The right to die is an issue is predicated on larger cultural understandings of autonomy. Autonomy, in turn, is centered around assumptions of choice, that individuals are able to make health-related decisions based on a rational calculation. In such a way, a medically assisted death is differentiated from suicide. Through an ethnographic study of right-to-die activists in North America and Australia and how they understand ideals of “good deaths,” this article will complicate this view by examining the ethical subject constructed by such activism that reveals autonomy to be a useful guiding fiction that mask larger ethical relationships.
While death is a universal human experience, the process of planning for death can be difficult and may be avoided altogether. To understand community perspectives of end-of-life preparedness, we undertook a multimethod study exploring the experiences of 25 community members and 10 stakeholders engaged in end-of-life planning. In addition, card sorting activities and focused discussions with 97 older adults were undertaken to highlight perspectives and needs. Data were analyzed using descriptive statistics and qualitative description. Overall, the participants perceived many benefits to being end-of-life prepared, however, few community members had engaged in formal planning. Key barriers include concerns about the accessibility and accuracy of information, discomfort when engaging in end-of-life conversations, and perceptions about the cost associated with engaging in formal legal or financial preparations. Areas for further research include the need for studies that capture the cultural dimensions of end-of-life planning and explores the implementation and evaluation of community-based interventions to improve preparedness.
OBJECTIVES: To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement.
DESIGN: Qualitative interview study with convenience sampling and thematic analysis approach.
PARTICIPANTS: Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year.
SETTING: Data collected in a small Canadian prairie city between fall 2014 and winter 2015.
FINDINGS: Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs.
CONCLUSIONS: The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
Purpose: Among individuals with COPD and/or lung cancer, to describe end-of-life health service utilization, costs, and place of death; to identify predictors of home palliative care use, and to assess benefits associated with palliative care use.
Patients and methods: We conducted a retrospective population-based study using provincial linked health administrative data (Ontario, Canada) between 2010 and 2015. We examined health care use in the last 90 days of life in adults 35 years and older with physician-diagnosed COPD and/or lung cancer identified using a validated algorithm and the Ontario Cancer Registry, respectively. Four mutually exclusive groups were considered: (i) COPD only, (ii) lung cancer only, (iii) COPD and lung cancer, and (iv) neither COPD nor lung cancer. Multivariable generalized linear models were employed.
Results: Of 445,488 eligible deaths, 34% had COPD only, 4% had lung cancer only, 5% had both and 57% had neither. Individuals with COPD only received less palliative care (20% vs 57%) than those with lung cancer only. After adjustment, people with lung cancer only were far more likely to receive palliative care (OR=4.22, 4.08-4.37) compared to those with neither diagnosis, while individuals with COPD only were less likely to receive palliative care (OR=0.82, 0.81-0.84). Home palliative care use was associated with reduced death and fewer days in acute care, and less cost, regardless of the diagnosis.
Conclusion: Although individuals with lung cancer were much more likely to receive palliative care than those with COPD, both populations were underserviced. Results suggest greater involvement of palliative care may improve the dying experience of these populations and reduce costs.
BACKGROUND: When a patient is incapable of making medical decisions for him- or herself, a substitute decision-maker makes choices according to the patient's previously expressed wishes, values and beliefs; however, little is known about public readiness to act as a substitute decision-maker in Canada. Our primary objective was to measure public self-reported preparedness to act as a substitute decision-maker, and explore the attitudes, barriers and enablers associated with preparedness.
METHODS: From November 2017 to June 2018, we conducted a mixed-methods street intercept survey at 12 pedestrian areas in Ottawa, Ontario. We used descriptive statistics and logistic regression analysis to assess predictors of perceived preparedness to be a substitute decision-maker and determine support for high school education. We analyzed qualitative interview questions using inductive thematic analysis.
RESULTS: Of the 626 eligible respondents, 196 refused to participate, leaving 430 participants (response rate 68.7%). A total of 404 surveys (94.0%) were fully complete with no missing data. The respondents were mostly female (243 [56.5%]) and residents of Ontario (364 [84.6%]). The average age was 33.9 years. Although 314 respondents (73.0%) felt prepared to be a substitute decision-maker, 194 (45.1%) reported never having had meaningful conversations with loved ones to understand their wishes in the event of critical illness. A total of 293 participants (68.1%) identified important barriers to feeling prepared. Most respondents (309 [71.9%]) agreed that high school students should learn about being a substitute decision-maker, citing age appropriateness, potential societal benefit and improved decision-making, while cautioning the need to respect different maturity levels, cultures and experiences.
INTERPRETATION: the lack of conversation between loved ones reveals a gap between perceived and actual preparedness to be a substitute decision-maker for a loved one with a critical illness. The overall acceptability of high school education warrants further exploration.
All family practice residents need to know the basics about discussing end-of-life care with patients, their caregivers, and loved ones. This might entail imparting knowledge, skills, and attitudes with respect to medical assistance in dying (MAID). Medical assistance in dying became legal in 2016 (2015 in Quebec), and in the past year, about 1% of all deaths in Canada were assisted by clinicians. Different health authorities reported MAID rates of between 5% and 0.5%. As our laws and societies are similar to those of the Netherlands and Belgium, we can expect that within a few years, the rates of MAID across Canada will be 4% to 5%. This translates to 13 000 deaths annually. All family doctors must be prepared to answer questions from patients about MAID and give accurate information regardless of their personal feelings and values. Some will want to do assessments and some will also want to provide MAID for their patients. Most health authorities will have a program in place to mentor those practitioners who wish to provide MAID.
BACKGROUND: Pregnancy and infant loss has a pervasive impact on families, health systems, and communities. During and after loss, compassionate, individualized, and skilled support from professionals and organizations is important, but often lacking. Historically, little has been known about how families in Ontario access existing care and supports around the time of their loss and their experiences of receiving such care.
METHODS: An online cross-sectional survey, including both closed-ended multiple choice questions and one open-ended question, was completed by 596 people in Ontario, Canada relating to their experiences of care and support following pregnancy loss and infant death. Quantitative data were analyzed descriptively using frequency distributions. Responses to the one open-ended question were thematically analyzed using a qualitative inductive approach.
RESULTS: The majority of families told us that around the time of their loss, they felt they were not adequately informed, supported and cared for by healthcare professionals, and that their healthcare provider lacked the skills needed to care for them. Almost half of respondents reported experiencing stigma from providers, exacerbating their experience of loss. Positive encounters with care providers were marked by timely, individualized, and compassionate care. Families indicated that improvements in care could be made by providing information and explanations, discharge and follow-up instructions, and through discussions about available supports.
CONCLUSIONS: Healthcare professionals can make a positive difference in how loss is experienced and in overall well-being by recognizing the impact of the loss, minimizing uncertainty and isolation, and by thoughtfully working within physical environments often not designed for the experience of loss. Ongoing supports are needed and should be tailored to parents' changing needs. Prioritizing access to specialized education for professionals providing services and care to this population may help to reduce the stigma experienced by bereaved families.
Hospitals remain the most common location of death in a significant number of countries, and specialist palliative care is positioned as a crucial resource for improving hospital care for those nearing end of life. Little is known, however, about a substantive aspect of this work: how hospital palliative clinicians anticipate and organize a patient's dying trajectory. In this paper I draw from a larger original ethnographic research study of palliative specialists in two Canadian hospitals. Abductive analysis resulted in framing their work as affective labour, both reflecting and re-creating a larger affective economy shaping the affective states of everyone involved in the provision and uptake of care. I articulate six analytically ideal outcomes of clinicians' affective labour that organize end of life, including: 1) proactive co-authorship of disease trajectory; 2) mutual acknowledgement of a dying trajectory; 3) naturalizing direction and outcome of care, 4) ensuring a minimum of social disruption, 5) identification as compassionate and efficient care providers, and 6) increased specialist knowledge and interventions. In so doing, clinicians' practices become understandable as labour to meet a diversity of - at times conflicting - individual, organizational, and societal mandates that necessarily include, but extend well beyond, the patient and her immediate social network. This is the first study to consider hospital palliative care as an affective economy, and presents a theoretically innovative and empirically grounded model to advance new ways of conceptualizing hospital palliative care. I conclude by considering how this model, and the unique insights it affords, can inform the future development of end of life care in hospital settings.
In 2008, a Canadian strategy called the "Educating Future Physicians in Palliative and End-of-Life Care" (EFPPEC) project published national medical undergraduate competencies for palliative and end-of-life care. Since that time, there have been several changes in the practice environment. To formally incorporate these changes and also update the competencies for EFPPEC, an EFPPEC update project team was established in 2017. The EFPPEC update document in English was finalized in June 2018, and subsequent minor amendments to the French version were completed in January 2019. This report describes the process and also shares the new updated EFPPEC competencies with the wider palliative care community.
Death and dying are natural phenomena embedded within complex political, cultural and social systems. Nurses often practice at the forefront of this process and have a fundamental role in caring for both patients and those close to them during the process of dying and following death. While nursing has a rich tradition in advancing the palliative and end-of-life care movement, new modes of care for patients with serious and irremediable medical conditions arise when assisted death is legalized in a particular jurisdiction. In early 2015, the Supreme Court of Canada released its landmark decision Carter v. Canada (Attorney General) ('Carter'), which legalized physician-assisted suicide in particular clinical situations. The new law provided the broad national framework for Medical Assistance in Dying (MAiD) in Canada but, once the law was passed, provincial and territorial governments and health professional regulatory bodies each had to undertake a process of developing policies, procedures and processes to guide MAiD-related practice specific to their jurisdiction. In this paper, we begin to examine the political ramifications and professional tensions arising from MAiD for nurses and nursing, focusing specifically upon the impacts for registered nurses. We identify how variations in the provincial and territorial literature and regulatory guidelines across Canada have given rise to role confusion and uncertainty among some registered nurses and how this may potentially impact patient care. We then continue to highlight the need for greater political activism among nurses to foster greater clarity in nursing roles in MAiD and to advocate for improved supports for patients and those close to them.
Background: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed.
Methods: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software.
Results: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure.
Conclusion: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.
Canuck Place Children’s Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians’ perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians’ perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy’s potential role in the support of children, families, and staff within a hospice setting.
Aims: The cancer burden among Circumpolar Inuit is high. Palliative radiotherapy is a mainstay treatment for controlling symptoms of advanced cancers, but Inuit are required to travel far distances to access this service. Access to palliative radiotherapy and time away from home communities have not been explored among this population. We sought to describe the time intervals from symptom onset to the start of palliative radiotherapy among Canadian Inuit patients treated at The Ottawa Hospital (TOH).
Materials and methods: A retrospective review of Inuit patients from Nunavut treated with radiotherapy between 2005 and 2014 at TOH.
Results: Of a total of 152 radiotherapy patients, 88 (58%) were treated palliatively. Of these, 61 (70%) had stage IV disease at diagnosis and 63 (72%) had lung cancer. The median time from referral for specialist care to the patient's first flight to Ottawa was 4 days (range 0–97). The median length of treatment was 7 days (range 0–27), but patients spent a median of 64.5 days (range 14–633) in Ottawa. The median survival from the date of pathological diagnosis was 5.2 months.
Conclusions: Most Inuit radiotherapy patients at TOH were treated palliatively. Patients were brought from Nunavut relatively quickly for specialist care, which is encouraging. However, patients spent over 2 months away from home, in the context of a median survival of less than 6 months. Opportunities for improvement include both provider and system-level changes, which may be applicable to other Circumpolar Inuit regions across Europe and North America.
Objectives: To determine the relative contributions of tetrahydrocannabinol (THC) and cannabidiol (CBD) to patients' self-ratings of efficacy for common palliative care symptoms.
Design: This is an electronic record-based retrospective cohort study. Model development used logistic regression with bootstrapped confidence intervals (CIs), with standard errors clustered to account for multiple observations by each patient.
Setting: This is a national Canadian patient portal.
Participants: A total of 2,431 patients participated.
Main Outcome Measures: Self-ratings of efficacy of cannabis, defined as a three-point reduction in neuropathic pain, anorexia, anxiety symptoms, depressive symptoms, insomnia, and post-traumatic flashbacks.
Results: We included 26,150 observations between October 1, 2017 and November 28, 2018. Of the six symptoms, response was associated with increased THC:CBD ratio for neuropathic pain (odds ratio [OR]: 3.58; 95% CI: 1.32–9.68; p = 0.012), insomnia (OR: 2.93; 95% CI: 1.75–4.91; p < 0.001), and depressive symptoms (OR: 1.63; 95% CI: 1.07–2.49; p = 0.022). Increased THC:CBD ratio was not associated with a greater response of post-traumatic stress disorder (PTSD)-related flashbacks (OR: 1.43; 95% CI: 0.60–3.41; p = 0.415) or anorexia (OR: 1.61; 95% CI: 0.70–3.73; p = 0.265). The response for anxiety symptoms was not significant (OR: 1.13; 95% CI: 0.77–1.64; p = 0.53), but showed an inverted U-shaped curve, with maximal benefit at a 1:1 ratio (50% THC).
Conclusions: These preliminary results offer a unique view of real-world medical cannabis use and identify several areas for future research.
In June 2015, the Supreme Court of Canada struck down the Criminal Code's prohibition on assisted death. Just over a year later, the federal government crafted legislation to entrench medical assistance in dying (MAiD), the term used in Canada in place of physician-assisted death. Notably, Canada became the first country to allow nurse practitioners to act as assessors and providers, a result of a strong lobby by the Canadian Nurses Association. However, a legislated approach to assisted death has proven challenging in a number of areas. Although it facilitates a degree of accountability, precision and accessibility, it has also resulted in particular challenges negotiating the diverse perspectives of such a morally contentious act. One of these challenges is the tendency to conflate what is legal and what is moral in a modern liberal constitutionalism that places supreme value on autonomy and choice. Such a conflation tends to render invisible the legal and moral/ethical considerations necessary for nurses and nurse practitioners to remain ethical actors. In this paper, we introduce this conflation and then discuss the process of lawmaking in Canada, including the legalization of MAiD and the contributions of nursing to that legalization. We then engage in a hypothetical dialogue about the legal and moral/ethical implications of MAiD for nursing in Canada. We conclude with an appeal for morally sustainable workspaces that, when implementing MAiD, appropriately balance patient choices and nurses' moral well-being.
BACKGROUND: There is no international consensus on the definition and components of severe maternal morbidity (SMM).
OBJECTIVES: To propose a comprehensive definition of SMM, to create an empirically justified list of SMM types and subtypes, and to use this to examine SMM in Canada.
METHODS: Severe maternal morbidity was defined as a set of heterogeneous maternal conditions known to be associated with severe illness and with prolonged hospitalisation or high case fatality. Candidate SMM types/subtypes were evaluated using information on all hospital deliveries in Canada (excluding Quebec), 2006-2015. SMM rates for 2012-2016 were quantified as a composite and as SMM types/subtypes. Rate ratios and population attributable fractions (PAF) associated with overall and specific SMM types/subtypes were estimated in relation to length of hospital stay (LOS > 7 days) and case fatality.
RESULTS: There were 22 799 cases of SMM subtypes (among 1 418 545 deliveries) that were associated with a prolonged LOS or high case fatality. Between 2012 and 2016, the composite SMM rate was 16.1 (95% confidence interval [CI] 15.9, 16.3) per 1000 deliveries. Severe pre-eclampsia and HELLP syndrome (514.6 per 100 000 deliveries), and severe postpartum haemorrhage (433.2 per 100 000 deliveries) were the most common SMM types, while case fatality rates among SMM subtypes were highest among women who had cardiac arrest and resuscitation (241.1 per 1000), hepatic failure (147.1 per 1000), dialysis (67.6 per 1000), and cerebrovascular accident/stroke (51.0 per 1000). The PAF for prolonged hospital stay related to SMM was 17.8% (95% CI 17.3, 18.3), while the PAF for maternal death associated with SMM was 88.0% (95% CI 74.6, 94.4).
CONCLUSIONS: The proposed definition of SMM and associated list of SMM subtypes could be used for standardised SMM surveillance, with rate ratios and PAFs associated with specific SMM types/subtypes serving to inform clinical practice and public health policy.
BACKGROUND: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process.
AIMS: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity.
METHODS: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests.
FINDINGS: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated.
CONCLUSION: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death.
Despite advances in the management of hematologic malignancies, a significant proportion of patients die of their disease. We used administrative databases in Ontario, Canada (between 2005 and 2013) to determine the number of days spent at home in the last 6 months of life. We studied the predictors of the median number of days at home (DAH) using quantile regression. For the 11,127 patients with hematologic malignancies who died, the median number of DAH in the last 6 months was 156 days. Patients with acute leukemias (p < .0001), women (p < .0001), and those requiring transfusions (p < .0001) spent the fewest DAH. Patients assessed by palliative care prior to their last 6 months were likely to spend more time at home (p < .0001). Providing additional supports for patients nearing the end of life, including earlier access to palliative care and continued transfusion support, may increase the likelihood that patients can die at home.
Peu de recherches ont porté sur les profils et les préoccupations de santé parmi les hommes homosexuels et bisexuels vieillissants. Dans le cadre d’une enquête en ligne pancanadienne, 411 répondants âgés de 55 ans et plus ont répondu à un questionnaire portant sur l’évaluation de ces deux problématiques. Les résultats montrent que les écarts avec la population hétérosexuelle du même groupe d’âge se situent en particulier dans le champ de la santé mentale, où les problèmes sont plus prononcés, des différences qui se retrouvent aussi entre les 55-64 ans et les 64 ans et plus dans notre échantillon. Ces résultats peuvent contribuer à développer des interventions mieux ciblées visant à favoriser le bien-vieillir parmi ces minorités sexuelles.
En se basant sur le concept d’exclusion sociale, cet article soutient que le paradigme de l’État d’investissement social de même que l’accent mis par les politiques sur le vieillissement actif contribuent à l’exclusion des personnes âgées itinérantes (PAI) tant dans les politiques, les pratiques que la recherche. S’appuyant sur trois politiques et plans d’action sur l’itinérance émanant des gouvernements fédéral (canadien), provincial (québécois) et municipal (la Ville de Montréal), cet article montre comment l’exclusion des PAI se manifeste dans ces stratégies. Enfin, cet article démontre le besoin de reconnaître les multiples exclusions des PAI et conclut sur un appel à différents acteurs afin qu’ils adoptent une posture critique face aux discours et aux modèles normatifs qui concourent à l’exclusion de cette population.