Not once in the years I cared for my mother did any of her physicians ask me how I was doing. When was the last time I saw my own physician? Was I eating properly? Sleeping enough? Depressed?
What did I do for fun?
Frankly, I didn’t notice their apparent lack of concern, nor had I considered it since — until hearing a recent talk by Dr. Ronald D. Adelman, the co-chief of geriatrics and palliative medicine at Weill Cornell Medical College in New York City.
The subject was caregiver burden and how physicians ought to be attending to the “invisible patient,” the one supporting an elderly family member with dementia or a heart condition or diabetes — or all of the above. Given that there are currently 43.5 million people providing this kind of support to adults ages 50 and older, and that without them the long-term care system would collapse, you’d think the proposition that somebody ought to be paying attention to them would be a no-brainer.
Sad to say, physicians often look right past caregivers. Earlier this year, Dr. Adelman published an article in JAMA detailing the problem, along with recommendations for addressing the burdens of this group.
Among the risk factors for caregiver burden that should “trigger assessment,” according to Dr. Adelman, are these:
- Being a woman.
- The number of hours of care provided.
- The complexity of medical tasks, like dealing with wounds, catheter bags and complex medication regimes.
- Transitions from one kind and location of care to another, like from home to hospital, to rehab, to skilled nursing care or to hospice.
- Financial stress.
- Cognitive impairment in the patient.
- A less educated caregiver.
- A caregiver who lives with the patient.
- A lack of choice in assuming the caregiving role.
The last two, Dr. Adelman noted, are usually in evidence when one spouse must take responsibility for the other despite her own vulnerabilities. In the JAMA article, Dr. Adelman cited the case of an 84-year-old woman caring for her 86-year-old husband who shot herself three times in an unsuccessful suicide attempt.
The most telling part of the incident was not the suicide attempt, Dr. Adelman said, but the woman’s expressed relief at not being responsible for her husband while she was in the hospital. He had refused nonfamily home care, and two nearby daughters either failed to see what was going on or were steered away by their mother, because she didn’t want to be a burden to them.
The woman’s caregiver burden would likely have been mitigated, Dr. Adelman said, had she received adequate “support from health professionals’’ and not felt “abandoned and unrecognized.” There should be no “invisible patients” in the caregiving dyad, and if there are, he added, “it’s the clinician’s responsibility.”
Among the sidebars in his JAMA article are a list of questions doctors should be asking, as simple as “How are you feeling?” and as complex as “If anything should happen to you, have you made arrangements for someone to take care of [name patient here]?” Dr. Adelman’s article also suggests using a tool kit to assess caregiver well-being long recommended by the Family Caregiver Alliance.
What left me scratching my head was how Dr. Adelman could envision declining numbers of geriatricians taking on this enormous responsibility. Members of this overworked specialty grow fewer every year.
“We do have a crisis, I recognize that,” he said in a telephone interview. In a large teaching hospital like Weill Cornell, there are social workers who assess caregivers, run support groups for them and guide them through the maze of community resources and entitlements. Dr. Adelman has a geriatric psychiatrist on staff, a specialty even rarer than his own.
He also is able to leverage expertise among medical students and residents. Even if they don’t choose to become geriatricians, all residents must spend a monthlong rotation on the inpatient geriatric floor, learning the interdisciplinary skills and community resources this population needs.
Even medical students are taught how to evaluate patients who come to appointments accompanied by an adult child, a spouse, an aide — or perhaps several extra people. Those crowded appointments must be “choreographed,” Dr. Adelman said. The doctor must spend time with the group and also with each person alone: A caregiver needs privacy to say how desperate she has become. These same medical students are taught how to manage discharge planning, he said, and, interestingly, to “always take a call from a visiting nurse, because it might be the most important call you get that day.”
Doctors in private practice, he said, are accustomed to making referrals to medical specialists. Now, in our aging society, they also must develop a network of nonmedical referrals: community agencies, visiting nurse services, geriatric care managers, elder care lawyers and the like. “It’s harder, but that’s what you have to do, and it’s all about who you know,” he said.
And what about hospitals without resources like Weill Cornell’s? What are they supposed to do with desperate caregivers?
Hospitals with an abundance of avoidable and costly readmissions will be penalized under new federal regulations, he noted. That alone may be sufficient to persuade them to begin seeing invisible patients.
“Financial motivation is better than no motivation at all,” he said.