What Surrogates Understand (and Don't Understand) About Patients' Wishes After Engaging Advance Care Planning: A Qualitative Analysis.
David B Simmons, Benjamin H Levi, Michael J Green and 6 others
PMID 34164999WHAT IT FOUND
Family surrogates often understood patients' values and wishes after advance care planning, but still struggled to apply them when illness became complex or prognosis unclear.
They wanted clearer time limits for invasive treatments and physician guidance.
Key findings
01Spokespersons reported that patients often voiced clear wishes about treatments they would or would not want, but those wishes varied: many wanted to limit aggressive care, some wanted life-prolonging care, and others wanted time-limited or conditional care.
02Surrogates said they understood loved ones' wishes but applying them was difficult when prognosis was uncertain, medical situations were complex, or time limits such as long term were not defined.
03Surrogates sometimes doubted that stated wishes would match what patients wanted in a crisis, and they reported emotional barriers, including avoiding sensitive conversations and fearing guilt after not authorizing treatment.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This is a secondary analysis of a trial that tested two advance care planning interventions, and the analysis combined the study groups rather than comparing them. Only one of four broad categories, spokespersons' understanding of patients' wishes, is reported here. The sample was selected from 200 of 285 interviews, and spokespersons were primarily female, with mean age 55 years. The authors note many participants had high educational attainment and high rates of prior advance directive completion, so findings may not match families with different education or no prior directives. Spokespersons were interviewed about discussions after advance care planning, not at the time major medical decisions were being made.
Declared interests
The authors declared that two authors, Dr. Benjamin Levi and Dr. Michael Green, are co-creators of the Making Your Wishes Known decision aid, which was developed for research purposes and remains available free of charge. They also have financial interest in the success of a commercial version, My Living Voice, owned by Vital Decisions, through a consulting arrangement. Any research involving Making Your Wishes Known or My Living Voice is monitored by Penn State's Institutional Review Board and Conflict of Interest Review Committee.
The easy way to misread this
Do not read this as evidence that advance care planning reliably prepares surrogates to make end-of-life decisions. It is a qualitative secondary analysis of interviews about what surrogates understood, and the same surrogates said uncertainty, vague wishes, and emotion made applying those wishes difficult.