End-of-Life Preferences: Do Doctors and Surrogates Discuss Them? (Research, Video 2:13)

You are critically ill and can no longer orchestrate your own care. Life-sustaining treatment decisions must be made. Fortunately, you have completed your advance directives and made your preferences and values known to a surrogate whom you have selected to represent you if these circumstances ever arose. What happens to you now will largely depend on decisions involving your surrogate and healthcare clinicians. Will they discuss and honor your wishes?

This is a question researchers have wondered about, too. To what extent are a patient’s wishes honored by doctors and surrogates? In research including 54 physicians and 159 surrogates for 71 patients, audio-recorded conferences in which life-sustaining treatment decisions for an incapacitated patient near the end of life were held. Conversations were coded to keep track of the number of times clinicians or surrogates discussed the patient's previously expressed treatment preferences or values. Treatment recommendations by clinicians that incorporated the patient's preferences or values were also coded. These were the results:

1)   In 30% of conferences, there was no discussion about the patient's previously expressed preferences or values.

2)   In 37%, clinicians and surrogates discussed both the patient's treatment preferences and values.

3)   In the remaining 33%, clinicians and surrogates discussed either the patient's treatment preferences or values, but not both.

4)   In more than 88% of conferences, there was no conversation about the patient's values regarding autonomy and independence, emotional well-being and relationships, physical function, cognitive function, or spirituality.

5)   On average, 3.8% of words spoken pertained to patient preferences or values.

Conclusions:

In roughly a third of ICU family conferences for patients at high risk of death, neither clinicians nor surrogates discussed patients' preferences or values about end-of-life decision making. In fewer than 12% of conferences did participants address values of high importance to most patients, such as cognitive and physical function.

This research is very disturbing and clearly shows the need for more and better interventions to ensure patients' values and preferences are addressed and integrated into end-of-life decisions. The importance of selecting a surrogate who will truly be your advocate can’t be emphasized enough.

In this video, Barbara Coombs Lee of the advocacy group Compassion & Choices explains how, in some states, the terminally ill can specify what kind of care they want through a Physician’s Order For Life Sustaining Treatment (POLST). However, regardless of what is written, what actually results from doctor-surrogate conferences must include patients’ wishes.

Becoming Dead Wrong at End of Life: What Can Happen When Wishes Go Unheard? (View this outstanding rap video.)

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

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