"End of life choices can be even more complicated when an older person is hospitalized and can't always speak up for him or herself. Dr. Alexia Torke is associate director of IU Center for Aging Research. In a recent study, she found out that most often, family members end up acting as surrogate decision makers."
Dr. Torke: About maybe 25 percent of the time, the surrogate was making all of the decisions, so without any input from the patient. Maybe about 25 percent of the time, the patient was able to participate some of the time, or maybe was part of the conversation but wasn't able to fully understand. Those conversations can also be challenging too. It's hard to know how much of the patient's input reflects what they truly believe. When people are seriously ill, they often have impairment in their judgment and impairment in their memory, and on the one hand, as physicians and as family members, we want to include them. But we also want to make sure that those preferences that they are expressing are their true authentic preferences. And that can be complicated.
Lewis: That would be very complicated for the physician. I mean, the surrogate is trying to do their best job and the patient is trying to have their needs met and voice their opinions. And you are left trying to decide between the two? How do you decide?
Dr. Torke: Fortunately, the majority of the time, patients and their family members are on the same page. And then we just try to make sure that everyone's voice is heard. So, even if we are uncertain if the patient is able to fully recall and process all the information, we still want their voice at the table as often as possible. There are occasionally times when patients and families may disagree, and then it can be really complicated. Whenever it's possible, we take the time to really understand where everybody is coming from and try to reach a consensus. I think managing that communication between a patient, a family member and a clinician is something that physicians need to get greater skill at. It turns out that it's quiet common.
Lewis: Why study this? It seems like, in some ways, this has been going on since time began, families are making decisions about the health of their elders.
Dr. Torke: Our current model of decision-making in the hospital setting, and really in health care in general, is so focused on patient autonomy that we just assume that, in general, physicians are making decisions with a patient who can express their opinions, make their own decisions and give their own history. In fact, the whole structure of the hospital is set up for the patient who can give their own history and make their own decisions. So the medical team will come on rounds in the morning usually, will come into the room and talk to the patient and make a plan for the day and will inform the patient about what's going on. It turns out half the time that doesn't work. And yet there are no provisions in the hospital for routinely calling family members, for making sure that family members are at the bedside when rounds are going to happen. So our model of an autonomous patient who can always make their own decision just doesn't fit the reality of medicine, especially for older adults, when nearly half it turns out need help from their families.
Lewis: Well, especially since HIPAA, the patient privacy act, I think it would make it even more difficult.
Dr. Torke: HIPAA has added certain challenges. When a patient is incapacitated, physicians have the legal and ethical freedom to talk to a close family member as if they were the patient. And so they can share that information freely. I think there's been some misunderstanding on the part of doctors and other clinicians about what they can share. Certainly in our interviews, we've had surrogates recount how they had to struggle to get information from the clinicians. So I think while HIPAA has great value in terms of making us really emphasize patient privacy, it may have thrown up some barriers that were unintentional and that maybe shouldn't really be there as far as sharing information with families. So when patients can't make their own decisions, we should fully include the family member in the process and share all the information with them that they need to make a good decision.
Dr. Alexia Torke is the associate director of the IU Center for Aging Research at Indiana University School of Medicine. You can follow the IU School of Medicine on Twitter at @IUMedSchool.