End-of-life: hospice or hospital? What family caregivers say

Family caregivers prefer hospice care that focuses on comfort their loved ones who are dying of cancer, as opposed to more aggressive management in the intensive care unit of a hospital “despite growing concerns that this reflects poor-quality care”, according to a new study. “Among family members of older patients with fee-for service Medicare who died of lung or colorectal cancer, earlier hospice enrollment, avoidance of ICU admissions within 30 days of death, and death occurring outside the hospital were associated with perceptions of better end-of-life care,” Dana-Farber Cancer Institute researchers wrote in the Journal of the American Medical Association. Fifty-nine percent of family of members of patients who received hospice care longer than 3 days reported “quality rating of “excellent” for end-of-life care.”

The researchers interviewed 1146 family members of Medicare patients in the Cancer Care Outcomes Research and Surveillance study who died by the end of 2011. “This is really a family-centered measure of what happens at end of life,” researcher and a gynecological oncologist in the Susan F. Smith Center for Women's Cancers at Dana-Farber and study author Dr. Alexi Wright told CBS News. “It's increasingly clear how and where patients die have an impact on patients' dying experiences and how families remember them.” The researchers concluded that “these findings are supportive of advance care planning consistent with the preferences of patients.” “I think our findings are a powerful argument for the importance of advance care planning. You can talk about hoping for the best and preparing for the worst, but unless patients and their families have the information they need to make choices, it's hard to ensure that patients will get care that is consistent with their wishes, which is the most important thing,” Wright said.

While there is a minority that refuses to discuss or even think about death, research indicates that most dying cancer patients are willing to talk about it. “Many studies show that about 80 percent of patients with incurable cancers do want to have conversations and want to know how long they have to live. These conversation need to happen early, not in 11th hour, and these conversations change over time -- desires change over time. It's not a one-time conversation. It's a process of repeated conversations and about where things are,” Wright said. “Interventions should focus more on increasing early hospice enrollment and decreasing ICU admissions and hospital deaths. The best way to do this is to encourage patients, physicians and family members to talk about their end-of-life wishes.”

This sentiment among family caregivers is echoed in a different study also published in JAMA. According to researchers, cancer patients are least likely to die in the Hospital in the United States compared to England, The Netherlands, Belgium, Germany, Norway, and Canada. “When I tell people the results -- we have the lowest deaths in the hospital and we're not the most expensive – there isn’t a single person who isn’t surprised and shocked,” head of the medical ethics and health policy department at the University of Pennsylvania Perelman School of Medicine and lead author Dr. Ezekiel J. Emanuel said. “We’ve spent two years going over this data meticulously precisely because we were shocked.”


% of cancer patients hospitalized over their last 6 months of life

% of cancer patients over age 65 who die in hospitals







The Netherlands












United States




Perhaps it is a sort of ‘future shock.’ “In the early 1980s, more than 70 percent of U.S. cancer patients died in hospital,” Emanuel wrote. However, recognition of preferences for home-based care, the right of dying patients to refuse medical interventions, economic pressures to reduce costs, and expanded hospice care were cited by the researchers as factors that have given end-of-life care momentum. Furthermore, medical supplies for home care are widely available at medical supply stores. Notwithstanding that, “excessive utilization of high-intensity care near the end of life, particularly in the United States relative to other developed countries, underscores the need for continued progress to improve end-of-life care practices,” the authors said in a journal press release. “Clearly, I think, these data suggest the focus now has to be on stopping using high technology that patients don't want. Almost no patient says, 'I want to die in the ICU,' and yet we're admitting over 40 percent of patients to the ICU,” Emanuel added. “This isn't about death panels, this is about not doing things patients don't want. Patients don't want these high-tech things in the last month of life.”

Related: End of life caregiving: Hospice care versus palliative care