It is often stated that timely palliative care improves quality of life for patients with advanced cancer. However, studies in this area are difficult to carry out, and there is scant evidence for this assertion. As well, there is a misconception among patients – also some oncology clinicians – that palliative care is relevant only after all other cancer treatment has been exhausted. Referrals to palliative care are therefore often deferred, and may not occur at all. We conducted a randomized controlled trial to determine whether routine early involvement of specialized palliative care in the outpatient setting would improve quality of life for patients with advanced cancer. The study took place at the Princess Margaret Cancer Centre and was funded by the Canadian Cancer Society.
In our study, 24 oncology clinics (461 patients) at the cancer centre were randomized either to standard cancer care or early intervention at an outpatient palliative care clinic. Both groups completed measures about their quality of life and satisfaction with care. After four months, the group randomized to early palliative care had better quality of life and symptom control, and were more satisfied with their overall care, than those who received standard care.
A unique aspect of this study was that it was carried out in an outpatient setting. Patients who were randomized to the intervention were seen in a specialized clinic by a palliative care physician and nurse, who assessed their pain and other symptoms, provided counselling and support for emotional and social issues, and referred them to other specialists or appropriate community services, as needed. They were then followed once monthly for four months in the palliative care clinic, and had access to 24-hour telephone support in between visits. Patients in the standard care group received the care they would normally receive from their oncologist, and could be referred to the palliative care team at any time. However, less than 10% of patients in the standard care group were actually seen by the palliative care team during the four months of the trial.
We hope that this study will help dispell the myth that palliative care is only relevant very late in the cancer treatment journey, for patients who are bedridden and who have a very short prognosis. This misconception is understandable, because palliative care originated from the hospice movement, which was directed at improving care for patients who were near the end of life. Most people think of palliative care as taking place either at home, or in an inpatient facility, rather than in an outpatient setting. But palliative care has changed in focus over the last few decades, with the realization that the philosophy of palliative care is relevant much earlier in the illness, while patients are still receiving active anti-cancer treatment. Close to 90% of the patients in this study were also receiving chemotherapy or other treatment for their cancer. The palliative care team acted as an extra resource to help them through this challenging time.
Patients are often frightened of palliative care and what they think it means. Sometimes this fear is so great that they avoid seeing the palliative care team, or reaching out to appropriate resources. There are also misconceptions about palliative care amongst health care professionals, who may avoid referring their patients to palliative care teams because they believe patients might think they are giving up hope. Palliative care should not be a frightening concept, or something to be avoided. Rather, it should be part of providing excellent cancer care, with the aim of maximizing quality as well as quantity of life.
The bottom line for this study was that palliative care is beneficial early on in the illness, while patients are still receiving cancer treatment, including chemotherapy or radiation. Treatments aimed at prolonging life for patients with advanced cancer go hand in hand with palliative care, which is directed at improving quality of life. These approaches are complementary, not exclusive. This sort of care is what patients and their families should seek out, rather than shy away from. As health care providers, we need to work together to make that possible.
Dr. Camilla Zimmermann is a Scientist at the Princess Margaret Cancer Centre, Associate Professor at the University of Toronto, and holds the Rose Family Chair in Supportive Care in the Department of Medicine at the University of Toronto. She is also Medical Director of the Harold and Shirley Lederman Palliative Care Centre at Princess Margaret, and Head of Palliative Care for the University Health Network in Toronto.
Dr. Zimmermann is internationally known for her research on palliative and supportive cancer care, has published widely in peer-reviewed journals, and is co-editor of the textbook Supportive Oncology. She holds grants from the Canadian Cancer Society and the Canadian Institutes for Health Research, for her research on early palliative care in patients with solid tumors and leukemia. She was awarded the William E. Rawls Prize by the Canadian Cancer Society for her research, which is focused on determining the best way to provide timely, integrated symptom management and supportive care for patients with cancer and their families.