Surrogates face an increased burden if they’re unaware of patients’ end-of-life wishes, according to a growing body of research. Ethicists can:
• encourage the clinical team to be sensitive to cultural and religious values;
• involve a chaplain in discussions if the surrogate’s religious values are a factor;
• emphasize the importance of patients conveying their values to surrogates and putting their wishes in writing.
Advance care planning increases confidence in surrogates’ ability to make consistent decisions, which may lighten the burden of substitute decision-making, found a recent study.1
“A few observational studies had found that confidence in surrogates’ ability to make decisions consistent with the patients’ wishes is often high, despite a low ability to actually do so,” says Gina Bravo, PhD, a professor of public health at Canada’s University of Sherbrooke.2,3
The researchers developed an advance care planning intervention to help surrogates better predict an older adult’s desire to undergo, or not undergo, various healthcare procedures. They then asked 235 older adults and surrogates how confident they were that future decisions would match the older adult’s wishes. Of the group that participated in an advance care planning intervention, confidence increased for both older adults and surrogates. For older adults, this continued months after the study. “Although prior studies suggested that confidence could be high despite low predictive ability, we did not expect confidence to remain high among older adults six months after the intervention had ended,” says Bravo.
Higher confidence in substitute decision-making is important because it may help surrogates focus on what the patient would truly want. “Our findings indicate that surrogates need further help in making decisions for an incapacitated relative,” adds Bravo.
In a subsequent study, the researchers found that the content of an advance directive may provide useful information regarding a person’s wishes for future healthcare that complements the guess of a surrogate.4 This suggests that advance care planning interventions also should include recording wishes in writing. “The more information a surrogate has about a relative’s wishes, the more he or she will be able to make appropriate, and often difficult, decisions on their relative’s behalf,” says Bravo.
More Psychological Stress
There is increasing evidence of the growing burden surrogate decision-makers experience if the patient left no information as to his or her end-of-life wishes.5,6,7 Celia B. Fisher, PhD, co-authored a study looking at surrogates who had to give permission to withdraw life-sustaining interventions with loved ones who had, or did not have, DNRs.8
“There was a lot more psychological stress in those in which there was no DNR,” says Fisher, Marie Ward Doty University chair in ethics and director of the Center for Ethics Education at Fordham University in Bronx, NY.
Surrogates clearly feel more comfortable carrying out someone’s wishes than trying to imagine what those wishes might be. “Religious attitudes, which physicians often ignore, are also a very important part of decision-making,” adds Fisher. This can cause stress for the surrogate. “As part of standard practice, team members can let surrogates know the availability of a chaplain,” says Fisher.
Some surrogates disagree with patients’ wishes for religious reasons. “A surrogate might not be comfortable being the one appointed to that role, and if so, one needs to know that right from the beginning,” says Fisher. A different surrogate may be needed if, for instance, the surrogate believes all decisions should be left in God’s hands, but this conflicts with the patient’s verbally expressed wishes.
Even the best advance care planning can’t cover every decision that the surrogate might need to make. “What’s very important is that these conversations are shared,” says Fisher. “It’s not just ‘if I develop this, I want this turned off,’ but that the values are discussed.”
1. Bravo G, Sene M, Arcand M, et al. Effects of advance care planning on confidence in surrogates’ ability to make healthcare decisions consistent with older adults’ wishes: Findings from a randomized controlled trial. Patient Educ Couns 2018 Feb 10. pii: S0738-3991(18)30052-1. doi: 10.1016/j.pec.2018.02.005. [Epub ahead of print]
2. Ditto PH, Danks JH, Smucker WD, et al. Advance directives as acts of communication: A randomized controlled trial. Arch Intern Med 2001; 161:421–430.
3. Barrio-Cantalejo IM, Molina-Ruiz A, Simon-Lorda P, et al. Advance directives and proxies’ predictions about patients’ treatment preferences. Nurs Ethics 2009; 16:93–109.
4. Bravo G, Sene M, Arcand M. Making medical decisions for an incompetent older adult when both a proxy and an advance directive are available: which is more likely to reflect the older adult’s preferences? J Med Ethics 09 March 2018. doi: 10.1136/medethics-2017-104203. [Epub ahead of print]
5. Hickman RL Jr, Pinto MD. Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill. J Clin Nurs 2014; 23(5-6):756-765.
6. Chiachiaro J, Buddadhumaruk P, Arnold RM, et al. Prior advance care planning is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac Soc 2015; 12(10):1528-1533.
7. Vig EK, Starks H, Taylor JS, et al. Surviving surrogate decision-making: What helps and hampers the experience of making medical decisions for others. J Gen Intern Med 2007; 22(9):1274–1279.
8. Sood JR, Fisher CB, Sulmasy D (2006). Religious coping and mental health outcomes in family members making DNR decisions. In R. L. Piedmont (Ed.) Research in the Social & Scientific Study of Religion, Volume 16, (pp. 221–243). Leiden, The Netherlands: Brill Academic Publishers.
• Gina Bravo, PhD, Professor, Department of Community Health Sciences, Faculty of Medicine and Health Sciences, University of Sherbrooke, Quebec, Canada. Phone: (819) 780-2220 ext. 45244. Email: email@example.com.
• Celia B. Fisher, PhD, Marie Ward Doty University Chair in Ethics, Director, Center for Ethics Education, Fordham University, Bronx, NY. Phone: (718) 817-0926. Email: firstname.lastname@example.org.