Almost 20 percent cancer patients wait to enroll in Hospice until their last three days of life. 

Their courage and determination is admirable, Hospice is palliative care, but it shortchanges both patients and their families and a new paper seeks to create a profile for people like to be late admissions.

The team examined de-identified data from electronic medical records of 64,264 patients in 12 hospices in the Coalition of Hospices Organized to Investigate Comparative Effectiveness network from January 2008 to May 2013. Hospices spanned 11 states, including Pennsylvania, with censuses ranging from 400 to 1,700 patients per day. Of those 64,264 patients, 10,460 had a hospice stay of 3 days or fewer.

The study found several characteristics associated with hospice length of stay of three days or less, including being male, married, younger than 65, and of nonwhite ethnicity. Also, patients with blood cancers and liver cancer were more often than those of oral cancer to be among those admitted within the last three days of life.

Findings indicated that Medicaid and uninsured patients who enrolled in hospice typically did so earlier in the course of their illness than those with commercial insurance or Medicare. The researchers suggest these patterns illustrate which patients may be less able to afford out-of-pocket expenses associated with prolonged aggressive or experimental treatment, or that they may receive care in oncology practices that differ in their aggressiveness of care.

"Waiting until the final days of life to begin hospice can shortchange patients and their families – skipping over many benefits of hospice care and limiting the opportunity to improve patients' quality of life during this stressful time," said David Casarett, MD, a professor of Medicine and director of Hospice and Palliative care at Penn Medicine and co-author of the paper in
the Journal of Clinical Oncology. "Our findings point to some reasons why patients may seek hospice care so late in the course of their illness, which we hope will enable us to improve transitions to hospice at a more beneficial point in their care."

Previous studies found that patients with blood cancers enter hospice less often, overall, than other cancer patients, but this study also examined timing of entry and found those with blood cancers entered hospice later than other cancer patients. The authors theorize this may be due to a dependence on blood products, as hospice typically does not cover blood transfusions, or pursuit of bone marrow or stem cell transplants late in the disease course, which can delay hospice. Also, those with blood cancers – especially patients who've undergone bone marrow transplants and are susceptible to life-threatening infections -- may have a more abrupt decline towards end of life than those with other cancers.

The researchers say the marriage association may be because marriage can provide caregiving structure – such as help with transportation to medical appointments and assistance with medication -- and emotional support and motivation to support continued treatment. And, they note, some married patients may prolong treatment for their spouse's sake.

This study comes amid the National Quality Forum and the American Society for Clinical Oncology's joint endorsement of quality measures for end of life care in cancer patients. Eventually, oncology practices and health systems may be measured and reimbursed in part on their percentage of patients who enroll near the end of life and be linked to pay-for-performance initiatives.

With further study, the Penn researchers suggest that these findings could aid in identifying at-risk patient populations for targeted interventions promoting earlier hospice discussions.

"It is essential to optimize transitions to hospice and make it easier for patients and their loved ones to access this care," said the study's lead author, Nina R. O'Connor, MD, assistant professor of clinical medicine. "Better integration of palliative care into cancer treatment – even that which is provided with curative intent – is one strategy that may be helpful. By helping patients to access care that improves their quality of life along the spectrum of their illness, we are able to create a more natural pathway to hospice care when and if that option becomes appropriate."