At the End of Life, Denial Comes at a Price

Courtesy of TheNewYorkTimes.com  | By Maggie Jones | Photo By Dana Neely/Getty | Originally Published 04.09.2009 | Posted 11.01.2018

 

Like the rest of us, doctors struggle to talk about dying. These conversations with patients occur haltingly, awkwardly and often not at all. But a study published recently in the Archives of Internal Medicine suggests just how costly that silence may be, both in health care dollars and in patients’ suffering.

A team of investigators, led by researchers at the Dana-Farber Cancer Institute in Boston, interviewed 603 patients with advanced cancer. They asked the patients, who had about six months left to live, whether their doctors had discussed their wishes for end-of-life care. The majority — 69 percent — said those conversations had not taken place. And in the last week of life, those patients who had talked with their doctors wound up with medical bills that were on average 36 percent lower — $1,876 compared to $2,917 — than those of patients who did not have end-of-life conversations with their doctors.

Why such a big difference? Dr. Holly Prigerson, a professor of psychiatry at Harvard Medical School and an author of the study, explained that the patients who never talked about their end-of-life.

But wouldn’t aggressive, more expensive care at least offer dying patients a bit more time at the end of life? Not according to this study. The patients not only did not live longer overall, but based on reports from family members and other caregivers, they also suffered more physical distress in the end.

These correlations may not prove a cause-and-effect relationship between end-of-life conversations and outcomes. Still, Dr. Prigerson said, “The study suggests that as costs go up, the misery and suffering index also goes up.”

Why should doctors be so reluctant to talk about dying when patients are terminally ill? Dr. Susan Dale Block, chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute, noted that oncologists don’t want to appear to be giving up on patients by discussing plans for dying. At the same time, family members and loved ones worry that such conversations might upset an already vulnerable patient. And patients themselves often feel their role is to be heroic and to soldier on, against the odds, with yet another treatment or intervention.

According to Dr. Anthony Back, an oncologist at the University of Washington who trains doctors in end-of-life conversations, it is wrong to assume that these conversations rob patients of hope. “People can live with hope and do practical planning at the same time,” he said. “As a family member, you can still be protective of the patient while also thinking ahead: `Of course we’re going to keep hoping, and let’s do this little planning, too.’”

Dr. Back and other experts also suggest that family members and patients pace themselves by having ongoing end-of-life discussions, rather than waiting until there’s only time for one big, emotionally loaded conversation when the patient is near death.

For those in need of conversation-starters with their loved ones, here are a couple: Are there things we should talk about if you get sicker? What kinds of things do you want me to advocate for? If the questions feel too emotionally daunting, try rehearsing them first with a friend.

Dr. Block also encourages families to rely not only on oncologists for guidance — many remain poorly trained in this area, experts agree. Look to hospital social workers and palliative care providers, as well.

As this blog has noted, Compassion & Choices offers free consultations to families and patients through its End-of-Life Consultation Program (800-247-7421). The program’s counselors help patients make decisions about continuing treatment and provide advice on asking health care providers some of the tough questions. The counselors also offer tips on how to speak to providers if the patient’s needs and wishes are not being met.

The best advice need not come just from medical experts, of course. What are your experiences with these conversations — or the lack of them? How often do doctors try to have these discussions before families and patients are ready? When the conversations do take place, are doctors willing to follow through on patients’ wishes? And in those final days of life are we, as friends and family members, also willing to follow through?