With hospice care, 'You're redefining hope'
"This is a modern tragedy, replayed millions of times over," writes surgeon and Harvard Medical School professor Dr. Atul Gawande near the end of his powerful new book, "Being Mortal, Medicine and What Matters in the End."
It's not death that he's writing about. It's our refusal to make room for it within medicine.
The influential New Yorkerwriter and physician will be speaking at a sold-out event in St. Paul on Friday. The appearance is sponsored by the Minnesota Network of Hospice and Palliative Care, a regional alliance representing 67 facilities in the state offering end-of-life care for patients with terminal illness.
The "modern tragedy" Gawande describes, however, comes in reference to the heartbreaking story midway through his book, of a patient named Sara. A young mother with inoperable lung cancer, Sara's cancer had spread, she had not responded to multiple treatments, she was weakened by four rounds of chemo and hoping to qualify for a trial of experimental drugs.
She hoped against hope for a miracle, but did not want to die in the hospital. Yet when pneumonia set in and without a plan to stop seeking even the smallest of chances, Sara ended up back in the hospital and on a ventilator. Her final words were a mumbled response to an oddball comment. "I can't think of a single funny thing to say," her friend had remarked. Sara replied, "Neither can I." Then she became too sick to talk any more.
"Spending one's final days in an ICU because of terminal illness is for most people a kind of failure," Gawande writes. "You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said good-bye or 'It's okay' or 'I'm sorry' or 'I love you.'"
The physician-author's visit to the region highlights a growing public awareness of the vital conversations needed to make those moments possible — experiences most patients tell their doctors would add meaning to their life. Few people realize that hospice also adds days to your life as well: According to a 2007 study in the Journal of Pain and Symptom Management, hospice patients studied lived an average of 29 days longer than those with similar conditions who did not have hospice care.
Consequences of care
Clearly, the movement towards end-of-life discussions is a drastic departure from the status quo in medicine. There is always another procedure that can be offered in the American health care system, no matter how small the odds.
Many patients will want to take up those offers, but there is an unaddressed cost to these choices in opportunity lost, according to Gawande. With each attempt to resuscitate a terminally ill patient or implement aggressive measures for an illness with a poor prognosis, the odds that a person will spend his or her final hours tethered to machines and cut off from family and familiar settings only increases.
For registered nurse Beverly Haynes, executive director of Seasons Hospice in Rochester, one of the most rewarding accomplishments in her 18 years at Seasons was helping an elderly local patient and area farmer leave the hospital and return home to die in his living room, taking in the view from a temporary hospital bed set up in his living room in front of the picture window.
"He died looking out at the land where he was born, lived and worked his entire life," she said.
"People with serious illness have priorities besides simply prolonging their lives," Gawande writes. "Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.
"Our system of technological and medical care has utterly failed to meet these needs and the cost of this failure is measured in far more than dollars," he said.
"I think one of the myths of hospice care is that you've given up hope," said Haynes. "You're redefining hope. You may be thinking about a peaceful death."