Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability.

As more jurisdictions consider legalizing medical assistance in dying or assisted death (AD), there is an ongoing debate about whether AD is driven by socioeconomic deprivation or inadequate supportive services. Attention has shifted away from population studies that refute this narrative, and focused on individual cases reported in the media that would appear to support these concerns. In this editorial, the authors address these concerns using recent experience in Canada, and argue that even if we accept these stories at face value, the logical policy response would be to address the root causes of structural vulnerability rather than attempt to restrict access to AD. In terms of concerns about safety, the authors go on to point out the parallels between media reports about the misuse of AD and reports of wrongful deaths due to the misuse of palliative care (PC) in jurisdictions where AD was not legal. Ultimately, we cannot justify having a different response to these reports when they apply to AD instead of PC, and nobody has argued that PC should be criminalized in response to such reports. If we are skeptical of the oversight mechanisms used for AD in Canada, we must be equally skeptical of the oversight mechanisms used for end-of-life care in every jurisdiction where AD is not legal, and ask whether prohibiting AD protects the lives of the vulnerable any better than legalization of AD with safeguards.

Medical Assistance in Dying and Palliative Care: Shared Trajectories.

Medical Assistance in Dying (MAID) and palliative care often have an antagonistic relationship in jurisdictions where both are legal, but the early ethical and legal history of palliative care closely mirrors that of MAID in important ways. Palliative practices that are commonplace today were considered homicide or "medically assisted death" in most jurisdictions until quite recently. Moreover, while many patients request MAID today for reasons that are criticized as "ableist," the same rationale is accepted without comment or judgment when used to justify withdrawal of life support or a discontinuation of life-prolonging therapies. Concerns about factors that undermine autonomous decisions for MAID would apply equally to routine palliative care practices. By the same token, palliative care exists because no field in medicine is able to fix every problem it encounters. It is ironic, therefore, that some palliative care providers oppose MAID with the hubristic argument that we can relieve all forms of suffering. Palliative care providers may choose not to participate in MAID, but palliative care and MAID do not have to be mutually exclusive and are often complementary and synergistic for patients and families.

Building capacity for palliative care delivery in primary care settings: Mixed-methods evaluation of the INTEGRATE Project.

OBJECTIVE: To evaluate an intervention aimed at building capacity to deliver palliative care in primary care settings. DESIGN: The INTEGRATE Project was a 3-year pilot project involving interprofessional palliative care education and an integrated care model to promote early identification and support of patients with palliative care needs. A concurrent mixed-methods evaluation was conducted using descriptive data, provider surveys before and after implementation, and interviews with providers and managers. SETTING: Four primary care practices in Ontario. PARTICIPANTS: All providers in each practice were invited to participate. Providers used the "surprise question" as a prompt to determine patient eligibility for inclusion. MAIN OUTCOME MEASURES: Provider attitudes toward and confidence in providing palliative care, use of palliative care tools, delivery of palliative care, and perceived barriers to delivering palliative care. RESULTS: A total of 294 patients were identified for early initiation of palliative care, most of whom had multiple comorbid conditions. Results demonstrated improvement in provider confidence to deliver palliative care (30% mean increase, P < .05) and self-reported use of palliative care tools and services (25% mean increase, P < .05). There was substantial variation across practices regarding the percentage of patients identified using the surprise question (0.2% to 1.5%), the number of advance care planning conversations initiated (50% to 90%), and mean time to conversation (13 to 76 days). This variation is attributable, in part, to contextual differences across practices. CONCLUSION: A standardized model for the early introduction of palliative care to patients can be integrated into the routine practice of primary care practitioners with appropriate training and support. Additional research is needed to understand the practice factors that contribute to the success of palliative care interventions in primary care and to examine patient outcomes.

Assessing the Impact of Early Identification of Patients Appropriate for Palliative Care on Resource Use and Costs in the Final Month of Life.

PURPOSE: This study evaluates whether an intervention to identify Canadian patients eligible for a palliative approach changes the use of health care resources and costs within the final month of life. METHODS: Between 2014 and 2017, physicians identified 1,187 patients in family practice units and cancer centers who were likely to die within 1 year based on diagnosis, symptom assessment, and performance status. A multidisciplinary intervention that included activation of community resources and initiation of palliative planning was started. By using propensity-score matching, patients in the intervention group were matched 1:1 with nonintervention controls selected from provincial administrative data. We compared health care use and costs (using 2017 Canadian dollars) for 30 days before death between patients who died within the 1-year follow-up and matched controls. RESULTS: Groups (n = 629 in each group) were well-balanced in sociodemographic characteristics, comorbidities, and previous health care use. In the last 30 days, there was no differences in proportions between the two groups of patients regarding emergency department visits, intensive care unit admissions, or inpatient hospitalizations. However, patients in the intervention group had greater use of palliative physician encounters, community home care visits, and/or physician home visits (92.8% v 88.4%; P = .007). In the 507 pairs with cancer, more patients in the intervention group underwent chemotherapy (44% v 33%; P < .001) and radiation (18.7% v 3.2%; P = .043) in the last 30 days. Mean cost per patient was similar for the intervention group (mean, $17,231; 95% CI, $16,027 to $18,436) and for the control group (mean, $16,951; 95% CI, $15,899 to $18,004). CONCLUSION: Even with the limitations in our observational study design, identification of palliative patients did not significantly change overall costs but may shift resources toward palliative services.

Does early palliative identification improve the use of palliative care services?

PURPOSE: To evaluate whether the early identification of patients who may benefit from palliative care impacts on the use of palliative, community and acute-based care services. METHODS: Between 2014 and 2017, physicians from eight sites were encouraged to systematically identify patients who were likely to die within one year and would were thought to benefit from early palliative care. Patients in the INTEGRATE Intervention Group were 1:1 matched to controls selected from provincial healthcare administrative data using propensity score-matching. The use of palliative care, community-based care services (home care, physician home visit, and outpatient opioid use) and acute care (emergency department, hospitalization) was each evaluated within one year after the date of identification. The hazard ratio (HR) in the Intervention Group was calculated for each outcome. RESULTS: Of the 1,185 patients in the Intervention Group, 951 (80.3%) used palliative care services during follow-up, compared to 739 (62.4%) among 1,185 patients in the Control Group [HR of 1.69 (95% CI 1.56 to 1.82)]. The Intervention Group also had higher proportions of patients who used home care [81.4% vs. 55.2%; HR 2.07 (95% CI 1.89 to 2.27)], had physician home visits [35.5% vs. 23.7%; HR 1.63 (95% CI 1.46 to 1.92)] or had increased outpatient opioid use [64.3% vs. 52.1%); HR 1.43 (95% CI 1.30 to 1.57]. The Intervention Group was also more likely to have a hospitalization that was not primarily focused on palliative care (1.42 (95% CI 1.28 to 1.58)) and an unplanned emergency department visit for non-palliative care purpose (1.47 (95% CI 1.32 to 1.64)). CONCLUSION: Physicians actively identifying patients who would benefit from palliative care resulted in increased use of palliative and community-based care services, but also increased use of acute care services.

Integrating early palliative care into routine practice for patients with cancer: A mixed methods evaluation of the INTEGRATE Project.

OBJECTIVE: With increasing evidence from controlled trials on benefits of early palliative care, there is a need for studies examining implementation in real-world settings. The INTEGRATE Project was a 3-year real-world project that promoted early identification and support of patients with cancer who may benefit from palliative care. This study assesses feasibility, stakeholder experiences, and early impact of the INTEGRATE Project METHODS: The INTEGRATE Project was implemented in four cancer centers in Ontario, Canada, and consisted of interdisciplinary provider education and an integrated care model. Providers used the Surprise Question to identify patients for inclusion. A mixed methods evaluation of INTEGRATE was conducted using descriptive data, interviews with providers and managers, and provider surveys. RESULTS: A total of 760 patients with cancer (lung, glioblastoma, head and neck, gastrointestinal) were included. Results suggest improvement in provider confidence to deliver palliative care and to initiate the Advanced Care Planning (ACP) conversation. The majority of patients (85%) had an ACP or goals of care (GOC) conversation initiated within a mean time to conversation of 5-46 days (SD 20-93) across centers. A primary care report was transmitted to family doctors 48-100% of the time within a mean time to transmission of 7-54 days (SD 9-27) across centers. Enablers and barriers influencing success of the model were also identified. CONCLUSIONS: A standardized model for the early introduction of palliative care for patients with cancer can be integrated into the routine practice of oncology providers, with appropriate education, integration into existing clinical workflows, and administrative support.

Loss of relationship: a qualitative study of families and healthcare providers after patient death and home-based palliative care ends.

BACKGROUND: Home-based palliative care is care of the patient in their home, while doctors and other healthcare providers (HCPs) make visits as required. Family involvement naturally cultivates a relationship between HCPs and the family. Once the patient dies and home-based palliative care ends, this relationship is abruptly terminated, which may be challenging to both the family and the HCPs. The objective of this study was to understand the thoughts and opinions of HCPs and families on their encountered loss of relationship at the end of home-based palliative care. METHODS: Perceptions of 63 participants (32 HCPs and 31 family members) were explored using semi-structured interviews and the qualitative research methodologies of grounded theory. HCPs were interviewed at the Temmy Latner Centre for Palliative Care (TLCPC), a home-based palliative care group of physicians, and 2 hospitals in Toronto, while family members were recruited from TLCPC's records of deceased patients. RESULTS: Six overarching themes, relating to HCP-family relationship dynamics, the experience of loss of relationship, and potential solutions, were derived from the data: (I) home palliative care is intimate; (II) dissatisfaction is experienced with abrupt relationship ending; (III) families benefit from open communication, especially after patient death; (IV) HCPs recognize the insufficiency in bereavement resources; (V) benefits are recognized for a system to ease loss of relationship, and lastly; (VI) challenges with introducing such a system concern HCP. CONCLUSIONS: Overall, families and HCPs do not like the loss of relationship post-patient death, and recognize the potential benefits of an approach that would allow for communication going forward.

Do family health clinics provide primary-level palliative care in Ontario and the eastern regions of Quebec?

OBJECTIVE: To explore the extent to which family health clinics in Ontario and the eastern regions of the province of Quebec provide palliative care. DESIGN: A cross-sectional survey. SETTING: Ontario and the eastern regions of Quebec. PARTICIPANTS: The clinic leads of a select group of family health clinics with patient enrolment models in Ontario and the eastern regions of Quebec. MAIN OUTCOME MEASURES: The types of palliative care services that the clinics provide, as well as the enablers of and barriers to providing palliative care within the 2 provinces. RESULTS: The overall response rate was 32%. Clinics in both provinces reported providing palliative care to ambulatory patients (83% of Ontario clinics and 74% of Quebec clinics). Only 29 of 102 (28%) Ontario clinics provided on-call services themselves, compared with 31 of 34 (91%) Quebec clinics, with the resulting effect being that more patients were directed to emergency departments in Ontario. Access to palliative care specialist teams for support was higher in Ontario than in Quebec (67% vs 41%, respectively). In Ontario, 56% of practices indicated that they had access to palliative care physicians who could take over the care of their patients with palliative care needs, but a lower number (44%) actually handed over care to these physicians. CONCLUSION: A group of clinics are providing full palliative care services to their own patients with palliative care needs, including "on-call" services and home visits, and these serve as role models. In Ontario in particular, substantial gaps still exist with respect to clinics providing their own after-hours coverage and home visits; many rely on other services to provide that care. In Quebec, lack of access to palliative care specialist teams appears to be a key challenge in the areas included in this survey. This survey could help policy makers and funders of health care services ensure that appropriate conditions are put in place for optimal palliative care provision in these clinics, such as coordinating access to on-call coverage and support from palliative care specialist teams, as well as providing education to all physicians and adequate remuneration.

Providing Medical Assistance in Dying within a Home Palliative Care Program in Toronto, Canada: An Observational Study of the First Year of Experience.

BACKGROUND: Medical Assistance in Dying (MAiD) was legalized in Canada in June 2016. There are no documented experiences of MAiD provision within a home palliative care program. The majority of palliative care physicians in Canada object to MAiD. As one of the largest home-based palliative care providers in Canada, the Temmy Latner Centre for Palliative Care (TLCPC) developed processes to implement MAiD provision within a home palliative care team with diverse attitudes toward MAiD. OBJECTIVE: To demonstrate the feasibility of providing MAiD within a home palliative care setting and describe the population that received MAiD in the first year of legalization. DESIGN: A retrospective chart review identified patients who received or were assessed for MAiD and had a known outcome between June 17, 2016 and June 30, 2017. SETTING/SUBJECTS: Patients receiving home-based palliative care. MEASUREMENTS: Data extracted included age, gender, primary diagnosis, length of time receiving home-based palliative care, and final clinical outcome. RESULTS: Of the 45 patients who were assessed for MAiD, 27 (60%) received MAiD and 18 (40%) did not. The mean age was 74 (range 20-95), 24 (53%) were male, and 33 (73%) had cancer as a primary diagnosis. These 27 patients represent 1.2% of our total patient population during this time period. CONCLUSIONS: MAiD was accessed by 1.2% of the patients within a home palliative care center in the first year of legalization. Patient demographics were consistent with those documented elsewhere. The TLCPC process accommodates the diverse viewpoints of clinicians and emphasizes continuity of palliative care provision.

Equity and practice issues in colorectal cancer screening: Mixed-methods study.

OBJECTIVE: To investigate overall colorectal cancer (CRC) screening rates, patterns in the use of types of CRC screening, and sociodemographic characteristics associated with CRC screening; and to gain insight into physicians' perceptions about and use of fecal occult blood testing [FOBT] and colonoscopy for patients at average risk of CRC. DESIGN: Mixed-methods study using cross-sectional administrative data on patient sociodemographic characteristics and semistructured telephone interviews with physicians. SETTING: Toronto, Ont. PARTICIPANTS: Patients aged 50 to 74 years and physicians in family health teams in the Toronto Central Local Health Integration Network. MAIN OUTCOME MEASURES: Rates of CRC screening by type; sociodemographic characteristics associated with CRC screening; thematic analysis using constant comparative method for semistructured interviews. MAIN FINDINGS: Ontario administrative data on CRC screening showed lower overall screening rates among those who were younger, male patients, those who had lower income, and recent immigrants. Colonoscopy rates were especially low among those with lower income and those who were recent immigrants. Semistructured interviews revealed that physician opinions about CRC screening for average-risk patients were divided: one group of physicians accepted the evidence and recommendations for FOBT and the other group of physicians strongly supported colonoscopy for these patients, believing that the FOBT was an inferior screening method. Physicians identified specialist recommendations and patient expectations as factors that influenced their decisions regarding CRC screening type. CONCLUSION: There was considerable variation in CRC screening by sociodemographic characteristics. A key theme that emerged from the interviews was that physicians were divided in their preference for FOBT or colonoscopy; factors that influenced physician preference included the health care system, recommendations by other specialists, and patient characteristics. Providing an informed choice of screening method to patients might result in higher screening rates and fewer disparities. Changes in policy and physician attitudes might be needed in order for this to occur.

Integrating cancer care beyond the hospital and across the cancer pathway: a patient-centred approach.

Cancer patients constitute one of the most complex, diverse and growing patient populations in Canada. Like other high-needs patient groups, cancer patients desire a more integrated approach to care delivery that spans organizational and professional boundaries. This article provides an overview of Cancer Care Ontario's experience in fostering a more integrated cancer system, and describes the organization's emerging focus on patient-centred models of integrated care through the whole cancer pathway, from prevention to end-of-life care and survivorship.

Are family medicine residents adequately trained to deliver palliative care?

OBJECTIVE: To explore educational factors that influence family medicine residents' (FMRs') intentions to offer palliative care and palliative care home visits to patients. DESIGN: Qualitative descriptive study. SETTING: A Canadian, urban, specialized palliative care centre. PARTICIPANTS: First-year (n = 9) and second-year (n = 6) FMRs. METHODS: Semistructured interviews were conducted with FMRs following a 4-week palliative care rotation. Questions focused on participant experiences during the rotation and perceptions about their roles as family physicians in the delivery of palliative care and home visits. Participant responses were analyzed to summarize and interpret patterns related to their educational experience during their rotation. MAIN FINDINGS: Four interrelated themes were identified that described this experience: foundational skill development owing to training in a specialized setting; additional need for education and support; unaddressed gaps in pragmatic skills; and uncertainty about family physicians' role in palliative care. CONCLUSION: Residents described experiences that both supported and inadvertently discouraged them from considering future engagement in palliative care. Reassuringly, residents were also able to underscore opportunities for improvement in palliative care education.

Guideline harmonization and implementation plan for the BETTER trial: Building on Existing Tools to Improve Chronic Disease Prevention and Screening in Family Practice.

BACKGROUND: The aim of the Building on Existing Tools to Improve Chronic Disease Prevention and Screening in Family Practice (BETTER) randomized controlled trial is to improve the primary prevention of and screening for multiple conditions (diabetes, cardiovascular disease, cancer) and some of the associated lifestyle factors (tobacco use, alcohol overuse, poor nutrition, physical inactivity). In this article, we describe how we harmonized the evidence-based clinical practice guideline recommendations and patient tools to determine the content for the BETTER trial. METHODS: We identified clinical practice guidelines and tools through a structured literature search; we included both indexed and grey literature. From these guidelines, recommendations were extracted and integrated into knowledge products and outcome measures for use in the BETTER trial. End-users (family physicians, nurse practitioners, nurses and dieticians) were engaged in reviewing the recommendations and tools, as well as tailoring the content to the needs of the BETTER trial and family practice. RESULTS: In total, 3-5 high-quality guidelines were identified for each condition; from these, we identified high-grade recommendations for the prevention of and screening for chronic disease. The guideline recommendations were limited by conflicting recommendations, vague wording and different taxonomies for strength of recommendation. There was a lack of quality evidence for manoeuvres to improve the uptake of guidelines among patients with depression. We developed the BETTER clinical algorithms for the implementation plan. Although it was difficult to identify high-quality tools, 180 tools of interest were identified. INTERPRETATION: The intervention for the BETTER trial was built by integrating existing guidelines and tools, and working with end-users throughout the process to increase the intervention's utility for practice. TRIAL REGISTRATION: ISRCTN07170460.