Advanced Care Planning: Does 'negative' information have an adverse effect on the patient?

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By Apar K. Ganti, M.D. Advance care planning (ACP) represents a way for patients to put down their wishes regarding the kind of care they would like to receive in the event they are unable to make their own decisions due to illness. However, current estimates suggest that less than 10 percent of adults in the United States have engaged in advance care planning. One of the major reasons that patients and physicians are unlikely to initiate discussions regarding this issue is that it inevitably raises the issue of death and dying. It has also been anecdotally believed that discussion of "negative" information may have an adverse effect on the patient, who, as in the setting of cancer care, comes to the doctor hoping for cure. We conducted a study looking at the association between having ACP and treatment outcomes following bone marrow transplantation in patients with different cancers of the blood, including leukemia, lymphoma and multiple myeloma. The intent of the study was to show to both physicians and patients alike that having ACP did not impact the outcome of transplantation, and, therefore, use this evidence to convince patients and physicians to engage in the discussion about ACP. Three hundred and forty-three patients who had undergone bone marrow transplantation at the University of Nebraska Medical Center in Omaha were studied. Only about half of these patients had engaged in ACP prior to the transplant. Much to our surprise, we found that there was indeed a difference. Patients who had ACP did better after the transplantation. Patients who did not have ACP were almost three times more likely to die after the transplantation as compared to those who did. Although these results are striking and suggest that if you have ACP, you will do better, we believe this is not the case. The truth is we need to determine the factors that predict favorable outcomes in a cause-and-effect fashion, which entails evaluating the issue in a much more elaborate study design that controls for many extraneous variables. But if this association were true, one may ask what makes someone with ACP do better? It is entirely possible that patients who participate in ACP approach the whole issue of their health differently compared to those who do not. What are the motivations and psychological profile of patients who take time to make a list of their wishes in the event they become incapacitated? There are multiple factors in this relationship that we do not know, and these factors may actually be responsible for our findings. However, our study demonstrated that the patients least likely to engage in ACP are the ones most likely to do poorly and, hence, likely to need advance care planning. Our study was conducted in patients with blood cancers who were undergoing bone marrow transplantation. Despite this, we believe that our results can be generalized in other disease settings. Patients undergoing major surgery; patients with chronic incurable conditions like diabetes and kidney failure; or even individuals without any medical problems should be actively talking about ACP, so that their loved ones will know their wishes and make decisions fully based on them. It is important to talk about these issues before a crisis happens, because usually there is no warning. Most families wish they had talked about care at the end of life while the patient was competent to talk about it and make the difficult decisions. The biggest issues that I have seen are in the terminal stage of cancer. Some family members don’t want to let go, and others don’t want to see the patient suffer, so it becomes an emotional tug of war between the two. Both sides want the best for the patient, but yet it appears they are diametrically opposite in their thinking. In these situations, ACP could have prevented much of this emotional distress. Many hospitals provide free ACP information for patients who are admitted to the hospital. Attorneys also can provide a variety of services. More information about ACP can be found at www.caringinfo.org/AdvanceDirectives. A follow-up study is being planned to try to better identify the factors that lead to participation in ACP and also to develop ways to improve engagement in ACP.

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