I remember standing over the hospital bed in my father’s bedroom, an hour before he died. He couldn’t talk anymore and thrashed from side to side in great agitation, his eyes rolling wildly in his head. His night-shift agency caregiver, a lushly tatted and pierced young woman given to long cell phone conversations on the deck that sounded suspiciously like pharmaceutical transactions, clutched a bottle of morphine in her left hand, eyedropper at the ready in her right. We looked at each other over my father’s bed and she offered that she didn’t think he could last much longer in his current state. I was in a maelstrom of chaotic emotion and frequently reflected on the uselessness of my humanities degree. The ER was out. After his latest visit my father announced that he would never, in either this lifetime or the improbable next, forgive anyone who conspired to get him into the hospital again. I finally left late that night, but as I walked into my own kitchen my phone was already ringing. My father had just died. (Both my parents died at night after family members had gone home for the night, apparently a common occurrence.)
My much-loved first mother-in-law had a very different experience. After a heart attack at 80, she was administered a life-saving drug in the ER that destroyed her kidneys. For the next three years she would be strapped to a gurney twice a week and taken by ambulance to a dialysis center, the last two years from a nursing home. My ex-husband, only son and oldest sibling (i.e., sole decision maker), believed (possibly in accordance with his linear training as an engineer) that science would somehow come to his mother’s rescue at the eleventh hour; so he unsurprisingly blew off her doctor’s recommendation to take her off dialysis and let her die. She had lived three years past what would have been her natural death from her initial heart attack, so ended up enduring three years of medical Hell. She told me that she felt like an oyuncak, Turkish for “toy,” though in this case she was the plaything of the medical profession.
Dr. David Jarrett, author of my latest book entitled 33 Meditations on Death, would have considered my mother-in-law’s end-of-life treatment inhumane. The British gerontologist (a label he hates for its narrowness) writes in his book that the medical profession even has an acronym for her treatment: VOMIT, short for Victim of Modern Imaging Technology. Translation: too much technical intervention, too little holistic care, too much ostrich-like denial.
About his own father, Jarrett writes that in his final years he became a sucker for any new treatment that came down the pike: cinnamon on his toast, vitamins and Echinacea at every meal, no more fatty food or alcohol. He writes about the alcohol prohibition that “family meals were graced by alcohol-free wine, to my mind the equivalent of orgasm-free sex.” And who says doctors don’t have a sense of humor?
Jarrett’s book perceptively summarizes what he thinks is ailing modern medicine today. Until the latter half of the twentieth century, doctors plied their craft without a lot of oversight. There weren’t many specialties, so GPs with broad knowledge of their elderly patients treated those patients at the end of their lives in a less medical, more palliative way—making them comfortable as they inched toward the end that patiently awaits us all.
Family members, typically with neither medical experience nor training, hold outsized sway over the fates of their dying elders these days. Jarrett cites one of his cases that he found so disturbing that he called a meeting of the patient’s medical team post mortem to discuss it. The frail, elderly patient in question had suffered in agony through three long months in the hospital because her decision-maker (in this case her son), refused all treatment for her, including opiates for her suffering, because, according to Jarrett, the son “…thought it would kill her,” and that he further wanted to keep her around longer because it was “good for him.”
Where I would have been tempted to wring the son’s neck, Jarrett writes that he rarely gets pissed off at family members who stubbornly cling to irrational, nonmedically indicated directives; he assumes they think they’re doing the right thing. But the price, in cases like that of the dying woman just described, is paid in the currency of a patient’s suffering. Few would choose to return to the days when doctors unilaterally determined a patient’s treatment and announced it as a done deal to families. But given modern hospitals’ obsession with their public images and fear of lawsuits, that scale has tipped instead way in favor of what families want instead of what is medically possible or even humane. The last time my father was in the hospital, at the point where he could no longer talk, his doctor told me that he had an infection somewhere in his body. Our conversation went like this:
Doctor: What would you like for me to do?
Me: Would it be painful for my father to undergo tests to determine the nature of his infection?
Me: Would you do it if he were your own father?
Doctor: Absolutely not.
So I took him home and he died a few days later in his own bed.
Jarrett describes himself as a supreme rationalist uncomfortable with “touchy-feely” exchanges (which he admits have bedeviled some personal relationships). He’s an atheist who believes that religions have blood on their hands for all the turmoil and misery they have unleashed on the world. Yet he also notes that “Studies have investigated the relationship between fear of death and faith,” and that “Atheists and those with powerful intrinsic spiritual belief seem to have the least fear of death.” Jarrett muses that the less spiritual may fear death more “Perhaps because they know their internal religious doubts, safely hidden from external scrutiny, cannot be hidden from the putative diety.” Ingrained religious beliefs routinely defeat science. For example, one of my neighbors, an intelligent and highly educated woman, truly believes that she’ll be reunited with her dead husband in Heaven when she dies herself. When it came down to it, her catholic upbringing trumped her advanced degrees.
What to do about all of this? The only real defense is to be crystal clear in your wishes for your own death – both witnessed and in writing. Jarrett offers up his own document as an example. In it he specifies, among other things, that he not be fed if he cannot swallow, not be put on life support, not be resuscitated, and not be given any medication except opiates to ease his suffering. If there were a heaven my RN-mother would be applauding, since these are things she put in her own “do not resuscitate” (DNR) order. About six months before she died she had me drive her to her doctor’s office and the local hospital to personally deliver her DNR, which she also scotch-taped to the refrigerator and the middle of the dining-room table. You can’t fool those in the medical biz; they know firsthand what artificially prolonging someone’s life really looks like. She died at home in her own bed, just as she wished.