In his wonderful book, “Being Mortal,” the Indian American physician Atul Gawande describes how his grandfather had grown old in India, honored, consulted, and cared for by his large family.
Something similar happens near me, among the Haitian and Latino families in the farmworker community of Immokalee. As the family realized that one of their older members “would soon be leaving us,” as one friend put it, they would gather at her bedside whenever possible, going directly from work to be with her. Sometimes, 40 family members would be around her bedside.
By contrast, some people in the United States, Japan, and other developed countries die alone or with minimal family involvement. Arguments may develop among the adult children as to who should provide care, and often the answer would be a nursing home, a fate most seniors dread.
Two things wrought a profound change in the way we care for our elders as they approach the end of life. One is the shrinking and scattering of families. As fertility levels declined, there were fewer children or relatives of any kind (aunts, uncles, cousins, and so on); people became more autonomous and separated (or “liberated”) from family. The chances of ending one’s days in a nursing home depended on how many children one had raised, and especially whether they included a daughter.
The second change was that death and dying, until then seen as no less natural and inevitable a part of every family’s life than the birth of children, came to be seen as a medical matter. We came, in just the past half-century or so, to see the normal processes and trials of sickness, aging, and mortality as medical concerns.
In Gawande’s words, we put “our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.”
The knowledge, skill, and expertise of modern medicine are staggering, but its focus is narrow. It is about “repair of health, not sustenance of the soul,” as Gawande, himself a skilled surgeon, says.
Physicians, by training and habit, are oriented to fix problems. The tendency continues when problems can no longer be fixed, but need to be managed in the best way possible to make life worth living in the little time left. Instead, the medicalization of death, as of birth, stripped life of its significance and centrality in the life of families and society.
As elders reach advanced age, they inevitably grow more frail, and health problems multiply. As families shrink and disperse, the strain on family caregivers—emotional, physical, social, and financial—grows. Safety becomes a growing concern, as elders have falls or develop cognitive impairments like dementia. As age advances and health declines, resorting to nursing home care with round-the-clock staffing is seen as unavoidable, much as the elder would prefer to stay at home.
The motivation is safety, but nursing homes, designed in every respect for control of their residents, may put them at greater risk of abuse and neglect. The scandal of inadequate and dangerous nursing home care now being investigated by a Royal Commission in Australia has brought to light many shocking cases of institutionalized cruelty and neglect.
The commission’s interim report, released earlier this year, is titled with the single word “Neglect.” As it states—after enumerating problems such as the use of physical restraint and overprescribing of drugs, both meant to make residents easier for staff to manage—“At the heart of these problems lies the fundamental fact that our aged care system essentially depersonalises older people.”
What’s to Be Done?
Fortunately, the problems and unnecessary suffering created for the way we undergo the universal experience of death and dying in modern times have created a ferment of creativity and innovation in how we serve the elderly and frail, in addition to broader efforts in policy and practice to strengthen families. They all depend on two important insights.
First, people nearing the end of life remain fully human and not as helpless as we often think. Second, they have wishes and needs that differ from and transcend the issues of health and safety that understandably preoccupy adult children, doctors, nurses, and institutions.
In later life, our perspective narrows, and at the same time, we experience more positive emotions. We’re less concerned with making new friends and achieving career goals or economic success. We’re concerned with being rather than doing. As we age, a “positivity effect” sets in. We have a relative preference for positive over negative stimuli when compared to younger adults.
But a strong personal sense of how finite our time is, whether because of aging or a life-threatening condition or near-death experience in our twenties, brings perspective and a reordering of priorities. What we value in life, what makes life worth living, takes on a new significance for us.
One expression of this creative ferment is assisted living, which Keren Brown Wilson developed originally as an alternative to nursing home care, one that afforded residents much more freedom and autonomy than nursing homes provide. She meant for Park Place, the facility she created in Portland, Oregon, to replace the need for nursing-home care. The facility provided separate small apartments for its tenants, as they were called, each with its own bathroom and kitchen.
There was no trade-off with worsening safety, as health care professionals and state bureaucrats feared. The data revealed improved outcomes (including satisfaction) with lower costs.
Her ideas spread rapidly, giving rise to a $30 billion industry. But as it did so, assisted living became not an alternative to nursing homes but a waystation in the journey from independent living to full round-the-clock nursing home care.
As the assisted living facility became part of a “continuum of care,” Wilson herself parted ways with Park Place and set up a foundation to work on housing and service issues for very-low-income and hard-to-serve elders both in the United States and in Central America.
A second innovator, geriatrician Dr. Bill Thomas, aimed to transform nursing home care itself. He wanted to overcome the three plagues he saw in such facilities—boredom, loneliness, and helplessness. He brought life into a nursing home with 80 severely disabled residents.
Thomas achieved this by bringing in plants, birds, animals (cats and dogs), and creating contact with children. The experience gave residents new reasons to live, a new sense of responsibility for other living beings. The effects were dramatic and his ideas have had wide influence, being copied to some degree in many nursing homes.
Hospice care offers a third, very important innovation. With roots in the 19th century, the modern concept was developed in England by Dr. Cicely Saunders in 1967. It was imported to the United States, and recognized and covered by Medicare from the 1980s as well as by Medicaid and most private insurances. There are now thousands of hospice agencies providing this service. In the 1990s, hospice care became recognized as a medical subspecialty with board certification available for physicians involved in providing it.
Hospice is a kind of palliative care designed for the final stages of life, when aggressive treatment isn’t helpful and life expectancy is a matter of days, weeks, or months. It aims to treat physical, emotional, and spiritual discomfort, to manage health problems, but not to cure or fix them. It takes full account of the wishes, goals, values, and beliefs of patients.
Asking the Right Questions
Physicians and others who work with those in the final stages of life ask different questions than those trained to look for the severest medical problem and try to fix that first. They ask questions about what is most important to the patient, and what goals they have in whatever time remains for them. They recognize the importance of treating patients with dignity and respect, and of listening to them.
If you were dealing with a car, you would service it on a regular basis and repair it to fix problems as they arose. You would ask what the most serious issues were, those that made the car unsafe to drive, and give them priority. Unless you had the requisite skills, time, and interest, you would delegate these tasks to professionals. At some point, the problems would be so many or so serious that you would decide the car was not worth fixing and junk it.
But people are not, or not only, machines to be fixed. People need reasons to live, even or especially when they are in dire straits themselves. Simply existing, being housed and fed, even if not mistreated, isn’t enough. As psychiatrist Viktor Frankl (who drew on his direct experience in Nazi death camps) showed, people need a purpose and meaning in life. Even in the shadow of death, they have goals.
These innovations in care—in assisted living, nursing home care, and hospice—cannot fully compensate for the shrinking and dispersing of families, and the resulting decline in ability to care for their own. Nor have they everywhere transformed the institutional, medicalized, and depersonalizing alternatives to which families have delegated care they’re no longer able to provide themselves.
But in these conditions of our time, they point to better questions to ask and better ways to help those facing death.
Paul Adams is a professor emeritus of social work at the University of Hawaii and was a professor and associate dean of academic affairs at Case Western Reserve University. He is the co-author of “Social Justice Isn’t What You Think It Is,” and has written extensively on social welfare policy and professional and virtue ethics.
Views expressed in this article are the opinions of the author and do not necessarily reflect the views of The Epoch Times.