Aug 19 2008

Hoping for a Miracle

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A recent study published in the Archives of Surgery combined a phone survey of random adults with a mail survey of doctors and nurses and looked at attitudes regarding death and dying from injuries. Here are the results summary from the abstract:

Most of the public and trauma professionals would prefer palliative care when doctors determine that aggressive critical care would not be beneficial in saving their lives. During resuscitation of an injured loved one, 51.9% of the public and 62.7% of the professionals would prefer to be in the emergency department treatment room. Most of the public believes that patients should have the right to demand care not recommended by their physicians. Most of both groups trust a doctor’s decision to withdraw treatment when futility is determined. More of the public (57.4%) than the professionals (19.5%) believe that divine intervention could save a person when physicians believe treatment is futile. Other findings suggest further important insights.

Surveys are always tricky to interpret because how the question is asked influences the answer. Also, answers may reflect hidden assumptions or concerns on the part of the respondent. Many surveys include mutually exclusive results – some individuals answering the questions had to give answers on some questions that directly contradicted each other. So clearly either some people did not understand the questions, or they were focusing on different implications of the different questions and did not recognize the contradiction.

In the survey above the media focused on one statistic – that 57.4% of the public believe that divine intervention can save a life even when medically futile. Some of the other results may be contradictory, however. For example – most of the public believe that palliative care is preferred if the case is futile, and most trust a doctor’s decision to withdraw futile care, but at the same time feel that such cases are not truly futile because a miracle can happen.

I think this apparent contradiction may be due to respondents interpreting the question about trusting doctors as having to do primarily with their attitude toward doctors. And then they interpreted the question about divine intervention as having to do with their faith in God. These beliefs and attitudes can be largely compartmentalized, rather than part of a coherent overall philosophy.

Another way to interpret these findings is that most people will make decisions rationally – preferring palliative care when death is unavoidable and trusting the judgment of their doctors to determine when care is medically futile, but at the same time hold out an emotional hope that a miracle will happen.

This latter interpretation is in line with my subjective experience as a physician. The majority of the time, even in the middle of emotionally devastating and cognitively difficult situations, patients and loved-ones will listen to the facts and make reasonable decisions. They will also reach out for emotional comfort and will often find it in their social support network and their religious faith or metaphysical world view.

They may also indulge in some harmless rationalizations. Sublimation-altruism is a common one. If, for example, a young person is killed in a motor vehicle accident, the parents may take comfort from the fact that his or her organs were donated to help save other people.

These are all healthy adaptive responses to emotionally wrenching situations. They are part of human resilience.

But some times emotions trump reason. These cases are always dramatic, and garner disproportionate attention, but they are in the minority. The survey result that may be most interesting and important is that most of the public believe that patients should have the right to demand medically futile care. This typically means that even after all hope is lost one or more family members still want to push on with full care, even when the doctors believe treatment is futile. Sometimes this stems from a distrust of doctors or the system, sometimes from the unwillingness to let go of hope, no matter how irrational, and still other times has to do with the complexities of their relationship with the dying loved-one.

On an individual level when health care professionals encounter this situation it can usually be dealt with simply by giving time to the loved-ones to come to grips with the situation, to more fully understand the medical facts, and to reach out to the support network for comfort.

Rarely, the situation comes to an impasse where one or more family members refuse to accept a medically futile situation even over a long period of time. We dread these situations because there is no effective system for dealing with it. If multiple meetings and negotiations cannot resolve the impasse, the only recourse is to take the situation before a judge. But doctors and hospitals are often reluctant to do so.

Such situations are especially difficult when the patient is not brain dead or in such a deep coma that they are likely not experiencing anything. Some patients may not be able to communicate or understand their situation and so cannot make their own health care decisions, but have enough consciousness that they could be in pain or otherwise suffering. In such situations the dilemma for physicians is much more acute because their patient may be needlessly suffering.

As difficult as these rare cases can be on the individual level, the situation is made much more complex when we consider the implications for society. There is general agreement that we are having a health care crisis primarily due to the fact that we cannot afford to deliver the health care that we have the technology to provide. No one wants to be the one to inject economics into a painful life-and-death decision, but as a society we simply cannot afford to allow individuals to demand millions of dollars of medically futile care. And yet, according to this survey, the public thinks that they should be able to do just that.

Like it or not, we are rationing care. This means that as a society we may have to seriously consider our health care priorities, and that may mean finding ways to avoid medically futile care. This is not something that can be solved on the individual level (perhaps mitigated a bit, but not significantly improved). In situations where there is a disconnect between what a family demands and what physicians think is reasonable, injecting the bigger issue of health care costs to society is counterproductive. Such things have to be decided at a higher level and then imposed on the system.

This latest survey is interesting and raises many important issues. I do not find any of the results surprising, however. They are roughly in line with my subjective experience.

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