting read - what these people said about these experiences - it's kind of like seeing your (work-) life laid out before you.

A couple interesting items from the paper.... First is a list of how the surrogates described what their loved ones said to them about 'extraordinary measures' (this the language the surrogates used):

Not on a machine just to stay alive
No life suspension
No keeping alive with machines
Not prolong this life
If we ever got terminal, don’t hook us up to anything
We don’t want life extended by artificial means
No advance life support
“I wouldn’t want to be kept alive by a machine”
Not on any type of machinery to keep her alive; “I don’t want to be kept alive artificially”
She wouldn’t want to be hooked up to any system to keep her
Absolutely no extra activities to keep him alive
No life support
If it’s her time she wants to go. “Don’t keep me here. Don’t hook me up.”
Didn’t want to be on no support thing, like something to keep her living
Didn’t want to be held for 5 years on artificial nourishment
I initially thought 'life suspension' was kind of quaint, but reflecting on it further it doesn't seem inappropriate at all to the situation.

The second speaks for itself, and was a reminder to me of just how difficult it can be at times for family members who are told some variation of You need to make the decision s/he would make if he could. Some people take that instruction seriously, which doesn't make it any easier, and I've seen it cause more confusion than clarity on numerous occasions. Patients don't know what they want half the time: they want 'to live' (who doesn't?) but don't want unnecessarily burdensome, painful, displacing, unhelpful medical care when they're dying (who doesn't?) - the problem is figuring out what exactly that means. I have easily had a dozen situations in the last year in which a loving family member, struggling with a decision, told me some variation of 'Mom told me she never wanted to go a hospital and that I should never give up on her no matter what.'
Interviewer: So he never, ever mentioned what kinds of medical procedures he would want if he became very ill?

Surrogate: Well, once in a while he would say something. He’s not consistent.
Sometimes he says, “Yeah, I want them to do everything.” And then, if he
sees something on TV, he’ll say, “I don’t want that.” And then he’ll go back,
“Yeah, they should try to save you.” So, they just put the whole burden on us
to figure it out.

Interviewer:
Okay, so there was no informal planning or formal planning at all.

Surrogate:
Uh-uh [negative].

Interviewer:
And what is your understanding of what your father wants? How
did you come to some understanding that helped you decide his view?

Surrogate:
Well, I’m still in a quandary over that, to tell you the truth.