Palliative care focuses on quality of life and includes pain and symptom management and emotional, psychosocial and spiritual support. For people with cancer, the goal of palliative care is to help them live better, no matter what stage of the cancer journey they are in. When combined with standard treatments like chemotherapy, radiation and surgery, palliative care can help people live longer, fuller lives.
A key aspect of palliative care is ensuring that people can maintain their dignity and feel heard and respected as an individual. CCS-funded researcher Dr Harvey Max Chochinov and his team developed a tool called the Patient Dignity Inventory (PDI) to help doctors achieve a deeper connection with their patients. To give doctors a deeper understanding of their concerns and priorities, the tool asks people to rate their current condition on 25 different indicators, such as their ability to carry out daily tasks and think clearly and their feelings of self-worth. The PDI tool has been translated into nearly a dozen languages and is used around the world to help people with cancer live a more dignified and meaningful life.
While palliative care can provide benefits and comforts to people with cancer, not everyone uses it. CCS-funded researcher Dr Camilla Zimmerman has done critical work to understand the reasons why. In one study, Dr Zimmerman and her team found that even though people with advanced cancer experienced great benefits from palliative care, they felt that the term “palliative care” carried a negative stigma associated with hopelessness and end-of-life. This perception could cause people to refuse care and support that could significantly improve their quality of life.
In a separate study, the same researchers found that Canadian oncologists are referring patients too late to specialized palliative care services. While 8 in 10 doctors refer people with terminal cancer to palliative care, most are only referred in the last few months or weeks of life and many are only referred in the last days. In addition to the availability of and acceptance criteria for palliative care services, doctors also identified the stigma around the term “palliative care” as a reason why they did not refer people earlier. By uncovering the barriers to palliative care, Dr Zimmerman’s research highlights the importance of reframing conversations around palliative care and better educating patients, families, healthcare providers and the public so that more people can benefit from these services.
Palliative care also encompasses end-of-life care, which provides physical, emotional, spiritual and social support for people with cancer and their families. Important research by the CCS-funded Canadian Centre for Applied Research in Cancer Control (ARCC) has helped to set benchmarks to measure the quality of end-of-life care provided in each province and how accessible it is to the people who need them. Their work also looked at the role of homecare nursing in improving quality and access to end-of-life services. By defining goals for high-quality end-of-life care and identifying strategies to improve it, ARCC’s research is guiding policy makers across the country in making decisions on healthcare priorities and resource allocation so that more people can receive the end-of-life care that they and their loved ones need.