"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.
End-of-Life Debate: What's Best?
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.
"Even if he did recover, the doctors indicated that he would not be able to function in any meaningful way and have no real quality of life, Polansky said. "We were quite confident from our knowledge of him as a person that he would not have wanted to live on a respirator."
Polanksy's mother died later, from endometrial cancer that required treatment that made her so sick and weak it greatly diminished her quality of life. She knew that her disease would eventually kill her, and wanted to live out her remaining days as best she could, so she made the decision to stop treatment and die at home.
"She struggled with giving up the chance of living longer, that was a big unknown and no one could know that. It was weighing a doubt against a certainty," Polanksy said. "She could take all the rounds of chemotherapy and still die in a few months. But one thing was certain, had she continued with the chemotherapy, those next few months would have been misery."
Wright said end-of-life conversations can present "a unique opportunity where patients can have better quality of life ... and have better outcomes for their families."
Polanksy agrees, and said his mother's decision to die at home made coping with her death much easier for his siblings and the rest of the family.
"I can say with complete confidence that she completely maximized the quality of life during the days that she had remaining. And if we could all achieve that when we near the point of death in our own lives, that would be quite a success," Polansky said.
Riley is putting off her own end-of-life decisions until they need to be addressed. In the meantime, she is focusing on living life and keeping an open dialogue with her doctor.
"We all have end of life eventually, so I expect that my quality of life that I treasure will be compromised at some point," she said. "My life has been full of wonderful things, and I'd live to have a few more so while I'm still here, I'm going to do everything I can to really live."
When the time comes, it is important for physicians to inform patients of their choices, Wright said.
"You know, we teach them a lot about side effects, we teach them a lot about risks and benefits of procedures, but we don't teach them a lot about the things that really matter a the end of their lives," she said.