Palliative Care: Too Good to be True?
By Dr. Helen Senderovich, Assistant Professor of the University of Toronto Department of Family and Community Medicine, and Kristen McFadyen,
In a 2013 public opinion survey, 93% of Canadians agreed that palliative care relieves the burden on family members. The same survey also found that 94% of Canadians agreed palliative care improves quality of life for patients.[1]
And yet, many patients and their families are still hesitant to consult with a palliative care team, especially for patients who have chronic non-cancer end-stage illnesses. [2] Moreover, a survey of specialists indicated that they would refer patients to palliative care units when they have nothing further to offer.[3]
Canadians agreed palliative care should be integrated for all people with chronic, life-limiting conditions (90%) and should be available early in the course of a disease (87%).[4] However, hospice services only deliver palliative care to patients at the end of life.
Barriers remain in the understanding of palliative care. The need for awareness both within the medical community and public regarding the goals of palliative care is apparent.
What are the goals of palliative care?
The goal of palliative care is to prevent and relieve suffering associated with life-threatening illnesses. Palliative care can:
- Control pain and other symptoms
- Relieve burden on family members
- Improve understanding of the disease and what to expect in the future
- Address physical, social, psychosocial and spiritual domains of care
- Evaluate treatment alternatives in the context of patients’ goals and values
- Improve patients’ quality of life
A care plan is developed with the patient and their families that aligns with their values and preferences. Consistent and sustained communication between the patient and those involved with their care is key in providing support to the patient and their family. Research revealed that communicating diagnosis, prognosis, and what to expect in the future improves satisfaction with care.[5]
Palliative care services are now recognized as being beneficial when initiated early in the disease course alongside standard treatment.[6] Additionally, the literature indicates that discussing the disease trajectory and prognosis at the time of diagnosis makes patients and their caregivers more willing to accept palliative care in advanced stages of the disease.
Other studies have shown that across many serious illnesses, such as cancer, dementia, end-stage kidney disease, and heart failure, palliative care decreased the total symptom burden, increased patient and family satisfaction, reduced hospitalizations, and enabled patients to remain safely at home.[7],[8],[9],[10],[11],[12],[13],[14],[15] Most Canadians indicated in previous surveys that they would prefer to die at home in the presence of loved ones.[16]
Each year, 20 million people around the world are in need of hospice and palliative care at the end of life. Another 18 million are dying in unnecessary pain and distress, which also affects the health and well being of their family members and caregivers.[17]
As our population ages, there will be a growing need for palliative care programs. The demand for improved home and community programs will increase as many people in need of palliative care will prefer to stay at home or reside in long-term care settings. The progressive shift towards integrating palliative care alongside standard care for patients with advanced and severe illnesses will also compound the need for improved access to, and equity in, palliative care programs.
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Works Cited
[1] Canadian Hospice Palliative Care Association: The Way Forward project. a quantitative online research survey of 2,976 Canadian adults. Completed using Harris/Decima’s proprietary online panel so is precluded from reporting a margin of error. Data were collected between July 5 and August 7 2013. Survey data were weighted using 2011 Census to reflect general population (gender, age and region). P 18, 19, 47. http://www.hpcintegration.ca/resources/what-canadians-say.as
[2] Bailey, F. Amos, et al. "Palliative care: The last hours and days of life." UpToDate, Bruera, E, Arnold, RM,(Ed) Walham, MA (2014).
[3] Glogowska, M., et al. (2016). “Sometimes we can’t fix things”: a qualitative study of
health care professionals’ perceptions of end of life care for patients with heart failure. British Medical Journal Palliative Care, 15.
[4] Canadian Hospice Palliative Care Association: The Way Forward project. a quantitative online research survey of 2,976 Canadian adults. Completed using Harris/Decima’s proprietary online panel so is precluded from reporting a margin of error. Data were collected between July 5 and August 7 2013. Survey data were weighted using 2011 Census to reflect general population (gender, age and region). P 18, 19, 47. http://www.hpcintegration.ca/resources/what-canadians-say.as
[5] Teno, J.M., Lynn, J., Phillips, R.S., Murphy, D., Youngner, S.J., Bellamy, P., et al.
(1994). Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? Journal of Clinical Ethics, 5, 23-30.
[6] Meier, Diane E., et al. "Benefits, services, and models of subspecialty palliative care." (2015).
[7] Elsayem, Ahmed, et al. "Palliative care inpatient service in a comprehensive cancer center: clinical and financial outcomes." Journal of Clinical Oncology 22.10 (2004): 2008-2014.
[8] Smith, Thomas J., et al. "A high-volume specialist palliative care unit and team may reduce in-hospital end-of-life care costs." Journal of palliative medicine 6.5 (2003): 699-705.
[9] Higginson, Irene J., et al. "Do hospital-based palliative teams improve care for patients or families at the end of life?." Journal of pain and symptom management 23.2 (2002): 96-106.
[10] Higginson, Irene J., et al. "Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers?." Journal of pain and symptom management 25.2 (2003): 150-168.
[11] Manfredi, Paolo L., et al. "Palliative care consultations: how do they impact the care of hospitalized patients?." Journal of pain and symptom management 20.3 (2000): 166-173.
[12] Casarett, David, et al. "The optimal delivery of palliative care: a national comparison of the outcomes of consultation teams vs inpatient units." Archives of Internal Medicine 171.7 (2011): 649-655.
[13] Wachterman, Melissa W., et al. "Quality of end-of-life care provided to patients with different serious illnesses." JAMA Internal Medicine 176.8 (2016): 1095-1102.
[14] Brumley, Richard, et al. "Increased satisfaction with care and lower costs: results of a randomized trial of in‐home palliative care." Journal of the American Geriatrics Society 55.7 (2007): 993-1000.
[15] Maltoni, Marco, et al. "Systematic versus on-demand early palliative care: A randomised clinical trial assessing quality of care and treatment aggressiveness near the end of life." European Journal of Cancer 69 (2016): 110-118.
[16] Canadian Institute for Health Information. (2007). Health Care Use at the End of Life in Western Canada. Ottawa: CIHI. p. 22. 6 Statistics Canada. Table 102-0509 - Deaths in
[17] World Health Organization. Global Atlas of Palliative Care at the End of Life. (2014).
Available from: http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.