Family caregivers are the unsung heroes of our health system

Long term care is a hot topic. When people talk about long term care, they are generally talking about nursing homes. Policy makers put a lot of attention on nursing homes because they cost so much money. About half of nursing home care is paid out of public dollars. In California, in the setting of our state budget fiasco, the high cost of nursing home care to the state has gotten a lot of attention.

But we often forget that there is another long term care “system”: family caregivers. It is important to recognize that for every person currently in a nursing home, there is at least one more person still living at home who is disabled enough to live in a nursing home. They live at home because of the great efforts provided by their caregivers.

Family caregivers are the unsung heroes of the US health system. They often provide care at great personal and economic cost. Many give up their jobs so that they can care for a loved one. But caregiving can be very hard – often harder than any paying job. Caregivers have high rates of depression. Some studies suggest caregivers may often suffer consequences to their own health.

The cost of replacing the labor provided by family caregivers would dwarf spending for formal home health care and nursing home care. If it were not for caregivers, our nursing homes would be overwhelmed. But the importance of caregivers does not match the attention they receive from policy makers and physicians. Medical students and residents receive virtually no training teaching them how to talk to and help caregivers.

While I think we do this better in Geriatrics than in other disciplines, we also have a lot to learn. In the major journals that are read by Geriatricians, the focus on caregiving is very limited to non-existent. Geriatricians need to join our nursing, social work, and Gerontology colleagues and be on the front lines of trying to learn how to better help caregivers.

Sadly, the casualties of the California budget disaster include programs that are helpful to caregivers. This is unfortunate, because the limited help provided to caregivers pales in relationship to their contribution. I suspect the short term savings will be more then lost in higher levels of nursing home use.

10 years ago, Carol Levine wrote a very eloquent essay in The New England Journal of Medicine titled, The Loneliness of the Long Term Caregiver . She concluded her essay noting, “Family care givers must be supported, because the health care system cannot exist without them…No single intervention will change the system, but small steps taken together can cover a long distance. As I enter my 10th year as a family care giver, it is hard to believe I have come this far. Today is a reasonably good day. But what about tomorrow? And next week? Hello? Is anyone listening?”

Sadly, in the 10 years since Carol wrote these words, it still seems like no one is listening.

Ken Covinsky is Professor of Medicine, University of California, San Francisco who blogs at GeriPal.

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  • Doc Stone

    Why does doing ones natural duty make one a hero? Have we degraded the concept of personal duty and obligation to such a low level that the most basic exercise of it is “heroic”. It would rather seem to me to be quite unremarkable–rather it is the commonality of it’s abandonment that is despicable.

  • http://www.geripal.org Eric Widera

    I would argue that being caregiver should never be considered an “unremarkable” duty as mentioned in the previous comment. Setting aside ones life to take care of a loved one with an advance illness is a complex and challanging task. Can it be rewarding – yes. Is it easy or unremarkable – never.

  • http://www.geripal.org Alex Smith

    Thank you for publishing our guest post, Kevin. Please visit GeriPal for stimulating commentary about geriatrics and palliative care. We hope to get people interested in these issues dialoguing on the same page…and to change the world.

    In response to Doc Stone, you have seemingly turned Dr. Covinsky’s argument on its head, yet are essentially on the same side. I think you do miss a critical point, however. Doing their duty or acting as unsung heroes, family caregivers need to be recognized for doing the right thing under difficult circumstances. Caregiving takes a physical, emotional, and monetary toll. For more on this, see Dr. Covinsky’s article in JAMA. The fact that some are not up to the task is often not a failure of individual responsibility, but a failure of our system to support caregiving.

  • http://www.nextstepincare.org Carol Levine

    I appreciate Dr. Covinsky’s mention of my NEJM article; that it continues to resonate is remarkable. To bring the story up to date, my husband, who had a severe brain injury and was quadriplegic, lived for seven more years after that article was published. I cared for him at home with the the assistance of a daytime aide. I paid for all his home care. I do not consider myself a hero; just a loving wife trying to provide the best care for her husband with no help at all from any agency or medical institution and only at the end a doctor who made house calls. The cost was far more than financial. I don’t think Doc Stone appreciates how complex this care can be, and how “setting aside one’s life” for 17 years or longer is something that carries no repercussions. I have yet to hear anyone say that a man in the middle of his career should give it all up to take care of his mother, father, or wife. But this is routinely expected of women. This is not chicken soup and friendly chat; this is a hospital at home with no training, no backup, and no time off.
    Still, there is hope. With my colleagues at the United Hospital Fund and our partners in medicine, nursing, and social work, I continue to work to create better working relationships between health care providers and family caregivers. I invite readers to look at our website–www.nextstepincare.org–to see 18 guides for family caregivers (in English and Spanish, with Chinese online later this month) and other information that will make care transitions smoother and more effective. We need to work together with a deep understanding of each other’s needs and limitations.
    Carol Levine

  • Donna

    Doc Stone’s “argument” is based on homilies. What constitutes “natural duty”? Healthcare professionals choose their field. They receive education and training. They are paid. Ideally, they maintain professional distance and boundaries. Family caregivers are often thrust into the role – or, delegated by another family member(s). They receive too little training/support. When they take their loved one to medical appointments, they are rarely asked how they are doing. They make countless sacrifices. Relationships with the loved one can become strained due to the “professional” responsibilities that become a part of the relationship.
    For almost three months, I have been my fiance’s caregiver. He is recovering from emergency open heart surgery and a stroke. It is the hardest thing I have ever done/experienced – physically and emotionally. Even when he was in ICU much of his care fell to me. At times, the nurses delegated their responsibilities to me.
    Doc Stone, what is the “natural duty” of healthcare in America?

  • Doc Stone

    I did not say that it is easy. It is not. Sometimes, it is not even doable. There is certainly no duty to do what one cannot do. But it is in fact perfectly natural for a child to care for a parent, a spouse for a spouse. Such is as it has always been. It is not wrong that we get assistance from the community when we need it, but it is assistance to do that which nature has always put in our laps. In the case of parents, we are talking about simple reciprocity–wiping the butt of the person who wiped yours when you were helpless. In the case of spouses we are talking about fullfilling a vow willingly taken–”for better or for worse”.

    I have seen people take disabled people into their homes to care for that they had no obligation to–that is heroism. I do not degrade the virtue of those who care for their family. I protest the degradation of the term “heroism” and further the degradation of the web of personal obligations that raise us above the brute.

    What obligation does the community have? Historically none. Constitutionally none. Some obligations per the teachings of the Christian faith but only after those with the first obligation, the family have exhausted their resources. I do not protest our decision to make collective efforts to go somewhat beyond that in assisting family, but when this society has fallen, the government collapsed and broken, family is all that will be left. The duties that follow from that are as natural as procreation itself.

  • http://www.geripal.org ken covinsky

    Thank you KevinMD for posting these thoughts, orginally posted on geripal. (http://www.geripal.org/2009/07/family-caregivers-silent-long-term-care.html) And thank you, Doc Stone for challenging us to think critically about these issues, and Carol Levine for weighing in with you vast experience, both as a caregiver, researcher, and policy advocate.

    I think Doc Stone does raise some important points. Nobody wants to promote an ethic where nothing is expected from family members. And while families are generally not legally compelled to care for adult family members, I believe one of the Doc Stone’s points is that there is still a moral obligation to do so. I think most would agree with this, at least to a point. Another very useful article from Carol Levine describes the nature and limits of this private responsibility (http://www.ncbi.nlm.nih.gov/pubmed/10558590?ordinalpos=85&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

    Doc Stone does acknowledge that sometimes family caregiving is not doable. The thing is, those of us who work with caregivers in our clinical practice marvel at how often family caregivers do what we would have thought undoable. As Carol notes, we often see caregivers with virtually no medical training essentially running a home hospital. Or caregivers with their own serious health problems working themselves to the point of exhaustion. We are not talking about tea and crumpets with Grandma. We are talking about 24/7 caregiving. In the case of dementia, this often includes caregivers who cope with patients with distressing behaviors, never get a full night of sleep, and never take a vacation. Many caregivers sacrifice their own health and financial well being.

    The original title of my post on geripal was, “Family Caregivers: The Silent Long Term Care System.” This was meant to emphasize that many patients who could be in nursing homes are not because of the efforts of family caregivers. These are patients who are so impaired, that no one would question their appropriateness for nursing homes, and no reasonable person would accuse families of not doing their obligiation if they were in nursing homes. In many cases, these patients could have nursing home care fully paid by the VA or Medicaid. Yet family members continue to provide care, at their own expense. Regardless of whether one considers this caregiving “heroic”, don’t we want to have public policies that support caregivers who choose provide this care? And don’t we want to train health professionals to better help those who are caregivers?