“Once I’d seen the transformation of elder care under way, I was struck by the simple insight on which it rested, and by its profound implications for medicine, including what happens in my own office,” surgeon and author Atul Gawande writes in his latest book, Being Mortal: Medicine and What Matters in the End.
Through his tours of supportive housing for older adults; his discussions with older adults, families and experts; in treating his own patients; and, most movingly, during his father’s battle with cancer, Gawande’s appreciation of this “simple insight” grows: “As people’s capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives—resisting the urge to fiddle and fix and control.”
For older adults no longer able or willing to live on their own, a growing number of innovative long-term care options are looking beyond the “medical imperatives” to help residents “sustain the value of existence.” Gawande describes several, including two pioneered by Dr. Bill Thomas.
In the early 1990s, Thomas became the medical director of a nursing home in upstate New York. While the facility offered residents a wide range of activities, Thomas was concerned that it lacked life. To combat “boredom, loneliness and helplessness,” he brought in plants, cats, dogs and birds, among other changes. Residents took care of the plants, named the parakeets and helped care for all the animals.
The changes were profound. “People who had been completely withdrawn and nonambulatory started coming to the nurses’ station and saying, ‘I’ll take the dog for a walk,’” Thomas tells Gawande.
Studies showed that what’s now called the Eden Alternative approach reduced residents’ prescriptions, including for antipsychotic medications, and even decreased death rates relative to standard nursing homes.
A decade later, Thomas decided to redesign nursing homes from the ground up. His Green House model is based on small, homey communal living spaces, where residents share meals around a single large table and caregivers focus on just a few residents each.
“As a result, they had more time and contact with each resident,” writes Gawande, “time to talk, eat, play cards, whatever.” (Our next issue will report on research of the Green House model.)
Perhaps at no time is “the urge to fiddle and fix and control” greater than as patients near death.
In Being Mortal, Gawande writes candidly about how easy it is for health care professionals to miss or avoid opportunities to have nuanced conversations with seriously ill patients and their family. He realizes that his default mode—to be “Dr. Informative,” presenting facts and options and asking patients what they want to do—is inadequate when the choices are complex and involve serious trade-offs.
He finds that providing the best care towards the end of life requires new perspectives and skills.
“The difference between standard medical care and hospice is not the difference between treating and doing nothing,” a hospice nurse tells Gawande. “The difference is in the priorities.”
A palliative care specialist discusses her approach to helping terminally ill patients navigate their “many worries and real terrors” and determine what matters most to them, so that she can suggest an appropriate course of care. “A family meeting is a procedure,” she says to Gawande. “It requires no less skill than performing an operation.”
What roles do and can nurses play?
“Nurses play especially vital roles in care at the end of life,” the Institute of Medicine states in its 2014 report Dying in America. “Coordination, communication with families, collaboration, and patient advocacy all characterize nursing—in palliative care, in end-of-life care, and in general.”
The report acknowledges the well-established nursing specialty certifications in palliative care and the importance of certified nursing assistants, who “help implement care plans, identify impacts on quality of life, [and] document patient and family responses.”
Dying in America recommends that “all clinicians across disciplines and specialties who care for people with advanced serious illness should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management.”
It’s not surprising that much of the information in Being Mortal seems new to Gawande. Medical schools provide instruction on palliative care, but usually as part of another course, according to the report. Many baccalaureate nursing schools don’t offer much more instruction on death and dying.
In 2006, University of Wisconsin–Madison School of Nursing Assistant Professor Karen Kehl, PhD, RN sought to define what contributes to a “good death,” based on studies including patient, nurse and physician perspectives, as well as sociological analyses.
The hallmarks of a good death, according to Kehl, include being in control, being comfortable, having a sense of closure, affirming the value of the dying person, trusting care providers, honoring beliefs and values, minimizing the burden on the family, optimizing relationships, involving family, leaving a legacy, recognizing and accepting impending death, and having an “appropriate” death. The appropriateness is affected by the person’s age and condition, and whether “excessive use” of life-prolonging medical technologies is avoided.
Judging by Being Mortal, Gawande would agree with Kehl’s conclusion: “The concept of a good death is fluid and highly individual. … It is critical for health care professionals to assess the patient’s and family’s wishes and choices.”
Atul Gawande photo by Tim Llewellyn