Antibiotics, defibrillators, feeding tubes and ventilators are lifesaving tools that sometimes become weapons to prolong life against our will. None of us can escape death but some of us want to shape our final time on earth.
We don’t want to live for years in a nursing home rendered unconscious by late-stage dementia; or brain-damaged by strokes; or on and off ventilators with recurring pneumonia, growing so frail we lose the choice of an unfettered death at home. We grow determined in our wishes. We formalise end-of-life plans asking for comfort care only, no heroic, invasive or futile medical procedures, no artificial food or hydration, minimal feeding. We assemble and legalise these plans. We calm our fears.
It sounds rational and safe. But in reality, the faith we place in legalised directives, or in the medical professionals charged with enforcing them, has proven unwise. Medical professionals ignore such directives, no matter how carefully we’ve crafted them, particularly if we end up in a hospital or nursing facility.
I’m not talking about assisted suicide. I’m talking about plans that specify withholding treatment, such as a ventilator, a feeding tube or antibiotics for pneumonia, for a person who won’t recover, prolonging death even over fierce objections from family members. This situation results, in part, because directives go against the culture of medicine, which focuses on healing, on doing everything possible even if what’s possible proves futile. Our wishes might be viewed as disrespecting life, and medical personnel can prevent us from dying, no matter how airtight our legalised directives are.
The terms ‘advance directive’ and ‘living will’ are used interchangeably, but they’re actually not the same, even though the intent of each is to prevent futile medical treatment. Advance directive is the generalised term for the legal documents spelling out our end-of-life wishes, should we become unable to express them at the time.
There are three types of advance directives: living wills, healthcare power of attorney, and healthcare proxy. Living wills detail the type of medical treatment people might not want, such as artificial nutrition, antibiotics, dialysis, resuscitation, and so on. Both healthcare proxies and powers of attorney appoint another person to make medical decisions on our behalf.
The issue is critical because the very nature of death has changed in modern times. By the 1960s, medical advances such as cardiopulmonary resuscitation and portable defibrillators could restart hearts away from hospital settings. Artificial ventilation kept an unconscious person breathing, and feeding tubes kept them fed and hydrated. But restarting the heart sometimes meant people survived with brains so damaged they lived only by artificial means.
This changed the legal definition of death from solely a cardiac event to include brain death, defined as irreversible loss of brain function, including the ability to breathe on one’s own. With this new definition, people on ventilators could be brain-dead, but have beating hearts and be warm to the touch. The shell of a person would be functioning, but everything we knew and loved about them would be gone.
In 1969, to protect the living and the brain-dead, the US attorney and human right advocate Luis Kutner, co-founder of Amnesty International, proposed the idea of living wills. These wills could protect people from futile end-of-life treatment, as long as medical professionals respected their wishes.
But very few young people had documents drawn up, and those who wanted loved ones off ventilators, feeding tubes or both had to petition the courts, and found pushback at every turn. The first such case came in 1976, in the US. Karen Ann Quinlan was 21 when she collapsed at home after attending a party where she mixed alcohol and tranquilisers. Afterwards, she needed an artificial respirator to breathe and a feeding tube to eat.
After months with no improvement, Quinlan’s father, who’d been appointed guardian, asked her doctors to remove the respirator. They refused after a prosecutor warned they could face homicide charges. The Quinlans went to court, and eventually the New Jersey Supreme Court sided with them. The respirator was removed, but Quinlan remained in a coma until her death in 1985.
During media coverage of the Quinlan case, my mother and I had our first conversation about-end-of life issues. In 1976, she was 61, the same age I am now. We were both horrified by the effort and agony of Quinlan’s parents in their fight. My mother said that if she were in the same situation she ‘never wanted to be hooked up to machines’.
After Quinlan, each decade brought signature end-of-life cases in which young men and women who did not have living wills ended up on respirators or feeding tubes after a sudden illness or accident. In Missouri, where I live, the parents of Nancy Cruzan fought the Department of Health to have their daughter’s feeding tube removed. Cruzan had been thrown from her car during an accident in 1983 when she was 25. She was found, unconscious in a ditch of water, revived and placed on a feeding tube (a decision her father later said he regretted). In 1987, her parents requested removal of the tube, after their personal physician assured them that Cruzan would not suffer.
The Department of Health refused saying that they ‘would not starve somebody to death’. The fight went to the Supreme Court; Cruzan’s family eventually prevailed and in 1990, Cruzan’s feeding tube was removed and she died. But protesters kept a vigil at the care facility. Some were so loud they had to be moved so the family could not hear them.
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