8.1 How can Americans become more aware of the challenges of frailty in the last phase of life and become familiar with the connections to public policy and historic service delivery arrangements?


Family caregiving is or will soon be the most widely shared experience among Americans, even more common than raising children. Currently, family caregivers often do not recognize that they are in this role, whether they have slowly taken it up or were thrown into it unexpectedly from a crisis. In either case, crossing a threshold into the caregiver role often passed without explicit notice. And family members try to do the best they can for their disabled elder, usually without being identified as an important part of the care plan by physicians and without payment, and often even without thanks. Many frail elders are living with cognitive failure, and their ability to recall names or attend to social graces is gone or rapidly fading. Yet the overwhelming majority of care for frail elders is given for free by family and friends.[207]

Family caregivers provide the potential locus for forcing attention and reform. Those now profiting from the waste and inefficiency of elder care will not suddenly be seized with moral outrage and demand to risk being disadvantaged by a more balanced and thoughtful approach, whether the stakeholders are physicians, health plans, hospitals, assisted living centers, nursing homes, or other providers. Political leaders are scared of being drawn into a black hole of need with long-term care. When one looks about for where the fulcrum is to change the future, the answer comes back to family caregivers, if only they knew what a raw deal they are getting.

Houle and Eckstrom have written a wonderful and infuriating book about Houle’s parents experiences as they aged.[208],[209] The series of avoidable calamities visited on this old couple and their family caregiver is just outrageous. Eckstrom, a geriatrician, writes a chapter after every maddening complication as to how you could avoid this for your parent. I’m glad they wrote this up, and I hope it helps a lot of people. But really! A book about how to protect your elder from the care system that is supposed to be helping! We don’t write about how to be sure that the obstetrician catches the baby or that the cardiologist can read the EKG. Why does anyone have to write about how the physician serving the older person should know to check for pain!

Many others have written on their troubling experiences with aging parents or spouses, so many that it seems to be a growth industry. Perhaps the most widely known is Atul Gawande’s book Being Mortal, which conveys the frustration and urgency of improving care for the last years of life.[210] What is missing from this library of stories and advice is a clear path forward and a call to collective action. That’s what MediCaring Communities provides.

Knowing what to demand is difficult for elderly persons and their families, and the widespread lack of familiarity with long-term survival with multiple chronic conditions and progressive disability makes most family caregivers into explorers in unfamiliar territory. Perhaps we should start with demanding simple confidence in the care system. Can any provider promise anything of importance from onset of frailty through to the end of life? Can every provider promise to deliver what matters most for frail elders and their families, through to the end of life? Can they promise to relieve or prevent symptoms, to respect the patient and family priorities, to be stewards of the patient and family resources, or to help make every day just as good as it can be? Or, as is usually the case now, can they only promise to try to do a decent job in their little corner of specialization and to try hard not to notice or take responsibility for the overall experience required of the elder and his or her family?

When you listen to people talking about the last few years of very old people in their families, you hear many stories of constant anxiety, many errors, unnecessary burdens and suffering, and substantial costs – and people seem to assume that these are just the unfortunate normal. Sometimes, you hear a story of a last few years that went really well, and the storyteller will almost always say something that indicates that he or she feels that they were lucky that things turned out this way. We should not have to be lucky to get reliable services, and we should not be complacent about being put through undue suffering from such a costly and highly dysfunctional system.

We need to tell stories, to get people familiar with the language, the experiences, and the evaluation of the merits of current care pathways. We need to draw political leaders into the conversation. They have family, too; and most who are over a certain age have at least second-hand experience. They just have never had the connections illuminated between public policy and the perpetuation of the dysfunctional care system. The fact that Medicare is suspicious of the need for home visits by physicians and wary of paying for them makes house calls unlikely. The substantial payments for procedures and imaging studies make them attractive to provide, even in marginally useful situations. The underpayment of thoughtful counseling and continuity makes those much less likely to be available. The list goes on and on, and the problem is not just payment incentives. The organizing of the health care system by provider type prevents real continuity, and Medicare regulations allow the illusion of patient choice to trump the value of developing close connections among a limited array of provider organizations to support continuity of care. The broad underfunding and undervaluing of community-based services, such as home-delivered meals and adapted housing, means that efficient and desirable care plans are often simply unavailable. In scores of ways, the current wasteful and dysfunctional care system is sustained by current policies, mostly at the state and federal levels.

We do need to get past the usual reluctance to acknowledge decline and death as part of the lifespan experience. Pretending that this phase is simply not there does not make it vanish; instead, that pretense prevents us from taking the steps that would make good eldercare reliable and affordable. Many people, even political leaders, fear that the problem is so overwhelming that we just can’t deal with it.[211] This book shows that this is not true. If we buckled down and implemented MediCaring Communities, starting with pilot programs to expand PACE, and if we also began to structure savings and long-term care insurance so that people have the financing needed, we could build a sustainable and reliable care system frail elders need. So, readers of this book need to spread the conviction that useful and efficient reform is possible and could get underway today. Living as well as possible in a period of decline before dying is important to having a good life overall.

We probably need some people to demand even more than MediCaring Communities—demand social insurance to cover all long-term services and supports, demand not just adequate food but desirable food, demand not just adequate housing but preferred housing, and so on. With more aggressive demands as part of the context, the reasonableness of community-based management of a budgeted care system will more readily be seen as moderate and reasonable.

Many worry that the elderly will rob children and young adults of their opportunities. That concern misses the critical and tight emotional and economic connection of the elders and the young. The emotional connection is obvious, as elderly people so much want successive generations to thrive. The economic connection takes a deeper understanding of the interaction of savings and production.[212] Quite simply, the economic engine of the country has to be strong enough to support services paid from contemporaneous earnings and savings. If that engine is too weak to spin off excess earnings and to maintain the value of savings, then there will not be the revenues that elders will need. This recognition has taken root in some countries, where productivity of young adults is taken as a strong goal of the social order. That idea has not taken root in this country yet, as evidenced by the high rate of unemployment and incarceration of our young people. Once all parts of the society recognize the importance of the education and opportunities for young people to the well-being of the elderly, the perception of the risks of the older generation overreaching will diminish.

Of course, the issue of supporting frail elders will get the attention that the issues deserve as the numbers of frail elders rise sharply, less than twenty years from now. And many people will see the connections to policy. And if we have not implemented serious reforms for service delivery and financing, many people will see what a trap we have built for our futures and our economy. The important reform is to get that attention now; and that will require organizing family caregivers, telling strong stories, pushing political leaders to recognize the impact of their choices, and, perhaps most important right now, being willing to innovate and test out concepts that have a good chance of working and that will teach us how to move ahead. That’s MediCaring Communities.

[207] (Freedman and Spillman 2014)

[208] (Houle and Eckstrom 2015)

[209] (Lynn 2015)

[210] (Gawande 2014)

[211] (Lindland, et al. 2015)

[212] (National Research Council 2012)

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