Easing distress in caregivers of dying patients

Interventions can buffer caregivers of terminally ill patients from the significant stresses they face in providing care to a loved one, a new evidence review finds.

Lead review author Bridget Candy said that the caregiving of terminally ill patients, both with cancer and with other advanced diseases, is of considerable interest to Marie Curie Cancer Care — the main charity providing palliative care in the UK. Candy, a senior research associate at the Marie Curie group at University College Medical School in London, and her colleagues analyzed 11 randomized controlled trials comprising 1,836 participants who were informal caregivers.

“These trials varied in the types of interventions they provided, how they provided them and what they measured,” Candy said. “We found, however, that when we combined the eight clinical trials that directly supported caregivers, these interventions appeared to help buffer a caregiver or family member from extreme psychological distress.

“Caregivers who received the intervention had a marginally better quality of life and marginally increased ability to cope with their caring role,” she added. “In future work, it would be most useful to explore which components of interventions are key and which are not needed.”

According to the National Alliance for Caregiving, almost one of every three Americans spends an average of 20 hours a week providing care for a loved one, because of chronic illness or some other disability.

Regrettably, Candy could not comment on which interventions were most helpful. This is because the specific interventions in this review were variable, multi-component interventions, involving possible components such as education, emotional support, grief therapy and well-being advice. Nurses provided most of the interventions. None of the studies examined practical domestic support or financial support and few of the studies looked at the physical health of those who delivered care.

The review appears in the June issue of The Cochrane Library, a publication of The Cochrane Collaboration, an international organization that evaluates research in all aspects of health care. Systematic reviews draw evidence-based conclusions about medical practice after considering both the content and quality of existing trials on a topic.

With the exception of two clinical trials that date back to 1984 and 1992, all randomized controlled trials took place over the past six years in the UK, Australia or the United States.

While none of the trials purposely set out to look for negative outcomes, Candy and her colleagues learned of one study in which participants received family-focused grief therapy. A year after the intervention, one subgroup of families receiving this therapy, classed by the researchers as “hostile,” reported increased family conflicts.

Candy is uncertain why this might have happened, especially given that a one-year follow-up is a long time. “It’s something that needs to be further investigated, however,” she said.

According to Candy, this review has clear implications for physicians and other health care providers. “Our findings suggest that, at the very least, health care practitioners should inquire about the concerns of family and friends involved in caring for a loved one and should consider that they may benefit from additional support to help them cope with caring.”

Carolyn Messner – a clinical social worker and director of education and training at CancerCare, a national nonprofit organization that provides free professional support services for anyone affected by cancer – said that the review authors conducted rigorous research on studies aiming to assess the effects of practical and psychosocial interventions to assist caregivers to cope.

“As evidence-based researchers, they posed important questions for future research, including the need to evaluate practical support interventions, as well as those addressing health service use and psychological health,” Messner said.

Messner — who specializes in the psychosocial impact of cancer on patients, caregivers and families — said that the authors did not address the need to conduct longitudinal studies of caregivers to learn what interventions have the greatest efficacy over the long haul, which merits careful intervention studies.

“Most caregivers survive long after their loved one dies,” she said. “We want to tease out what is most helpful as interventions for these caregivers’ future coping and health status.”