Aug 19 2008

Hoping for a Miracle

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Comments: 12

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.

12 responses so far

12 Responses to “Hoping for a Miracle”

  1. DevilsAdvocateon 19 Aug 2008 at 2:09 pm

    Many years ago I read an article about the now common practice of specialist courts: drug courts, juvenile courts, tax courts, etc., and the author of the article suggested the possibility of other specialist courts, among them a medical court to handle issues such as surviving family members who refuse to accept that a loved one is beyond reasonable care.

    Do medicla courts exist anywhere, or, if not, would a medical court be feasible to resolve these issues?

  2. pecon 19 Aug 2008 at 3:37 pm

    ” Fifi on 19 Aug 2008 at 11:51 am

    Thanks for the link Dr Atwood.
    And a general apology for addressing pec and her accusations/assumptions and speculating. It’s just a bit hard not to view someone as a specimen and want to poke them to see what they are when they’ve totally dominated the comments section with lies and slander and are such tenacious believers in and promoters of CAM on a science-based medicine blog.”

    I will probably get banned here also, but I just want to see if I can comment on the person who finally set me off. I always ignored her comments because they were always inane. But as you can see from the above quote, she was treating me as a ‘specimen” in an incredibly evil way, and I couldn’t help fighting back. It went on for months and I ignored her with all my strength.

    And I never promoted anything. I tried to show that at least some CAM evidence is scientific and of good quality. I tried to educate and get die-hard “skeptics” to open their minds a little.

  3. Groovydocon 19 Aug 2008 at 4:43 pm

    I have also wondered if a special health care court might not be helpful. Right now, as Dr. Novella touched on, a lot of these cases can be resolved with time, careful explanations, and appropriate support services.

    On the subject of miracles, this is a difficult area to address with many people. I try to remain scientifically oriented, present the facts, and if asked, relay that I’ve never witnessed any miracles. Surprises, yes, but that’s part of being human and working without perfect data.

    One tactic that I occasionally use, after gauging whether a person might respond in a hostile fashion, is to suggest that miracles do not require mechanical/outside support to occur, and that withdrawal of mechanical support should not obviate any looming miracles. Of course, I have to pick my words with care, and there are often in these cases an angry family member that no amount of words are going to sway.

  4. superdaveon 19 Aug 2008 at 5:33 pm

    Pec, I for one like you. Life would be boring if everyone agreed with each other. I also recognize there are pro cam science journal articles out there, even some in reputable journals. However, these articles cloud the big picture. When a methodology is truely legitimate and works, many scientists aroudn the world repoduce and expand upon the research. You begin to see many journal articles which contain experiemtns that all build on the basic paradigm shifting article. In 30 years since CAm really became public, it has failed to spawn the same reaction. If you want an example of this, think about statin drugs. One company developed the fisrt generation, now there are several companies selling statin based drugs. Another examle is the recent research that demonstredted reprogramming skin cells to form stem cells. Now there are many labs working on reporducing that experiment and taking it further. You can read about new results of this technique here
    in which scientists are using the technique to help treat patients with ALS.

    This was just a 7 month span. You just don’t see this kind of progress with CAM based techniques.

  5. superdaveon 19 Aug 2008 at 5:34 pm

    i guess my post is being moderated because it contains a link, but its a pretty cool story and might be something to talk about ton the podcast steve

  6. kvsherryon 19 Aug 2008 at 8:08 pm

    If you could please clarify, when you say “But some times emotions trump reason. These cases are always dramatic, and garner disproportionate attention, but they are in the minority”, are you suggesting that the case coming before national attention is normal, or are you saying in every day life.

    It has been my unfortunate experience working in ICUs for a few years that this is not the case.

    All too often, whether from the shock of having the family member suddenly and unexpectedly taken away (as in a devastating stroke), or from some deep religious convictions, families make the wrong decision and, despite the advice of the neurologist, insist on a loved one staying in the unit until they are stable enough get a trach and a peg, and then move out to the long term vent facility, never to regain consciousness again.

  7. DevilsAdvocateon 19 Aug 2008 at 8:12 pm

    Groovydoc, re miracles: “Of course, I have to pick my words with care, and there are often in these cases an angry family member that no amount of words are going to sway.”

    My care is limited to substance abusers, but they and their families also carry the occasional literalist wanting the treatment team to accomodate their religion and their belief in miracles, especially here in the rural south where the percentage of evangelistics is so much higher. Typical are requests, demands sometimes, that the set of other patients and staff all be required to pray with the family member patient during treatment events. Responding tactfully is indeed a tightrope walk. Sometimes I’ll ask if they’ve discussed things with their pastor, minister, etc. This often sends them off on a mission. Alas, sometimes they come back with the pastor, minister, etc., and my problem is doubled. Eventually I have to bottom line them about my responsibilities to the other patients and their families, and set more firmly the appropriate limits.

    This is where it’s been my experience too that there are some so rigid there is nothing to be said or done to appease them when they accuse me or staff of not ‘working towards a miracle’ or otherwise having offended them and their religious beliefs. I have no one-size-fits-all response and play each as it happens, but it typically involves a sit-down in my office where I explain how their intransigence on religion is jeopardizing the care of their family member patient and that of the other patients, that it will not be tolerated, and that their choice is comply or face denial to our grounds for the duration of treatment. Hoooo-boy.

    This sometimes leads to the patient leaving treatment at the direction of the offended family member(s), sometimes the patient thanks me (lol), and sometimes they comply, albeit with a permanent tight-lipped professional smile glued to the face.

    But, once I’ve explored ‘diplomacy’ and found the other party intractable, I’ve no choice but to invoke. Ultimately, I am not responsible for the results of someone else’s socio-cultural faith-based lunacy*, and all science-based treatment settings cannot be compatible with all religions, beliefs, creeds, etc.

    *The ‘lunacy’ being the literal expectation of a miracle or other divine intervention and their insistence I plan for it.

  8. Oracon 19 Aug 2008 at 8:41 pm

    I have also wondered if a special health care court might not be helpful. Right now, as Dr. Novella touched on, a lot of these cases can be resolved with time, careful explanations, and appropriate support services.

    There are actually committees that serve a similar purpose. Most hospitals have a bioethics committee, and it frequently falls on such committees to adjudicate when the family wants everything to be done and the doctors think that the situation is hopeless.

  9. Groovydocon 19 Aug 2008 at 10:49 pm

    Thx Orac, I’m well familiar with the ethics commitee, as I’m often the only physician in attendance at our small hospital’s regular committee meetings:) The ethics commitees are sometimes helpful, but really have no legal power (in my state anyway), hence my quoted comment on a more legally binding fallback option.

  10. weingon 20 Aug 2008 at 8:54 am

    I think this can only be resolved through legislation. If doctors determine that further treatment is futile, then the family should be given the choice of continuing treatment at their cost or pulling the plug. The taxpayer should not be shouldering this burden.

  11. Groovydocon 20 Aug 2008 at 10:45 am

    “I think this can only be resolved through legislation. If doctors determine that further treatment is futile, then the family should be given the choice of continuing treatment at their cost or pulling the plug. The taxpayer should not be shouldering this burden.”

    Good luck getting this legislation past the folks who were grandstanding to “save Terri Schiavo.”

  12. weingon 20 Aug 2008 at 12:46 pm

    I think health care costs will come to a head pretty soon. This is the rationing that needs to be done. Right now the only rationing I see is for preventable illnesses by insurers giving patients high copays for medications, colonoscopies, etc. This is totally topsy turvy.

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