A new study by Harvard Medical School and Dana-Farber Cancer Institute researchers found that, although cancer patients are enrolling in hospice programs at higher rates, their consumption of intensive and expensive hospital services near the end of life has paradoxically increased as well.
The study, published in the October issue of the Journal of Oncology, examined the Medicare records of nearly 7,000 ovarian cancer patients between 1997 and 2007 and found that hospice care, traditionally thought of as a substitute for hospitalization, has in reality become more of an “add-on” to end-of-life intensive care.
“What it looks like from our study is that patients are getting intensive care up until the very end of their lives and then being referred [from the hospital] to hospice very close to death,” said Alexi A. Wright, lead author of the study and an assistant professor at HMS.
The study paints a chaotic picture of the final months and days of these cancer patients, according to Wright, and highlights the need for making substantive, well-informed end-of-life care plans while in good health.
“If we were able to figure out what patients’ preferences are earlier by having real conversations about what matters to people, there’s pretty good data to suggest that people would choose less intensive care and would have a lot more peaceful end-of-life experience[s],” Wright said. Patients, she added, would be able to spend more time with their families and plan for the future, including their families’ lives without them.
These early conversations, according to study co-author and HMS assistant professor Laura A. Hatfield, need to focus on understanding a patient’s prognosis.
“To know that this is a terminal illness in the first place is step one,” she said. “And that is not happening in many cases. Doctors seem reluctant to discuss prognosis—especially of a terminal illness—with their patient.”
Wright agreed, adding that patients might also consider enrolling in hospice early to maximize their quality of life and physical comfort, as well as that of their caregivers.
“When you use hospice as an add-on service it doesn’t really do what it’s designed to do, which is to be there and deliver care in a patient-centered way, in the patient’s home,” Wright said. In a previous study, Wright and a research team found that people who enrolled in hospice for less than a week did not experience any improvements in their quality of life near death.
Study co-author Craig Earle also noted that early enrollment in hospice would mean patients could benefit more from features like “symptom control,” which allows care providers to focus on minimizing symptoms, rather than attempting to cure terminal illnesses.
The big takeaway, according to Wright, is that, “the earlier people can make plans with their families and their physicians, the more likely it is that they can control the kind of care that they receive at the end of life.”