As a consult nurse in St. Paul’s Hospital, Michelle Orr is often one of the first people on her team who meets a palliative patient and their family.
She asks questions that will inform her about symptom management, goals of care, and adjusting to the patient’s changing needs over time.
Her goal is to help people get back home from hospital with the right care and supports. As someone who sees a patient more than once, she is a constant presence in their journey.
She describes palliative care as “a holistic approach that aims to relieve any physical, psychosocial and spiritual distress or suffering a person may experience as they live with a terminal illness.”
Palliative care – not just about dying
However, she emphasizes that palliative care is not just about one’s final days. It’s about the way people live with a terminal illness.
Orr calls it “one of the most person-centered things that you can do in health care.” The questions shift from “how are we going to treat this disease?” to “Is this the type of care that they want to receive? Is something more important? Or have the person’s priorities changed?”
Christina Chan, a palliative-care resource nurse with Vancouver Coastal Health, says palliative care benefits loved ones too. She works mainly with patients in their homes, and collaborates on transitions between hospital, home and hospice, including May’s Place in the Downtown Eastside, operated by Providence.
“I think how well we care for the dying speaks to how we, as a society, value humanity,” she says. “I believe it’s a reflection of our values and I know from experience that when someone passes, it doesn’t mean that they’re gone. The loved ones that are close to them perceive the manner and the circumstances of their death and it really influences how they grieve.”
Patient-centered research on inequity in palliative care
Rachel Carter, Research Scholar for Equity in Palliative Care, is researching the inequities that impact people’s ability to access quality care. For patients accessing palliative care, treatment adherence and best practices can fly out the window if the person doesn’t have a home or is otherwise structurally vulnerable. This can deeply affect a person’s quality of care. The research will look at the many circumstances that can impact care, rather than a small portion of it.
To develop the research, Carter is following a patient-oriented approach. “One of the key principles of patient-oriented research is ensuring that the things that you’re researching have importance to the patients or the people that will benefit from it.” For her work, it means that the research questions are co-developed with the research users.
Carter says some palliative patients face problems in getting opioid agonist therapy (OAT). This medication can help control the symptoms of substance-use disorder, but accessing this treatment can become more challenging as a person’s health declines. As OAT requires a patient to visit a pharmacy or clinic multiple times per day, it can become increasingly difficult to commit to that much travel as a person’s illness progresses. These kinds of barriers directly impact the quality of palliative care a person receives and is something Rachel is hoping to assess in her work.
You’re invited to learn more
On May 10th, Orr, Carter and Chan will gather at St. Paul’s Hospital for a one-hour presentation, Responding to Structural Inequities in Palliative Care: Promising Practices. This in-person or virtual presentation discusses the case of one man’s last few months of life, and the pieces that came together in his care.
Carter will discuss her research and how patients, their family members, and health care staff can get involved.
Chan will describe her experiences supporting palliative patients in the community, mainly with the Pender Home Health and Downtown Eastside Integrated Primary Care teams. She also collaborates on transitions between hospital and home and hospice, including May’s Place in the Downtown Eastside, operated by Providence.
