My mother has a letter from her mother written in 1942, telling of the death from pneumonia of a middle-aged neighbor with whom my grandmother had spoken at the post office just a week earlier. For most of human history, that sudden turn to death has been the common experience. Few managed to live into old age; and even for elders, the dying was usually fairly abrupt. There was little risk of living long with dementia, Parkinson’s disease, heart failure, cirrhosis, serious injuries, childbirth complications, or other fatal illnesses. Diabetes was fatal within a few months in 1900. Now, most of us will instead experience a long period of decline in advanced old age. The period of being unable to take care of yourself (mobility, dressing, feeding, toileting) averages more than two years in the last phase of life. During that time, we each will need another person’s help every day—often around the clock. And our society has not even figured out how to talk about the situation, much less how to reorganize to make this newly expectable phase of life comfortable and meaningful, or affordable.
US society seems stuck in an era of “happy talk.” When a fireman pulls a child from a swimming pool, it seems appropriate to call it “saving a life.” But how many times have you seen the newspaper headline touting a new drug or device that will “save X thousands of lives,” when, at best, it will delay the dying of very sick and usually elderly people by some months before something else causes death? That may be a good thing, but it is illusory to claim that it is “saving lives.” Advocacy organizations around each eventually fatal illness promote prevention and cure, but none say what would be a better way to come to the end of life. Influential authors tout odd claims such as “Toward a State of Complete Well-Being,” which persuasively argues for investments in prevention and social determinants of health but does not give voice to the limitations imposed by illnesses associated with aging. Public policy falls into the same pattern, with enthusiasm for supporting development of a costly drug that will delay the progression of heart failure, but inattention to issues such as the struggles of family caregivers, the waiting lists for home-delivered meals, and the misfit of available housing with disabilities.
My mother now lives through the peculiar torment of progressive disability from frailty in a “care system” that is not designed for her situation: losing nearly half of her weight, barely able to get up from a chair, having a plethora of symptoms with no treatable etiology, and yet having enough heart, lungs, kidney, and liver functions to go on for a while. There will be no letter from a neighbor who is startled when she dies; neighbors will be astonished that she lived so long with such severe disabilities. Hospital care is readily available and paid for, but medications after hours are not available, and she must pay out of pocket for personal care. Hospitals, physicians, pharmacists, and civic leaders have not made plans as to how to serve large numbers of elderly people living in the community with serious and worsening disabilities.
Making workable plans would require adopting some novel perspectives and taking account of some salient facts that are often set aside. First, the life possibilities of an elderly person with increasing disabilities is profoundly dependent upon the surrounding community. Is housing accessible? Can you readily get help with minor home repairs, such as changing a light or fixing a gutter? Can you get food delivered, and can you get prepared meals delivered? Can you stay engaged with other people—family, neighbors, and church or club members? Are you considered an embarrassment when out in public with a walker or wheelchair—or an adult diaper? Are walk lights lit long enough for you to cross the street? Are there personal care aides trained to deal with disabilities and challenging behaviors at home, and can elders in need afford them? Are there physicians attuned to your physiology and preferences who will, when needed, come to your home?
None of these things can be made available just for one person; they all are traits that affect whole communities, and they are available to all or most in the community, or to no one. Yet, communities have little voice or resources. Instead, what happens to be available is mostly the result of chance developments and leadership opportunities that vary over time and across communities. Health care has geographically overlapping hospitals, insurers, and other providers, none of which are involved in community planning for elder care and often none of which are actually anchored in any particular community.
Second, the preferences and priorities of elders in this phase of life vary much more than in earlier phases. A 50-year-old with gall bladder attacks is very likely to have about the same preferences for medical care as any other 50-year-old with gall bladder attacks. But two 90-year-olds with frailty syndrome are likely to require substantial customization of their care plans. It matters whether one has a volunteer family caregiver, or a home on one floor, or assets in the bank to hire help. So, elder-driven care planning becomes a central activity, and one that is not yet well-developed or commonly done. We do not yet evaluate care planning; we have aspirational sets of documentation requirements but little actual documentation, and we don’t assure that elders and their families are really driving the choices.
Third, we need more reliable and reasonable financing plans. Working-age people still don’t realize that they need to provide for themselves in old age. Policies need to change to make vehicles for saving affordable and reliable. The Bipartisan Policy Center, a Washington, D.C., think tank committed to balanced policy development, encouraged federal government catastrophic coverage for long-term care when the need for substantial personal care persists for more than a few years. That would make it plausible for many people to save or insure for the first few years of needing long-term supports and services, which is all that most people will need. Other approaches are appealing. For example, by providing flexible hours and part-time work, employers of family caregivers can make it much easier for them to stay at work and still provide care to an elderly family member. The range of possibilities is substantial but largely unexplored in public discourse and policy development.
Fourth, sick and disabled elders living in the community need continuity and reliability across time, instead of the cut-up care system we provide. Remarkable efficiencies are possible if services in the home were allowed to be organized geographically. As much as half of our spending on home care can go to supporting the inefficiencies of having each provider organization spread across a large area.
A substantial revision of Medicare and Medicaid that would put these observations and the existing research together is in order. Call it MediCaring Communities. What would be required? Allow some communities to take on responsibility for monitoring and improving their elder-care system’s performance and enable them to shift resources from medical care to supportive services when appropriate. Let them be able to develop their workforce and improve their built environment. Enable geographic concentration of home care services to capitalize on efficiencies. Help these pioneer communities develop metrics to monitor the local system’s performance over time and to guide setting priorities and monitoring the effects of changes. Explore the possibilities for reliable financing. We could learn a great deal from the first few highly efficient and highly reliable community-anchored care systems for elders. Everyone would want their community to follow suit!
Dozens of revisions in delivery arrangements for elder care have been proven to be effective in improving care and reducing costs. The most comprehensive is PACE, the Program of All-Inclusive Care of the Elderly. PACE serves people who are disabled enough to qualify for nursing home care but who continue to live in the community with substantial support, and PACE provides all Medicare and Medicaid covered services, from enrollment to the end of life. More limited fixes, such as transitional care, have been effective. Our MediCaring Communities reform proposal would incorporate whatever improvements in service supply, quality, and delivery serve the priorities of the community. What’s novel about it would be the development of a deliberate local entity capable of some management of the community’s “system.” This entity could assure elder-directed care planning, adequate supportive services, appropriate medical care tailored to this population, monitoring of system performance, local priority setting, shifting of some resources from overuse of medical care, and implementation of improvements with evaluation to assure learning.
Long-term survival with serious disabilities for very large numbers of elderly people is already a major challenge, and one which will grow with the aging baby boomer population. The models that worked to provide and pay for hospital care for acute illnesses will not work for this new situation. We need an era of innovation and testing, shaped by the facts of the situation. We need a new set of policies for our new way of living at the end of our lives. Let’s try substantial innovations, mostly by relieving communities of the burdens of past policies and regulations, and let’s learn quickly so we can count on living comfortably and meaningfully in the last years of our lives.