A good friend of ours who lost her husband a few years ago told us, “Death itself is hard enough. But it’s the process of dying that is so difficult.”
She had had to assist him in most of the activities of daily living for years, including the negotiation of procedures through the medical community.
Another friend of ours suffered from a fast-spreading cancer. She had endured more than one extensive procedures, including radical surgery. But up until a few days before she died, a doctor told her family that just one more procedure would have her up and functioning normally.
The reality both families – and the doctor - faced is the universal one of death and dying, which will happen to all of us, regardless of the desire to maintain hope. And no matter how much we acknowledge it and prepare, it will be difficult.
Atul Gawande, a highly acclaimed surgeon and medical analyst has written a book titled Being Mortal, in which he recognizes that traditional medicine has fallen short in helping patients facing those difficult circumstances. Too many times, options presented to families have tended to give false hope, be too blunt, or ignore the deepest concerns of the patients and their families.
The patients and families have looked often unreasonably to the medical community for assurance that patients will be restored to “normal.” Gawande points out that a hundred years ago, people struck with an illness or condition without a cure would try to bear their fates, often in severe pain, with dignity and bravery. Without the sophisticated procedures and medicines available today, people would survive at home days, weeks or months, not years, and costs of care didn’t reach into the hundreds of thousands of dollars.
Today most people die not in their homes, but in hospitals, surrounded by medical technology, or, if their care is extended, in nursing homes. Gawande spends considerable time talking about them. He cites the work of Bill Thomas, the force behind the Eden Alternative, and his efforts to attack what he calls the Three Plagues of nursing homes: boredom, loneliness, and helplessness.
Nursing homes have traditionally standardized staff procedures for efficiency, often at the expense of resident autonomy. But Gawande tells how progressive nursing homes have adopted Eden Alternative components to create resident-centered, lively environments, with enthusiastic staff support.
He also talks about a range of home care, favored by most afflicted people and mentions the extended home support available through Area Agencies on Aging and the Program of All-Inclusive Care for the Elderly (PACE) that provides patient services and autonomy in a social environment.
He underscores the growing role hospice care is playing in our lives and straightens out some misconceptions people have about it, such as believing that hospice precludes the treatment of illnesses. He tells us how he learned from the hospice staff about helping people and families facing death. He reminds us that we all “care about what happens to the world after we die.”
Perhaps the most poignant part of his book was the section on acting not as a surgeon, but as a son in the process of his father’s dying and death, and of the anguish and helplessness he felt. It was obvious he knew he would never be the same.
Gawande is a masterful author. He deals with the weight of the content in Being Mortal without talking down to his readers. And his use of anecdotes makes for compelling reading. A reader may want to read a section, then ponder the ideas a bit before pressing on.
It should be in your local library, although there is probably a somewhat lengthy wait list. However, your local bookstore, such as Forever Books, should have a copy or make a quick order for you.
If you’re aging or have a family member aging, it’s a must read.