For many people their understanding of palliative care is that it means end of life. The evidence, and the national standards that guide care in Canada and abroad, point to something quite different. Palliative care works best when it starts early, alongside other treatment, and stays in place as a serious or life-limiting illness changes.
This October, as we mark World Hospice and Palliative Care Day, we’re looking at what starting earlier means in practice, and what standards, research and global learning can teach us. It also takes more than clinical teams. It takes compassionate communities and palliative care training to help people provide it with confidence.
The gap: palliative care often arrives too late
Canada has made progress, but the data shows how late palliative care often starts. The Canadian Institute for Health Information (CIHI) found that 58% of people who died in 2021–2022 in Ontario, Alberta, British Columbia and Yukon were identified with a palliative diagnosis and received some form of palliative care, up from 52% in 2016–20171.
Timing is the problem. CIHI reports that half of patients die within 22 days of being identified as palliative. Among those who received palliative care, 61% received it in hospital only, and 36% received palliative home care. CIHI also notes that palliative care should ideally begin close to diagnosis, and that much of what its data records as palliative care is end-of-life care1.
The Palliative Care Coalition of Canada’s Blueprint for Action 2025–2030 adds the bigger picture: nine in ten Canadians who die each year have a serious illness, and many live with it for years first2. That is a lot of lost time, when symptoms, worries and people, family and communities stress could have been better supported.
What “early” actually means
Early palliative integration doesn’t mean giving up on treatment. The World Health Organization (WHO) describes palliative care as an approach that improves quality of life for patients (adults and children) and their families facing life-threatening illness. It prevents and relieves suffering through early identification, assessment and treatment of pain and other physical, psychosocial or spiritual problems3. WHO says it is “most effective when considered early in the course of the illness”, and that starting early also reduces unnecessary hospital admissions3.
The Canadian Hospice Palliative Care Association’s Model to Guide Hospice Palliative Care takes the same view, describing palliative care as something that can sit alongside disease-modifying therapy from the start, with its role growing as needs change4.
In practice, early integration looks like:
- Open conversations from diagnosis about what matters most to the person and their family
- Advance care planning that is revisited as things change, rather than rushed in a crisis
- Support for the whole person including physical symptoms, emotional wellbeing, relationships, spiritual needs and practical concerns, which the CHPCA model calls the “domains” of care
- Support for family caregivers and other caregivers, who are often the ones holding everything together
Palliative care, in other words, is about living well earlier.
Standards turn good intentions into consistent care
Principles matter most when they show up reliably at the bedside, at the kitchen table, in a home care visit or in a long-term care room. That’s where standards can set the agenda for what care can do.
In Canada, the Health Standards Organization (HSO) is developing a new edition of its national Palliative Care Services standard (CAN/HSO 13001:2026)5. According to the Standards Council of Canada notice, it will apply to all ages and all settings, including home and community care. It will also set out measurable, outcome-based requirements and give clients and caregivers a central role in care planning.
For teams on the ground, a standard like this answers practical questions. What does a good assessment include? How do we plan care with families? Who is responsible when someone moves between hospital and home?
Global learning: what other countries can teach us
Canada isn’t the only country working on this. Palliative Care Australia’s National Palliative Care Standards6 include standards on assessment of needs, caring for carers, seamless transitions between services, grief support, and staff qualifications and training. They also say that caring for people approaching the end of life is “everybody’s business” across health, aged and community care.
That idea is worth carrying into our own practice. Palliative care isn’t only for specialist teams. It depends on personal support workers, nurses, social workers, spiritual care providers, volunteers, primary care teams, family members and communities. That is the reality of compassionate communities: a community of people surrounding the person, each with a role to play, each there to focus on the person and what they need and want. The CHPCA model calls this the “circle of care”4.
ALS: a powerful example of why timing matters
Few conditions show the value of early palliative involvement as clearly as amyotrophic lateral sclerosis (ALS). People living with ALS face changes in mobility, communication, breathing and swallowing, often in quick succession. Early support helps with symptom management, with communication and advance care planning, and with keeping autonomy and quality of life. It also helps caregivers and family caregivers to be sustained.
On Monday, October 26 at 3pm ET / 12pm PT, we’re hosting a webinar titled: Start Earlier, Live Better: What ALS Can Teach Us About Early Palliative Care. Emily Moffatt, National Community Lead at the ALS Society of Canada, will speak about:
- why palliative care should begin early and continue throughout the illness journey
- lessons from global ALS models and from Canada’s Multidisciplinary Integrated Palliative Care Collaborative
- how the HSO national standard supports coordinated, person-centred care
- the role of ALS clinics, primary care, home care, respiratory therapy, speech-language pathology and community organizations
- barriers to equity, including unequal access to clinics, equipment, home care, and culturally and linguistically appropriate support
If you work in direct care, education or leadership, it’s a chance to see how these ideas apply to people’s real lives.
Skills make early care possible
Early, coordinated palliative care depends on people who feel confident having difficult conversations and supporting people living with serious illness. The Blueprint for Action2 names “skilled, supported care providers” as one of its four priorities. It calls for palliative care competencies to be part of training for all health and social service providers. It also notes that more than eight million family and friend caregivers in Canada are caring for someone who is seriously ill, and most feel unprepared and overwhelmed.
That’s where accessible palliative care training makes a difference, for professionals and for the wider community around a person: support workers, volunteers, families and neighbours. Training builds confidence, shared language and consistency, so that “start earlier” can become routine. The Australian standards make the same point, expecting staff and volunteers to be appropriately qualified, supported and engaged in ongoing professional development6.
What you can do this month
- Start the conversation. Ask people what matters most to them and encourage advance care planning for yourself and your family.
- Look at your own practice or organization. Where could palliative care start earlier? Where do transitions between services break down?
- Invest in palliative care training. Even a short course can change how comfortable someone feels supporting a person with a serious illness. Access our free online course
- Join us on October 26 to learn what ALS can teach us about early palliative care.
Life and Death Matters offers practical palliative care training for people who care for others, from direct care providers to educators and workplace leaders, helping to build more compassionate community care across Canada. Explore our books and courses.
References
- Canadian Institute for Health Information. Access to Palliative Care in Canada, 2023. Ottawa, ON: CIHI; 2023. https://secure.cihi.ca/free_products/access-to-palliative-care-in-canada-2023-report-en.pdf (summary page: https://www.cihi.ca/en/access-to-palliative-care-in-canada)
- Palliative Care Coalition of Canada. Blueprint for Action 2025–2030. https://www.chpca.ca/wp-content/uploads/2025/12/PCCC-Blueprint-for-Action-2025-2030.pdf (see also the PCCC page: https://www.chpca.ca/initiatives/palliative-care-coalition-of-canada-pccc/)
- World Health Organization. Palliative care [fact sheet]. 5 August 2020. https://www.who.int/news-room/fact-sheets/detail/palliative-care
- Canadian Hospice Palliative Care Association. A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice (revised and condensed edition, 2013). https://www.chpca.ca/wp-content/uploads/2024/07/norms-of-practice-eng-web.pdf
- Standards Council of Canada. Palliative Care Services (CAN/HSO 13001:2026), Notice of Intent, Health Standards Organization. https://scc-ccn.ca/standards/notices-of-intent/hso-group/palliative-care-services-0
- Palliative Care Australia. National Palliative Care Standards, 5th edition (2018). https://www.vadanz.org.au/content/uploads/PalliativeCare-National-Standards-2018_Nov-web.pdf
