Palliative care helps improve the quality of life of individuals facing life-limiting illness throughout the course of their disease. In Canada, delivery and access to palliative care has been fraught with challenges including differential availability of services based on geography, funding, language, and socioeconomic status. Many groups, including the World Health Organization, have advocated for a public health approach to palliative care as an antidote to fragmented service delivery. Multiple scholars, academics, and public health advocates have suggested that a public health approach to palliative care can help with issues of access, equity, and cost. Through the lens of Kingdon’s Multiple Streams Framework, this commentary will explore potential reasons why a public health approach to palliative care has not been adopted in the Canadian context and why this is an opportune time to consider this policy innovation. The Compassionate Communities concept is discussed as a potential solution to a public health approach to palliative care delivery.
Background: Early referral of cancer patients for palliative care significantly improves the quality of life. It is not clear which patients can benefit from an early referral, and when the referral should occur. A Delphi Panel study proposed 11 major criteria for an outpatient palliative care referral.
Objective: To operationalize major Delphi criteria in a cohort of lung cancer patients, using a prospective approach, by linking health administrative data.
Design: Population-based observational cohort study.
Setting/Subjects: The study population comprised 38,851 cases of lung cancer in the Ontario Cancer Registry, diagnosed from January 1, 2012, to December 31, 2016.
Measurements: We operationalized 6 of the 11 major criteria (4 diagnosis or prognosis based and 2 symptom based). Patients were considered eligible (index event) for palliative care if they qualified for any criterion. Among eligible patients, we identified those who received palliative care.
Results: Twenty-eight thousand one hundred sixty-four patients were eligible for palliative care by qualifying for either the diagnosis- or prognosis-based criteria (n = 21,036, 76.5%), or for symptom-based criteria (n = 7128, 23.5%). A total of 23,199 (82.4%) patients received palliative care. The median time from palliative care eligibility to the receipt of first palliative care or death or maximum study follow-up was 56 days (range = 17–348).
Conclusions: We operationalized six major criteria that identified the majority of lung cancer patients who were eligible for palliative care. Most eligible patients received the palliative care before death. Future research is warranted to test these criteria in other cancer populations.
Palliative care is an evolving field with extensive studies demonstrating its benefits to patients, families, and the health care system. Many health systems have developed or are developing palliative care programs. The Canadian Society of Palliative Care Physicians (CSPCP) is often asked to recommend how many palliative care specialists are needed to implement and support an integrated palliative care program. This information would allow health service decision makers and educational institutions to plan resources accordingly to manage the needs of their communities. The CSPCP is well positioned to answer this question, as many of its members are Directors of palliative care programs and have been responsible for creating and overseeing the pioneering work of building these programs over the past few decades. In 2017, the CSPCP commissioned a working group to develop a staffing model for specialist palliative care teams based on the interdependence of three key professional roles, an extensive literature search, key stakeholder interviews, and expert opinions. This article is the Canadian Society of Palliative Care's recommended starting point that will be further evaluated as it is utilized across Canada.
For more information and to see sample calculations go to the Canadian Society of Palliative Care Physicians Staffing Model for Palliative Care Programs (https://www.cspcp.ca).
Les mesures de confinement qui prévalent dans plus d'une centaine de pays touchés par la pandémie de COVID-19 ont bouleversé de manière tragique l'accompagnement des personnes en fin de vie et le processus de deuil de leurs proches aidants. Dans cet article, nous recensons les écrits sur le deuil et analysons les conséquences potentielles du contexte de pandémie sur l'expérience des individus endeuillés. Ensuite, nous explorons les modalités de soutien alternatives qui s'offrent aux personnes éprouvées par la perte d'un proche en raison de la pandémie. Puis, en nous appuyant sur la littérature répertoriée et sur le modèle des communautés compatissantes, nous présentons le projet "J'accompagne", dont la mission est de créer une communauté virtuelle de soutien autour des proches aidants et des endeuillés par la COVID-19.
On March 11, 2020 the World Health Organization classified COVID-19, caused by Sars-CoV-2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision-making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long-term versus short-term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as 'lottery' or 'first come, first served'. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy-making.
Objective: There are limited data on patient-reported outcomes near the end of life in patients with gynaecologic cancers. This study aimed to assess the symptom burden in the last 6 months of life in a real-world cohort.
Methods: Patients diagnosed with metastatic gynaecologic malignancies from 2016 to 2019 who completed the revised Edmonton Symptom Assessment System (ESASr) questionnaire within 6 months of death in a large Canadian province were identified. Patient-reported symptom scores were categorized as none to mild (0–3) and moderate to severe (4–10). Individual symptoms were subsequently grouped into physical, psychological, and total subscores. The severity of symptoms was further analyzed for any associations with age, time to death, and primary tumour site (ovarian vs. uterocervical and vulvovaginal).
Results: We identified 107 patients with gynaecologic malignancies including 59 ovarian, 29 uterocervical, and 19 vulvovaginal cancers. The median ages at diagnosis and questionnaire completion were 64 and 65 years, respectively. The median time from completing the ESASr questionnaire to death was 65 days. Overall, physical and psychological symptoms were moderate to severe in 57.9% and 40.2% of patients, respectively. Among the individual symptoms, tiredness was the most commonly reported moderate to severe symptom (74.9%), while shortness of breath was least commonly reported (31.6%). While physical (P < 0.001) and total symptom (P = 0.009) subscores were more likely to be moderate to severe in intensity as death approached, the psychological subscore (P = 0.744) had no relationship with time to death. Longer time to death was predictive of lower physical (P = 0.002) and total symptom (P = 0.002) subscores, while a primary uterocervical cancer site was associated with a lower psychological symptom subscore (P = 0.042).
Conclusions: In the real-world setting, unique symptom trajectories can emerge for patients with gynaecologic cancer near the end of life. Knowledge of these specific symptom patterns can help inform the development and delivery of targeted palliative interventions to improve quality of life for these patients.
Context: Many countries have aging populations. Thus, the need for palliative care will increase. However, the methods to estimate optimal staffing for specialist palliative care teams are rudimentary as yet.
Objectives: To develop a population-need, workforce planning model for community-based palliative care specialist teams and to apply the model to forecast the staff needed to care for all patients with terminal illness, organ failure, and frailty over the next twenty years, with and without the expansion of primary palliative care.
Methods: We used operations research (linear programming) to model the problem. We used the framework of the Canadian Society of Palliative Care Physicians and the Nova Scotia palliative care strategy to apply the model.
Results: To meet the palliative care needs for persons dying across Nova Scotia in 2019, the model generated an estimate of 70.8 nurses, 23.6 physicians and 11.9 social workers, a total of 106.3 staff. Thereby, the model indicated that a 64% increase in specialist palliative care staff was needed immediately, and a further 13.1% increase would be needed over the next 20 years. Trained primary palliative care providers currently meet 3.7% of need, and with their expansion are expected to meet 20.3% by 2038.
Conclusion: Historical, current, and projected data can be used with operations research to forecast staffing levels for specialist palliative care teams under various scenarios. The forecast can be updated as new data emerges, applied to other populations, and used to test alternative delivery models.
A Nova Scotia man is free to seek a medically assisted death in the next few days after the province’s Court of Appeal refused to extend a temporary injunction granted to his wife, who claimed that he was exaggerating his illness and did not qualify.
The case, which has led the anonymous couple to separate after a marriage of nearly 50 years, comes as Canada’s assisted dying law is in a state of flux. The country’s Supreme Court has declared the current law overly restrictive in that it requires two doctors to certify that the patient faces a “reasonably foreseeable” death from a condition, as well as unbearable suffering.
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Since the 2015 Canadian legalization of medical assistance in dying (MAiD), many Canadian music therapists have become involved in the care of those requesting this procedure. This qualitative study, the first of its kind, examines the experience of music therapy within MAiD, exploring lived experience from three perspectives: the patient, their primary caregiver, and the music therapist/researcher. Overall thematic findings of a hermeneutic phenomenological analysis of ten MAiD cases demonstrate therapeutically beneficial outcomes in terms of quality of life, symptom management, and life review. Further research is merited to continue an exploration of the role of music therapy in the context of assisted dying.
COVID-19 was first reported in Wuhan, China, in December 2019; it rapidly spread around the world and was declared a global pandemic by the World Health Organization in March 2020. The palliative care program at the Princess Margaret Cancer Centre, Toronto, Canada, provides comprehensive care to patients with advanced cancer and their families, through services including an acute palliative care unit, an inpatient consultation service, and an ambulatory palliative care clinic. In the face of a global pandemic, palliative care teams are uniquely placed to support patients with cancer who also have COVID-19. This may include managing severe symptoms such as dyspnea and agitation, as well as guiding advance care planning and goals of care conversations. In tandem, there is a need for palliative care teams to continue to provide care to patients with advanced cancer who are COVID-negative but who are at higher risk of infection and adverse outcomes related to COVID-19. This paper highlights the unique challenges faced by a palliative care team in terms of scaling up services in response to a global pandemic while simultaneously providing ongoing support to their patients with advanced cancer at a tertiary cancer center.
Background: Patients often view “palliative care” (PC) as an approach that is synonymous with end-of-life and death, leading to shock and fear. Differing cultural and social norms and religious affiliations greatly determine perception of PC among diverse populations.
Methods: This prospective observational study aimed to explore perceptions of PC among South Asian community members at one Canadian site. Patients who identified themselves as being of South Asian origin were consented and enrolled at a PC Clinic at a community hospital in Brampton, Ontario serving a large South Asian population. Participants filled out an 18-question survey created for the study and responded to a semi-structured interview consisting of 8 questions that further probed their perceptions of PC. Survey responses and semi-structured interviews content were analyzed by four authors who reached consensus on key exploratory findings.
Results: Thirty-four participants of South Asian origin were recruited (61.8% males), and they were distributed by their age group as follows: [(30–49) - 18%; (50–64) – 21%; (65–79) - 41%; (= 80) – 21%]. Five main exploratory findings emerged: (i) differing attitudes towards talking about death; (ii) the key role of family in providing care; (iii) a significant lack of prior knowledge of PC; (iv) a common emphasis on the importance of alleviating suffering and pain to maintain comfort; and (v) that cultural values, faith, or spiritual belief do not pose a necessary challenge to acceptance of PC services.
Conclusions: Observations from this study provide a source of reference to understand the key findings and variability in perceptions of palliative care in South Asian communities. Culturally competent interventions based on trends observed in this study could assist Palliative Physicians in delivering personalized care to South Asian populations.
End-of-life (EOL) care is a key aspect of critical care medicine (CCM) training. The goal of this study was to survey CCM residents and program directors (PDs) across Canada to describe current EOL care education. Using a literature review, we created a self-administered survey encompassing 10 CCM national objectives of training to address: (1) curricular content and evaluation methods, (2) residents' preparedness to meet these objectives, and (3) opportunities for educational improvement. We performed pilot testing and clinical sensibility testing, then distributed it to all residents and PDs across the 13 Canadian CCM programs. Our response rate was 84.3% overall (77 [81.1%] for residents and 13 [100%] for PDs). Residents rated direct observation, informal advice, and self-reflection as both the top 3 most utilized and perceived most effective teaching modalities. Residents most commonly reported comfort with skills related to pain and symptom management (n = 67, 94.3%; score > 3 on 5-point Likert scale), and least commonly reported comfort with donation after cardiac death skills (n = 26-38; 44.8%-65.5%). Base specialty and time in CCM training were independently associated with comfort ratings for some, but not all, EOL skills. With respect to family meetings, residents infrequently received feedback; however, most PDs believed feedback on 6 to 10 meetings is required for competence. When PD perceptions of teaching effectiveness were compared with resident comfort ratings, differences were most apparent for skills related to pain and symptom management, cultural awareness, and ethical principles. By the end of their first subspecialty training year, PDs expect residents to be competent at most, but not all, EOL skills. In summary, trainees and programs rely on clinical activities to develop competency in EOL care, resulting in some educational gaps. Transitioning to competency-based medical education presents an opportunity to address some of these gaps, while other gaps will require more specific curricular intervention.
BACKGROUND: Donation after circulatory determination of death (DCD) is responsible for the largest increase in deceased donation over the past decade. When the Canadian DCD guideline was published in 2006, it included recommendations to create standard policies and procedures for withdrawal of life-sustaining measures (WLSM) as well as quality assurance frameworks for this practice. In 2016, the Canadian Critical Care Society produced a guideline for WLSM that requires modifications to facilitate implementation when DCD is part of the end-of-life care plan.
METHODS: A pan-Canadian multidisciplinary collaborative was convened to examine the existing guideline framework and to create tools to put the existing guideline into practice in centres that practice DCD.
RESULTS: A set of guiding principles for implementation of the guideline in DCD practice were produced using an iterative, consensus-based approach followed by development of four implementation tools and three quality assurance and audit tools.
CONCLUSIONS: The tools developed will aid DCD centres in fulsomely adapting the Canadian Critical Care Society Withdrawal of Life-Sustaining Measures guideline.
Background: Options available to Canadians at the end of life increased with the legalization of medical assistance in dying (MAiD). Bill C-14 modified the Canadian Criminal Code allowing individuals who meet very specific criteria to receive a medical intervention to hasten their death. June 2019 marked 3 years since the legislation has changed and while met with favour from most Canadians who believe it will provide enhanced options for quality of life at the end of life, there remains much debate over both its moral implications and practical components. Little is known regarding the Canadian healthcare provider experience with MAiD, in particular in rural and remote parts of the country such as northwestern Ontario.
Objectives: The purpose of this study was to explore physicians' experiences in Northwestern Ontario with MAiD. The geographic location of this study is of particular significance as physicians in rural and remote parts of Canada face unique challenges in the provision of high-quality palliative and end-of-life services. This qualitative research focused on developing a better understanding of physicians' perceptions and practices with MAiD, in particular regarding access, decision-making, provision of service and role clarity.
Methods: The researchers employed an exploratory qualitative research approach, using 1 semi-structured focus group and 18 semi-structured interviews comprising 9 set of questions. Data were collected through audio-taped semi-structured interviews, in person and by telephone.
Findings: Four distinct but interconnected themes emerged from thematic analysis of the transcripts of the focus group and interviews: physician perception of patient awareness, appreciation and understanding of MAiD; challenges providing true choice at end of life; burgeoning relationships between palliative care and MAiD; and physician recommendations.
Conclusion: The results of this study provide a snapshot of the Northwestern physician experiences with MAiD and contribute to the growing body of work exploring these issues on a national scale. MAiD is highlighted as both a rewarding and challenging experience for physicians in Northwestern Ontario in this study.
OBJECTIVE: Although stakeholders' participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units and providers who work with them.
DESIGN/METHODS: Mixed methods convergent analysis.
SETTING: Canadian paediatric tertiary care university hospital.
PARTICIPANTS: All bereaved members of the resource parents group (n=8) and most providers who work with them (n=16) answered a satisfaction/needs questionnaires.
RESULTS: Since 2011, eight bereaved parents were involved in a large number of activities mostly related to palliative care (research, education or clinical care initiatives). Three engaged in peer-to-peer support activities while the others preferred activities outside of clinical units and/or without direct interactions with other families. All of them reported that their participation had positive impacts, but two parents also reported a reactivation of traumatic experiences during a medical simulation activity. All participants expressed a desire for further collaboration. Motivation to contribute gravitated around two central themes: helping others and helping themselves. Many wanted to give back, help other families, improve the system and meet with providers who had cared for their child. All stated that this kind of involvement empowered them and gave meaning to their experiences. Providers and researchers all reported positive experiences, mainly due to the unique perspectives of bereaved parents who took part in their projects.
CONCLUSIONS: With careful recruitment and supervision, some bereaved parents can become resource parents involved in different types of activities. It is important to understand the positive impacts this type of engagement can have on their healing process and to control the risks related to their participation. Research is needed to develop pertinent tools and measures to evaluate the outcomes and impacts of their participation.
OBJECTIVE: The implementation of medical aid-in-dying (MAID) poses new challenges for clinical communication and counseling. Among these, health care providers must consider whether to initiate a discussion of MAID with eligible patients who do not directly ask about it. Norms and policies concerning this issue vary tremendously across jurisdictions where MAID is legally authorized, reflecting divergent assumptions about patients' rights to information about end-of-life options and the purpose and potential harms of clinical disclosure.
METHOD: This discussion forum essay draws on informed consent doctrine to analyze two policies concerning clinical communication about MAID: the legal prohibition against provider-initiated discussions of MAID in Victoria, Australia, and the Canadian Association of MAID Assessors and Providers (CAMAP) position that providers have an ethical and professional responsibility to inform eligible patients about MAID.
CONCLUSIONS: Informed consent requires that clinicians strike a balance between minimizing potential harms to patients caused by initiating discussions of MAID and the imperative to inform and counsel patients about all of their legally available medical options.
PRACTICE IMPLICATIONS: Clinicians should be aware of both the importance of communication as a tool to inform patients and the potential for clinical language to cause harm to or to unduly influence patients.
Background: Despite level 1 evidence demonstrating the equivalence of single-fraction radiotherapy (sfrt) and multiple-fraction radiotherapy (mfrt) for the palliation of painful bone metastases, sfrt remains underused. In 2015, to encourage the sustainable use of palliative radiation oncology resources, CancerCare Manitoba disseminated, to each radiation oncologist in Manitoba, guidelines from Choosing Wisely Canada (cwc) that recommend sfrt. We assessed whether dissemination of the guidelines influenced sfrt use in Manitoba in 2016, and we identified factors associated with mfrt.
Methods: All patients treated with palliative radiotherapy for bone metastasis in Manitoba from 1 January 2016 to 31 December 2016 were identified from the provincial radiotherapy database. Patient, treatment, and disease characteristics were extracted from the electronic medical record and tabulated by fractionation schedule. Univariable and multivariable logistic regression analyses were performed to identify risk factors associated with mfrt.
Results: In 2016, 807 patients (mean age: 70 years; range: 35-96 years) received palliative radiotherapy for bone metastasis, with 69% of the patients having uncomplicated bone metastasis. The most common primary malignancies were prostate (27.1%), lung (20.6%), and breast cancer (15.9%). In 62% of cases, mfrt was used-a proportion that was unchanged from 2015. On multivariable analysis, a gastrointestinal [odds ratio (or): 5.3] or lung primary (or: 3.3), complicated bone metastasis (or: 4.3), and treatment at a subsidiary site (or: 4.4) increased the odds of mfrt use.
Conclusions: Dissemination of cwc recommendations alone did not increase sfrt use by radiation oncologists in 2016. A more comprehensive knowledge translation effort is therefore warranted and is now underway to encourage increased uptake of sfrt in Manitoba.
During the coronavirus disease 2019 (COVID-19) pandemic, principles from both clinical and public health ethics cue clinicians and healthcare administrators to plan alternatives for frail older adults who prefer to avoid critical care, and for when critical care is not available due to crisis triaging. This article will explore the COVID-19 Ethical Decision Making Framework, published in British Columbia (BC), Canada, to familiarize clinicians and policy makers with how ethical principles can guide systems change, in the service of frail older adults. In BC, the healthcare system has launched resources to support clinicians in proactive advance care planning discussions, and is providing enhanced supportive and palliative care options to residents of long-term care facilities. If the pandemic truly overwhelms the healthcare system, frailty, but not age alone, provides a fair and evidence-based means of triaging patients for critical care and could be included into ventilator allocation frameworks.
BACKGROUND: Medical Assistance in Dying (MAID) became legal in Canada in June 2016. As part of a project designed to improve end-of-life care for those requesting MAID, qualitative data from patients, families, and providers were used to assess opportunities to enhance patient-and family-centered care (PFCC) in this program.
METHODS: Thirty interviews were conducted with patients, families, and healthcare providers. Five patients who requested an assessment for MAID, 11 family members, and 14 healthcare providers were interviewed about their experiences in 2017. Comparative coding and thematic analysis were completed with the support of NVivo12.
RESULTS: Emotional PFCC considerations included: exploring and validating the emotional journey, navigating the uncertain, judgmental experiences, and the emotional impact on families and the care team. Physical PFCC considerations included: sensitivity in eligibility assessments, weaving in interdisciplinary care, provision of anticipatory guidance, and death location. Spiritual PFCC considerations included: honoring choice, listening to life stories, supporting spiritual needs, and acknowledging loss. Relational PFCC considerations included: defining the circle of support, supporting the circle, and relational investments.
CONCLUSION: Fundamental to a PFCC MAID program, practitioners must be afforded time to provide holistic care. Program-related suggestions include incorporating interdisciplinary care early, and throughout the illness trajectory, consistency in care providers, appropriate anticipatory guidance, and bereavement supports for family, and dedicate space for MAID provisions. Patients and families must be included in the ongoing development and re-evaluation of MAID programs to ensure continued focus on quality end-of-life care.
AIMS AND OBJECTIVES: To describes nurses' moral experiences with Medical Assistance in Dying in the Canadian context.
BACKGROUND: Nurses perform important roles in Medical Assistance in Dying in Canada and do so within a unique context in which Medical Assistance in Dying is provided through healthcare services and where accessibility is an important principle. International literature indicates that participating in Medical Assistance in Dying can be deeply impactful for nurses and requires a high degree of moral sense-making.
DESIGN: A qualitative interview study guided by Interpretive Description using the COREQ checklist.
RESULTS: Fifty-nine nurses from across Canada participated in the study. The decision to participate in Medical Assistance in Dying was influenced by family and community, professional experience and nurses' proximity to the act of Medical Assistance in Dying. Nurses described a range of deep and sometimes conflicting emotional reactions provoked by Medical Assistance in Dying. Nurses used a number of moral waypoints to make sense of their decision including patient choice, control and certainty; an understanding that it was not about the nurse; a commitment to staying with patients through suffering; consideration of moral consistency; issues related to the afterlife; and the peace and gratitude demonstrated by patients and families.
DISCUSSION: The depth of nurses' intuitional moral responses and their need to make sense of these responses are consistent with Haidt's theory of moral experience in which individuals use reasoning primarily to explain their moral intuition and in which moral change occurs primarily through compassionate social interaction. Further, work on the moral identity of nursing provides robust explanation of how nurses' moral decisions are contextually and relationally mediated and how they seek to guard patient vulnerability, even at their own emotional cost.
CONCLUSION: Medical Assistance in Dying is impactful for nurses, and for some, it requires intensive and ongoing moral sense-making.
RELEVANCE TO CLINICAL PRACTICE: There is a need to provide support for nurses' moral deliberation and emotional well-being in the context of Medical Assistance in Dying care.