A wish among bereaved families of hospice patients is that their loved one had been referred to hospice earlier, new research has found. Researchers from the Dana Farber Cancer Institute surveyed 140 bereaved family members to evaluate their experiences of the clinical care their loved one received and the perceived effect this care had on their grief.
“One of the things that certainly came out — and from my experience with bereaved families — is wishing they had had an earlier hospice referral and longer length of stay,” said clinical psychologist and researcher Sue Morris, director of bereavement services at Dana-Farber Cancer Institute.
Though the study didn’t assess patients’ understanding of hospice, Morris said she believes that families also need better education when it comes to understanding the role of hospices and the care they provide.
“We need to give people clear information about the role of hospice when they actually are enrolled. A lot of people don’t really understand what hospice actually entails. If there’s clear information about what the role of hospice is, how often they’ll be visiting, the frequency of the contact, who will be visiting and when, that just helps the family know what to expect,” Morris explained.
In relation to the care of the patient provided by the clinical team, factors that positively impacted the bereavement experience included compassionate care, competency, receiving honest facts and outreach following the patient’s death, the study found. Reports of impersonal contact, lack of contact, lack of caregiver support, and lack of information about the dying process adversely impacted the bereavement experience, the families that participated in the study reported.
Clinicians providing care at the end of life should develop communication skills that focus on enhancing compassionate connection, including conveying empathy, and providing reassurance and guidance to patients and their families as well as communication skills that focus on delivering information about prognosis and the end-of-life period in an honest and direct way the study concluded.
“Bereavement is seen as a very integral part of hospice, but I would encourage from a competency point of view that all staff — not just the bereavement team — should really understand the basics of grief from a psychological perspective, and what we think helps bereaved people especially in the first weeks and months of their bereavement,” Morris told Hospice News. “Another important competency would be looking for potential risk factors for a difficult bereavement, for example, a history of depression or if they are very socially isolated. Trying to put things in place prior to the patient’s death can help the bereavement outcome.”