"Physicians for a long time have believed these conversations would harm patients and they are difficult and upsetting," Dr. Alexi Wright, an oncologist at Boston's Dana-Farber Cancer Institute said. "Without any evidence that they improved care, I don't think there was a real push to have these conversations."
Wright, who has studied the impact of end-of-life discussions on patients' treatment, has found that patients who have those conversations with their physicians had better outcomes. Those patients and their families were not more likely to be distressed at the news.
For one of Wright's patients, 63-year-old Lois Riley, her end-of-life discussion was a conversation that ended with an agonizing decision -- should she battle her cancer with aggressive chemotherapy with no assurance of prolonging her life, or undergo less intensive chemo that would allow her to spend quality time with her family.
Riley was living the life she always imagined when she received the news her disease would ultimately take her life: a loving marriage, a fulfilling job, and a family complete with three daughters and four grandchildren. She did not plan on the devastating diagnosis of terminal ovarian cancer.
"It made me angry, it made me sad," she said. "I didn't want to hear that, I wanted to hear that I was going to get strong and beat this."
Deciding to change her treatment so she could continue living at home, Riley said, has impacted every facet of her life.
"I've tried to spend quality time with everyone. We do a little bit more of private moments," she said.
The study determined that those who died in hospitals experienced more physical and psychological discomfort than those who died at home. According to a survey by the National Hospice and Palliatative Care Organization, 80 percent of terminally ill patients prefer to live out their last days at home as opposed to a hospital.
"Patients who died at home were less likely to die in pain. They had less psychological suffering and their loved ones saw that their overall quality of life was better," Wright said.
The families of patients also experienced increased psychological stress when their terminally ill loved ones died in a hospital setting. "Family members had a fivefold higher risk of developing post-traumatic stress disorder if their loved one died in the intensive care unit compared to at home," Wright said.
Riley's husband, Jim, said he thinks having his wife at home "has been a positive experience. It's amazed me at her attitude and strength."
Having these conversations early on, when family members and the patient can participate fully, is important, Wright said. "We often make lots of assumptions about what our mothers, brothers, or sisters think, and we're often wrong."
Robert Polanksy, who lost both his parents, can speak to the differences of watching a loved one die in a hospital and at home.
His father, after suffering a stroke, was taken to the intensive care unit. His doctors made every life-saving effort possible, Polanksy said, but his father slipped into a coma and required a respirator to breathe.