The stress of making treatment decisions for a seriously ill loved one inflicts damaging emotional effects on at least one-third of these medical surrogates, a new study suggests.
Researchers examining 40 published articles with data on more than 2,800 surrogates - more than half of whom were family members of incapacitated patients - found that the negative psychological impact was often significant and long-lasting.
The medical surrogates were interviewed several months to years after making treatment choices, most of which dictated end-of-life care. Those whose decisions carried out prior directions from the patient fared much better emotionally than those working without advance directives, who suffered guilt and doubt over the decisions they had made.
"One of the strongest predictors of the impact on the family is if they know what the patients want," said lead study author David Wendler, head of the Unit on Vulnerable Populations at the US National Institutes of Health Clinical Center.
Psychological burden on carers
"If they know the patient's wishes, they feel as if they just stood up for the patient and they're just channeling the patient's preferences," Wendler said. "If they don't know, they feel stuck, like they're going to have to make this decision for someone else."
The study is published in the journal Annals of Internal Medicine. Because most of the articles involved US surrogates - many of them white, educated women - the authors can't be sure their findings would apply to other groups.
Still, only 20 to 25% of adults have completed advance directives or living wills, documents stating the type and aggressiveness of care they would prefer if they become incapacitated by injury or illness and cannot communicate their wishes, Wendler said.
The study analysed 29 articles using qualitative data, which suggested that many or most surrogates experienced a psychological burden that typically lasted months or years. The 11 articles using quantitative data showed that at least one-third of surrogates suffered an emotional burden from their role.
However, nine of the 40 articles reported beneficial effects on surrogates, the most common being a feeling of satisfaction from supporting the patient.
No preparation for carers
"The real problem is that many of these children or spouses have had no preparation as to how to take over this extraordinary role at a time when they themselves are vulnerable," said Dr Gisele Wolf-Klein, director of geriatric education for the North Shore-LIJ Health System in New Hyde Park, N.Y.
"The stress on the caregiver becomes absolutely phenomenal and often there's major tension between family members," Wolf-Klein added. "These are extraordinarily difficult circumstances."
Ironically, Wendler and Wolf-Klein noted, most patients wish to not become a burden to their loved ones, but that is exactly what happens when people don't discuss or record their medical preferences beforehand.
Also, the turmoil of decision-making can make it difficult for surrogates to comprehend complex information needed to make critical choices, which can involve opting to initiate, withhold, continue or withdraw life-sustaining treatment, according to the study.
Wendler and Wolf-Klein strongly advise creating advance directives to offset the emotional impact on loved ones of carrying out treatment plans.
"All of us should certainly share our wishes . . . we need to have this spelled out very clearly," Wolf-Klein said. "What's terribly important is just to have some form of written documentation of what your wishes are."
Wendler suggested that casual conversations about treatment preferences - in response to a news story, for example - can help family members communicate what they want if the unthinkable happens.
"I think these conversations become difficult when they're personalized," Wendler said. "If it's triggered independently . . . it can ease people's way into it. Having these conversations can be a way to protect their loved ones."
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