Atul Gawande is a surgeon, writer and professor. His parents were both doctors. He became deeply interested in end of life care while closely supporting his father at the end. He argues that modern medicine focuses exclusively on prolonging life, neglecting to help people prepare for the inevitable – death. Death is certain, but the timing, especially today, is not. Life can be prolonged, death delayed. Last words and proper preparation are denied when technology sustains organs past the point of awareness and coherence.
Medical science has rendered obsolete the experience, tradition and language about our mortality and created a new difficulty: how to die. We need to re-learn when and how to accept that the battle is over. We wait till doctors tell us there is nothing more they can do. But rarely is there nothing more doctors can do.
“So we die with chemo in our veins, a tube in our throats, fresh sutures in our flesh. That we may be shortening or worsening the time we have left hardly registers.” Gawande observes that at the end of life we have priorities other than prolonging life. It is the living (family members, doctors and nurses) who do not want to hear about death. The living want more time; the dying want quality time. They may wish to share stories, impart wisdom, mend broken relationships, make peace with God, provide for those left behind, express love to friends and family, review life. Values the living often neglect are important to those near life’s end – relationships, being present to family, taking delight in existence, the blue sky, garden, birds, a final deep appreciation of the beauty and wonder of life.
Doctors tell patients, “You can choose at what point to stop treatment.” But research shows most people are not ready, cannot visualize what lies ahead and desperately cling to any sliver of hope. When dressing oneself becomes impossible, chemotherapy stops working, oxygen is needed, high-risk surgery is recommended, liver failure keeps progressing . . . it is not enough to leave the choice to the patient. In-depth conversation is needed. Doctors need to participate in the difficult conversations, discussing, realistically, what they have seen among their patients to help others prepare for what is to come. Sadly, most doctors are ill prepared to be reliable consultants in helping patients navigate the process of dying. Most of the medical practitioners and services aim to prolong life. Death is seen as failure, forgetting that such failure is certain. How foolish to ignore it and pretend it may not happen.
Gawande’s interests go beyond hospitals. The aim to keep people alive, fed and safe, regardless of the quality of life, also afflicts senior’s nursing homes. Many nursing homes are without life: no plants, cats, dogs, birds or kids. Residents need not make any decisions; everything is decided for them. But bare existence is meaningless; we need a cause, even if it is just looking after one’s cat or buttoning up your blouse.
In the early 1990s, Assisted Living became widely popular. They featured small apartments offering a home-like experience with maximum privacy, choice on what to do and when to do it; in short, control over one’s own life. Support was available when needed, but only when needed. Then, Gawande notes, pressured to make a profit and increase efficiency, they became indistinguishable from nursing homes. A simple example will suffice. Archie takes pride in doing up his shirt buttons, but it takes 10 minutes to do four and the fifth he can’t do at all. Soon the caregiver says, “Sweetie, I’ll help you,” and all buttons are done perfectly in 10 seconds. It saves time, but Archie has lost his sense of being a person. He has become a rag-doll, lining the hallway propped in his walker.
Today, Assisted Living is “seniors nursing” – a friendlier name, good for marketing. But it is not assisted living; the living is done for you.
Long before it is needed, talk to your loved ones about what matters in the end. And read Being Mortal before shipping off your parents or deciding on one more treatment!
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