The mechanisms of our demise have changed dramatically in the half century since my internship in medicine. Diseases that once were rapidly fatal can now be placed in remission, often for years. Advances in treating heart disease and malignant disorders, in particular, have reversed grim outlooks of a few decades ago. Dementia is an exception, and researchers still seek breakthroughs in treatment.
Instead of abrupt drop-offs in our health, we are more likely to have years in which our physical, and sometimes mental, capabilities will slip gradually until we reach a point where it may be difficult to maintain independent living in our homes. Increasing dependency places complex physical, emotional and financial burdens on spouses and close family members. Despair may erode the family environment.
Until the 1980s, a nursing home was often the solution by default to these problems. Such homes were designed for disabled people who needed extensive, chronic care. They varied widely in cost and quality, and their goals were to provide safety, nutritional meals and oversight of daily activities. But residents often felt isolated, bored and purposeless; they were marking time, waiting to die.
In his invaluable, new book, "Being Mortal: Medicine and What Matters in the End," surgeon Atul Gawande traces the development of an array of fresh options to consider when our health or the health of a loved one is in decline. In intimate conversations with a variety of people whose lives are limited by strokes, progressive cancers, chronic heart failure and other disorders, he learns that each person desires as much autonomy as possible to continue to live a uniquely personal life.
For one man, a weekly cribbage game with a friend gave continuity to his life. A piano teacher with progressive cancer wanted to maintain contact with her students through weekly lessons. Life might be restricted, but it was not at an end.
But among intimate caregivers, he finds exhaustion and sometimes a sense of guilt for not being able to provide enough care. Fortunately, options are available for these people.
Founders of alternatives to nursing-home care shared a common goal of building a sense of community so members in different settings could engage in a range of activities appropriate to their abilities. To bring their ideas to reality, the innovators needed patience and persistence to deal with red tape and bureaucratic inertia.
Smaller living units replaced large, impersonal spaces. Pets provided companionship and responsibility in one setting. Gardens engaged residents physically and aesthetically in another. Visits from students at a nearby elementary school provided mutual delight. Life regained a sense of purpose as diverse personal and interpersonal activities were promoted.
In Oregon in the 1980s, the concept of assisted living grew from the reconfiguration of a small nursing home to accommodate people with a range of disabilities and financial assets. These facilities emphasized wider choices of physical and mental engagement for residents. Assisted living rapidly spread nationwide.
In upstate New York in the 1990s, family physician Bill Thomas pioneered an innovative approach to care for persons with widely varying limitations. The Eden Alternative (edenalt.org) is the outgrowth of his work and now encompasses options for home and residential care in multiple locations.
Author Gawande sees firsthand the difference that hospice caregivers can bring to a person and her family when life is slipping away. In describing the decline and death of his father, he gives us a deeply personal insight into the impact of unrelenting illness upon all members of a family. In visits to the different settings in which his interviews are conducted, he draws distinctions between treatment and care and treatment and tenderness. For clients, existence is replaced by purposeful living.
The narrative presents examples of courage and devotion along with accounts of reformers who imagined and created better outcomes for older, progressively limited people. Infused with wisdom and good humor, "Being Mortal" merits close reading.
Contact Clif Cleaveland at cleaveland1000@comcast.net.