|Measure ||Desired Direction ||As of this Report |
|Use of hospital at end of life || || |
| See Methodology and Approach to find out how the ratings are calculated. |
Cancer patients with progressive illness may not have adequate access to the resources and supports they need to live and die in the setting of their choice. Earlier access to palliative care services, especially near the end of life, is required to reduce the use of acute care in hospitals.
What is palliative care and how is it different from end-of-life care?
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In my words
Both of my parents were allowed to choose how they would handle and later die of their disease. The health care system supported and encouraged my parents to take control of their treatment and life plan.
- Palliative care is an approach to care that aims to relieve suffering and improve the quality of living and dying for patients with cancer and other serious illnesses (such as chronic kidney disease, COPD and dementia).
- Palliative care strives to help individuals, families and caregivers to do the following:
- address physical, psychological, social, spiritual and practical issues, along with their associated expectations, needs, hopes and fears;
- prepare for and manage end-of-life choices and the dying process;
- cope with loss and grief;
- treat all active issues;
- prevent new issues from occurring; and
- promote opportunities for meaningful and valuable experiences, and for personal and spiritual growth.
- End-of-life care is the care provided to people in the last weeks of their lives. It incorporates the principles of palliative care.
When is palliative care appropriate?
- Palliative care can be provided at any stage of the illness journey (see Figure 1), including the following:
- alongside therapies that are intended to cure or modify disease (such as chemotherapy);
- as the main focus of care for patients and families once curative treatments are no longer effective;
- near the end of life to prepare the person and his or her family for the dying process; and
- after death, in the form of support for bereaved family and loved ones.
- Earlier palliative care and proactive discussions about goals and preferences around care can help align the delivery of end-of-life care with what patients need and prefer. Research has shown that earlier introduction of palliative care is associated with reduced symptom burden, improved quality of life, greater patient satisfaction and (in some cases) longer survival1–5.
What is the Ontario Palliative Care Network?
- In March 2016, the Ministry of Health and Long-Term Care (the Ministry) announced the creation of a new Ontario Palliative Care Network (OPCN). The OPCN is an organized partnership of community stakeholders, health service providers and health systems planners responsible for the development of a coordinated and standardized approach for the delivery of palliative care services in the province.
- The OPCN will serve as principal advisor to the government for quality, coordinated palliative care in Ontario. In that role it will:
- be accountable for quality improvement initiatives, data and performance measurement;
- support regional implementation of high-quality, high-value palliative care; and
- connect current research and leading best evidence to clinical practice in a purposeful way
Text description of the cancer journey diagram and understanding of palliative care (7.52.1)
The figure has 2 flow charts with 6 square boxes linked by arrows, and two rectangular boxes spanning the square boxes.
The top flow chart shows the previous understanding of palliative care, where palliative care and end-of-life care are synonymous. The bottom flow chart shows the current understanding, where psychosocial and palliative care can occur at any time from diagnosis to survivorship.
(Previous and current understanding of palliative flow charts)
- forward to Screening
- forward to Diagnosis
- forward to Treatment
- forward to Recovery/Survivorship
- forward to End-of-Life Care
- backward to Treatment
- End-of-Life Care
- Primary Care
- Spans all parts of the cancer journey (boxes 1 through 6)
(Current understanding of palliative care flow chart only)
- Psychosocial and Palliative Care
Spans Diagnosis, Treatment, Recovery/Survivorship and End-of-Life Care
The figure is a large arrow with text above, within, and below the arrow.
The arrow is a visual to illustrate the text that describes the average time a cancer patient waited before seeing a palliative care clinician at a regional cancer centre in Ontario.
The text above the arrow defines the palliative care wait time indicator as the percent of cancer patients seen within 14 days for palliative care services in 2015 for Regional Cancer Centres in Ontario.
Two boxes with text in between lies on top of the arrow and visually illustrates the text: the median (or 50th percentile) wait time between referral date to wait time is 10 days and the 90th percentile wait time is 37 days. This means that 50 % of all patients were seen within 10 days and 90 % of patients were seen within 37 days.
The text below the arrow states the current result of the indicator: the percent of cancer patients seen within 14 days for palliative care services in 2015 is 64 %
What do the results show?
Across Ontario, 64% of patients who are referred for outpatient palliative care at regional cancer centres are seen within the maximum acceptable wait time of 14 days (Figure 2).
- Further improvement in wait times are needed in order to reach the provincial target of 80% for obtaining outpatient palliative care wait time of 14 days (Figure 2).
The provincial rate of ED visits in the last 2 weeks of life remained high in 2012, at 40% (Figures 3 and 4).
- There is variation across the regions, ranging from 34% in Waterloo Wellington to 46% in Central East in 2012 (Figure 3).
- There is room for improvement provincially and in most regions when comparing current performance to the provincial quality improvement target of 36%, which was calculated based on the top performing regions in Ontario.
- Factors that potentially contribute to ED visits include a lack of timely advance care planning, a lack of physician or nurse practitioner care in the community and a lack of after-hours support for patients in the last 2 weeks of life.
- It is important to note that it may be appropriate for the patient to visit the hospital at the end of life, depending on patient needs and goals of care.
- A relationship between income and ED visits was discovered, where individuals in the lowest income bracket (Q1) were more likely to visit the ED in the last 2 weeks of life than individuals in the highest income bracket (Q5) (Figure 4). Please note, 5 years of data were used for this analysis, which means that there are large volumes that could drive the statistical significance. In previous years, however, 1 years’ worth of data was used and significance was also seen.
The optimal management of pain, discomfort and other symptoms is a key component of palliative care (Figure 5).
- As a whole, 73% of patients who reported that they experienced pain or discomfort felt that their healthcare providers did everything they could to control that pain or discomfort, with variation between types of cancer (Figure 5).
- Patients who report more severe levels of pain or discomfort are less likely to respond positively about their experience with the management of pain and discomfort (data not shown).
Why is this important to patient care?
Access to palliative care services—such as home supports, residential hospice and bereavement care—is inequitable in the current system of palliative care delivery6. Depending on the region, anywhere from 32% to 53% of Ontarians with cancer received a palliative home care visit by a nurse or personal support worker in the last 6 months of life7. A recent provincial scan identified a need to improve access for the following groups:
- culturally and linguistically diverse populations;
- urban, rural and remote populations;
- First Nations, Inuit and Métis communities;
- prison populations;
- individual experiencing homelessness; and
- other marginalized groups8.
- The good news is that a recent Ontario-based study indicates that there are pockets of excellence for palliative care in the province9. The community-based palliative care teams observed in the study were successful at reducing both hospital use at the end of life and deaths in hospital. Given the unmet need for palliative care in Ontario, increased monitoring of system performance related to the provision of palliative care is needed to drive improvement efforts.
What is the current state of palliative care in Ontario?
- As the number of Ontarians living with, surviving or dying from cancer and other serious illness continues to rise, there is a growing number of patients and caregivers in the province who could benefit from accessing palliative care. Each year in Ontario, approximately 1% of the population (or about 100,000 people) will die10. Of those 100,000 people, approximately 60% could benefit from a palliative approach to care11. Only about 30% of those who could benefit from palliative care, however, actually receive it12.
- Moreover, for patients who do receive palliative care, it is too often relegated to the end of life rather than earlier in the illness trajectory. Previously, palliative care was often equated with end-of-life care, but it is now understood that palliative care should be delivered earlier, and it can be delivered at any point from diagnosis to end of life or survivorship (Figure 1).
How does Ontario compare?
- Evidence suggests that there is a need for a better way to provide palliative care in Ontario and in Canada more broadly, as the current models of care are associated with suboptimal outcomes for patients.
- A recent international study comparing 7 countries on end-of-life care found that end-of-life care in Canada is more hospital-centric and more costly than it is in other countries13.
- Within Ontario, a recent pan-Canadian study showed large regional variation in the quality of end-of-life care for cancer patients. Depending on the region, 42% to 69% of cancer patients die in an acute care setting, suggesting a lack of needs identification, planning and coordination of appropriate hospital and home care resources7.
- Across the province, the rates of ED visits for cancer patients in the last 2 weeks of life have remained high, indicating a reactive, rather than responsive, approach to palliative care. An Ontario study showed that the most common complaints among cancer patients at time of admission to the ED at the end of life were pain, shortness of breath and other issues that could have been addressed earlier in the patient’s cancer journey6.
Find out more
- Aiken l, Butner J, Lockhart CA, et al. Outcome evaluation of a randomized trial of the phoenixcare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliative Med. 2006; 9(1):111–26.
- Gade G, Venohr I, Conner D, et al. Impact of an inpatient palliative care team: a randomized control trial. J Palliative Med. 2008; 11:180–190.
- Gomes B, Calanzi N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers (review). The Cochrane Library. 2013; 6.
- Temel JS, Greer JA, Muzikansky A, Gallagher E, Admane S, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. New Engl J Med. 2010; 363:733–42.
- Zimmerman C, Swami N, Kryzanowska M, Hannon B, Leighl N, Oza A, et al. Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial. Lancet. 2014; 383(9930):1721–30.
- Barbera L, Sussman, J, Viola, R, Husain, A, Howell, D, Librach, SL, et al. Factors associated with end-of-life health service use in patients dying of cancer. Healthcare Policy. 2010; 5(3):e125–e143.
- Barbera L, Seow H, Sutradhar R, Chu A, Fassbender K, McGrail K, et al. Quality indicators of end of life care in patients with cancer: which rate is right? J Oncol Pract. 2015; 11(3):e279–87.
- Local Health Integration Networks, Quality Hospice Palliative Care Coalition of Ontario, the Province of Ontario. Advancing high quality, high value palliative care in Ontario: a declaration of partnership and commitment to action. December 2011 [Internet]. Queen’s Printer for Ontario; 2013 [cited 2016 Mar 21]. Available from: http://health.gov.on.ca/en/public/programs/ltc/docs/palliative%20care_report.pdf.
- Seow H, Brazil K, Sussman J, Pereira J, Marshall D, Austin PC, et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ. 2014:348.
- UK General Medical Council, 2010 cited in Ontario Residential Hospices Working Group. Strengthening Ontario’s End-of-Life Continuum: Advice Regarding the Role of Residential Hospices. Queen’s Printer for Ontario; 2015.
- Murtaugh F, Bausewein C, Verne J, Groeneveld E, Kaloki Y, Higginson I. How many people need palliative care? A study developing and comparing methods for population based estimates. Palliative Medicine. 2014; 28(1):49–58.
- Ontario Residential Hospices Working Group. Strengthening Ontario’s End-of-Life Continuum: Advice Regarding the Role of Residential Hospices. Queen’s Printer for Ontario; 2015.
- Bekelman JE, Halpern SD, Blankart C, et al. Comparison of site of death, health care utilization, and hospital expenditures for patients dying with cancer in 7 developed countries. JAMA. 2016; 315(3):272–283. doi:10.1001/jama.2015.18603.