Being a surrogate decisionmaker in the intensive care unit (ICU) can have long-term psychological consequences, including post-traumatic stress.1,2
“These individuals are charged with making life-and-death decisions on behalf of someone who may be beloved and central in their world, grieving because of the prospect of losing them — all the while contending with the unpredictable circumstances in the ICU. This can be a recipe for regret, guilt, and traumatic stress responses, among other poor psychological outcomes,” says Wendy Lichtenthal, PhD, FT, FAPOS, founding director of the Center for the Advancement of Bereavement Care at Sylvester Comprehensive Cancer Center.
To support surrogates, Lichtenthal and colleagues created a brief intervention called Enhancing and Mobilizing the Potential for Wellness and Resilience (EMPOWER). The approach uses evidence-based mental health interventions to meet the needs of individuals who are unlikely to have time to engage in regular psychotherapy during an acutely stressful situation. Clinicians begin by identifying what the surrogate is struggling with the most. For some, it is the prospect of losing someone they care about deeply. Others have difficulty coping with other stressors in their lives. Next, surrogates are taught breathing, grounding, and mindfulness exercises to reduce their stress response. “We explain that these same tools can be used when communicating with the medical team or to help them tolerate difficult feelings,” says Lichtenthal. Finally, the surrogates engage in a “coping rehearsal.” This gives the surrogates an opportunity to think through how they would make decisions aligned with the patient’s values, or how they would cope with other stressors. “The intervention gives space for surrogates to reflect on their own personal values as well as the patient’s values. An ethical challenge is that these are not always one and the same,” adds Lichtenthal.
The researchers conducted a study to evaluate how feasible it was for surrogates to complete the intervention, how acceptable they found it, and whether it showed any promise in addressing the known struggles surrogates face.3
Sixty surrogates who reported an emotionally close relationship with the patient and/or significant anxiety, were randomized into two groups. One-half of the surrogates received the EMPOWER intervention and half received enhanced usual care. Three months post-intervention, researchers surveyed both groups. Surrogates in the EMPOWER group reported less grief intensity and less post-traumatic stress and depression. The group also was more satisfied overall with the care provided.
“The intervention empowers surrogates with tools to cope with and tolerate their distress rather than try to get rid of it,” observes Lichtenthal.
For clinicians, it is important to remember that the surrogate’s ability to take in information can be compromised. This is true even for clinicians who are excellent communicators. “In the surrogate’s state of stress, they may not have the capacity to process what they are being told: Think of a deer in headlights,” says Lichtenthal. “The ethical responsibility may therefore be to attend to the surrogate’s psychological needs during these times.”
Surrogates may feel pressured to make certain decisions or grapple with uncertainty over what the patient would want. Surrogates may feel conflicted in not wanting the patient to suffer, yet also wanting to do everything possible to extend their life. The study’s findings suggest that clinicians can alleviate these burdens with a fairly simple intervention. “It would be wonderful to have evidence-based psychological care of surrogate decision-makers as the standard of comprehensive care in the ICU, wherever possible,” concludes Lichtenthal.
Recognizing that family surrogates are not only acutely upset but also are confused — in part because of their strong emotions, is “a novel insight into the challenges of critical care,” according to Holly Prigerson, PhD, one of the creators of the EMPOWER intervention and director of the Cornell Center for Research on End-of-Life Care. In Prigerson’s view, the pertinent question is: How can someone be prepared for making life-and-death decisions for their loved one when they are in a state of shock and disbelief? “EMPOWER addresses the need to attend to the surrogate’s emotions -- to empower them to confront the realities of the patient’s situation, and thereby make better decisions on the patient’s behalf,” says Prigerson.
REFERENCES
- Wendlandt B, Ceppe A, Gaynes BN, et al. Posttraumatic stress disorder symptom clusters in surrogate decision makers of patients experiencing chronic critical illness. Crit Care Explor 2022;4:e0647.
- Anderson WG, Arnold RM, Angus DC, Bryce CL. Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. J Gen Intern Med 2008;23:1871-1876.
- Lichtenthal WG, Lief L, Rogers M, et al. EMPOWER: A multi-site pilot trial to reduce distress in surrogate decision-makers in the ICU. J Pain Symptom Manage 2024; Mar 11. doi: 10.1016/j.jpainsymman.2024.03.002. [Online ahead of print].
Being a surrogate decisionmaker in the intensive care unit (ICU) can have long-term psychological consequences, including post-traumatic stress.
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