About 25 older residents turned out for a book discussion at Hildreth House June 19. But this wasn’t an ordinary book—it was Dr. Atul Gawande’s “Being Mortal: Medicine and What Matters in the End”—and the discussion wouldn’t be about ordinary things, either. Rather, it would be about a subject of great magnitude: the importance of patients, not doctors, being in control of the end of their lives. As hard as talking about death can be, Tuesday’s participants spoke openly about their feelings and seemed to find resonance in one another’s ideas and experiences. Council on Aging outreach worker Charlotte Winchell organized the event, along with Kathy Benson, a social worker for Nashoba Nursing Service & Hospice. Winchell plans to hold more book discussions in the coming months.
Winchell started the meeting by showing sections of a “Frontline” interview with Gawande, who is a surgeon at Brigham and Women’s Hospital and whose book was published in 2014. As a practicing doctor, Gawande was intent on “fixing” his father when he became ill, because that’s what doctors have been trained to do. But as his father’s health continued to deteriorate, Gawande learned how important it was to ask his father what he wanted for his own death. His personal experience with his father informed how Gawande practiced medicine from then on. “Being Mortal” is his documentation of those experiences.
In his book, Gawande urges his patients to plan for the end of their lives earlier rather than in the midst of a crisis. He’s heard too many people say, “We should have started earlier to try to make the end better.” He believes doctors often inflict more harm trying to cure a patient than they would by helping the patient to face mortality and live as well as possible within the circumstances. A doctor should facilitate conversations about choices and not hold out a hope that is not realistic. The doctor should ask what the patient understands about his or her disease and what the priorities are for the patient. What sacrifices is a patient willing to make and what is he or she not willing to forgo?
He cites numerous case studies that follow the illnesses people have, their medical options, and the way Gawande helped them make a choice for the end of their lives. For one patient, the bottom line was to be able to sit in a chair and eat chocolate ice cream. For a young mother, it was important to continue chemotherapy even though she became too weak to even hold her baby in the last days. A man who chose to die at home said his last week of life was his happiest, spending quality time with family and friends. Often a patient’s wishes are at odds with those of family members; the former wants autonomy and the latter safety for the one they love. Only conversations ahead of time can ensure that the patient’s choices are honored, says Gawande.
Benson spoke about people needing to understand the difference between quantity of time and quality of time. She said seniors don’t realize how much hospice does, whether it is in-home services or those in a hospice house.
Winchell and Benson had planned to split people into smaller groups to better facilitate discussion of the book, but once a general discussion began there was never a good place to switch. In commentary on the book, one participant criticized it by saying that all the case examples show patients whose cognition has not been impaired and who are therefore capable of understanding and making choices. Others in the room seem to have felt the truth of this but were not inclined to pursue the issue. Instead, the conversation turned to more practical matters such as having a living will and a health care proxy. Someone pointed out that a different form, Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST), is signed by physician and patient, and it has detail and authority that a living will does not.
Someone commented that adult children often do not want to have the conversation about their parents’ end of life. A woman responded that she has had the conversation with her kids and grandkids because for her, “it was crucial.” Another commented, “Leaving instructions is a gift to the living.”
An issue of concern was staying in one’s home versus moving to a facility. People offered examples of both good and bad experiences they have had with family members. “It’s the waiting-to-die phase that worries me,” said a participant. “I’m more scared of the next move than I am of dying.” In speaking about the difficulty of finding a continuing-care retirement community, a woman lamented, “You have to figure out what you need before you need it.”
Winchell told the group that the two COA outreach workers can help people figure out how to stay where they are, if that is their choice. This statement prompted some pushback, with one man saying that the COA needs to address the problem of lack of services on weekends and to build a model of what services are needed for seniors and take it to town officials. There was consensus that the town should stop relying so heavily on volunteers and raise the budget for senior services.
Later, in an email, Winchell said she was “pleased with both the turnout and the open sharing.” The meeting highlighted for her that “folks want to talk about aging and end-of-life issues, particularly in a supportive setting.” She said she worried that people may have wanted more discussion on the book itself. That will be the goal for future discussions of books relevant to senior issues, Winchell said.