In July, my mother died six weeks short of her 89th birthday. It was the culmination of her third hospitalization in seven months, and she had been oxygen-dependent, wheelchair-bound and sight-impaired. Despite her health problems, up until her death she pushed the limits of her increasingly constrained life, going out every day — to shop, to enjoy museums, restaurants and concerts, and to teach disabled children. True, the efforts of my sister and her other caregivers made this possible, but my mother would not willingly accept compromises to her life. She was fully engaged in the business of living, which, though tiring and exasperating at times for her family, was something to be admired.
She had an advance medical directive that provided clear instructions: No CPR. No permanent intubation. No permanent feeding tube. I understood this and fully agreed with it. But this document provided no guidance on temporary measures akin to life support that might enable her body to recover and, more important, to provide clarity on the question of whether she could ultimately sustain life without this support. It failed in its essential purpose when we needed it most.
In February, my mother had been hospitalized for pneumonia, including five days in the intensive care unit. She visited the emergency room in May for a possible pneumonia infection, then returned in July for the same reason. Clearly, a pattern was developing.
I suspect it was this pattern of more frequent problems, her age and her general frailty that led the hospital’s medical staff to unite behind the view that her “time had come” over the summer. This time, at every turn, they resisted aggressive procedures that were identical to treatment she received in February, depriving her of the opportunity to test the inevitability of her death. And I was denied the comfort and certainty of knowing I gave her that chance.
Their opposition was based on a subjective judgment related to the quality of her life. But they could not quantify the decline she would experience in that quality if she recovered, other than to say that it could be between 1 and 20 percent. They made statements with the certitude of the converted: “Your mother’s life is coming to an end.” “Your mother is ‘actively dying’ ” (a phrase without clear definition). She would live eight days beyond those statements. All along, the constant message from the palliative-care staff was that I had to accept a conclusion made inevitable by their judgment and actions.
After saying definitively that my mother had “hours to live, no more than a day,” her doctors increased her morphine, decreased her oxygen and eliminated nutrition and hydration. Stunningly, I was told emphatically that I had “no more to say about this” because my mother was “suffering” and her death was “imminent.” Yet she lived five days more, sustaining her vital signs and oxygen saturation almost until the end. They were right when, on her last day, they said that they weren’t God and couldn’t know when she would die. Unfortunately, until then their actions and pronouncements had implied that their opinions were rooted in some unquestionable Divine Truth.
In hindsight, it is painful to recall how I succumbed to pressure to see things their way. The decisions and discussions were clouded by emotion, family dynamics, uncertainty and incredible sleep deprivation, and my mother’s medical directive was no help. I can’t change what happened, but I would like to offer some advice to anyone else who has been given this awesome responsibility by a parent or other loved one.
Above all, be prepared to question and to challenge, and do not accept on face value all that you are told. I had the benefit of a wife who is a former ICU nurse and who had access to doctors who helped me to understand my mother’s care and to raise questions. It is important to find a source of independent advice who can translate what you are being told and provide you with appropriate questions to ask. This will help avoid the kind of lingering doubts that now creep into my sleep every night. I can only imagine what happens in situations where the family has less education or limited fluency in English.
Second, remember that an advance medical directive is a general statement that cannot anticipate the circumstances you will face. When does a procedure that may provide short-term relief and support for healing become an artificial sustaining of life and prolongation of death? How can you attain a level of certainty that your loved one is truly unable to live absent permanent measures? I found myself lost in the awful gray areas unanswered by my mother’s directive. It would have helped to have some guidance on specific possible interim and time-limited measures, such as temporary intubation and nutrition.
“What would your mother want?” Over 11 heart-wrenching days, it seemed as though I was asked this question hundreds of times. I honestly wasn’t sure. She loved life but hated her growing dependence on others. Would she have traded additional limitations for a chance to see her grandchildren again? I will never know. She wasn’t given the chance.