A diverse group of family caregivers in New York participating in discussion groups in 2015 reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member, according to a recent report.1
“The findings weren’t surprising, but they were profoundly disturbing. We really do need to pay attention here,” says Carol Levine, MA, the report’s co-author. Levine is director of the United Hospital Fund’s Families and Health Care Project in New York City.
One participant reported being “scared, really scared” when she had to clean the drains from her husband’s surgical wounds. Another participant reported that he had to learn how to take care of a central catheter inserted through the patient’s arm with only a “lady on the phone” to guide him.
Caregivers offered feedback on how video instruction and other training materials could help them perform tasks with less anxiety and stress. “They were expected to do very complicated things, but had not been considered as part of the clinical team,” says Levine.
Many caregivers expressed feeling isolated and completely overwhelmed, with nowhere to turn for help with complex tasks and everyday frustrations. “All the new buzzwords — ‘patient-centered care’ and ‘family-centered care’ — didn’t seem to apply here,” says Levine.
Most caregivers of critically ill patients reported high levels of depressive symptoms, which commonly persisted up to one year and did not decrease in some caregivers, found a recent study.2
“Institutions, healthcare providers, and payers have to reconsider what is being expected, and even required, of family members,” says Levine. The same is true for family caregivers themselves. “They have to be willing to say, ‘I can’t do this. I’m willing to do whatever I can, but I can’t do the whole job and I can’t do it alone,’” says Levine.
She sees greater awareness of the problem of caregiver distress. However, this hasn’t yet translated into widespread changes in discharge planning and follow-up.
One issue is that family caregivers have no legal standing unless they are designated healthcare proxies. “As a family caregiver, you are not a beneficiary, you are not a patient, you are not a client. There is no fiduciary or financial relationship with clinicians,” says Levine.
This doesn’t mean that clinicians have no ethical obligation to ensure family caregivers are prepared. “In order to see the patient as a full human being, you need to see the whole social context in which the person lives — and that includes caregivers,” says Levine.
If caregivers aren’t prepared, the patient’s health will inevitably suffer. Levine sees a clear ethical obligation on the provider’s part to be reasonably certain that the caregiver they’re sending out to care for the patient is competent or will be fully trained.
“If you’re really interested in outcomes for patients, is it right for you to send an untrained person home to do this job?” she asks.
Bioethicists who serve on hospital policy committees have a potential role to play. “They can ask for a review of practices related to family caregivers so that some crises can be averted and others resolved,” Levine suggests.
- Cameron JI, Chu LM, Matte A, et al. One-year outcomes in caregivers of critically ill patients. N Engl J Med 2016; 374:1831-1841.
- Levine C, Reinhard SC. “It all falls on me”: Family caregiver perspectives on medication management, wound care, and video instruction. Washington DC: AARP Public Policy Institute and the United Hospital Fund, September 2016.
- Carol Levine, MA, United Hospital Fund, New York City. Phone: (212) 494-0755. Fax: (212) 494-0800. Email: firstname.lastname@example.org.