“Are you saying, doctor, that mom’s not getting better?” Eleanor asked.
“I’m afraid so.” I replied.
“Someone should have mentioned this to me before.” she said, before returning her gaze to my shoes.
We were talking about Eleanor and Roger’s mother, Bertha, who had been hospitalized in our intensive care unit for three weeks. Bertha, 67, had been admitted with an exacerbation of congestive heart failure. Despite everyone’s best efforts, she’d steadily grown sicker. A divorced mother of two, she was an avid needle pointer, a retired office assistant, and an aficionado of high-end cigarettes. “Mom was a proud woman – she never let anyone down,” offered Roger.
Every day, nearly 12,000 Americans are admitted to intensive care units for any number of life threatening conditions. In the ICU, doctors and nurses work tirelessly to help patients breathe, sustain blood pressure, and eliminate infections. Through years of training, we learn to ‘fix’ many medical problems – and we derive tremendous satisfaction when previously ill patients ‘get better’ because of our efforts.
Yet missing from training is how to handle the “what-ifs.” What if the lungs and heart do not recover? What if the infection cannot be treated? What if, despite state-of-the-art, intensive, aggressive therapies, our patients do not ‘get better?’
For complex reasons, we feel soothed, even relieved, when committing patients to kidney dialysis for the rest of their lives – after all, we are doing something. But we often feel uncomfortable when dialysis fails, or asking, ‘Should dialysis be started at all?’
Studies show that physicians avoid tough conversations for a variety of reasons. Some doctors insist they are too busy, pleading that competing pressures prevent them from meeting with patients and families. Others have difficulty recognizing (and admitting) when medical treatments are failing. Still others fear meetings with families because of the potential for litigation. “Oh, I dread those conversations – I just avoid them when I can,” confessed a colleague of mine.
But it turns out a common theme emerged from those studies: doctors simply don’t know how to hold serious discussions with families. They acknowledge never having witnessed such conversations in training, and feel unskilled when delivering bad news. Compounding the problem are the financial pressures felt by physicians practicing in our era of economic uncertainty. Our current health care system rewards us to do things to patients – we’re disincentivized to take care away.
Family meetings share several commonalities – they often take place away from the bedside, in small conference rooms lined with fading wallpaper and modular couches. Everyone is seated (standing is frowned upon.) Families often appear glassy-eyed from a combination of tears and sleeplessness. Many families argue that little information has been provided, but nearly all acknowledge that ‘things are not going well.’
Even though families witness their loved one growing increasingly ill, few physicians feel comfortable confirming the unthinkable: that Mom will not walk again, Dad will not wake-up again, Jimmy will never fish, laugh, or say “I love you” again. In many ways, doctors skirt around the big picture, preferring to emphasize issues that can be controlled. This translates into physicians sharing only small pieces of information, such as: “We have corrected her magnesium level,” or “the tumor has shrunk by 14%.”
When we enter the meeting room, our task is enormous – we must empathetically break bad news. Families often listen silently as we steer them past magnesium levels and CAT-scan readings. After sifting through the details of the hospitalization, we speak about the transformation that the person is making. We emphasize that their loved one is entering a new phase – the last phase of their life, in which meaningful recovery is not possible. We help families rework their sense of hope – shifting from a hope for cure to a hope for comfort and peace as death approaches.
But what strikes me as most uncanny is that the average family meeting lasts 28 minutes. That is, the sum-fate of a person’s entire life is often redefined within a span lasting about the same amount of time as a TV sitcom.
Eleanor and Roger had many questions for me:
“What will happen to our Mom?”
“Will she die today?”
“What should we expect next?”
Such questions lack clear-cut answers – prompting me to share in the mystery of Bertha’s dying process. Still, after many tense (and several light-hearted) moments, Eleanor and Roger thanked me for my candor. They remarked: “We’re glad you made the time to meet with us. Mom deserves better than to spend the rest of her days in the ICU.”
As I left the meeting, I thought about several of today’s issues faced by the American health care system: the need to preserve dignity and proffer honest communication; the problems of ineffective care and runaway costs. Our family meeting had touched upon all of these issues, and set the stage for Bertha to die peacefully, as she had wished. I checked my watch: our meeting had lasted twenty-seven and a half minutes.
Jeffrey Alderman is Associate Professor, Division of Palliative Medicine, University of Oklahoma School of Community Medicine.
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