Early palliative care is an essential service in the healthcare system, designed to improve the quality of life for patients with serious illnesses by addressing physical, emotional, and social needs. Patient advocacy groups play a critical role in ensuring that this care is accessible and effective. This article will explore the benefits of early palliative care, differentiate it from end-of-life care, compare palliative care settings, and discuss the decision-making process involved.
Palliative Care vs. End-of-Life Care
It is important to first address the common conflation of palliative care and end-of-life care, as they each serve distinct purposes. In Canada, there is currently no agreed upon definition of either; however, palliative care can be defined as care that is provided at any stage of a serious illness, not just at the end of life, which aims to improve quality of life through symptom-management, grief counselling, caregiver support, and decision-making support. Palliative care may be provided by a team of palliative specialists – this is often the case for individuals with more complicated conditions – but many individuals can receive high quality palliative care from non-specialists including primary care physicians. Importantly, palliative care can be provided in conjunction with curative treatment.
On the other hand, end-of-life care may be defined as care provided during the final stages of life when curative treatment is no longer an option or desired. End-of-life care focuses on comfort and support during the last days, weeks, or months of life.
Palliative Care Settings
Palliative care can be delivered in various settings, and patients may transfer across settings depending on factors like disease severity, availability of care facilities, or change in patients’ wishes.
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At Home:
- Benefits: Patients remain in a familiar environment, surrounded by loved ones. Home care can be personalized and flexible.
- Challenges: Requires significant family involvement, may lack access to medical equipment and healthcare professionals, and caregivers may not be adequately trained to provide care.
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Hospice:
- Benefits: Hospices specialize in palliative and end-of-life care, providing a home-like environment with 24/7 access to healthcare professionals. They can offer comprehensive support for patients and their families. Caregiver burden on family members is reduced.
- Challenges: Often restricted to patients who are in the final stages of life due to limited availability.
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Hospital:
- Benefits: Access to advanced medical equipment and specialists. Ideal for managing complex medical conditions and symptoms. Caregiver burden on family members is reduced.
- Challenges: Hospitals are often less personal and more clinical, which may negatively impact quality of life.
Benefits of Early Palliative Care
The benefits of palliative care, particularly when it is provided early and is well-integrated into patient care, have been well-documented. According to one study, patients with non-small-cell lung cancer who received early palliative care had significantly improved quality of life, mood, and even pulmonary function compared to those who received normal care. Another study found that patients and caregivers, when interviewed about their experience, appreciated the prompt and personalized care, the emotional support, and the guidance in decision-making and future planning that was provided by their palliative care team. One patient in particular noted that he wished he had been referred to the palliative care team 3 years prior when his pain began.
The Decision-Making Process
Ideally, the decision to pursue palliative care should be influenced by patient wishes as well as recommendations from their family and doctors. However, the current decision-making process may act as a barrier to accessing early palliative care. According to a 2023 survey from the Canadian Institute for Health Information (CIHI), many patients and caregivers feel the burden rests on them to advocate for earlier palliative care from their physicians. This may be due to the current standard of physicians checking patients’ condition against the Palliative Performance Scale – or similar checklists – before making a recommendation for palliative care. Unfortunately, based on these scales, most patients do not meet the criteria for palliative care until they are at the end of their lives, when palliative care may not be as effective.
We will discuss this further, as well as other barriers to equitable access to palliative care, in next week’s article.
The Role of Patient Advocacy Groups
Across Canada, there is a push for early, equitable, and effective palliative care. Health Canada recently published a report outlining work to improve palliative care in this country. According to this report, there has been a steady increase in palliative care across Canada in the last five years, (58% in 2021-2022 vs. 6% in 2016-2017), as well as an increase in patients receiving at-home care, (13% vs. 7%), and a steady increase in available hospice beds. The report also includes future action plans to increase palliative care training and education, improve research and data collection in this area, and facilitate equitable access to underserved populations.
This is all a testament to the hard work of patient advocacy groups, like the Canadian Hospice Palliative Care Association (CHPCA) and Canadian Cancer Society, who have been pivotal in raising awareness and improving education about palliative care, and who have worked with researchers and government bodies to improve patient access to early, integrated palliative care. Additionally, patient advocacy groups, like the Canadian MPS Society and Cure SMA Canada are integral parts of many patients’ palliative care teams, offering opportunities to connect with other patients and families as well as providing educational and supportive resources. Finally, there are organizations like Patient Pathways, which help patients and families of patients with serious illnesses navigate the Canadian healthcare system and provide resources on grief, advanced care planning, and end-of-life choices. Overall, patient advocacy groups and related organizations play a vital role in enhancing the quality and accessibility of palliative care, ensuring that compassionate and comprehensive support is available to those in need.
