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  • BIOETHICS FORUM ESSAY

WARNING: Caregiving Can Be Hazardous to Your Health

“How long has it been since your last checkup?” my doctor asked disapprovingly. “Too long,” I admitted, “much too long.”

Last December, the twin forces of guilt for my avoidance behavior and the prospect of losing the unused funds in my Tax-Saver health care account combined to propel me to my doctor’s office. I finally faced the uncomfortable realization that in my personal life I had become what in my professional life as a health services researcher and writer I advise others against – a family caregiver who did not take good care of her own health.

For seventeen years, as my husband’s family caregiver, I was one of the millions of Americans who make up the nearly invisible workforce that provides or manages most of the care of their elderly, seriously ill, or disabled relatives, partners, or friends.

It has been known for decades that family caregivers are more likely than noncaregivers to suffer from stress, depression, and anxiety. More recently, studies have shown that caregivers also suffer disproportionately from chronic illnesses and stress-related conditions, like heart disease, hypertension, lowered immune responses, and sleep disturbances. In a 2005 National Alliance for Caregiving study, 17% of all caregivers and 35% of those doing the most intensive caregiving reported their health as fair or poor, compared to 9% in the population as a whole. Most ominously, older spousal caregivers who experience strain die at a higher rate than their noncaregiving peers. I hear regularly about caregivers who die while the supposedly sicker spouse lives on and on. Not all caregivers are equally vulnerable; those most at risk for poor health are older, poorer, and suffering from chronic illnesses themselves. Perhaps these caregivers, having fewer options in life, are more likely than others to become caregivers in the first place.

Experts are now calling these health risks a serious public health issue. This is not just benevolence; there is a considerable financial interest in keeping family caregivers healthy. If a caregiver’s poor health forces her or him to give up that role, there will be two patients instead of one, adding to medical expenditures, and also the greater likelihood that one or both will end up in nursing homes, eventually if not immediately at public expense.

Hence the flood of advice to family caregivers: Get a flu shot! Get enough rest! Exercise! See your doctor regularly! Yet many, myself included, don’t follow through. Why not?

Guilt is the conventional answer. Sometimes the care recipient makes them feel guilty by complaining about the substitute caregiver. Other caregivers have so internalized the prevalent social value that caregivers should be self-sacrificing that they do not need any external pressure to feel guilty. Some professionals remind caregivers that they have to take care of themselves because the care recipient depends on them. While true enough, and hardly news to caregivers, this advice has the unintended consequence of reinforcing the perception that the caregiver’s importance lies not in herself as an individual but in her role as caregiver.

Money is the second most common answer. Caregivers who have left the workforce may have no health insurance. Even employed caregivers who have health insurance may not be able to take time off from work, especially if they already leave the job to take Mom or Dad to the doctor.

But I believe that other, less obvious forces are at work. Depression, for example, is almost universal among high-intensity, long-term caregivers. One of the primary symptoms is lethargy, an inability to mobilize oneself. Depressed caregivers may not have the emotional resources to accomplish anything beyond the immediate demands of care for their relative. They may not call their exhaustion “depression” because that seems to indicate weakness or disloyalty, and so they are always “just tired.”

Even when caregivers see their doctors, they may describe the sort of vague complaints – indigestion, “nerves,” backache – that don’t get anywhere near the heart of the problem. After the formalities and lab work, the actual time spent with a physician these days – 10 to 15 minutes – is driven by the doctor’s agenda, and is not conducive to a candid discussion of the wear and tear of caregiving.

When physicians are also responsible for the care recipient’s care, they may focus on that person rather than on the caregiver. When physicians are not involved in the care recipient’s care, they won’t know about the caregiving stresses unless the caregiver volunteers the information. Most don’t, and many don’t even recognize themselves as caregivers. And most physicians, even if informed, would probably not know what to say or where to send the caregiver for more help. These encounters are unsatisfactory for both physician and caregiver.

On the other hand, caregivers may fail to mention serious symptoms, fearing that the doctor will find something seriously wrong. That might mean making a choice between caregiving and taking the recommended actions. Better not to know, one may think, and not have to make that choice. On this theory, despite constant pain, I avoided hip replacement surgery for over a year.

In my recent round of medical care, I recognized another potential barrier. Just to undergo the recommended routine tests for a woman my age, I saw four physicians, went to three diagnostic facilities, and for good measure had my eyes, ears, and teeth checked (all at different offices). Many caregivers do not have the flexibility and resources to make such a commitment.

What would improve the situation?

The first step is to stop blaming the victim. The last thing caregivers need is yet another exhortation from health care professionals about what they “ought” to do. And they surely don’t need reminders that “your family member depends on you.” Instead, caregivers need flexibility in scheduling and professionals who understand the complex nature of their responsibilities. They need information about ways to reduce stress and use whatever support can be marshaled from their family, friends, and communities.

The second step is to reframe chronic and long-term health care policy and practice from an almost exclusive emphasis on the individual as patient or beneficiary to a family-focused system. The basic premise should be that family caregivers’ needs must be addressed along with the patient’s. Hospice and palliative care are built on this philosophy, so it is not entirely alien to professionals and payers.

In this new framework, there are many possibilities to include caregiver health and some promising models. Physicians could routinely ask their patients if they have caregiving responsibilities and, if so, how they could make their office visits more satisfactory. Flexible scheduling and reduced waiting times would help. More routine caregiver assessments would also be valuable; the Agency for Healthcare Research and Quality has included the Family Caregiver Alliance’s practice guidelines for caregiver assessment in its National Guideline Clearinghouse. Some physicians’ offices already have information directing caregivers to local Areas on Aging; community groups could provide resource guides for local doctors and their office staff to have available for caregivers to encourage them to seek support. Mobile vans are another idea to reach caregivers where they live.

Public and private insurers could also play an important role, especially in chronic care and disease management. Insurers could establish special rates for caregiver health services to encourage timely care. In the current emphasis on community-based care, Medicaid and Medicare programs could build in caregiver assessment and services, because without a family caregiver, the beneficiary would be unable to remain at home.

Community-based respite services could offer special options for caregivers who need to go for medical appointments, perhaps linked to hospital “caregiver specials,” combining preventive health visits with stress reduction and nutrition counseling. Employers could offer time off for caregiver medical appointments.

Ironically, just as I geared up for my long-delayed round of doctor visits, my caregiving career ended with the sudden death of my husband. To begin to construct a life that is no longer built around his daily, constant, and complex needs, I now have new medications, a resolve to exercise, and a refrigerator devoid of everything that is not green or whole grain.

My new advice to caregivers: The impact of caregiving on your health will last much longer than the caregiving itself. Take care of yourself – for yourself.

Carol Levine is director of the Families and Health Care Project, United Hospital Fund, New York City. She is the editor of Always On Call: When Illness Turns Families into Caregivers(Vanderbilt University Press, 2004); and (with Thomas H. Murray) The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals and Policy Makers(Johns Hopkins University Press, 2004).

Published on: April 29, 2007
Published in: Caregiving

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