Presented by Malcolm Fisher
Objectives.~To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.
Design.~A 2-year prospective observational study (phase 1) with 4301 patients followed by a 2-year controlled clinical trial (phase 11) with 4804 patients and their physicians randomized by specialty group to the intervention group (n=2652) or control group (n=2152).
Setting.~Five teaching hospitals in the United States.
Patients.~A total of 9105 adults hospitalized with one or more of nine life-threatening diagnoses; an overall 6-month mortality rate of 47%.
Intervention.~Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability a t2 months. A specially trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication.
Results.~The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within 2 days of death; 38% of patients who died spent at least 10 days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family nembers reported moderate to severe pain at least half the time. During the phase 11 intentention, patients expenenced no improvement in patient-physician communication (eg, 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [CI], 0.90 to 1 .15), physicians' knowledge of their patients' preferences not to be resuscitated (adjusted ratio, 1.22; 95% Cl, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% Cl, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1 . 15; 95% Cl, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% Cl, 0.99 to 1.12).
Conclusions.~The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase 11 intewention failed to improve care or patient outcomes. Enhancing opportunities for rnore patient-physician communication, although advocated as the major method for improving patient outcomes. may be inadequate to change established practices. To improve the expenence of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measures may be needed.
Coment: Rolando Berger MD:
Malcom's review and comments on the recent JAMA paper about the care of terminally ill patients (SUPPORT group study) were quite thoughtful. I would like to offer my 2 cents worth on four main points:
It is (to me) quite intriguing that we see no problem in asking a group of medically unqualified and emotionally distraught individuals to carry out what, under the best of circumstances, is an extremely difficult and complex task of assessment and decision making. I am afraid that in our society dying has really become a ritual..... and those who participate in a ritual often become capable of combining an unrealistic expectation with an undesirable reality (Max Gluckman: "Politics, Laws, and Rituals in Tribal Society". Aldine, 1965 --- Victor Turner: The Ritual Process: Structure and Anti-Structure. Penguin Books, England, 1969).
In a nutshell, (I can't possibly discuss all the details here), the approach we use is as follows:
If a family strongly opposes life-support withdrawal, we do not "press" the issue nor do we try to strong-arm them into coming around to see things our way. We simply respect their wishes and continue therapy as before. This however, has been an exceedingly rare occurrence!
This is only one way to deal with these situations, and certainly not "the" only or necessarily best way. However, I am not at all sure that a need for "forceful measures" actually exists (the JAMA paper's words). Physician education, and implementation of workable efficient mechanisms (policies) to provide high-quality compassionate care should suffice. In my opinion, conviction, not coercion, is the best way to deal with such an emotionally charged issue.
Roger McSharry:
I agree that in the USA, (mainly but not exclusively), the tendency appears to be to defer decisions to the patient's family, rather than the physicians making the decision and asking for agreement or concurrance. I do not believe that the often voiced argument that doing otherwise is patronizing and/or intrinsically wrong ("assumption" of an empowerement not freely conveyed or delegated) is valid... or ever was. In my view, this is another example of the ritualistic "medicalization of life" that has occurred in Western countries, but probably in the USA most of all (Ivan Illitch: "Medical Nemesis: The Expropriation of Health". Calder & Boyars Ltd., England, 1975).
It is (to me) quite intriguing that we see no problem in asking a group of medically unqualified and emotionally distraught individuals to carry out what, under the best of circumstances, is an extremely difficult and complex task of assessment and decision making. I am afraid that in our society dying has really become a ritual..... and those who participate in a ritual often become capable of combining an unrealistic expectation with an undesirable reality
I enjoyed your post, and applaud the study (practically, the limiting of discussions with family to discrete periods seems the most problematic aspect of the plan, although if it can be managed would reduce confusion.)
I do take exception to the statements above regarding medicalization of life/expropriation of health:
I think Illich's stated goals were to get away from oppression by medical "experts" who are granted authority to pass judgment on the health of others. The medicalization of life is founded on the unwarranted authority of medical providers. I believe the tendency in the US to allow the relatively unsophisticated and frequently unrealistic families of critically ill persons to make major decisions regarding limiting care or withdrawing support is a fully in line with Illich's philosophy. In "Medical Nemesis", Illich states, "The crisis in medicine [caused by uncontrolled medicalization of life] could allow the layman effectively to reclaim his own control over medical perception, classification, and decision-making." (in the Introduction of the book).
In truth, we let families (and patients) have precious little influence over management of the patient in general...the exception is the patient in whom we have reason to believe all hope is lost. THIS is the patient where our altruism appears; I think we need the OK of the family to stop care, as we never (or rarely) ask permission to begin care...that's simply not in their province...we're the experts. (I exaggerate, but only slightly.)
After dominating health affairs of individuals completely for an entire lifetime, creating a great dependence/inferiority in the laymen, we then have the nerve to ask them to stand up and be responsible for important decisions at the end of life. It's no wonder so many families seem ill-prepared for this task. Indeed WE are the deluded persons, creating a trying situation for families (we are, after all, not REALLY suggesting they have a choice, since we only ask them to "decide" what to do when the decision in our judgment is to stop...) in which a vote to press on is viewed as irrational due to emotion and lack of medical sophistication.
The solution (for us) is to educate (instill our world view gradually) the decision-makers, so that our decisions and the family's become indistinguishable from ours made in isolation. This (per Illich) is still the violent coercion he deplores, as long as the family doesn't have a REAL option for their own world view, no matter how irrational. I suggest you will view the reduction in "futile" ICU days, etc, as a success in your study; Illich might take exception, as he is measuring other outcomes. I think he would allow your attempts to improve care of the critically ill are a success only insofar as the education and freedom of decision-making of the families is enhanced and the attitudes of the medical providers are changed to truly allow families or individuals their say ( even if it wasn't during the authorized times for discussion!)
Dick Burrows:
Malcom's review and comments on the recent JAMA paper about the care of terminally ill patients (SUPPORT group study) were quite thoughtful. Didn't think he said much about it really.
Finished off with Dunstan's quote which really encapsulates the whole issue but speaks of the issue in indefinable terms of quality. Such definitions are not possible in a scientific paper which attempts to apply statistical methods to people's wants and needs. But we still try.
In this regard the SUPPORT group did little more than spent an awful lot of time documenting the fact that they never learnt anything from the first experience. All the time spent collecting stats would surely have been better spent speaking to the patients and their relatives.
The problem with ethical discussions is that people are always divided into two groups: the righteous and the unrighteous......... and the righteous do the dividing!
Grub first then ethics!
Also worth reading: Knaus et al. The SUPPORT Prognostic Model, Annals Internal Medicine 1995 122 191- 203.
Presented by Malcolm Fisher (I think)
The editorial looks at the reasons for the failure. Lo notes that -
The temptation to the outsider is to say in a self satisfied manner : "Only in America" . But the greyhaired physician knows never to criticise someone else's back yard until a careful inspection of your own is complete. But this paper does suggest that the dearest health care system in the world is not giving dollar value to this group of patients. One would like to be able to say it is an inevitable consequence of systems that value price more than quality or compassion. But it has probably been like this for years.
The issues of not regarding the pain or the of provided information are the most difficult to answer. There are two possible reasons only, a poor communication system or education process regarding that communication or an inexcusable response by the physicians. Or a combination. Being a physician I find it hard to accept that the physicians were not keen to use the resource. But the unacceptable incidence of bad pain control and lack of discussion with patients are bad medicine irrespective of whether or not a trial was being performed.
The issues regarding the non use of the prognostic data I can understand more easily. The magic accuracy of death prediction figure of 80% returns. Same as Max Harry's toe temperature of years ago. If life is precious 20% is worth a fly. And the human condition and medicine are about beating those odds. The secondary question is how to pick who is in the 20%. When the added factors that make us comfortable with putting the patient in that group become obvious with time we write the DNR order ,discuss, and withdraw. Consequently it does not surprise me that the DNR order is written within two days of death.It is hard to deal with other people's lives and to explain fairly to them what the odds mean. People want to say,and ask the question,"Is there no hope?" It is nice to be able to answer that honestly with a "Yes" but short of brain death it is a rare response to be able to give.
We have some differences of opinion with relative requests down under. We tend to take a role our US colleagues sometimes find patronizing, believing that the burden of decisions regarding continuing care are greater for those who love the patient than doctors, and that the data regarding surrogate decisions suggest such decisions are of dubious validity. We tend more to present patients and families with a decision and seek acquiesence rather that ask them to make one.
Lo's editorial suggests the answers may include smaller, more specific, study targets; more consideration of patient requests; and constraints and incentives to reduce inappropriate interventions. The last suggestion is sinister and grist for the mill of those who wish to control us more.All sorts of bandwaggoners are going to get their rocks off on this one. And we are left with the inevitable choice. Do it better ourselves or be told how to do it by regulators.
It may be the usual bias but I feel pretty comfortable about my own unit in this area. Close to 90% of our patients die when we are no longer trying to fix them. Their demise, I believe, is pain free. We are learning to do this better because we focussed on it when we were doing it poorly.Ownership of efforts to improve mean in house efforts are more likely to be successful than someone else's study. But there is no doubt in my mind that people who call themselves "Intensivist " need to be the leaders in doing this sort of thing better. "Intensivists" as a group seem to me to question their interventions more than most.
The message for us? GR Dunstan, the Emeritis Professor of Moral and Social Philosophy at the University of London, said it ages ago. "The success of intensive care is not to be measured only by the statistics of survival, as though each death were a medical failure. It is to be measured by the quality of lives preserved or restored, the quality of the dying of those in whose interest it is to die and by the quality of relationships involved in each death".