MONDAY, Feb. 28 (HealthDay News) -- 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 U.S. National Institutes of Health Clinical Center.
"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 March 1 issue of the
Annals of Internal Medicine.
Because most of the articles involved U.S. 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 percent 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 analyzed 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.
"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
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
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
"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."
Read more about medical surrogates at the
University of Illinois at Chicago College of
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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