Dignity is often the most pressing wish of patients aware of a terminal diagnosis. In a recent study, researchers discovered that less than one-third of doctors surveyed would discuss hospice care early in the course of treating a terminally ill cancer patient. The results of this research appear in a letter published online in JAMA Internal Medicine.

The Cancer Care Outcomes Research and Surveillance (CanCORS), a National Cancer Institute project, includes approximately 10,000 patients, all of them newly diagnosed with either lung cancer or colorectal cancer and recruited from geographically diverse populations and health care systems. Of patients within CanCORS who died of metastatic lung cancer, only about half had ever discussed hospice care with their physician. Based on this finding, Nancy Keating, MD, of the Harvard Department of Health Care, and a team of colleagues conducted a pointed survey within the CanCORS cohort. Close to 4,400 of the participating physicians, all of them caring for terminally-ill patients, were asked just two survey questions.

Private Feelings, Professional Responsibility

First the doctors were asked how strongly they agreed with this statement: “If I were terminally ill with cancer, I would enroll in hospice.” About 65 percent of all respondents (primary care physicians, surgeons, oncologists, radiation oncologists, and other specialists among them) reported strong agreement while 21 percent indicated they agreed "somewhat." In particular, female doctors, those who cared for more terminally ill patients, and those who worked in managed care settings were more likely to indicate strong agreement. Surgeons and radiation oncologists were less likely than primary care physicians or oncologists to do so.

Next, the doctors were asked when they would discuss hospice care with an asymptomatic patient who they estimated had only four to six months to live: right away, when symptoms first develop, when no more options are available to treat the cancer, when the patient is admitted to the hospital, or when the patient or family asks about hospice care. Less than one out of three (27 percent) indicated they would discuss hospice care with the described patient "now." The choice of 16 percent was to wait until symptoms appear; 49 percent indicated they would discuss the matter when therapeutic options were no longer available; four percent said upon hospital admission; and four percent also said when asked. Significantly, of those physicians who strongly believed they themselves would enroll in hospice care, only about 30 percent said they would discuss hospice care with the patient 'now.’

"Having timely discussions with terminally-ill cancer patients to establish goals for end-of-life care is important to maximize the quality of patient care," Garrett Chinn, MD, of the Massachusetts General Hospital Division of General Medicine, stated in a press release. "A lack of knowledge about guidelines for end-of-life care for such patients, cultural and societal norms, or the continuity and quality of communication with patients and family members are … factors that might act as barriers preventing physicians from 'practicing what they preach' in end of life care."

Hospice Care in the U.S.

In 2010 more than 3,500 hospice providers were caring for 1.1 million Medicare beneficiaries. This amounts to an increase of 53 percent over 2000. Despite this growth and despite the fact that 98 percent of people live within close range of a hospice, more than half of patients who are eligible for hospice care die without receiving it. In an article published last year in Health Affairs, researchers surveyed the enrollment policies of 591 U.S. hospices.

To assess the policies of each hospice, the researchers asked providers whether or not they enrolled patients “who are receiving total parenteral nutrition (intravenous feeding),” “who are receiving tube feeding,” “who are receiving chemotherapy,” “who are receiving transfusions,” “who might need an intrathecal catheter,” “who wish to continue to receive palliative radiation,” and “without family caregivers.” These items were chosen in part because they are relatively common in patients who might benefit from palliative care. Additionally, some of the treatments, such as chemotherapy and radiation, perform dual roles as curative and palliative care and may be high-costing and person intensive.

Almost one-third (29 percent) of hospices described themselves as having an open-access enrollment policy and nearly one-third (30 percent) of those hospices had no restrictions on enrollment. Larger hospices were significantly more likely than smaller hospices to have no restrictive enrollment policies. However, 78 percent of hospice respondents had at least one enrollment policy that may restrict access. Open-access policy hospices were found to be significantly less likely to restrict access to patients who are receiving total parenteral nutrition (42 percent versus 59 percent), who are receiving transfusions (28 percent versus 43 percent), who might need an intrathecal catheter (24 percent versus 34 percent), and who wish to continue to receive palliative radiation (23 percent versus 32 percent).

“Patients with serious illnesses may desire complex palliative treatments, but few hospices will enroll patients with these complex needs,” wrote the authors. “Only one-third of hospices will enroll patients who are receiving chemotherapy… and only two-thirds will enroll patients who wish to continue to receive palliative radiation. Given that these are highly used services for patients who are seriously ill, our findings suggest that hospice providers’ own enrollment decisions may be an important contributor to previously observed underuse of hospice by patients and families.”

Sources: Chinn G, Keating N, Liu P-H, et al. Physicians’ Preferences for Hospice if They Were Terminally Ill and the Timing of Hospice Discussions With Their Patients. JAMA Internal Medicine. 2013.

Aldridge C, Barry CL, Cherlin EJ, et al. Hospices' enrollment policies may contribute to underuse of hospice care in the United States. Health Affairs. 2012.