Killer Health Care

The current broken state of health care in the United States weighs on me every week when I go to the hospital and watch thousands of dollars being spent on people who have no quality of life and no chance of regaining any. I do hope that every healthcare professional in the country reads two recent articles that highlight the problems and offer practical and sensible solutions.

Katy Butler brought the issue close to home with “What Broke My Father’s Heart” about the havoc caused by a pacemaker that specialists insisted was needed. The article is a real indictment of the medical appliances industry – and of the way medicine is practiced on the elderly.

At the very end of the struggle, her father was a patient in the hospice unit where I offer Reiki once a week. I see people in his condition every time I visit and I wonder about a system that will allow patients to linger when the merciful thing is simply to make them comfortable. Whenever I see a blue light on the door I feel sadness for the family but relief for the person who is no longer struggling for breath or rigid from pain that even morphine can’t mask, or so comatose that they haven’t recognized their loved ones for days or weeks.

One sad and frightening aspect of Butler’s father’s slow decline (“The pacemaker bought my parents two years of limbo, two of purgatory and two of hell.”) involved the lack of input from the family doctor who knew the patient best and had been treating him for many years. This doctor was against the insertion of the pacemaker but wasn’t consulted. A specialist more or less pressured her mother into agreeing to the procedure.

In a way this story has a happy ending because her mother, who became ill not long after  the father’s death, was able to enforce her DNR mandate and die on her own terms, not on the doctors’.

Dr. Atul Gawande tells a story even more harrowing in “Letting Go” because it involves a young woman. The decisions that eighty-plus year olds or their families make about their care cannot and should not be the same as decisions made by people in their twenties and thirties who have a lifetime’s worth of living ahead of them. Unfortunately the thirty-four year old with inoperable lung cancer underwent harrowing rounds of chemo, and later a dose of radiation. None of the chemo drugs proved effective, and most produced unspeakable side-effects. She ended her life, not at home as she wished, but in a hospital bed. Her family doctor tried to intervene after she had been returned to the hospital. He succeeded at least in convincing the family that she might recover from the pneumonia that precipitated yet another crisis but that the cancer had riddled her body – lungs, liver, brain, and nothing was to be done about that.

Gawande offers lessons that he learned from this patient and others. It was refreshing to see a doctor revise his opinion of hospice. It’s not merely “a morphine drip” as Gawande believed. Whether the patient is at home or in the hospice care unit, its goal is to achieve what everyone, ill or well, should want: to live in the fullest extent of the moment right now and for every moment that we have left. He also paints a dismal portrait of doctors (including him).  Some find themselves nearly mute on the subject of about death and dying. Others hold out false hope for example, focusing on the curable thyroid cancer while avoiding discussion of the incurable lung cancer. In sum, they can’t admit the truth to their patients.

Both Butler and Gawande lambaste the ignorant people who claimed that healthcare reform included “death panels,” when in fact the proposal would have provided Medicare compensation for doctors to talk to their patients about the options for end of life care. Based on the examples that both writers offer, even when patients commit their wishes to paper, family and medical staff often ignore them and provide treatment that the patients don’t want. More of these conversations between doctors and patients are sorely needed now. It will become an emergency in another few years when large numbers of my generation overwhelm both traditional and non-traditional providers. Healthcare professionals will not have time for these conversations unless they receive compensation.