"Old age isn't for sissies," said Bette Davis, and she was right. The very topic makes people uncomfortable. American society is obsessed with youth. Countless products and procedures are marketed promising to keep us young or at least appearing young. But, unless we die young or prematurely, we will be facing the inexorable afflictions associated with aging. As we live longer, we will be dealing with those afflictions for more years than was the case even in the recent past.
Up until the early part of the last century, most people died at home, cared for by their family. During the last eight or nine decades, however, most people have died in hospitals or nursing homes, often having been kept alive by doctors focused on "curing" their illness, regardless of the suffering the treatment causes. How we got to this stage and how the situation needs to change are the topics of Atul Gawande's disturbing yet illuminating Being Mortal: Medicine and What Matters in the End (Metropolitan Books, Henry Holt and Co., $26).
The extraordinary inroads modern medicine has made in curing illnesses, dramatically improved infant mortality rates, better nutrition, greater focus on preventive care, and affordable health insurance have all contributed to ever longer life spans in First World countries. Dr. Gawande finds this to be, for the most part, admirable. But there are consequences – notably the loss of individual autonomy because of the focus on safety in caring for the elderly.
The modern nursing home evolved from the 19th and early 20th century almshouse, where those who were alone, poor, elderly, and suffering from physical or mental deterioration (or both) went to die. The development of the modern welfare state resulted in those same people being sent to hospitals. Hospital staff realized that these were not patients admitted for a specific procedure, then discharged to return to their regular lives. Rather, they needed ongoing care. Thus the idea of a nursing home developed.
With the exception of certain recently arrived immigrant groups, modern American households are seldom multi-generational. The older members of the family don't want to be a "burden" on the younger ones and prefer to live apart. Many couples are raising their children while also dealing with aging parents. As parents become more debilitated, whether from a specific illness or simply because their bodies are wearing out, their children become concerned for their safety. They worry they will fall or lose control of their car or forget to take their medicines or even to eat. Institutionalizing them solves many problems: their lives are regulated and they are safe. Overlooked is the fundamental fact that life is, by definition, risky. The risks may increase as a person ages – hence the focus on safety. But the price paid for safety – loss of autonomy – often causes depression and passivity: people exist, but they don't live. Length of life is substituted for quality of life.
What is "autonomy?" Gawande cites Ronald Dworkin. "[Autonomy] allows us to lead our own lives, rather than be led along them." Gawande adds, "All we ask is to be allowed to remain the writers of our own stories." Thus "the betrayals of body and mind that threaten to erase our character and memory remain among the most awful tortures."
Gawande admits that no fully effective or universal solution to the autonomy vs. safety question has been developed. But there are hopeful changes taking place, such as the rapidly growing use of palliative care. Palliative care does not preclude curative treatments, but it balances them with the patient's comfort. The patient, not the doctor, remains in control.
He has, however, concerns about the growing movement for physician-assisted suicide. He admits it's a logical extension of complying with a patient's wishes to be taken off life support or to refuse any more food or water. It took considerable time for doctors to accept those decisions. "At root, the debate is about what mistakes we fear most, the mistake of prolonging suffering or the mistake of shortening valued life." He is less concerned "about abuse [of physician-assisted suicide]" than about dependence on it. The goal, he insists, "is not a good death, but a good life to the very end."
He concedes that palliative care has its limits. Sometimes "suffering at the very end of life is unavoidable and unbearable," and physician-assisted suicide to help people end their misery may be appropriate. Using data from the Netherlands, Belgium, Switzerland, Oregon, Washington, and Vermont, where the practice is legal, he writes that about half the people who have been given prescriptions for drugs to end their lives don't use them. Having the option may reassure those who don't take that route that they have retained their autonomy. His point, however, is that "assisted living is far harder than assisted death, but its possibilities are far greater as well." Perhaps.
Gawande, an experienced and empathetic physician, offers no easy solutions in Being Mortal. None exist. The questions are universal, but the answers aren't. Hence, it's critical to have our wishes in writing and to have discussed them with those we have entrusted to act for us if we are not able to do so ourselves. Because each of us defines "autonomy" differently, we should be given all the options available from which to choose. In the end, the decision should be ours, not the government's or the medical establishment's.