Values Conflict at the End of Life

Paula Span

NY Times – September 3, 2013

http://newoldage.blogs.nytimes.com/2013/09/03/values-conflict-at-the-end-of-life/

Near Death Decisions

• In theory, or in a more perfect universe, our family members wouldn’t have a hard time deciding what to do when we were near death. However painful the task, the decisions would be clear: We would have prepared a written document, an advance directive, stating what we wanted doctors to do or not do, and our about-to-be survivors would follow our instructions.

• Most people haven’t taken that step, or if they have, their family members don’t know where the advance directives are, or their doctors don’t know that they exist or what’s in them. “It turns out they’re only part of the puzzle, for all kinds of reasons,” said Dr. Alexia Torke, an assistant professor of medicine at Indiana U. and a bioethics researcher at the Regenstrief Institute, specializing in health care research.

How Do Surrogates Decide?

• Hardly a hypothetical question: a British study published in The Lancet in 2004 found that about 40 percent of hospitalized patients lacked the mental capacity to make decisions because they were unconscious, delirious, demented or otherwise cognitively impaired.

• Dr. Torke and her colleagues talked to 35 surrogates who had made major decisions — about life-sustaining treatments, surgery or other procedures, or about where the patient would go when discharged — on behalf of incapacitated seniors admitted to two Indianapolis hospitals. These were not legally designated health care proxies, for the most part, because most patients had no advance directive and hadn’t chosen a decision maker. The surrogates were simply the family members — mostly daughters — to whom the doctors turned for guidance.

Small Study Talking to Surrogates

• Dr. Torke and her colleagues talked to 35 surrogates who had made major decisions — about life-sustaining treatments, surgery or other procedures, or about where the patient would go when discharged — on behalf of incapacitated seniors admitted to two Indianapolis hospitals. These were not legally designated health care proxies, for the most part, because most patients had no advance directive and hadn’t chosen a decision maker. The surrogates were simply the family members — mostly daughters — to whom the doctors turned for guidance.

• What these relatives disclosed, in face-to face interviews lasting an average of 40 minutes, mirrored what several other studies have found: Surrogates often base their judgments on considerations other than what the patients want.

• Dr. Torke and her colleagues talked to 35 surrogates who had made major decisions — about life-sustaining treatments, surgery or other procedures, or about where the patient would go when discharged — on behalf of incapacitated seniors admitted to two Indianapolis hospitals. These were not legally designated health care proxies, for the most part, because most patients had no advance directive and hadn’t chosen a decision maker. The surrogates were simply the family members — mostly daughters — to whom the doctors turned for guidance.

• What these relatives disclosed, in face-to face interviews lasting an average of 40 minutes, mirrored what several other studies have found: Surrogates often base their judgments on considerations other than what the patients want.

Pure Economic Models

• At time t, should you have a certain type of treatment?

• Model 1 – You do so if the present discounted value of the costs < PDV of the additional income generated. Type of model you would use for a cow or a donkey.

• Do we do this? Why or why not?

You would never spend money on a retired person in this kind of model.

Pure Economic Models – 2

• Model 2 – You do the treatment if the present discounted value of the person’s utility, given the treatment > PDV of the utility without the treatment.

• Surrogate is acting as the “perfect” agent for the patient.

Pure Economic Models – 3

• Model 3 – The utility function involves the utility of the family as well. If the family cannot bear to let the elderly person go, they gain utility by keeping him or her alive, no matter what. You may or may not agree with that logic, but it is logic.

Ability to make decision

• We’ve seen that it is very important at the end of life, where the patient cannot make an informed decision.

• One can also speak of this problem at the beginning of life.

• Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates’ desire for more information about patients’ preferences suggests a need for greater advance care planning.