Like many aspects of the cancer experience, the concept of palliative care may be unsettling. After all, there is a strong assumption it is associated with end of life. But this is inaccurate. The truth is, palliative care is much broader and includes services such as pain and symptom management that can improve quality of life and, in some cases, actually extend lives.
Fortunately, people’s perception of palliative care is changing, says Reanne Booker, a nurse practitioner at the Tom Baker Cancer Centre.
Booker is also a PhD student in nursing with the faculty of human and social development at the University of Victoria, and a casual employee at Palliative and End-of-Life Care Services at Foothills Medical Centre in Calgary. Her thesis is exploring perceptions of palliative care and the benefits of early integration. Booker tells us why the evolution of palliative care will make a positive difference for individuals living with life-limiting conditions, and shares her current research involving early integration of palliative care specifically for people living with blood cancers.
What is palliative care?
The definition I use is from the Palliative Care Early and Systematic (PaCES) Project, a provincial initiative whose goal is to improve quality of life for Albertans with advanced cancer. Palliative care focuses on support of the patient’s and their family’s physical, emotional and psychosocial needs — including help with decision-making [from understanding a prognosis to exploring end-of-life choices] — while continuing with advanced, cancer-focused treatments. It provides an additional level of support, and it is now recommended alongside cancer treatment right at the beginning, not only for people at the end of their lives.
How has it evolved over time?
Dr. Balfour Mount, a Canadian physician, surgeon and academic, coined the term in the 1970s in an effort to replace negative connotations associated with the word “hospice.” Over time, palliative care began providing other services. Pain management explores the pros and cons of various medications [opioids or corticosteroids, for example] and routes of administration [orally, by needle, patch or under the skin]. It also looks at non-medicinal options like adjusting the elevation of a bed to assist with breathing. Symptom management offers medicinal and non-medicinal ways to relieve common side-effects like shortness of breath, constipation, nausea, vomiting and fatigue. Psychosocial support includes counselling, practical assistance with finances, legal issues and spiritual care support. Of course, discussions about what happens to the body as life winds down and end-of-life options [hospice, home care, Medical Assistance in Dying], should the patient request it, are still included.
What are the benefits of early integration?
Early intervention palliative care helps us to have respectful and sensitive discussions about difficult topics along the disease trajectory. It provides a continuum of care and has the capacity to shift gears quickly — from treatment-focused support to pain management to end-of-life questions and back again — to align with patient wishes and experiences. In 2017, the American Society of Clinical Oncology published guidelines for integrating palliative care earlier in the cancer experience, indicating it was an essential component of care for patients with advanced cancer or significant symptom burden.
What stigma is attached to palliative care?
The biggest stigma is the association with imminent death. Although palliative care now offers much more diverse and comprehensive options, this myth remains entrenched in our society and creates a barrier for timely referrals and may prevent patients from investigating its benefits at all.
How can we overcome this?
Although a name change might help — [for example] the University of Texas MD Anderson Cancer Center has switched to “supportive care”— we need a true philosophical shift. Once people understand that palliative care doesn’t mean you are dying right away, there is an acceptance of the concept. I provide community workshops and present at conferences to get that message out to medical personnel and the public at large.
What should the future of palliative care look like?
It should be standard of care for anyone with life-threatening illness, including those in rural and remote areas. There needs to be more education about palliative care in health-care curricula, so professionals have the skills to talk about the benefits of early integration.
From 2005 to 2015, Booker worked in the Alberta Blood and Marrow Transplant Program at the Foothills Medical Centre. In her experience there, Booker saw that this patient group often had serious symptoms, underwent intensive care and/or acute treatment, like chemotherapy, and, typically, had aggressive end-of-life experiences, such as more time spent in emergency rooms, in their final weeks. Rarely was palliative care sought out.
Booker wanted to explore why this was happening and create an opportunity for early palliative care integration. Her research, which began in September 2018, will inform her PhD thesis. It is a collaboration with Foothills Medical Centre and the Tom Baker Cancer Centre and is funded by the R.K. Dixon Family Award established through a generous gift to the Alberta Cancer Foundation from Mr. & Mrs. Dixon’s estate. Its three phases are as follows:
Phase One was conducted from January to April 2019. Booker examined data (from anonymous health registries in Alberta) of 1,100 people who died of blood cancer from 2003 to 2010. She found 66 per cent had experienced aggressive end-of-life care and 25 per cent of people accessed palliative care support a week before dying.
Phase Two, which is expected to be completed by summer 2020, involves interviewing 15 patients undergoing blood cell or bone marrow transplantation, 15 caregivers and 15 clinicians to determine what they would like from palliative care. Interviews are open-ended, allowing for detailed, descriptive responses.
Phase Three (in development) will integrate early palliative care into a group of these patients, while a separate control group will receive standard palliative care, as needed or upon request. Outcomes from each group will then be studied and compared. Booker will run this intervention for a year starting in early 2021. Study results and data should be ready by the fall of 2022.