This study explored the experience of pharmacists, social workers, and nurses who participated in Medical Assistance in Dying (MAiD) in a tertiary care Canadian hospital. Consenting staff participated in qualitative semistructured interviews, which were then analyzed for thematic content. This article reports on the broad theme of “support” from the perspective of the 3 professions, focusing on the diversity in perceptions of support, how MAiD was discussed within health care teams, feelings of gratuitous or excessive gestures of support, ambivalence over debriefs, and the importance of informal support. While pharmacists and social workers generally felt part of a community that supported MAiD, nurses more often expressed opinions as highly divergent. The key finding across all themes was the central importance of the culture on any unit with respect to MAiD and specifically the role of the unit manager in creating either a positive open space for communication or a more silent or closed space. Nursing noted that in the latter setting many gestures of support were experienced as insincere and counterproductive, as were debriefs. We outline several recommendations for managers based on the study results with the intent of tailoring support for all professionals involved in MAiD.
OBJECTIVE: Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers' perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers' perceptions of a good resident death.
METHOD: This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.
RESULTS: Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers' perceptions of a good resident death.
SIGNIFICANCE OF RESULTS: The findings of this study suggest that the critical role staff in LTC play in supporting caregivers' perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers' perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers' perceptions that residents were at peace when they died.
A challenging issue in contemporary Canadian Medicare is the evolution of end-of-life care. Utilizing data from the 2016 and 2018 Health Care in Canada (HCIC) surveys, this paper compares the support and priorities of the adult public (n = 1500), health professionals (n = 400), and administrators (n = 100) regarding key components for end-of-life care just prior to and post legalization of medical assistance in dying (MAiD) in Canada. In 2016 and 2018, the public, health professionals and administrators strongly supported enhanced availability of all proposed end-of-life care options: pain management, hospice and palliative care, home care supports, and medically assisted death. In 2018, when asked which option should be top priority, the public rated enhanced medically assisted death first (32%), followed by enhanced hospice and palliative care (22%) and home care (21%). Enhanced hospice and palliative care was the top priority for health professionals (33%), while administrators rated enhanced medically assisted death first (26%). Despite legalization and increasing support for MAiD over time, health professionals have increasing fear of legal or regulatory reprisal for personal involvement in medically assisted death, ranging from 38% to 84% in 2018, versus 23% to 42% in 2016. While administrators fear doubled since 2016 (40%-84%), they felt the necessary system supports were in place to easily implement medically assisted death. Optimal management of end-of-life care is strongly supported by all stakeholders, although priorities for specific approaches vary. Over time, professionals increasingly supported MAiD but with a rising fear of legal/regulatory reprisal despite legalization. To enhance future end-of-life care patterns, continued measurement and reporting of implemented treatment options and their system supports, particularly around medically assisted death, are needed.
The availability of willing providers of medical assistance in dying (MAiD) in Canada has been an issue since a Canadian Supreme Court decision and the subsequent passing of federal legislation, Bill C14, decriminalised MAiD in 2016. Following this legislation, Hamilton Health Sciences (HHS) in Ontario, Canada, created a team to support access to MAiD for patients. This research used a qualitative, mixed methods approach to data collection, obtaining the narratives of providers and supporters of MAiD practice at HHS. This study occurred at the outset of MAiD practice in 2016, and 1 year later, once MAiD practice was established. Our study reveals that professional identity and values, personal identity and values, experience with death and dying, and organisation context are the most significant contributors to conscientious participation for MAiD providers and supporters. The stories of study participants were used to create a model that provides a framework for values clarification around MAiD practice, and can be used to explore beliefs and reasoning around participation in MAiD across the moral spectrum. This research addresses a significant gap in the literature by advancing our understanding of factors that influence participation in taboo clinical practices. It may be applied practically to help promote reflective practice regarding complex and controversial areas of medicine, to improve interprofessional engagement in MAiD practice and promote the conditions necessary to support moral diversity in our institutions.
Understanding the temporal trends in the place of death among patients in receipt of home-based palliative care can help direct health policies and planning of health resources. This paper aims to assess the temporal trends in place of death and its determinants over the past decade for patients receiving home-based palliative care. This paper also examines the impact of early referral to home-based palliative care services on patient's place of death. Survey data collected in a home-based end-of-life care program in Toronto, Canada from 2005 to 2015 were analysed using a multivariate logistic model. The results suggest that the place of death for patients in receipt of home-based palliative care has changed over time, with more patients dying at home over 2006-2015 when compared to 2005. Also, early referral to home-based palliative care services may not increase a patient's likelihood of home death. Understanding the temporal shifts of place of death and the associated factors is essential for effective improvements in home-based palliative care programs and the development of end-of-life care policies.
BACKGROUND: Recent studies have shown substantial deficiencies in the quality or quantity (or both) of communication and decision-making during serious illness. We evaluated the efficacy of a novel decision support intervention, the Plan Well Guide, in increasing completion of a standard medical order form for advance medical care planning and improving decisional outcomes in nonacademic primary care settings.
METHODS: We conducted a randomized trial in 3 primary care practices in Lethbridge, Alberta in 2017-2018. We recruited "patients at high risk" referred by the primary care doctor who required establishment or review of their Goals of Care Designation (GCD). Enrolled patients were randomly allocated to receive the Plan Well Guide, delivered by a trained facilitator, or usual care. Eight to 12 weeks after the intervention, a research assistant blinded to intervention assignment contacted the patients in both groups by telephone to do a final outcome assessment. The primary outcome was completion of GCD forms; secondary outcomes included decisional conflict scores and ratings of satisfaction.
RESULTS: A total of 123 patients (59 women [48.0%]; mean age 73.9 yr) were enrolled, 66 in the intervention arm and 57 in the usualcare arm; 119 patients completed the trial. After the intervention, GCD completion rates in the intervention and usual-care groups were 95.3% and 90.9%, respectively (risk difference [RD] 4%, 95% confidence interval [CI] -14% to 22%), and the rate of concordance between medical orders and expressed preferences on follow-up was 78% and 66%, respectively (RD 12%, 95% CI -7% to 30%). Significantly fewer patients in the intervention group than in the usual-care group had written medical orders for intensive care unit care and cardiopulmonary resuscitation (22 [34%] v. 33 [60%], RD -26%, 95% CI -42% to -8%). Patients in the intervention group had lower decisional conflict scores than those in the usual-care group (mean 30.9 v. 43.1, adjusted mean difference -12.0, 95% CI -23.2 to -0.8). Physicians considered patients in the intervention group to have lower decisional conflict than those in the usual-care group, although not significantly so (mean score 10.4 v. 14.9, adjusted mean difference -4.7, 95% CI -9.9 to 0.4) and spent less time with the former (mean 9.7 v. 13.2 min, adjusted mean difference -3.5, 95% CI -5.5 to -1.5 min).
INTERPRETATION: The decision-support intervention did not increase GCD completion rates but did seem to improve some aspects of decisional quality while reducing the physician's time to accomplish GCD decisions.
Background: Pain is a prevalent symptom at the end of life and negatively impacts quality of life. Despite this, little population level data exist that describe pain frequency and associated factors at the end of life. The purpose of this study was to explore the prevalence of clinically significant pain at the end of life and identify predictors of increased pain.
Methods: Retrospective population-level cohort study of all decedents in Ontario, Canada, from April 1, 2011 to March 31, 2015 who received a home care assessment in the last 30 days of life (n = 20,349). Severe daily pain in the last 30 days of life using linked Ontario health administrative databases. Severe pain is defined using a validated pain scale combining pain frequency and intensity: daily pain of severe intensity.
Results: Severe daily pain was reported in 17.2% of 20,349 decedents. Increased risk of severe daily pain was observed in decedents who were female, younger and functionally impaired. Those who were cognitively impaired had a lower risk of reporting pain. Disease trajectory impacted pain; those who died of a terminal illness (i.e. cancer) were more likely to experience pain than those with frailty (odds ratio 1.66).
Conclusion: Pain is a common fear of those contemplating end of life, but severe pain is reported in less than 1 in 5 of our population in the last month of life. Certain subpopulations may be more likely to report severe pain at the end of life and may benefit from earlier palliative care referral and intervention.
Background: An essential component of palliative care (PC) is providing psychological and existential support to the family caregivers. However, there is scant research on the existential journeys of family caregivers throughout the disease trajectory and beyond.
Objective: This study aimed to obtain a deep understanding of the existential journeys of family caregivers from prognosis notification until after the death.
Setting/Participants: A purposive sample of 22 caregivers of terminally ill family members who had died was recruited at a PC bereavement program in Canada and participated to qualitative phenomenological interviews.
Data Collection: Interpretative phenomenological analysis was used to analyze the data derived from in-depth interviews.
Results: The participants' existential journeys can be described by three dynamic dimensions: (1) from avoidance to integration of death, (2) from meaninglessness to meaningfulness, and (3) from transformation to transmission. The findings highlight the importance to family caregivers of having opportunities to share their experiences as a way to progress on the existential journey.
Conclusions: PC should extend beyond the death of the loved one and expand to include existential aspects of the caregiving experience.
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children's voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children's voices could be mobilised in the life or death context of MAID. We conclude that children's voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.
'Futility' is a contentious term that has eluded clear definition, with proposed descriptions either too strict or too vague to encompass the many facets of medical care. Requests for futile care are often surrogates for requests of a more existential character, covering the whole range of personal, emotional, cultural and spiritual needs. Physicians and other practitioners can use requests for futile care as a valuable opportunity to connect with their patients at a deeper level than the mere biomedical diagnosis. Current debate around Canada's changing regulatory and legal framework highlights challenges in appropriately balancing the benefits and burdens created by requests for futile care.
Objective: To examine perceptions of facilitators and barriers to quality measurement and improvement in palliative care programs and differences by professional and leadership roles.
Methods: We surveyed team members in diverse US and Canadian palliative care programs using a validated survey addressing teamwork and communication and constructs for educational support and training, leadership, infrastructure, and prioritization for quality measurement and improvement. We defined key facilitators as constructs rated =4 (agree) and key barriers as those =3 (disagree) on 1 to 5 scales. We conducted multivariable linear regressions for associations between key facilitators and barriers and (1) professional and (2) leadership roles, controlling for key program and respondent factors and clustering by program.
Results: We surveyed 103 respondents in 11 programs; 45.6% were physicians and 50% had leadership roles. Key facilitators across sites included teamwork, communication, the implementation climate (or environment), and program focus on quality improvement. Key barriers included educational support and incentives, particularly for quality measurement, and quality improvement infrastructure such as strategies, systems, and skilled staff. In multivariable analyses, perceptions did not differ by leadership role, but physicians and nurse practitioners/nurses/physician assistants rated most constructs statistically significantly more negatively than other team members, especially for quality improvement (6 of the 7 key constructs).
Conclusions: Although participants rated quality improvement focus and environment highly, key barriers included lack of infrastructure, especially for quality measurement. Building on these facilitators and measuring and addressing these barriers might help programs enhance palliative care quality initiatives’ acceptability, particularly for physicians and nurses.
All healthcare services strive to achieve the six factors of quality health care - safe, effective, patient-centered, timely, efficient and equitable. Yet multiple structural, process, policy and people factors can combine to result in medical error and patient harm. Measuring the quality of palliative care has many challenges due to its presence across multiple health sectors, variable skill and experience of providers and lack of defined processes for providing services. In Canada there is screening for symptoms and distress in most cancer centers, but not in non-cancer diseases. Screening for distress and disease burden can identify suffering, that when properly addressed, improves quality of life and reduces depression and hopelessness that can lead to requests for hastened death. Our hypothesis is that some requests for hastened death (known as Medical Assistance in Dying or MAiD in Canada) are driven by lack of access to palliative care or lack of quality in the palliative care attempting to address disease burden and distress such that the resulting provision of hastened death is a medical error. The root cause of the error is in the lack of quality palliative care in the previous weeks, months and years of the disease trajectory - a known therapy that the system fails to provide. The evidence for palliative care addressing symptoms and improving quality of life and mood as well as providing caregiver support is established. Early evidence supporting the use of psychotherapeutics in emotional and existential distress is also considered. We present three cases of request for assisted death that could be considered medical error. The paper references preliminary evidence from a review of previous access to palliative care in a limited number of MAiD cases showing that only a minority were identified as having palliative care needs prior to the admission where MAiD was provided. The evidence linking disease burden to hopelessness, depression and hastened death is provided. The many studies revealing the inequity or underservicing of the Canadian population with regards to palliative care are reviewed. We examine a recent framework for palliative care in Canada and point out the need for more aggressive use of standards, process and policies to ensure that Canadians are receiving quality palliative care and that it is equitably accessible to all.
Providing quality end-of-life care for older peopleis one of our biggest challenges in this newCOVID-19 era. Advanced age, because of its asso-ciation with a range of physical comorbidities, is associated with greater mortality with COVID-19. Specifically, case fatality rates in the 70+age group range from 8.6% to 13.4% compared with 0.0026–0.3% in those under 45 (Ruan,2020;Zhouet al.,2020). However, vulnerability is not con-ferred by physiological factors alone, but addition-ally by psychosocial factors such as ageism and ethical considerations such as distributive justice (Stirling,2020;Truoget al.,2020). Those who are at high risk for COVID-19 are the same patients we take care of in geriatric psychiatry, geriatrics,nursing home, hospice, and palliative care, that is,older, ill, frail, cognitively impaired, at high risk of delirium with mental and physical comorbidities (van den Brinket al.,2017). An acute COVID infection may be, as Ballentine (2020) suggested,“what collapses the house of cards” for our vulnerable patients.
The current novel coronavirus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic will likely strain Canada’s health care system beyond capacity, and many people are expected to die as a result. In this article, we review the challenges involved in providing palliative care in a pandemic.
Background: The number of medical undergraduate and postgraduate students completing palliative care clinical rotations in Canadian medical schools is currently unknown. The aim of this study was to assess the proportion of Canadian medical trainees completing clinical rotations in palliative care and to determine whether changes took place between 2008 and 2018.
Methods: In this descriptive study, all Canadian medical schools (n = 17) were invited to provide data at the undergraduate and postgraduate levels (2007/08–2015/16 and 2007/08–2017/18, respectively). Information collected included the number, type and length of palliative care clinical rotations offered and the total number of medical trainees or residents enrolled at each school.
Results: All 17 Canadian medical schools responded to the request for information. At the undergraduate level, palliative care clinical rotations were not offered in 2 schools, mandatory in 2 and optional in 13. Three schools that offered optional rotations were unable to provide complete data and were therefore excluded from further analyses. In 2015/16, only 29.7% of undergraduate medical students completed palliative care clinical rotations, yet this was a significant improvement compared to 2011/12 (13.6%, p = 0.02). At the postgraduate level, on average, 57.9% of family medicine trainees completed such rotations between 2007/08 and 2016/17. During the same period, palliative care clinical rotations were completed by trainees in specialty or subspecialty programs in anesthesiology (34.2%), geriatric medicine (64.4%), internal medicine (30.9%), neurology (28.2%) and psychiatry (64.5%).
Interpretation: Between 2008 and 2018, a large proportion of Canadian medical trainees graduated without the benefit of a clinical rotation in palliative care. Without dedicated clinical exposure to palliative care, many physicians will enter practice without vital palliative care competencies.
Anticipatory grief is a concept commonly used by researchers and clinicians when talking about the experience before the death of a loved one. This article offers a critical perspective on the disciplinary, theoretical and philosophical foundations of three distinct and frequently used conceptualisations of anticipatory grief: Lindemann's, Rando's and one derived from sociology. Lindemann's perspective conceived anticipatory grief as an inevitable component of the grieving experience in the situation of impending death. Rando's perspective views anticipatory grief as a multidimensional that facilitates post-mortem mourning. The third perspective, offered by sociologists, defines anticipatory grief as an experience highly influenced by the social context of the individual. This review explains how these different perspectives influence research and concludes with a reflection for potential future research.
BACKGROUND: Ethnicity may be associated with important aspects of end-of-life care, such as what treatments are received, access to palliative care and where people die. However, most studies have focused on end-of-life care of white, Hispanic and black patients. We sought to compare end-of-life care delivered to people of Chinese and South Asian ethnicity with that delivered to others from the general population, in Ontario, Canada.
METHODS: In this population-based cohort study, we included all people who died in Ontario, Canada, between Apr. 1, 2004, and Mar. 31, 2015. People were identified as having Chinese or South Asian ethnicity on the basis of a validated surname algorithm. We used modified Poisson regression analyses to assess location of death and care received in the last 6 months of life.
RESULTS: We analyzed 967 339 decedents, including 18 959 (2.0%) of Chinese and 11 406 (1.2%) of South Asian ethnicity. Chinese (13.6%) and South Asian (18.5%) decedents were more likely than decedents from the general population (10.1%) to die in the intensive care unit (ICU). The adjusted relative risk of dying in intensive care was 1.21 (95% confidence interval [CI] 1.15 to 1.27) for Chinese and 1.25 (95% CI 1.20 to 1.30) for South Asian decedents. In their last 6 months of life, decedents of Chinese and South Asian ethnicity experienced significantly more ICU admission, hospital admission, mechanical ventilation, dialysis, percutaneous feeding tube placement, tracheostomy and cardiopulmonary resuscitation than the general population.
INTERPRETATION: Decedents of Chinese and South Asian ethnicity in Ontario were more likely than decedents from the general population to receive aggressive care and to die in an ICU. These findings may be due to communication difficulties between patients and clinicians, differences in preferences about end-of-life care or differences in access to palliative care services.
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.
Canada’s government has tabled new legislation that would remove some of the restrictions placed on medical aid in dying, most notably the requirement that applicants suffer from a terminal condition which makes their death “reasonably foreseeable.”
The new bill will also permit eligible patients to ask for a medically assisted death in advance directives—and to have that wish respected even if they are no longer mentally able to give informed consent at time of death.
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Background: Medical Assistance in Dying (MAiD) was legalized in Canada in June, 2016. The Canadian government's decision to legislate assisted dying, an approach that requires a high degree of obligation, precision, and delegation, has resulted in unique challenges for health care and for nursing practice. The purpose of this study was to better understand the implications of a legislated approach to assisted death for nurses' experiences and nursing practice.
Methods: The study used a qualitative approach guided by Interpretive Description. Semi-structured interviews were conducted with 59 registered nurses and nurse practitioners. Interviews were audio-recorded, transcribed, and managed using qualitative analysis software. Analysis followed a procedure of data immersion, open coding, constant comparative analysis, and the construction of a thematic and interpretive account.
Results: Nurses in this study described great variability in how MAiD had been enacted in their work context and the practice supports available to guide their practice. The development of systems to support MAiD, or lack thereof, was largely driven by persons in influential leadership positions. Workplaces that supported a range of nurses' moral responses to MAiD were most effective in supporting nurses' well-being during this impactful change in practice. Participants cited the importance of teamwork in providing high quality MAiD-related care; although, many worked without the benefit of a team. Nursing work related to MAiD was highly complex, largely because of the need for patient-centered care in systems that were not always organized to support such care. In the absence of adequate practice supports, some nurses were choosing to limit their involvement in MAiD.
Conclusions: Data obtained in this study suggested that some workplace contexts still lack the necessary supports for nurses to confidently meet the precision required of a legislated approach to MAiD. Without accessible palliative care, sufficient providers, a supportive team, practice supports, and a context that allowed nurses to have a range of responses to MAiD, nurses felt they were legally and morally at risk. Nurses seeking to provide the compassionate care consistent with such a momentous moment in patients' lives, without suitable supports, find themselves caught between the proverbial rock and hard place.