In Canada, nearly one in two people at the end-of-life report having palliative care available to them. In Ontario, the case is similar: just over half of those who would have benefitted from receiving palliative care got it. And most of these encounters take place in a hospital setting and occur just two months before death. To be clear, not everyone that dies needs palliative care, but 70% of people do die from a chronic illness, which means that most people would probably benefit from palliative care and would benefit from receiving it earlier on in their course of illness than just at the the end of their lives.
There are many misconceptions around palliative care, and the biggest is the concept that it’s only for patients at the end-of-life. A Toronto-based study found that both patients and caregivers commonly associate palliative care with death, care in the last weeks of life, and last resort care. Interestingly, receiving palliative didn’t seem to change these perceptions. Other studies have also found that health care providers perceive palliative care as care for the dying that is initiated after other treatments are finished.
Yet the World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” This definition has been widely adopted. The Canadian Hospice Palliative Care Association (CHPCA) also supports this position, encouraging the early integration of a palliative approach alongside other care, so that patients and their families have a clear understanding of their illness, get pain and symptom management, and receive care that aligns with their goals and values.
Research suggests that early palliative care brings meaningful benefit to patients and their caregivers. A systematic review of early palliative care interventions found that it helps with pain and symptom management, reduces the use of aggressive treatment at the end-of-life, reduces healthcare use, improves patient and caregiver satisfaction, reduces the burden on caregivers and improves the quality of life of caregivers.
Access issues
Beyond the stigma and misperceptions, another problem is that the number of palliative care providers is limited. While it’s hard to determine the true availability and delivery of palliative care, we know that not all people who can benefit from palliative care are receiving it. For example, in Ontario, people who die from cancer are almost two and a half times more likely to receive palliative care than people with other serious illnesses, such as congestive heart failure or dementia.
One way to meet the demand for palliative care is to encourage more providers to take a palliative approach to care delivery. While (specialist) palliative care is delivered by an interdisciplinary team of providers, a palliative approach to care encourages all providers, regardless of their discipline, to adopt and embed the core competencies of palliative care for their patients with serious illnesses. This includes management of pain and symptoms, depression and anxiety, and engaging patients in advance care discussions and goals of care discussions to improve their understanding of their illness, identify what’s important to patients and their families and help align treatment to match patient goals.
The Canadian Society of Palliative Care Physicians recently published a report supporting this position. The report calls for investments to support the transition in care delivery to a palliative approach, such as targeted funding for medical school programs to teach the core competencies of palliative care, such as when and how to have goals of care discussions. Training providers to understand these core competencies might also help reduce the stigma around palliative care, since patients wouldn’t need to go through a referral process to access it.
Lessons from other health systems
In 2012, the Scottish government introduced initiatives to address barriers to palliative care as part of the country’s effort to expand palliative care and rebrand it as “anticipatory care.” As part of the initiative, the Supportive and Palliative Care Indicators Tool (SPICT) – a trigger tool to identify patients for palliative care, and Key Informant Summaries (KIS) which captures and summarizes key points of patients’ anticipatory care plans in electronic medical records for those with complex health and social care needs, were introduced into all primary care practices across Scotland. The initiatives are aimed at identifying patients with non-malignant illnesses for palliative care and the tools are meant to facilitate sharing of information across sectors.
Since the introduction, the tools have helped identify more patients with frailty, dementia and organ failure earlier in their illness. A study on the initiatives found that that patients with cancer were still being identified more than patients with dementia and frailty, or organ failure, but that there was a significant improvement in identifying patients for palliative care earlier. This study also found that patients had KIS initiated a median of 18 weeks prior to their death and had the Palliative Care Summary component of their KIS completed a median of 11 weeks prior to death. Although that is still late in the illness trajectory, these findings speak to improvements that are being made to integrate palliative care earlier.
Palliative care and end-of-life care are also on the Ontario government’s agenda. In 2016, the Ministry of Health and Long-Term Care provided Cancer Care Ontario with funding to lead the establishment of the Ontario Palliative Care Network with a mandate to advise the government on the quality and coordination of care, to be accountable for quality improvement initiatives and system performance, and to support the implementation of services in Ontario. In 2016, the Ministry also invested over $75 million into improving access to palliative and end-of-life care over the next three years. And a provincial palliative and end-of-life care strategy is currently underway.
As Ontario works to develop and implement initiatives, an important lesson from the Scottish experience is that initiatives need to be patient-centric. Initiatives should focus on patients’ and caregivers’ goals of care, and the integration of those goals with clinical decision-making.
With an aging population and more chronic illnesses, providers across all disciplines need to provide a palliative approach to caring for patients with advanced chronic illness. As illness progresses, patients’ and families’ have multidimensional needs which include physical, and psychosocial needs. While this may be framed as early integration of palliative care or a palliative approach to care, adopting such an approach would just translate to good patient care.
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We where told we would have a team to look after my mom. It’s a lie we have to fight to get care for her our family is very stressed my father is doing everything he can as well as he can he’s 78. All the medical field wants to do is fill her full of drugs. This is an absolute disgrace. She is dying of dehydration and nutrition.