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| Amy Hasbrouck |
Director: Toujours Vivant - Not Dead Yet,
In April of 2019, Québec’s Commission on end-of-life care (or CSFV for Commission sur les soins de fin de vie) released a report (French only) on the situation of end-of-life care in the province from December, 2015 through March, 2018, which summarized the first two plus years of palliative care, Continuous Palliative Sedation (CPS) and euthanasia.
You can find my analysis of that report on EPC’s Blog or the website of Toujours Vivant-Not Dead Yet. At the time, I identified several problems with “Palliative and end-of-life care” (PELC) as imagined, organized and provided in Québec. These include:
- People stuck in institutions are requesting and receiving euthanasia, but there’s not enough information to know how many.
- There’s not enough information (I’m detecting a theme here) to know how doctors determine whether a person has capacity to choose euthanasia, or whether the request is voluntary.
- What information (apart from the person’s or their family’s assurances) do doctors use to determine capacity and voluntariness;
- Do doctors consider the impact of psychological, social, economic and discrimination-related barriers when determining capacity and voluntariness of the request?
- Early identification and referral for palliative care is inadequate. There is not enough data to know how many people who need palliative care aren’t getting it.
- The data are inadequate to establish the timeliness and quality of palliative care services provided, and whether they meet the needs of the person and their loved ones.
- There is not enough information to explain the wide variation in the number of euthanasia and continuous palliative sedation (CPS) between doctors, hospitals and regions.
- Six percent of people who received CPS did not have signed consent forms in their files.
- Six percent of people who received CPS were not getting palliative care; this information is missing on another 11% of those who had CPS.
- Four percent (66 of 1,498) euthanasia did not conform to the law, either because the person was ineligible, or safeguards were flouted.
- The medical model adopted by Québec for assisted death is reflected in the location where CPS and euthanasia are administered. Less than 3% of CPS were administered at home, while about 20% of euthanasia were provided in the person’s home. Most occurred in hospitals.
- The numbers didn’t come out right (discrepancies continue).
On February 24, 2025, Québec’s CSFV released a five-year report, covering the period from April 1, 2018 through March 31, 2023. The report runs 127 pages, not including 30 pages of appendices (featuring statistics describing who did what to whom, when, where, why, and for how long). Suffice it to say that all of the problems I noted in the 2018 report are still featured in the 2023 report (including the numbers not coming out right). This is a lot of information to get through, so I’m going to break it up into shorter, topic-oriented chunks for easier mental digestion. This post will deal with the palliative care findings. I would also recommend a similar article from Vivre dans la dignité/Living with Dignity. All translations are mine in collaboration with Google.
Subsequent articles will focus on Continuous Palliative Sedation, euthanasia, the activities of the Commission, and issues affecting the future of euthanasia in Québec.
Palliative Care
In the 2018 Summary report we identified several problems relating to palliative care. We noted in our webcast that “[t]he Commission admits it doesn’t have data to prove that the gaps in palliative care services observed in a study published in 2000 still exist, but they’re pretty sure that’s the case.” Five years, and multiple plans, studies and consultations later, the Commission still lacks crucial information. The report shows:
- how many people receive palliative and end-of-life care each year
- how many people were getting palliative care when they requested and received euthanasia and CPS,
- The percentage of people receiving palliative and end-of-life care in various settings.
The 2023 report does not show:
- What palliative care services are provided,
- The duration and quality of the services,
- If the services met the needs of the people receiving them, their families and carers;
- How long was the delay between the request for services and when they are provided?
- How many people are eligible for, but did not receive palliative care?
- What related services (e.g. income supports, housing assistance, self-directed personal assistance or home modifications for accessibility) could decrease the need/demand for euthanasia?
The discussion of palliative care on page 8 of the report shows the continuing ambivalence about who palliative care is meant for. Québec’s statute, health and social service system usually refer to “palliative and end-of-life care” (PELC) together, («soins palliatifs et de fin de vie» or SPFV) rather than palliative care alone. In so doing, Québec expresses a policy-level preference for limiting access to palliative care to people who are dying, thereby ignoring the needs of people with non-terminal disabilities and chronic conditions who could benefit from pain management and other services. Though the five-year report does pay lip service to expanding access to palliative care to people with “chronic illness with a limited prognosis.” Section 3.3 of the report (on pages 13-14) mentions an estimated 40,000 people who might not be getting the PELC they need). It’s not clear whether this group includes people who need pain management or other supports, but whose conditions are not likely to cause death, i.e. disabled people.
The association between palliative care and death may be a factor in a decrease in the number of people receiving palliative care since the 2015-2018 report. On page 44 of the 2018-2023 report, the Commission notes that: “Nearly 68% of people who asked for MAiD were receiving palliative care when they made the request, and 82% received it between the request and administration of MAiD.” This represents a DECREASE from the earlier study, where 80% of those asking to die were receiving palliative care when they made the request, and 89% were getting it when they were euthanized. The reason for the decrease is unclear.
The Québec statute’s end-of-life eligibility requirement was struck down in the Truchon court decision in 2019, yet the expansion of access to death has not been accompanied by greater access to services people need to live. As long as “Palliative and end-of-life care” forces a connection between “life-ending” and pain relief for people with disabilities and chronic conditions, the scope of the services offered will be inadequate to prevent disabled people from being forced to “choose” death.
Problems with inadequate data as to availability and quality of services that were identified in the first summary report (2015-2018) persisted in the new report, due in part to:
- Lack of standardization in codes for palliative care services between facilities (p. 12)
- People who were eligible for, and needed palliative care, but did not receive it, are not counted.
- People who were eligible for, and needed palliative care, received delayed referrals.
“Some experts … expressed concern that difficulties in accessing PELC could prompt some people to request MAiD to relieve suffering that could have been alleviated with [palliative and end of life care]” (p. 13).Also on page 13, the report points to problems related to palliative care training
- “It appears that providers and care teams working in different care settings are not sufficiently trained to provide quality basic palliative care or to identify early people who could benefit from it.
- “The basic concepts of palliative care taught in professional curricula and continuing education offered in palliative care are insufficient.
- “The shortage of qualified workers weakens and compromises the provision of quality palliative care and the maintenance of skills in PELC.
- Psychosocial resources are also insufficient to meet the needs of people and their loved ones for support, assistance and respite.
- There are no management indicators or standardized tools to assess
- the quality of care and services in PELC,
- the response to the needs of people and their loved ones, and
- to examine the efficiency of the system.
Palliative care provision moved away from the home and toward hospitals, peaking at 38.6% in 2019. Despite the spike in home care during the pandemic (up to 44%, see figure 3.4 on p. 11) there was also an increase in palliative care in nursing homes at that time. Before the pandemic, home-based care was at or below 40%. The remainder was provided in nursing homes and hospice.
Palliative Care
- The Commission doesn’t have the data necessary to say:
- how many people that need palliative care aren’t getting it, or
- the duration, quality, or suitability of the care.
- The report focuses on palliative care as an option only for people at the end of life.
- There’s no discussion of other kinds of support than palliative care to prevent requests for euthanasia;
- how many people who need SDPA services to live at home aren’t getting them, or
- For those who are getting in-home supports, the duration, quality, or appropriateness of palliative care.
Problems with voluntariness & consent for euthanasia
- We don’t know how doctors decide if a person is subject to abuse, coercion or other “external pressure” to request euthanasia,
- whether psycho-social, economic and discrimination-related factors are taken into account,
- No information about assessment for coercion and abuse
- No information about doctors’ disability bias.
Palliative care
- Setting where palliative care was provided
2015-2018 - Home 47%, Hospital 31%, Nursing home 13%, Hospice 9%
2018-2023 - Home 42%, Hospital 37%, Nursing home 13%, Hospice 9%
Highlights of 2018-2023 report
- Overall
- Doesn’t give the totals of CPS or MAiD since the program began
- Obvious findings:
- The number of euthanasia and CPS are increasing.
- Some doctors, hospitals, and regions provide more palliative care, CPS, and euthanasia than others.
- Most of the people who die by euthanasia and CPS are over 60 years old and have cancer.
Palliative Care
- Use of SPFV Highlights the forced connection between “life-ending” and pain relief for chronic conditions.
- There are three types of people who could benefit from palliative care
- People with terminal illness who die
- People with chronic illness and disabilities who die (40,000)
- People with chronic illnesses and disabilities who don’t die
- Only refers to palliative care at the end of life (SPFV p. 8)
- People with “life-threatening” prognoses (doesn’t count disabled)
- “Relieve suffering without hastening or delaying death” p. 8
- Doesn’t talk about management of chronic pain.
Palliative care
- Disability supports, such as SDPA and access modifications, are not thoroughly discussed.
- Same problems with inadequate data as to availability and quality of services,
- Problems caused by:
- Lack of standardization in codes for palliative care services between facilities (p. 12)
- People who were eligible for, and needed palliative care, but did not receive it, are not counted.
- People who were eligible for, and needed palliative care, received delayed referrals.
- “Some experts and respondents to the questionnaire expressed concern that difficulties in accessing SPFV could prompt some people to request MAiD to relieve suffering that could have been alleviated with SPFV.” (P. 13)
- Especially for people who don’t have cancer.
- despite various studies and plans.
- The 2015-2020 Development Plan for Palliative and End-of-Life Care.
- The guidelines defined in the report of the national working group for equitable access to quality palliative and end-of-life care.
- The priorities and strategic measures presented in the 2020-2025 Action Plan For equitable access to quality palliative and end-of-life care.
- Spring, 2023 consultation with 15 providers and experts in palliative care.
- Access to quality palliative care necessarily requires adequate training of providers. (p. 13)
- It appears that providers and care teams working in different care settings are not sufficiently trained to provide quality basic palliative care or to identify early people who could benefit from it.
- It appears that providers and care teams working in different care settings are not sufficiently trained to provide quality basic palliative care or to promptly identify people who could benefit from it.
- The basic concepts of palliative care taught in professional curricula and continuing education offered in palliative care are insufficient.
- The shortage of qualified workers weakens and compromises the provision of quality palliative care and the maintenance of skills in SPFV.
- Psycho-social resources are also insufficient to meet the needs for support, assistance and respite of individuals and their loved ones.
- There are no indicators or standardized tools for assessing:
- the quality of care and services provided,
- the satisfaction of those receiving care and their loved ones, and
- to provide an overview of the efficiency of the system.
- Public awareness about palliative care is inadequate
- “The vast majority of Quebecers will be supported at the end of their lives and will receive palliative care. Approximately 3% of them will receive a CPS and 7% MAID as end-of-life care.” For a total of nearly 10% (P. 8)
2015-2018 - Home 47%, Hospital 31%, Nursing home 13%, Hospice 9%
2018-2023 - Home 42%, Hospital 37%, Nursing home 13%, Hospice 9%
- Note decrease in home-based services, increase in hospital-provided services
- Despite home-care spike during the pandemic (fig. 3.4, p. 11)
- In 2018 and 2019, home-based care was at or below 40%
Continuous Palliative Sedation (CPS)
- Of people who received CPS,
- 83% were receiving palliative care
- 6% were not receiving palliative care
- In 11% of cases, there was no information about whether they were getting palliative care.
- Rate of CPS increased from 1.8% in 2018-9 to 2.5% in 2022-3
- As a proportion of deaths in the province
- 2015-2018 – low of .89% high of 1.37%
- 2018-2023 – low of 1.8% high of 2.6%
- Consent forms properly filled out
- 94% 2015-2018, 95% 2019-2023.
- Clarifications (but no numbers) were provided regarding certain cases in which the consent form was not signed, including:
- the form was attached to the person’s file but was not signed;
- the form was not attached to the file or to the documents sent to the CMDP, so it is not known whether it was signed;
- verbal consent from the person or family replaced written consent;
- for a person unable to consent to care, the form was not signed because the person’s representative was absent, due to special situations, such as the pandemic context.
- Psychological / existential distress = 58%;
- Physical pain = 28%;
- Difficulty breathing = 25%;
- Delirium and agitation = 20%.
Settings where CPS was administered
2015 - 2018 Home 4%, Hospital 58%, Nursing home 10%, Hospice 27%, Unspecified 1%.
2018 - 2023 Home 3.6%, Hospital 58.9%, Nursing home 9.2%, Hospice 28.3%, Unspecified --
Symptoms that justified CPS than about the kind of suffering that lead to requests for euthanasia:
Psychological or existential distress 2015-18 - 54%, 2019-23 - 59.4%
Intractable, intolerable pain 2015-18 - 28%, 2019-23 - 32.9%
Progressive, uncontrollable dyspnea 2015-18 - 25%, 2019-23 - 25.5%
Agitated delirium 2015-18 - 20%, 2019-23 - 20.5%
Repeated respiratory distress 2015-18 - 16%, 2019-23 - 13.2%
Intractable nausea and vomiting 2015-18 - N/A, 2019-23 - 7.4%
Convulsions 2015 - 18 - N/A, 2019-23 - 1.5%
Uncontrolled hemorrage/bleeding 2015-18 - N/A, 2019-23 - 1.5%
Other (includes cachexia, dysphagia, fatigue/frailty)
2015-18 - N/A, 2019-23 - 17.9%
Provided consent via approved form 2015-18 - 94%, 2019-23 - 95%
- A minority of CPS and euthanasia were administered in the person’s home.
- Less than 3% of CPS
- about 20% of euthanasia were provided in the person’s home.
MAiD administered
- Total administered 2018 report = 1,632
- Total administered 2023 report = 14,417
- Total of both reports (2015-2023) = 16,049
- Four percent (66 of 1,498) euthanasia did not conform to the law
- 11 people were not eligible
- In 55 cases, doctors failed to comply with safeguards.
MAiD not administered
- The data as transmitted by the institutions to the Commission do not allow us to know what is the situation regarding real access to palliative care in the network and the quality of care offered, in particular to know whether needs are actually met and what are the obstacles to accessing quality palliative care in a timely manner.
- In order to partially fill this information gap, in spring 2023, the Commission consulted organizations and experts involved in the organization and delivery of SPFVs. The analysis of the consultations made it possible to identify a certain number of elements which, beyond the figures, provide a better idea of the current situation of SPFVs and the issues associated with them. These findings were endorsed by the Commission.
- Timely access is still a major issue. Delays and inequity of access exist throughout Quebec.
- Better access with a view to continuity of care requires better coordination of care and services offered in a given territory, particularly between institutions, palliative care homes, private clinics and volunteer organizations in order to ensure fluidity in the provision of palliative care and to meet the needs that may arise at various stages of the care trajectory.
- Early screening and referral of people who could benefit from palliative care is a challenge. Indeed, many stakeholders likely to make timely referrals are not adequately trained to identify people who could benefit from palliative care, the relevance of which does not only arise at the end of life, but well before.
- Better information for the general population and health professionals, as well as a better understanding of palliative care, must be on the agenda if we want to improve the supply of palliative care services, access to this care, and its quality.
• In the opinion of many, there is very little reliable data on PFS and the available data is fragmentary. There is no universal coding system to accurately identify people who have benefited from PFS. Thus, drawing up an accurate overall picture is difficult.
• Although the INSPQ has estimated the number of people who could benefit from palliative care annually, this estimate is very fragmentary, because it does not specify the type and intensity of PFS required. More detailed studies are essential in order to plan the supply of PFS care and services that will meet the needs of Quebecers.
p. 14: “The data as transmitted by the institutions to the Commission do not allow us to know the true degree of access to palliative care in the network and the quality of care offered; in particular to know if the needs are actually met and what are the obstacles to accessing quality palliative care in a timely manner.” Or “do not make it possible to ascertain the true level of access to palliative care in the network or the quality of the care provided, in particular whether needs are effectively met and what the obstacles are to accessing timely, high-quality palliative care.”
• In order to partially fill this information gap, the Commission consulted organizations and experts involved in the organization and delivery of SPFV in the spring of 2023.” The analysis pointed to problems beyond the figures.
- Timely access is still a major issue. Delays and inequity of access exist throughout Quebec.
- Better access with a view to continuity of care requires better coordination of care and services offered in a given territory, particularly between institutions, palliative care homes, private clinics and volunteer organizations in order to ensure fluidity in the provision of palliative care and to meet the needs that may arise at various stages of the care trajectory.
- Early screening and referral of people who could benefit from palliative care is a challenge. Indeed, many stakeholders likely to make timely referrals are not adequately trained to identify people who could benefit from palliative care, the relevance of which does not only arise at the end of life, but well before.
- Better information for the general population and health professionals as well as a better understanding of palliative care must be on the agenda if we want to improve the supply of palliative care services, access to this care and its quality.
• In the opinion of many, there is very little reliable data on PFS and the available data is fragmentary. There is no universal coding system to accurately identify people who have benefited from PFS. Thus, drawing up an accurate overall picture is difficult.
• Although the INSPQ has estimated the number of people who could benefit from palliative care annually, this estimate is very fragmentary, because it does not specify the type and intensity of PFS required. More detailed studies are essential in order to plan the provision of PFS care and services that will meet the needs of Quebecers.
Palliative care before euthanasia p. 44: “Nearly 68% of those who asked for MAiD were receiving palliative care when they made the request and 82% received it between the request and administration of MAiD. These figures are lower than those reported in the Commission’s 2015-2018 triennial report (80% and 89%, respectively).”
Previous reports by Amy Hasbrouck:
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