- By Jane Gross
Advance directives are in the news today because of a confounding recent case at a senior residence in Bakersfield, Calif., where 87-year-old Lorraine Bayless died while a 911 dispatcher begged an unwilling staffer to perform cardio-pulmonary resuscitation. As we've learned more about the incident, two somewhat contradictory facts have become clear: The woman's family had no complaints about her care because, they say, she wanted to die naturally — but she apparently had no end-of-life documents stating that wish.
It begs the question of why any 87-year-old — or any 40-, 50- or 60-year-old, for that matter — would not have taken the simple steps to complete an advance directive, the vital legal instrument that does not guarantee, but surely increases, the odds that one will die according to one's wishes.
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As it happens, very few of us have taken those steps.
About 30 percent of American adults have advance directives in order, according to recent studies by the Pew Research Center, the Johns Hopkins Bloomberg School of Public Health and others. People living in nursing homes, unsurprisingly, are the most likely to have enumerated their wishes. Younger adults are the least likely to have done so, even though youth is no protection against catastrophic accidents.
A Right and a Responsibility
In the simplest terms, as stipulated by Congress in the 1990 Patient Self-Determination Act, we have access to legal tools (which can now be easily completed online) allowing us to state our preferences about medical care to family, friends and health care professionals in the event we are unable to make those decisions. The two main types of advance directives are living wills and medical power of attorney documents, better known as health care proxies.
A living will lays out what kind of life-sustaining care — CPR, ventilators, tube feeding — someone would or would not like to receive in the event they are unable to speak for themselves. A health care proxy designates a trusted person to see to it that those wishes are carried out. Most experts consider the proxy to be far more crucial than the living will, as it is all but impossible to itemize each and every procedure that might be relevant as medical technology advances, or to adjust what one wants and doesn't want over what could be decades.
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For example, if I were in my 40s and my prognosis was a return to health, I would want to breathe or be fed artificially for a limited amount of time. But I would not want to have the same measures taken at 90, regardless of my prognosis, as my quality of life would likely already be compromised and my remaining lifespan brief, its trajectory headed in only one direction. The resources spent keeping me alive would be better used elsewhere.
Who's Your Proxy?
Your proxy, carefully chosen and privy to your overall philosophy, is likely to have the responsibility of making decisions not explicit in your living will, a daunting legal and ethical responsibility. In most cases, people designate a close family member, but I believe an argument can be made against the assumption that a relative is always the right choice. More people — even those with wonderful children, spouses or siblings — might do themselves and their families a favor by thinking out of the box.
My proxy is a dear and trusted friend several years my junior who lives close by, although we go long periods of time without seeing each other because of very different life and work situations. Since she agreed to be my proxy years ago, I've asked her repeatedly if she found it an unreasonable burden, especially since one of her children is disabled and she has more than enough on her plate. Each time she assures me that it's her privilege, I'm grateful anew.
This role I've given her has even come to be a source of jokes between us, a sure sign that I made the right choice. Before I had complicated eye surgery recently, I told her that my brother, Michael, would be accompanying me. She advised me to be sure he had her phone number lest anybody needed to pull the plug. "Kineahora," she added, a Yiddish expression meant to ward off the evil eye. My mother used to say that, too, with superstition and then thanks when fortune smiled.
So why my friend and not my brother? Because she is level-headed, wise and calm in a crisis, of which she has known many. Her love for me is unconditional but would not take her to sentimental places. She would grieve for me but not keep me alive for her sake or because letting a loved one go is one of the hardest things a human being is ever asked to do. If medical staff tried to bully her, they would sorely regret it. She would use logic, then sweet persuasion, trickery and, if necessary, physical force to see that I got what I wanted. Not being able to watch her in this role would be the worst part of being unconscious.
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My brother is also unusually able in a crisis; he's all business. During my mother's last years, when there were emergencies, I was always a basket case for the first hour or so. Michael carried the ball during those windows. Our skills were different, but our ability to do what needed to be done was pretty much equal — until she was near death.
I was way better at that point, and suspect he would be the first to admit it. There are many explanations why. My portfolio as a reporter had given me many opportunities to witness dying from a front row seat. I had also been a primary caregiver before, some years back, for a colleague and friend who died of brain cancer.
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But more significant than any of that is the fact that all his life Michael had been far more attached to my mother than I was, though our relationship flowered in her old age. No proxy ever had to be employed for her because she remained cognitively intact until the very end, but he found her final days unbearable to witness. We both wanted her to be able to die as she chose, but I was the one who advocated to make it possible. I was the one who stayed with her through her dying. As her proxy, had I needed to make decisions that would have ended her life, I would have made them. I miss her terribly, but do not wish she had lived longer in the state she was in.
Michael has told me many times that he is grateful those decisions would have been mine. I suspect he'd have had great difficulty making them, which my mother may well have suspected and thus assigned me the proxy. It surely wasn't because I was her "favorite.'' It was probably because I wasn't.
And now, I neither want Michael to have to suffer what for him might be the agony of doing this for me, nor do I want my fate in his hands. It is not that I don't love him, or him me. But my dear friend of the kineahoras does not carry the baggage of family. She'll row me across the river from this life to the next, if she must, both wisely and more easily than kin.