Sage Journals: Discover world-class research

Abstract

Background:

This study leverages the Province of Quebec (Canada)’s 2014 End-of-Life Care Act, which regulates the use of continuous palliative sedation and mandates its reporting, to describe its use at a population-based level.

Aim:

To describe the demographic and clinical characteristics of patients who received continuous palliative sedation, and to examine variabilities in clinical practice across diagnoses, indications, and care settings.

Design:

Retrospective convenience cohort of patients who received continuous palliative sedation until death.

Setting/participants:

A total of 1005 patients’ reporting forms from academic and regional hospitals and hospices between January 1st, 2016 and March 31st, 2022 were analyzed, representing 12% of all reported continuous palliative sedations performed in the Province of Quebec.

Results:

The sample was 51% male, median age of 73 years (IQR 64–81). Most (45%) received continuous palliative sedation in academic hospitals, 40% in hospices, and 15% in regional hospitals, but none in chronic care institutions or at home. Cancer was the most prevalent diagnosis (78%). The main indications were psychological/existential distress (57%), respiratory distress (34%), pain (28%), and delirium (24%); half had more than one form of distress. Overall median duration was 2 days (IQR 1–5), significantly longer in cases of psychological/existential distress (3 days, IQR 1–7; p < 0.0001). Medications commonly used were methotrimeprazine (74%), midazolam (69%), and lorazepam (48%), frequently in combination. 93% of patients died peacefully, while 6% experienced incomplete symptom relief, and 1%, complications.

Conclusions:

The study demonstrated that standardization in the practice of continuous palliative sedation can be achieved across diverse clinical settings.

Keywords

terminal care palliative care hospice care euthanasia deep sedation cohort studies

Key statements

What is already known about the topic?

● Palliative sedation is used to relieve intolerable, refractory symptoms in terminally ill patients by reducing consciousness, typically near the end of life.

● Psychological or existential distress has historically been considered a rare indication for palliative sedation, with ethical concerns surrounding its use.

● Guidelines for palliative sedation exist internationally, but adherence to these guidelines in real-world practice has been infrequently evaluated.

What this paper adds

● This study shows that psychological or existential distress was the most frequent indication for palliative sedation across diverse care settings in Quebec, Canada.

● This study demonstrates high adherence to provincial palliative sedation guidelines in regard to medication selection and dosing.

● This study found that palliative sedation was associated with a perceived peaceful death in 93% of cases, with low reported incomplete relief of distress or complications.

Implications for practice, theory, or policy

● These findings support the need to recognize psychological and existential distress as common indications for palliative sedation.

● The results suggest that standardized reporting frameworks can effectively monitor and benchmark palliative sedation practices across healthcare settings.

● Policymakers and guidelines committees can draw on these findings to improve palliative sedation practices, adapted to local legal and clinical contexts.

Introduction

Palliative sedation is a treatment used to alleviate intolerable refractory suffering by lessening patients’ consciousness to reduce or eliminate awareness of the suffering.¹ It is typically given in the last hours to days of life in response to symptoms that persist despite optimal care.² The use of palliative sedation varies by jurisdiction, with reports suggesting between 2.5% and 30% of terminally ill people receive palliative sedation.³

Palliative sedation involves ethical and legal considerations, many of which relate to the potential for shortening life, even if that is not the intention.⁴ The wide range of medications and dosages used can contribute to the perception that it is sometimes used to hasten death,^5
–8 while variability in the degree of sedation provided or the definition of “refractory” can lead to disagreement about its appropriateness.⁹ While considerable efforts have been taken to develop guidelines,^1,10
–13 relatively few studies have examined the degree to which these guidelines are followed in practice.^14,15

Numerous studies have examined the medications used. However, most were conducted in small samples and limited care settings (e.g. specialized palliative care units) and were not designed to capture nationwide practices.^2,16 In addition, their study populations predominantly consisted of cancer patients.² A recent scoping review identified a myriad of practices contributing to substantial variability in the quality of palliative sedations worldwide, highlighting the need for standardization of practices.¹⁷

In the Province of Quebec, Canada, the End-of-Life Care Act (2014) was adopted concerning the use of continuous palliative sedation, which includes a mandatory reporting process across all settings to ensure oversight. Furthermore, the Quebec College of Physicians developed guidance on the definition, indications, consent process, monitoring, and medications for palliative sedation.^18,19 Leveraging this unique context, the objectives of this study were to describe the demographic and clinical characteristics of patients who received continuous palliative sedation, and to examine variabilities in clinical practice across diagnoses, indications and care settings.

Methods

Research design

A retrospective study of a convenience cohort of patients who received continuous palliative sedation until death, based on mandatory reporting forms from the Province of Quebec, Canada.

Population

All healthcare institutions in the Province of Quebec must report detailed information on the use of continuous palliative sedation to the Ministry of Health and Social Services. Each institution maintains a registry of patients and retains the corresponding reporting forms. All patients who received continuous palliative sedation between January 1st, 2016 and March 31st, 2022, regardless of age, sex, diagnosis, and clinical services, were included in the analysis.

Clinical settings

We contacted a convenience sample of institutions reflecting the variability of clinical settings in the Province of Quebec to constitute a cohort of all patients who received continuous palliative sedation in one of the following centers: two of the four university hospitals: Centre Hospitalier Universitaire (CHU) de Québec – Université Laval and CHU de Sainte-Justine (two out of four specialized inpatient pediatric services); three of the 13 regional Health and Social Services Centers, which vary greatly in terms of population size, number of hospitals, chronic care institutions, as well as palliative care beds and home services: Centre intégré universitaire de santé et de Services Sociaux (CIUSSS) de la Capitale Nationale, Centre intégré de santé et services sociaux de Laval, and CIUSSS de l’Estrie – CHU de Sherbrooke; and three of the 32 hospices: Maison Michel-Sarrazin, La Maison Aube-Lumière, and La Maison Victor-Gadbois.

Data extraction

Using the Continuous Palliative Sedation Report Form,²⁰ patients’ demographic and clinical data were extracted. This form is completed by the physician involved in the care of the patient at the moment of death, based on a review of the patient’s chart. The form includes, beside clinical information, the symptoms as assed by the physician initiating the palliative sedation, estimated prognosis in days at initiation of continuous palliative sedation, dates of initiation of sedation and death, prescriptions of drugs used considered by physicians reporting for the purpose of sedation, and other treatments used during sedation (e.g. hydration and artificial feeding), the attitude of the family and of team members, and the occurrence of complications. All sedation procedures followed proportionality parameters based on patient symptoms. Data extraction was performed under the supervision of the principal author. Three data extractors were trained by comparing double extractions of 50 forms each. During data cleaning, frequently recurring incongruous entries prompted verification of data entries.

Statistical analysis

The report forms indicated the prescriptions of the types of medication used for palliative sedation with the starting and end dosage (e.g. lorazepam 1 mg subcutaneously every 8 h). For the purpose of the analysis, prescriptions were converted to median 24-h doses, which did not necessarily represent the amount received within 24 h. We performed descriptive analyses for all variables, showing means and 95% confidence intervals (CIs) or medians and interquartile ranges (IQRs), and counts and proportions, as appropriate. In addition, we performed statistical comparisons of demographic and clinical characteristics among palliative sedation recipients, based on setting (academic hospital vs regional hospital vs community hospice), diagnosis group (cancer vs non-cancer illness), and indications (psychological/existential distress, pain, delirium, and respiratory distress). We used Student’s T test or the Mann-Whitney U test to compare continuous variables (depending on the normality of the data determined by the Kolgomorov-Smirnov test), and Chi-square tests to compare proportions for categorical values. As this was a descriptive study, missing data were not imputed; results were presented using the available data, with ratios calculated over the number of available observations rather than the total study population. All analyses were performed using SPSS version 30 (IBM Corp., Armonk, NY). Venn diagrams were produced on DeepVen, a freely available online platform.²¹ This study was conducted in accordance with the Declaration of Helsinki. Approval was granted on November 11, 2023. The Institutional Review Board (IRB) at the CHU de Québec – Université Laval acted as the central IRB, whose review was accepted by all participating institutions’ IRBs (no. 2023-6532). The central IRB approved a waiver for informed consent, and all patient information was de-identified.

Results

A total of 1005 Continuous Palliative Sedation Report Forms were extracted from the included centers, representing 12% (1005/8076) of all palliative sedation procedures performed in the Province of Quebec and reported to the Health and Social Services Ministry over the study period (Supplemental Table 1).^22–28 The sample was 51% male, with a median age of 73 years (Table 1; IQR 64–81, range 12–102); there was no significant difference in age between sexes (Mann-Whitney p = 0.8). Of note, there was only one patient under age 18. The largest proportion of continuous palliative sedations extracted were from academic hospitals (45%), followed by hospices (40%), but none were performed in chronic care institutions or at home. Most patients had a principal diagnosis of cancer (78%), followed by cardiovascular disease (5%).

Table 1.

Demographic characteristics of patients who received palliative sedation.

Clinical Characteristics	n	(%)
Sex (N = 1000)
Female	486	(49)
Male	514	(51)
Median age (IQR) (N = 952)	73	(64–81)
Primary diagnosis (N = 983)
Cancer	775	(78)
Cardiovascular diseases	49	(5)
Respiratory diseases	41	(4)
Infections	44	(4)
Neurodegenerative diseases	23	(2)
Renal diseases	15	(1.5)
Trauma	13	(1)
Liver diseases	6	(<1)
Other	17	(2)
Place of care (N = 994)
Academic hospital	451	(45)
Hospice	389	(40)
Regional hospital	154	(15)

Physicians filling the report form could indicate one or more forms of suffering as an indication for palliative sedation (Table 2). The most common indications were psychological/existential distress (57%), followed by respiratory distress (34%), pain (28%), and delirium (24%); half of the patients were reported as having more than one form of distress. Figure 1 illustrates the most common combinations of symptoms reported as indications for continuous palliative sedation in the study population. In 188 (18.7%) of cases, psychological/existential distress was the sole symptom leading to continuous palliative sedation, while in 122 (12.1%), it was respiratory distress, in 83 (8.3%), it was delirium, and in 62 (6.2%), it was pain.

Table 2.

Sedation characteristics.

Sedation Characteristics	n	%
Indications for sedation (n = 970)
Psychological/existential distress	574	(57%)
Respiratory	340	(34%)
Pain	285	(28%)
Delirium	241	(24%)
Other	97	(10%)
Critical	39	(4%)
Number of indications/patient (N = 970)
1	477	(49%)
2	391	(40%)
3	92	(9%)
4	9	(1%)
5	1	(< 1%)
Express informed consent obtained (N = 962)
Yes	931	(97%)
No	31	(3%)
Hydration status (N = 951)^a
Patient naturally ceased to drink	827	(87%)
Physician NPO order	89	(9%)
Artificial hydration discontinued^a	35	(4%)
Nutrition status (N = 398)^a
Patient naturally ceased to eat	291	(73%)
Physician NPO order	78	(20%)
Artificial nutrition discontinued^a	29	(7%)

Artificial hydration and nutritional status before initiation of palliative sedation is unknown.

Figure 1.

Venn diagram of reported indications for palliative sedation. Sedation indication data was available for 970 patients (97%). Multiple indications were reported for a variety of patients (493/970, 51%). The most common combinations are depicted (numbers in parentheses represent the frequency of each indication individually). Only indications with frequencies greater than five are included in the picture for clarity; 38/970 (4%) patients were therefore excluded. Areas are only roughly approximately to scale.

Physicians were asked to describe the decision-making and consent process for palliative sedation with patients’ family members and the multiprofessional team. Informed consent was obtained in 931 (97%) cases, which included a collaborative decision between the team and family in 859/931 (92%) of cases and a simple approval from family members for 72/931 (8%) of cases. Respondents reported obtaining a second opinion from a physician before palliative sedation initiation in 227/542 (42%) cases, more frequently in hospices than in regional or academic hospitals (89%, 26%, and 24%, respectively, p < 0.001). Most patients had stopped eating naturally (73%) or as ordered by physicians (20%), and had stopped drinking naturally (87%) or as ordered by physicians (9%) before palliative sedation was initiated. In 29 (4%) and 35 (7%) patients, artificial hydration and nutrition, respectively, were discontinued at the time of starting palliative sedation.

Overall median duration of continuous palliative sedation was 2 days (IQR 1–5), although there was significant variability according to the setting (Figure 2(a)); academic hospitals (n = 425) had a median duration of 5 days (IQR 2–7), regional hospitals had a median duration of 2 days (IQR 1–3), and hospices had a median duration of 2 days (IQR 1–3; p < 0.0001). Figure 2(b) shows that psychological/existential distress was associated with longer duration of continuous palliative sedation (3 days, IQR 1–7; p < 0.0001), with 47/72 (65%) patients receiving continuous palliative sedation for 14 days, and two for 30 days. Having pain (3 days, IQR 2–7), respiratory distress (2 days, IQR 1–3), and delirium (2 days, IQR 1–5) were associated with a significantly shorter duration of continuous palliative sedation (p < 0.001, p < 0.01, and p < 0.02, respectively). Overall, the mean estimated prognosis of patients was 5 days (95% CI 4.8–5.3), with a mean actual duration of continuous palliative sedation of 3.8 days (95% CI 3.5–4.0) (p < 0.001 for the difference between estimated and actual duration). In 58% of cases, the estimated prognosis was equal to the actual duration of continuous palliative sedation, while in 28 (2.8%) patients, continuous palliative sedation duration was at least 2 days longer than the estimated prognosis.

Figure 2.

Percentage of patients per number of days after initiation of palliative sedation. (a) Per settings of care. (b) By indication of psychological/existential distress. The percentages presented per number of days refer to the percentages within each categories – for example, (a), for the category of 1 day, 11% (47/441) of patients in academic centers died within the first day after initiation of continuous palliative sedation while 39% (151/383) of patients in hospices died within the same period. In the category ⩾14 days, 74 patients were receiving continuous palliative sedation for 14 days, 1 for 24 days, and 2 for 30 days. Both distributions, (a) and (b), are significantly different (χ²: p < 0.0001).

In 93% of cases, the patient was reported as having had a peaceful death (897/961), while 53/961 (6%) were felt to have experienced incomplete symptom relief without further explanations. A further 1% (11/961) experienced complications, such as respiratory distress with or without aspiration events, and three cases of pulmonary edema.

The most common medications and doses used to provide continuous palliative sedation are found in Table 3. Most patients were sedated with methotrimeprazine (n = 731, 74%) and/or midazolam (n = 687, 69%), while many received scopolamine (n = 629, 63%). A smaller proportion received lorazepam (n = 481, 48%), phenobarbital (n = 167, 17%), propofol (n = 10), chlorpromazine (n = 7), ketamine (n = 3) and dexmedetomidine (n = 1). Only midazolam and lorazepam doses appeared to increase between the initial and final days of continuous palliative sedation. For most patients, physicians used two or more drugs for sedation (Figure 3). The records did not allow any analysis of the order in which medications were used or whether medications were used simultaneously or sequentially.

Table 3.

Drugs used for palliative sedation (number of patients, starting dose, dose at death) according to treatment setting.

Drugs	Academic Hospital (N = 451)			Regional Hospital (N = 154)			Hospice (N = 389)
	n (%)	Starting dose^a (per 24 h, mg) (IQR) (Range)	Dose^a at death (per 24 h, mg) (IQR) (Range)	n (%)	Starting dose^a (per 24 h, mg) (IQR) (Range)	Dose^a at death (per 24 h, mg) (IQR) (Range)	n (%)	Starting dose^a (per 24 h, mg) (IQR) (Range)	Dose^a at death (per 24 h, mg) (IQR) (Range)
Methotrimeprazine (n = 731, 74%)	316 (70)	90 (60–150) (12–600)	120 (75–150) (25–450)	122 (79)	120 (60–150) (5–600)	120 (60-202.5) (5–330)	293 (73)	150 (150–300) (15–900)	150 (150–300) (15–900)
Midazolam (n = 687, 69%)	281 (62)	60 (48–90) (12–480)	96 (48–126) (12–648)	88 (57)	72 (60–120) (6–240)	120 (72–144) (15–480)	318 (82)	72 (60–120) (12–360)	72 (60–120) (24–360)
Scopolamine (n = 629, 63%)	327 (73)	2.4 (2.4-4.8) (1.2-9.6)	3.6 (2.4-4.8) (1.2-14.4)	119 (77)	2.4 (2.4-2.4) (1.2-19.2)	2.4 (2.4 -4.8) (2.4-9.6)	183 (47)	3.6 (2.4-4.8) (2.4-9.6)	4.8 (2.4-4.8) (2.4-9.6)
Lorazepam (n = 481, 48%)	179 (40)	6 (6–12) (2–120)	12 (6–12) (3–120)	63 (41)	6 (6–9) (3–120)	9 (6–12) (3–180)	239 (61)	12 (6–12) (3–120)	12 (12–12) (3–240)
Phenobarbital (n = 167, 17%)	68 (15)	-	380 (180–720) (30–960)	15 (10)	-	255 (180–360) (180–540)	84 (22)	360 (360–600) (60–720)	360 (240–540) (120–720)
Propofol (n = 10, <0.1%)	10 (2)	600 (300–2160) (240–2400)	600 (480–1500) (240–8400)	-	-	-	-	-	-
Chlorpromazine (n = 7, <0.1%)	5 (1)	90 (60–200) (60–300)	90 (60–200) (60–300)	1 (1)	-	-	1 (<1)	-	-
Ketamine (n = 3, <0.1%)	1 (<1)	-	-	2 (1)	504 (range 288–720)	504 (range 288–720)	-	-	-
Dexmedetomidine (n = 1, <0.1%)	-	-	-	1 (1)	-	-	-	-	-

Median dose.

Figure 3.

Venn diagram of medications used for palliative sedation. Medication data was available for 980 patients (98%). The majority of patients utilized two or more drugs during their sedation period (922, 94%). The most common were [midazolam + methotrimeprazine + scopolamine] (237, 24%), [lorazepam + midazolam + methotrimeprazine] (120, 12%), and [lorazepam + methotrimeprazine + scopolamine] (112, 11%).

Figure areas are not to scale. Only medications used by more than 10 patients were included for clarity.

We compared clinicodemographic features of palliative sedation among diagnoses, indications, and settings. We found that cancer patients were more likely to receive sedation with midazolam, lorazepam, and methotrimeprazine (558/775, 72%, 386/775, 50%, and 604/775, 78%, respectively) than patients with other diagnoses (130/217, 60%, 82/217, 38%, and 132/217, 61%, respectively, p < 0.001). They were also less likely to receive propofol than patients with other diagnoses (1/775, 0.1% vs 8/217, 4%, p < 0.001), although the numbers were very small. Patients sedated for psychological/existential distress were more frequently sedated with methotrimeprazine (442/571, 77%) and lorazepam (295/571, 52%), compared with patients sedated for other indications (300/434 or 69% with methotrimeprazine, p < 0.05, and 189/434 or 44%) with lorazepam, p < 0.05).

Medication use differed slightly between settings (Table 3). Patients sedated in hospices compared to patients sedated in academic and regional hospitals were more likely to receive lorazepam (239/389, 61%, vs 242/605, 40%), midazolam (318/389, 82%, vs 369/605, 61%) and phenobarbital (84/389, 22%, vs 83/605, 14%) (p < 0.005 for the overall comparison). Academic and regional hospitals were very similar with regards to medication usage, with only methotrimeprazine usage being more frequent in regional hospitals (122/154, 79%), as opposed to academic institutions (316/451, 70%) and hospices (293/389, 73%), (p < 0.005).

Discussion

Main findings

In this large, real-world retrospective cohort study, we report the clinicodemographic features of over 1000 patients who received palliative sedation in different settings over a 6-year period in the Province of Quebec, Canada. While any physician can order and supervise palliative sedation in Canada, it is mostly done by palliative care physicians and, occasionally, by intensive care unit physicians due to restrictions in the use of continuous sedative infusions outside these units. This study represents one of the largest reports of palliative sedation practice in the literature to date, covering multiple settings and representing an appreciable proportion of all palliative sedations performed anywhere in Quebec during the study period in the context of legalized euthanasia (Medical Assistance in Dying, see below).

We found that the majority of people receiving palliative sedation were dying of cancer, which is consistent with previously published reports.² Although most recipients had more than one form of refractory suffering as the drivers for sedation, the most common indication for palliative sedation in our study was psychological or existential suffering, reported together in the Case Report Form.

What this study adds

The high prevalence of psychological distress as the indication for palliative sedation is notable. Older guidelines from North America suggested that palliative sedation should only be used for psychological or existential distress in “rare” or “exceptional” circumstances.^11,29,30 The recent European Association for Palliative Care (EAPC) guidelines moved away from this language but have emphasized the importance of a comprehensive assessment from experts to evaluate the psychological, social, and spiritual components of suffering before designating psychological or existential symptoms as “refractory.”¹ Palliative sedation for existential suffering has been debated on ethical grounds for a long time,^31,32 particularly regarding its approximation with techniques aimed at hastening death and among patients who are not in the final days or weeks of life.^33,34 Medical Assistance in Dying, a process that allows eligible people to request and receive assistance from a medical practitioner in ending their life for unbearable suffering without the necessity for a short limited expectation of life,³⁵ is a legal option in Canada, and existential distress is the most common form of suffering reported among recipients.^36,37 In that context, it is notable that many people continue to request and receive continuous palliative sedation for psychological and existential symptoms. In this study, the presence of psychological/existential distress was based on physicians’ assessments without a standardized definition, and the reporting form did not provide information on psychiatric consultations or treatments provided prior to initiating palliative sedation. Another potential explanation could be that Medical Assistance in Dying recipients often have more than 2–3 weeks of life expectancy.³⁸ Those with a shorter anticipated prognosis may not have sufficient time to complete the assessment process required for Medical Assistance in Dying, since the median time from request to procedure in Quebec is 13 days.³⁹ We previously found that if palliative care physicians estimate a survival of less than 14 days, they are more inclined to offer continuous palliative sedation than Medical Assistance in Dying.¹⁴ Provincial reports show that the reported use of both Medical Assistance in Dying and palliative sedation have been steadily rising since their regulation in Quebec in 2015.^27,28

A combination of methotrimeprazine and benzodiazepines (either lorazepam or midazolam) were the most common sedatives used, while scopolamine (an antisecretory agent that also has sedating effects) was also used in about three quarters of cases. The medications and doses reported in this study are consistent with those recommended in the Quebec palliative sedation guidelines,¹⁹ except that the latter favors the use of benzodiazepine (lorazepam or midazolam) monotherapy as first-line agents. The median and IQR of initial doses reported for all medications correspond almost exactly to the ranges suggested in the guidelines, although the upper limit of the reported initial doses exceeds these recommendations. These approaches and doses are also consistent with other published guidelines, although the most recent EAPC guidelines suggest starting with a midazolam infusion rate of 1 mg/h, which is lower than what we report here.^1,40

Medication usage patterns differed slightly across sites, particularly when comparing hospitals (both academic and regional) with hospices. The higher frequency of phenobarbital use⁴¹ in hospices could be explained by the facts that: (1) the use of phenobarbital is often more regulated in hospital settings where only specialized units such as intensive care units and tertiary palliative care units are allowed to use it and (2) in hospice setting, close collaboration between a restricted number of physicians and nurses facilitate the establishment of clinical protocol for its use.

Our data does not provide the status of artificial hydration and nutrition before initiation of palliative sedation, but it could be assumed that no patients were kept on them until death, consistent with reported practice and guideline recommendations from many other countries.¹⁵ Likewise, only a small proportion of patients were reported as experiencing incomplete relief of their distress, or complications from continuous palliative sedation. A well-designed, prospective multicenter study from 2005 reported a 17% “failure” rate of palliative sedation.⁴² We are unaware of any recent reports investigating the rates of these phenomena, but every medical procedure has known rates of failure and complication. The lower rate of incomplete relief in our study when compared with the 2005 study may reflect an overall practice improvement, but also may reflect lower reporting, as the Continuous Palliative Sedation Report Form is completed by a physician after a patient’s death. This underscores the concept that no procedure is 100% successful, and anything we do in medicine has the potential to cause harm. Neither concept is an argument against using palliative sedation in situations of truly refractory symptoms. Treatment decisions are never made on the basis of certainty, but rather on the balance of potential benefits and risks and the potential benefits and risks of the alternatives.¹⁴ The recent EAPC guidelines acknowledge these risks and suggest that they be included in any consent discussion, subject to the desire of the decision-maker to be informed about them.¹²

In less than 3% of cases was the actual survival time longer than the estimated prognosis. Clinical survival estimation is known to be challenging, with high variability among prognostication methods.^43,44 The Quebec Palliative Sedation guideline and the Case Report Form utilized by the Quebec Health Ministry to track this procedure do not mandate the use of specific prognostication methods. Therefore, we hypothesize that a wide inter-observer variability in estimating prognosis was present in our sample. Moreover, the Case Report Forms were completed by the physicians retrospectively, after the patients had died, so the recorded prognostic estimate could have been highly influenced by the actual survival time, supported by the very high percentage of perfect estimates.

Our large, real-world, multi-setting study captures how continuous palliative sedation is delivered across hospitals and hospices under standardized reporting requirements. By providing real-world benchmarks, this study offers practical insights for healthcare systems internationally seeking to monitor, compare, and strengthen palliative sedation practices while adapting to local clinical and legal contexts.

Strengths and limitations of the study

Strengths of this study include the fact that the clinical data was recorded at the time of death using standardized forms, which helps with the completeness and comparability of the data. The data was also collected from a variety of hospital-based and regional authorities, which increases the generalizability of the findings. The reality remains that some forms were incompletely filled, and there was no review process in place to verify the accuracy of reporting. In non-hospice settings, the low number of patients receiving continuous palliative sedation for less than 2 days suggests that this practice may be under-reported, even if this is a requirement of the law and physicians can receive financial compensation. Many Quebec physicians prescribe a “Distress Protocol” consisting of midazolam 5 mg, scopolamine 0.4 mg and a 5 mg morphine equivalent administered subcutaneously as needed, which can be used in case of crises such as sudden bleeding, respiratory distress, or terminal agitation.⁴⁵ It is possible that in cases such as this, physicians do not file a report because they do not consider this to be an example of continuous palliative sedation.

In conclusion, our study demonstrated that standardization in the practice of continuous palliative sedation can be achieved across diverse clinical settings. The legalization of euthanasia may have contributed to increased use of palliative sedation in cases of psychological or existential distress.

Supplemental Material

sj-docx-1-pmj-10.1177_02692163251403417 – Supplemental material for Demographic and clinical characteristics, practices, and outcomes of continuous palliative sedation: A multi-setting, province-wide retrospective cohort study

Supplemental material, sj-docx-1-pmj-10.1177_02692163251403417 for Demographic and clinical characteristics, practices, and outcomes of continuous palliative sedation: A multi-setting, province-wide retrospective cohort study by Bruno Gagnon, James Downar, Olivia Nguyen, Isabelle Marcoux, Diane Guay, Marc-Antoine Marquis, René-Fabrice Mukendi Tshibangu, Jessica Boivin, Mathilde Labeau-Caouette, Anton Savin and Henrique A. Parsons in Palliative Medicine

Footnotes

Acknowledgements

We thank the medical archivists and other employees of the various institutions for their assistance in obtaining the Physician Report Forms. This project has been funded by a contribution from Health Canada, Health Care Policy and Strategies Program. The views expressed herein do not necessarily represent the views of Health Canada.

ORCID iDs

Bruno Gagnon

James Downar

Isabelle Marcoux

René-Fabrice Mukendi Tshibangu

Jessica Boivin

Henrique A. Parsons

Ethical considerations

This study was conducted in accordance with the Declaration of Helsinki. Approval was granted on November 11, 2023. The Institutional Review Board (IRB) at the CHU de Québec-Université Laval acted as the central IRB, whose review was accepted by all participating institutions’ IRBs (no. 2023-6532). The central IRB approved a waiver for informed consent, and all patient information was de-identified.

Author contributions

B.G. and J.B. designed the study, which was conceived by B.G. R.-F.M.T., M.L.-B., and A.S. carried out the data collection. H.A.P. led the data analysis, with the contributions of B.G., J.D., and R.-F.M.T. B.G. led the writing of the manuscript. B.G., H.A.P., O.N., I.M., D.G., M.-A.M., R.-F.M.T., J.B., M.L.-B., and A.S. contributed to data acquisition and/or reviewed the manuscript.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Health Canada, Health Care Policy and Strategies Program [grant no. 2122-HQ-000066]. The funder had no role in the design of the study, the collection, analysis, and interpretation of data, or the writing of the manuscript.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

Data generated during the current study are available from the corresponding author upon reasonable request.

Supplemental material

Supplemental material for this article is available online.

References

Surges

Brunsch

Jaspers

, et al. Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: an international Delphi study. Palliat Med 2024; 38: 213–228.

Arantzamendi

Belar

Payne

, et al. Clinical aspects of palliative sedation in prospective studies. A systematic review. J Pain Symptom Manag 2021; 61: 831–844.e10.

Heijltjes

van Thiel

GJMW

Rietjens

JAC

, et al. Changing practices in the use of continuous sedation at the end of life: a systematic review of the literature. J Pain Symptom Manag 2020; 60: 828–846.e3.

Henry

. A systematic literature review on the ethics of palliative sedation: an update (2016). Curr Opin Support Palliat Care 2016; 10: 201–207.

Morita

Chinone

Ikenaga

, et al. Ethical validity of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan. J Pain Symptom Manag 2005; 30: 308–319.

Maltoni

Pittureri

Scarpi

, et al. Palliative sedation therapy does not hasten death: results from a prospective multicenter study. Ann Oncol 2009; 20: 1163–1169.

Lucchi

Milder

Dardenne

, et al. Could palliative sedation be seen as unnamed euthanasia?: a survey among healthcare professionals in oncology. BMC Palliat Care 2023; 22: 97.

Yokomichi

Yamaguchi

Maeda

, et al. Effect of continuous deep sedation on survival in the last days of life of cancer patients: a multicenter prospective cohort study. Palliat Med 2022; 36: 189–199.

Maiser

Estrada-Stephen

Sahr

, et al. A survey of hospice and palliative care clinicians' experiences and attitudes regarding the use of palliative sedation. J Palliat Med 2017; 20: 915–921.

10.

Canadian Society of Palliative Medicine. Sedation and the control of refractory symptoms at the end of life. 2024. https://www.bc-cpc.ca/wp-content/uploads/2024/02/RefractorySymptomsAndPalliativeSedationGuideline2024-Copy.pdf (accessed 30 October 2025).

11.

Dean

Cellarius

Henry

, et al. Framework for continuous palliative sedation therapy in Canada. J Palliat Med 2012; 15: 870–879.

12.

Surges

Garralda

Jaspers

, et al. Review of European guidelines on palliative sedation: a foundation for the updating of the European Association for Palliative Care Framework. J Palliat Med 2022; 25: 1721–1731.

13.

Abarshi

Rietjens

Robijn

, et al. International variations in clinical practice guidelines for palliative sedation: a systematic review. BMJ Support Palliat Care 2017; 7: 223–229.

14.

Guité-Verret

Boivin

Hanna

, et al. Continuous palliative sedation until death: a qualitative study of palliative care clinicians’ experiences. BMC Palliat Care 2024; 23: 104.

15.

Pozsgai

Garralda

Busa

, et al. Report on palliative sedation medication usage: a survey of palliative care experts in eight European countries. BMC Palliat Care 2024; 23: 154.

16.

Tan

, et al. Palliative sedation determinants: systematic review and meta-analysis in palliative medicine. BMJ Support Palliat Care 2024; 13: e664–e675.

17.

Albrecht

Gilissen

Robijn

, et al. What determines quality in palliative sedation? A scoping review identifying elements contributing to palliative sedation quality. Palliat Med 2025; 39: 849–870.

18.

Collège des médecins du Québec. https://www.cmq.org/en (accessed 30 October 2025).

19.

Institut National d'Excellence en Santé et en Services Sociaux de Québec. Administration of Continuous Palliative Sedation (CPS) in Adults at the End of Life. 2024. https://www.inesss.qc.ca/fileadmin/doc/INESSS/Ordonnances_collectives/Sedation_palliative/INESSS_PMN_Sedation_SPC.pdf (accessed 30 October 2025).

20.

Collège des Médecins du Québec and Ordre des Infirmières e infirmiers du Québec. Formulaire de déclaration d’une sédation palliative continue (SPC) par le professionnel compétent, https://cms.cmq.org/files/documents/Pratiquer-medecine/fin-de-vie/form-decl-spc.pdf (2024). (accessed 30 October 2025).

21.

Hulsen

. DeepVenn – a web application for the creation of area-proportional Venn diagrams using the deep learning framework Tensorflow.js. arXiv 2022. DOI: 10.48550/arXiv.2210.04597.

22.

Comission sur les soins de fin de vie - Gouvernement de Quebec. Rapport annuel d'activités 10 décembre 2015 - 30 juin 2016. 2016. https://csfv.gouv.qc.ca/fileadmin/docs/rapports_annuels/csfv_rapport_activites_2015-2016.pdf (accessed 30 October 2025).

23.

Comission sur les soins de fin de vie - Gouvernement de Quebec. Rapport annuel d'activités 1er jullet 2016 - 30 juin 2017. 2017. https://csfv.gouv.qc.ca/fileadmin/docs/rapports_annuels/csfv_rapport_activites_2016-2017.pdf (accessed 30 October 2025).

24.

Comission sur les soins de fin de vie - Gouvernement de Quebec. Rapport annuel d'activités 1er juillet 2017 - 31 mars 2018. 2018. https://csfv.gouv.qc.ca/fileadmin/docs/rapports_annuels/csfv_rapport_activites_2017-2018.pdf (accessed 30 October 2025).

25.

Comission sur les soins de fin de vie - Gouvernement de Quebec. Rapport annuel d'activités 1er avril 2018 - 31 mars 2019. 2019. https://csfv.gouv.qc.ca/fileadmin/docs/rapports_annuels/csfv_rapport_activites_2018-2019.pdf (accessed 30 October 2025).

26.

Comission sur les soins de fin de vie - Gouvernement de Quebec. Rapport annuel d'activités 1er avril 2020 - 31 mars 2021. 2021. https://csfv.gouv.qc.ca/fileadmin/docs/rapports_annuels/csfv_rapport_activites_2020-2021.pdf (accessed 30 October 2025).

27.

Comission sur les soins de fin de vie - Gouvernement de Quebec. Rapport annuel d'activités 1er avril 2021 - 31 mars 2022. 2022. https://csfv.gouv.qc.ca/fileadmin/docs/rapports_annuels/csfv_rapport_activites_2021-2022.pdf (accessed 30 October 2025).

28.

Comission sur les soins de fin de vie - Gouvernement de Quebec. Rapport annuel d'activités 1er avril 2023 - 31 mars 2024. 2024. https://csfv.gouv.qc.ca/fileadmin/docs/rapports_annuels/csfv_rapport_activites_2023-2024.pdf (accessed 30 October 2025).

29.

de Graeff

Dean

. Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards. J Palliat Med 2007; 10: 67–85.

30.

Ciancio

Mirza

Ciancio

, et al. The use of palliative sedation to treat existential suffering: a scoping review on practices, ethical considerations, and guidelines. J Palliat Care 2020; 35: 13–20.

31.

Rodrigues

Crokaert

Gastmans

. Palliative sedation for existential suffering: a systematic review of argument-based ethics literature. J Pain Symptom Manag 2018; 55: 1577–1590.

32.

Voeuk

Nekolaichuk

Fainsinger

, et al. Continuous palliative sedation for existential distress? A survey of Canadian palliative care physicians’ views. J Palliat Care 2017; 32: 26–33.

33.

Young

Winters

Jaye

, et al. Patients’ views on end-of-life practices that hasten death: a qualitative study exploring ethical distinctions. Ann Palliat Med 2021; 10: 3563–3574.

34.

Juth

Lindblad

Lynöe

, et al. Moral differences in deep continuous palliative sedation and euthanasia. BMJ Support Palliat Care 2013; 3: 203–206.

35.

Supreme Court of Canada. Carter v. Canada (Attorney General) - SCC Cases. 2015. https://decisions.scc-csc.ca/scc-csc/scc-csc/en/item/14637/index.do (accessed 30 October 2025).

36.

Downar

MacDonald

Buchman

. What drives requests for MAiD? Can Med Assoc J 2023; 195 (40).

37.

Thabet

Wheatley-Price

Moore

. Medical assistance in dying in patients with cancer. JCO Oncol Pract 2023; 19: 819–827.

38.

Nolen

Olwi

Debbie

. Impact of legalization of medical assistance in dying on the use of palliative sedation in a Tertiary Care Hospital: a retrospective chart review. Am J Hosp Palliat Med 2022; 39: 442–447.

39.

Health Canada. Fifth annual report on medical assistance in dying in Canada, 2023. 2024. https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2023.html (accessed 30 October 2025).

40.

Klein

Voss

Ostgathe

, et al. Sedation in palliative care—a clinically oriented overview of guidelines and treatment recommendations. Dtsch Ärztebl Int 2023; 120: 235–242.

41.

Jones

Hirst

Edmonds

, et al. A case report of phenobarbital for proportionate sedation to control refractory symptoms at the end of life in an opioid tolerant patient. J Pain Palliat Care Pharmacother 2021; 35: 167–174.

42.

Morita

Chinone

Ikenaga

, et al. Efficacy and safety of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan. J Pain Symptom Manag 2005; 30: 320–328.

43.

Downar

Goldman

Pinto

, et al. The “surprise question” for predicting death in seriously ill patients: a systematic review and meta-analysis. Can Med Assoc J 2017; 189 (13).

44.

Stone

Buckle

Dolan

, et al. Prognostic evaluation in patients with advanced cancer in the last months of life: ESMO Clinical Practice Guideline. ESMO Open 2023; 8: 101195.

45.

Institut National d'Excellence en Santé et en Services Sociaux de Québec. Administration of drugs prescribed via an individual prescription in the event of distress for a person receiving palliative care. 2020. https://www.inesss.qc.ca/fileadmin/doc/INESSS/Ordonnances_collectives/Detresse/INESSS_PMN_Distress_Protocol.pdf (accessed 30 October 2025) .

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.02 MB

Demographic and clinical characteristics,practices,and outcomes of continuous palliative sedation: A multi-setting,province-wide retrospective cohort study

Abstract

Background:

Aim:

Design:

Setting/participants:

Results:

Conclusions:

Keywords

Key statements

Introduction

Methods

Research design

Population

Clinical settings

Data extraction

Statistical analysis

Results

Discussion

Main findings

What this study adds

Strengths and limitations of the study

Supplemental Material

sj-docx-1-pmj-10.1177_02692163251403417 – Supplemental material for Demographic and clinical characteristics, practices, and outcomes of continuous palliative sedation: A multi-setting, province-wide retrospective cohort study

Footnotes

Acknowledgements

ORCID iDs

Ethical considerations

Author contributions

Funding

Declaration of conflicting interests

Data availability statement

Supplemental material

References

Supplementary Material