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?