EXECUTIVE SUMMARY

Surrogate decision-makers may value what they think is best for the patient more than they value patient preferences, found a recent study. Some reasons for this include the following:

• Surrogates may need education on their role in decision-making.

• Surrogates may be unwilling to allow the patient a natural death.

• Some surrogates simply assume their wishes are the same as the patient’s.


Surrogate decision-makers are valuing what they think is best for the patient more than they value patient preferences in the process of making medical decisions for them, found a recent study.1

“This was the opposite of what we expected to find. It controverts the currently accepted ethical standard of surrogate decision-making,” says Rohit Devnani, MD, the study’s lead author. Devnani is a physician in the department of pulmonary and critical care medicine at Community Health Network in Indianapolis.

As a resident, Devnani became interested in the ethics of surrogate decision-making. The current ethical norm is based on the principle of “substituted judgment” — making decisions that reflect what patients would have decided.

“I wondered if surrogate decision-makers are making decisions according to substituted judgment, or if there are other driving forces that play a more prominent role in their decision-making,” says Devnani.

The discrepancy between ethical theory and reality raised another ethical question. “It provides an opportunity to examine whether our current ethical standard of surrogate decision-making may be revised to incorporate making decisions according to the best interest principle over substituted judgment in a way that is ethically permissible,” says Devnani.

Surrogates don’t necessarily consciously intend to impose their preferences on the patient. “The principal reason is surrogates simply assume their wishes are the same as the patient’s,” says Paul Hofmann, DrPH, FACHE, president of Hofmann Healthcare Group, a Moraga, CA-based consulting firm specializing in healthcare ethics, and a former hospital CEO.

Reluctant to ‘Let Go’

However, some surrogates clearly want to trump the patient’s preferences. This typically occurs when the patient wants treatment withheld or withdrawn. “The surrogates are reluctant or unwilling to ‘let go’ and allow the patient to have a natural death due to injury or disease,” says Hofmann. Self-serving intentions, though rarer, sometimes come into play. “Unfortunately, on some occasions, the surrogates could have a financial incentive to delay a patient’s death,” notes Hofmann. He says the following four questions should be raised:

1. Does the patient still have decision-making capacity, and, if so, what is his or her preference?

2. In the absence of decision-making capacity, is there a valid advance directive available?

3. If there is a negative response to the first two questions, are there one or more credible surrogates who can provide a compelling statement regarding what the patient would want based on previous conversations?

4. If the answer to the last question is no, ask the surrogates the following question: “If your mother/father/sister/brother/other relative/friend could wake up and cogently state his or her preference under these circumstances, what would you hear?”

“Too many physicians begin a family conference by describing the patient’s condition and prognosis, listing the available options and asking for the family or surrogate decision-maker to indicate a preference,” says Hofmann. Instead, a physician can first ask what the participants understand about the patient’s condition and prognosis.

“We know the continuum of understanding is highly variable from one family to another,” says Hofmann. Then, physicians can ask what the patient would choose if he or she could communicate effectively. “It could be continued aggressive therapy, or a shift to pain and symptom management,” says Hofmann.

Is the clinical team convinced a surrogate isn’t acting in the patient’s best interest? Blair Henry, BSc, MTS, a senior ethicist at Sunnybrook Health Sciences Centre and assistant professor at the University of Toronto in Ontario, says it is important to assess the following:

• Why the clinical team disagrees with the surrogate.

“Are we evaluating the quality of choice they are making, or the process they are using to base the choice on?” asks Henry.

• Collateral information and other sources.

“If the patient has been followed by a specialist affiliated with your center, be sure to have them involved in the goals of care conversation,” says Henry. For instance, an oncologist can be invited to a meeting in the ICU if aggressive therapy is being discussed. He or she may be able to share comments made by the patient in the past that could be helpful in the current context.

• Unspoken factors that might be at play.

For example, some surrogates push for aggressive care because they don’t want to be responsible for the patient’s death.

• What the surrogate understands about his or her role.

Surrogates may have no idea as to the rules they need to follow as a decision-maker. “When left to their own devices, surrogates tend to focus on what they perceive to be in the patient’s well-being, and not the patient’s preference,” says Henry.

REFERENCE

1. Devnani R, Slaven JE, Bosslet , et al. How surrogates decide: A secondary data analysis of decision-making principles used by the surrogates of hospitalized older adults. J Gen Intern Med. 2017 Aug 24. doi: 10.1007/s11606-017-4158-z. [Epub ahead of print]

SOURCES

• Rohit Devnani, MD, Pulmonary & Critical Care Medicine, Community Health Network, Indianapolis. Phone: (317) 201-6704. Email: devnanir@gmail.com.

• Blair Henry, BSc, MTS, Department of Family and Community Medicine, University of Toronto, Ontario, Canada. Phone: (416) 480-6100 ext. 7178. Email: blair.henry@sunnybrook.ca.

• Paul B. Hofmann, DrPH, FACHE, President, Hofmann Healthcare Group, Moraga, CA. Phone: (925) 247-9700. Email: hofmann@hofmannhealth.com.