Aug 11 2009

End-of-Life Decision Making

Much attention is being paid recently to the culture of medicine in America. Health care reform is triggering a much needed (although certainly not new) discussion about many aspects of health care, trying to find solutions to a very complex problem, and even just trying to define the problem. One small aspect of this broad discussion, one part of the culture of medicine in America, is the conflict between patient choice and cost-effective medicine.

I am a strong advocate of patient choice – long gone are the paternalistic days of doctors dictating care to passive patients or their surrogates. But part of the problem with rising health care costs is the culture of medicine – from the doctor and patient side. And therefore any attempts at making medicine more cost effective are going to require a change in that culture. I believe the preferred method is through education of best practices, but expectations may need to be altered as well.

This conflict between choice and standards is perhaps most emotional when it comes to end-of-life decisions, but this may also be where significant savings can be made without compromising quality of care.

The context I want to focus on are those situations when a loved-one has had a catastrophic event – heart attack, stroke, or severe trauma, that has left them severely brain injured. And I only want to consider the end of the spectrum where the patient has no or an insignificant chance of surviving, and if they do survive they are guaranteed to be significantly impaired (not able to live independently, or walk and talk again).  And further I only want to consider older adults (not children or adults < around 70).

In the past in such a situation the Marcus Welby paternalistic doctor might have come to the family and explained how grave the situation is, and then say that there is nothing that they could do, so come say your goodbyes and we will make sure your loved-one is completely comfortable. Of course, 50 years ago there really wasn’t much they could do.

Today we have the technology to keep people alive for a long time with heroic and expensive interventions, and this technology is advancing all the time. Recently a new technique of chilling a patient after a heart attack has become standard as it improves long term outcome, albeit modestly.

But at the same time that our technology has advanced and given us more choices, those choices have shifted to the family, who may or may not be prepared to make that decision. The health care team can educate the family as to the situation and the options, and we generally do a good job of that. But the greatest challenge is the emotional one. Many family members do not want to feel guilty about letting their parent or other loved-one die, and there may be disagreements among family members about what is the right thing to do and who gets to decide.

A recent study found that slightly less than half of so-called surrogates in this situation do not want recommendations from the physicians.Why that is needs to be further explored – it likely has much to do with trust, but there are likely cultural issues. In any case, many surrogates may be going it alone when they are making perhaps the most emotional decision of their life.

Despite this, in my experience, most families are very reasonable and deal with this situation surprisingly well. But occasionally things do not go well – there is no clear surrogate, no clear advanced directives from the patient, or the family does not seem to trust the system, or one individual simply cannot let go. When this occurs the result can be days, weeks, even months of futile and very expensive care. Hundreds of thousands of dollars of futile care may be spent on a single case without any hope of a good outcome.

These are the cases for which we need to find solutions. This is not only pure waste, such situations are emotionally devastating to the families. One might also question the ethics of performing heroic and invasive procedures on a patient without any reasonable hope of benefit.

We can look for ways and take steps to prevent these situations from developing – encouraging advanced directives is one option that seems to help. Older adults seem to be more comfortable with the closeness of their mortality on average than their children – and so physicians can encourage their older patient not only to have advanced directive but to talk to their children about their wishes. One conversation in which “mom said she would not want to live like this” can solve the situation.

But when all efforts to prevent these impasses fail, then how should we respond. Right now the family has all the power – that is the balance that our society has opted for. If the cost of health care were not an issue, then this balance would be reasonable, but it is an issue. It is so much of an issue that we are rationing health care and talking about how to further ration it. So those hundreds of thousands of dollars spent on futile care affect everyone by raising the cost of the whole health care system. It may therefore be worthwhile to explore ways to resolve impasses regarding futile care in a fair, objective, and compassionate way. And such measures should only be considered in extreme cases when care is truly futile.

We should at least pick the low-hanging fruit. All that is required is the political will. But that is likely to be a difficult if not insurmountable hurdle.

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