Despite emphasis on the importance of early referral, patients with advanced disease are receiving palliative care very late in their illness trajectory, found a recent study from the United Kingdom.1 The median time from referral to death for 42,758 decedents was 48 days. Significant differences in referral to death days were found for those with cancer (53 days) and noncancer (27 days).
“Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death,” says Matthew Allsop, PhD, the study’s lead author and a researcher at England’s Leeds Institute of Health Sciences.
Reorientation of Services Necessary
The findings suggest a need for reorientation of services to both older age groups and noncancer conditions, says Allsop. Both groups are associated with limited duration of hospice-based palliative care prior to death.
“As people are living longer with an increased illness burden, many patients will need primary, secondary, and specialist palliative care,” adds Allsop. Efforts to reduce hospitalization in the last months of life, and to support preferences for dying at home instead of the hospital, are resulting in increased out-of-hospital demand for palliative care.
Thus, says Allsop, “it is particularly important that community-based specialist palliative care consider how provision might match demand.”
Late Referrals Are Norm
Camilla Zimmermann, MD, PhD, FRCPC, says results would be similar in the United States and Canada. “Unfortunately, referrals to palliative care continue to occur late in the disease course, across countries and settings,” says Zimmermann, head of the palliative care program at the University Health Network and the Princess Margaret Cancer Centre in Toronto.
For noncancer patients, late referrals are partly due to difficulty prognosticating. It is always hard to predict how long a patient will live, and physicians tend to be optimistic. “For patients with cancer, it is also getting harder to predict survival,” says Zimmermann, adding that newer, targeted treatments and immunotherapies are helping patients live longer.
However, the biggest reason for late referrals is fear and stigma attached to palliative care, says Zimmermann. Patients and even healthcare providers assume that consulting palliative care means death is imminent.
In fact, says Zimmerman, it helps control symptoms and provides much-needed support: “Ethicists can play a role by explaining to patients and clinicians that palliative care can and should begin early.”
1. Allsop MJ, Ziegler LE, Mulvey MR. Duration and determinants of hospice-based specialist palliative care: A national retrospective cohort study. Palliat Med 2018; 32:1322-1333.
• Matthew Allsop, PhD, Faculty of Medicine and Health, Leeds Institute of Health Sciences. Email: email@example.com.
• Camilla Zimmermann, MD, PhD, FRCPC, Palliative Care Program, University Health Network, Toronto, Canada. Phone: (416) 946-4501 ext. 3477. Email: firstname.lastname@example.org.