Surrogates suffer in their role as patients’ decision-makers
“A Systematic review: the effect on surrogates of making treatment decisions for others“– published in the Annals of Internal Medicine – was the topic of discussion on Pallimed: A Hospice & Palliative Medicine Blog.1
Substitute decision-makers, described as “a solution to a problem created solely by advancing medical technology,” often help make treatment decisions for patients who cannot do so themselves. There is an effect on the surrogate that has not been assessed.
Surrogates are mostly family members
The authors researched 40 studies of 2,854 surrogates and found that in more than 50% of cases, the surrogates were members of the patient’s family. In one study, the surrogates, who were relatives, felt guilt about their treatment decisions.
- At least one-third of the surrogates felt “a negative emotional burden” such as anxiety or stress from the process
- Symptoms of posttraumatic stress disorder among family members who had participated in making decisions were also present in several of the reviewed studies.
Study authors wrote:, “Our evaluation of more than 2,800 surrogates indicates that this practice places emotional stress and burden on at least one-third of surrogates, which is often substantial and lasts months or, in some cases, years.”2
A group in Munich, Germany, also looked at the role that family members play in making decisions about life-prolonging treatment in seriously ill patients. The researchers followed 70 patients with terminal cancer in whom physicians were considering whether to limit life-prolonging treatment.
They recorded the patients‘ wishes about end-of-life care, the roles of their family members, and how both groups felt about limiting treatment.
- Although the family members were present during their relative’s hospitalization, only 32% of them were involved in decisions to limit treatment.
- One-third of the relatives “Acted against the known or presumed wishes of patients”
When patients did discuss their treatment preferences, their families were in agreement and supportive of their decisions.
In six patients who were unable to communicate:
- Clinicians thought relatives did not represent authentic patient wishes.
- Five patients did not allow their relatives to play an active role in decision making.
The conclusion was that serious health care decisions should involve concerned relatives.
What do people want, when they choose a decision-maker?
In another investigation
, researchers in England constructed an empirical exploration of
“What people want in a decision-maker whom they themselves select
.” For the study
, 30 undergraduate students were presented with a hypothetical scenario proposing that they were expected to lose mental capacity in the future and asking that they consider whom they would choose as surrogate
Although the majority of the subjects said they would choose someone who was caring and competent, only a few of them stressed how important it was for the surrogate to know their preferences with regard to making important treatment decisions.
Choosing a health care surrogate is not an easy decision, and it can certainly be stressful for the patient and surrogate alike.Despite these challenges, the consensus of the studies reviewed was that, although it is difficult to make end-of-life decisions for someone else, most surrogates find their roles satisfying.
The authors suggest that strategies be developed to ensure that treatment decision making is in the best interests of both the patient and the family.