Health AGEnda

Someone Needs to DO Something!

Posted in category Caregivers

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Older Americans are not getting very good quality health care, as findings from many studies and experts show. However, most older adults and their caregivers don’t realize that they are getting substandard care.  Given that most people are unfamiliar with the various guidelines for the treatment of chronic conditions and geriatric syndromes (e.g., falls, dementia, incontinence), it is probably unreasonable to think that they will ever be able to judge if their care is meeting evidence-based standards.  People tend to mistake easy access to interventions  (and particularly specialist physicians) for quality.

When family caregivers need to take on a substantial share of care for their loved ones, the many deficiencies in our system become very apparent to all concerned.  This reality is poignantly captured in a first-person story in the April 2010 Atlantic Monthly, “Letting Go of My Father,” by Jonathan Rauch.

As Mr. Rauch struggles with caring for his father in his last year, he identifies many of the issues caregivers face.  He writes, “My professional work all but stopped.  Finding doctors for him and getting him to appointments and coordinating escalating medical needs swallowed entire days.”  As a caregiver he struggles with not only his father’s care needs, and the weaknesses of the care system, but his own lack of preparation for the caregiver role.  He writes “The medical infrastructure for elder care is good, very good.  But the cultural infrastructure is all but nonexistent.  How can it be that so many people like me are so completely unprepared for what is, after all, one of life’s near certainties?”

The juxtaposition of those two quotes reflects most Americans’ misperception of quality of care.  How can the “medical infrastructure” be “very good” when it requires Mr. Rauch to spend entire days “coordinating escalating medical needs?”  I think the paradox shows the low expectations and excessive credit we all typically give the “medical” system.  In an objective analysis, a health care system that depends upon untrained family caregivers for “coordinating escalating medical needs” is neither safe nor effective.

At the Foundation we have been trying to improve this situation by increasing geriatric care competence of the health care workforce in many ways.  As part of this broad effort we have specifically been trying to improve the preparation of health professionals to support family caregivers.  First, we supported a “state of the science” process culminating in a special issue of the American Journal of Nursing and the Journal of Social Work Education.  Second, to implement the results, we supported the AARP Foundation in partnership with the Family Caregiver Alliance and the Administration on Aging.

But I certainly agree with Mr. Rauch’s point about the cultural infrastructure.  As he ruminates upon how our society could do better, Mr. Rauch compares the cultural change we need around elder care to that demanded by feminists in the 1960s to overcome the loneliness and isolation of the role of housewife.  He suggests that the first step is to build awareness of the common problem, taking it from the domain of the purely personal to the societal level so that we can find systemic solutions, much as Betty Friedan did in her book, The Feminine Mystique.  He calls for a wide range of social changes, such as caregiver-friendly corporate policies, greater willingness to ask for and accept help, and proactive efforts to prepare people for a likely role in elder care.

But most of all, he calls for increasing public awareness: “What we need … is for our nameless problem to be plucked out of the realm of the personal and brought into full public view, where help can find us. . . By keeping the problem out of sight and consigning it to the realm of the ‘personal,’ the culture enables our natural tendencies to denial, procrastination, and silence.”

Today we celebrate the first step on this path of culture change with the launch of the Atlantic Philanthropies’  Campaign for Better Care.

“The Campaign for Better Care has already built a broad-based consumer coalition of more than 100 powerful organizations and is supported by a wide range of stakeholder allies.  Led by the National Partnership for Women & Families, Community Catalyst and the National Health Law Program, with funding from The Atlantic Philanthropies, we will work with policymakers to implement reform in ways that ensure that the people who are the sickest and most vulnerable – and their family caregivers – get the comprehensive, coordinated health care they need and deserve.”

Recognizing the need for a social movement that will take on these issues at all levels, from grassroots opinion to legislative policy, the campaign adds public engagement to the set of strategies that the elder care community is employing to improve the lives of older Americans.  We at Hartford have long wished for such an effort that would “open a new front” in the struggle and coordinate with our health professions and workforce strategies.  I deeply hope that the work of our grantees and the Foundation can achieve synergy with the Campaign and that together we will make great strides.

3 thoughts on “Someone Needs to DO Something!

  1. Chris,
    Thank you for drawing attention to the public launch of the Campaign for Better Care. One of the Campaign’s key goals is to build a movement of and for older adults and their families to advocate for the comprehensive, coordinated, patient- and family-centered care they need and deserve. In the wealthiest nation in the world, it’s just not right that vulnerable older adults with multiple chronic conditions are not getting the health care they need and so often are left to fend for themselves.

    For those of us working in the field of aging, it is time to take on this cause — to advocate for better health care for older Americans, and for our families and for ourselves. We are all in this together, and we are stronger together. There is a better way!
    Lynn Feinberg, National Partnership for Women & Families

  2. Chris – I agree that Jonathon Rauch’s story vividly shows some of the impact that family caregiving has on the family caregiver. Your point is well taken about Americans not knowing what good chronic care is because so few actually get holistic care that provides and coordinates not just healthcare but also the HCBS that are so necessary to the wellbeing of vulnerable older adults and others with chronic conditions/disabilities. I think it is really important that we educate family caregivers, seniors, and those with chronic conditions and disabilities, about what the differences are. A few years ago I wrote a series of articles, initially for our newsletter, to try and do just that. I called the series: “It Doesn’t Have to Be This Hard”. The articles are now on the website . I think it is time for me – and many others – to take on such a project again. http://www.thefamilycaregiver.org/caregiver_advocacy/articles_from_an_advocate.cfm

    Suzanne Mintz President and CEO National Family Caregivers Association

  3. Pingback: The End of Life Horror Show: We Can Do Better | Health AGEnda

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