BACKGROUND: The legalisation of medical assistance in dying in numerous countries over the last 20 years represents a significant shift in practice and scope for many clinicians who have had little-to-no training to prepare them to sensitively respond to patient requests for hastened death.
AIMS: Our objective was to review the existing qualitative literature on the experiences of healthcare providers responding to requests for hastened death with the aim of answering the question: how do clinicians make sense of, and respond to patients' expressed wishes for hastened death?
METHODS: We performed a systematic review and meta-synthesis of primary qualitative research articles that described the experiences and perspectives of healthcare professionals who have responded to requests for hastened death in jurisdictions where MAiD (Medical Assistance in Dying) was legal or depenalised. A staged coding process was used to identify and analyse core themes.
RESULTS: Although the response to requests for hastened death varied case-by-case, clinicians formulated their responses by considering seven distinct domains. These include: policies, professional identity, commitment to patient autonomy, personal values and beliefs, the patient-clinician relationship, the request for hastened death and the clinician's emotional and psychological response.
CONCLUSION: Responding to a request for hastened death can be an overwhelming task for clinicians. An approach that takes into consideration the legal, personal, professional and patient perspectives is required to provide a response that encompasses all the complexities associated with such a monumental request.
BACKGROUND: The 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs.
METHODS: Using the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program.
RESULTS: Beyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose.
CONCLUSIONS: The successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other.
The need for training to help healthcare professionals and hospice palliative care volunteers deal with unusual experiences at or around the end of a person's life is an oft-repeated theme in the scientific literature. A pilot study was conducted to examine the effectiveness of a training module designed to improve volunteers' ability to recognize, understand, and respond to unusual end-of-life phenomena (EOLP) in their work with dying patients and their families. Twenty-four volunteers from two community-based hospice palliative care programs completed the 25-item Coping with Unusual End-of-Life Experiences Scale (CUEES) prior to and immediately after attending a lecture and PowerPoint training module. A series of paired samples t tests revealed significant pre- and post-training differences on 14 items, suggesting that volunteers felt more knowledgeable about EOLP, better prepared to deal with EOLP, and more comfortable talking about EOLP with others following the training. The need for additional data is discussed.
OBJECTIVES: Clinical use of the creative arts in palliative care is well established, yet there are few evaluation studies of these programs.
METHODS: In this first phase of a 3-phase evaluation of a creative arts program entitled "Tile Tales," we conducted a retrospective thematic analysis of 85 painted tiles and accompanying stories that were publically displayed on a tertiary palliative care unit. Each story was independently coded, using content analysis. Themes were derived through consensus, using the constant comparative method.
RESULTS: Tiles were created by staff (n = 36, 42%), family (n = 32, 38%), patients (n = 9, 11%), or patients and family (n = 8, 9%). Six major themes emerged from the artwork: "Spirituality," "Relationships," "Journey," "Story," "Symbolism," and "Paradox."
SIGNIFICANCE OF RESULTS: These results illustrate how the creative arts can support the expression of diverse palliative care experiences, for patients, their families and palliative care staff, when words alone may not suffice.
AIM/OBJECTIVE: The purpose of the project was to provide information to inform the choice of educational resources available in British Columbia to support palliative care competency development for 4 disciplines: nurses, physicians, health care assistants, and social workers/counsellors. This article will describe the process of resource review. Results of the review are available at https://www.bc-cpc.ca/cpc/education-resource-review/ . The objectives were to (1) identify gaps common to all educational resources, (2) provide information on content addressing competencies as well as logistics such as time required, cost, delivery method, and training requirements for instructors, and (3) develop a reproducible process for assessment of educational resources which is unbiased, transparent, and competency based.
METHOD: Sixteen educational resources were assessed for the percentage of competencies that were addressed. Gaps common to all resources were identified.
RESULTS: The review process is described and can be replicated when assessing future versions of these and other palliative continuing education courses. This is a reproducible methodology for review of competency-based educational resources which could be applied for any practice-related subject.
CONCLUSION: This review process provided information which can inform a provincial interprofessional palliative education plan. The methodology may be used by others to assess and choose between competency-based education resources with a palliative population focus and other patient population foci.
Background: Delirium is a distressing neurocognitive disorder that is common among terminally ill individuals, although few studies have described its occurrence in the acute care setting among this population.
Aim: To describe the prevalence of delirium in patients admitted to acute care hospitals in Ontario, Canada, in their last year of life and identify factors associated with delirium.
Design: Population-based retrospective cohort study using linked health administrative data. Delirium was identified through diagnosis codes on hospitalization records.
Setting/participants: Ontario decedents (1 January 2014 to 31 December 2016) admitted to an acute care hospital in their last year of life, excluding individuals age of <18 years or >105 years at admission, those not eligible for the provincial health insurance plan between their hospitalization and death dates, and non-Ontario residents.
Results: Delirium was recorded as a diagnosis in 8.2% of hospitalizations. The frequency of delirium-related hospitalizations increased as death approached. Delirium prevalence was higher in patients with dementia (prevalence ratio: 1.43; 95% confidence interval: 1.36–1.50), frailty (prevalence ratio: 1.67; 95% confidence interval: 1.56–1.80), or organ failure–related cause of death (prevalence ratio: 1.23; 95% confidence interval: 1.16–1.31) and an opioid prescription (prevalence ratio: 1.17; 95% confidence interval: 1.12–1.21). Prevalence also varied by age, sex, chronic conditions, antipsychotic use, receipt of long-term care or home care, and hospitalization characteristics.
Conclusion: This study described the occurrence and timing of delirium in acute care hospitals in the last year of life and identified factors associated with delirium. These findings can be used to support delirium prevention and early detection in the hospital setting.
It has historically been a crime in Canada to provide assistance to someone in ending their own life, however, this paradigm was inverted in 2015 when the Supreme Court of Canada (SCC) ruled that restrictions on this practice, within certain defined parameters, violated the right to life, liberty, and security of the person. Subsequently, recent legal and policy decisions have highlighted the issue of how to balance the rights of individuals to access MAiD with the rights of care providers to exercise conscience-based objections to participation in this process. We argue that there is significant harm and ethical hazard in disregarding individual and institutional rights to conscientious objection and since measures less coercive than the threat of regulatory or economic sanctions do exist, there should be no justification for such threats in Canada’s health care systems.
Background: Many people with terminal illness prefer to die in home-like settings—including care homes, hospices, or palliative care units—rather than an acute care hospital. Home-based palliative care services can increase the likelihood of death in a community setting, but the provision of these services may increase costs relative to usual care.
Objective: The aim of this study was to estimate the incremental cost per community death for persons enrolled in end-of-life home care in Ontario, Canada, who died between 2011 and 2015.
Methods: Using a population-based cohort of 50,068 older adults, we determined the total cost of care in the last 90 days of life, as well as the incremental cost to achieve an additional community death for persons enrolled in end-of-life home care, in comparison with propensity score–matched individuals under usual care (ie, did not receive home care services in the last 90 days of life).
Results: Recipients of end-of-life home care were nearly 3 times more likely to experience a community death than individuals not receiving home care services, and the incremental cost to achieve an additional community death through the provision of end-of-life home care was CAN$995 (95% confidence interval: -$547 to $2392).
Conclusion: Results suggest that a modest investment in end-of-life home care has the potential to improve the dying experience of community-dwelling older adults by enabling fewer deaths in acute care hospitals.
Background: Substitute decision-makers (SDMs) make decisions on behalf of patients who do not have capacity, in line with previously expressed wishes, values and beliefs. However, miscommunications and poor awareness of previous wishes often lead to inappropriate care. Increasing public preparedness to communicate on behalf of loved ones may improve care in patients requiring an SDM.
Methods: We conducted an online survey in January 2019 with a representative sample of the Canadian population. The primary outcome was self-reported preparedness to be an SDM. The secondary outcome was support for a high school curriculum on the role of SDMs. The effect of socio-demographics, known enablers and barriers to acting as an SDM, and attitudes towards a high school curriculum were assessed using multivariate analysis.
Results: Of 1,000 participants, 53.1% felt prepared to be an SDM, and 75.4% stated they understood their loved one’s values. However, only 55.6% reported having had a meaningful conversation with their loved one about values and wishes, and only 61.7% reported understanding the SDM role. Engagement in advance care planning for oneself was low (23.1%). Age, experience, training and comfort with communication were associated with preparedness in our multivariate analysis. A high school curriculum was supported by 61.1% of respondents, with 28.3% neutral and 10.6% against it.
Interpretation: There is a gap between perceived and actual preparedness to be an SDM. Many report understanding their loved one’s values yet have not asked them about wishes in illness or end of life. The majority of respondents support high school education to improve preparedness.
Background: although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients’ wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP.
Methods: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients’ knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper.
Results: One hundred two participants provided an analyzable response to the survey when asked why they haven’t talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It’s not a priority; and 8. A lack of knowledge about ACP.
Conclusions: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.
In this edition of the Canadian journal of psychiatry, van Veen and colleagues provide a thorough scoping review of the literature regarding physician-assisted death (PAD) in patients with a psychiatric disorder (PPD).
[Début de l'article]
The coronavirus disease 2019 (COVID-19) pandemic is causing unprecedented challenges for long-term care homes (LTCHs). There have been several clusters of severe acute respiratory syndrome coronavirus 2 infections within LTCHs and approximately half of all deaths in Canada at the time of writing have been in this setting.
[Début de l'article]
Background: The provision of end-of-life care is receiving attention locally, provincially, and nationally in Canada. It is important to ensure that interprofessional standards and competencies are in place to provide quality end-of-life care that meets the needs of patients and their families. The purpose of this content review was to identify core standards and competencies essential to an interprofessional team providing end-of-life care.
Methods: The researchers conducted a review of health professional associations and registration bodies that support professionals providing end-of-life care to identify existing standards and competencies. Key concepts were reviewed and organized using thematic analysis; relationships were developed; and core themes for interprofessional end-of-life care were identified.
Results:Four themes essential to the provision of end-of-life care were common across all health professions: (1) access to care, (2) professional practice, (3) person-centered care, and (4) the process and delivery of care.
Conclusions: Health professional associations need to ensure end-of-life care standards and competencies are in place for the provision of appropriate and holistic care. Aligning standards and competencies across professions improves the preparedness of health professionals to provide interprofessional end-of-life care.
Background: Concerns regarding personal, professional, administrative, and institutional implications of medical assistance in dying (MAiD) are of particular interest to palliative and hospice care providers (PHCPs), who may encounter additional moral distress and professional challenges in providing end-of-life (EOL) care in the new legislative and cultural era.
Objective: To explore PHCPs' encountered challenges and resource recommendations for caring for patients considering MAiD.
Design: Qualitative thematic analysis of audio-recorded semistructured interviews with PHCPs.
Setting/Subjects: Multidisciplinary PHCPs in acute, community, residential, and hospice care in Vancouver, Canada, with experience supporting patients who have made MAiD inquiries or requests.
Measurements: Interviews were deidentified, transcribed verbatim, and coded by four researchers using a common coding scheme. Key themes were analyzed.
Results: Twenty-six PHCP participants included physicians (n = 7), nurses (n = 12), social workers (n = 5), and spiritual health practitioners (n = 2). Average interview length was 52 minutes (range 35–90). Analysis revealed four broad challenges associated with providing EOL care after MAiD legalization: (1) moral ambiguity and provider distress, (2) family distress, (3) interprofessional team conflict, and (4) impact on palliative care. Participants also recommended three types of resources to support clinicians in delivering quality EOL care to patients contemplating MAiD: (1) education and training, (2) pre- and debriefing for team members, and (3) tailored bereavement support.
Conclusions: PHCPs encountered multilevel MAiD-related challenges, but noted improvement in organizational policies and coordination. Resources to enhance training, pre- and debriefing, and tailored bereavement may further support PHCPs in providing high-quality EOL care as they navigate the legislative and cultural shifts.
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.