BACKGROUND: Home is often deemed to be the preferred place of death for most patients. Knowing the factors related to the actualization of a preferred home death may yield evidence to enhance the organization and delivery of healthcare services.
OBJECTIVE: The objectives of this study were to measure the congruence between a preferred and actualized home death among cancer patients in receipt of home-based palliative care in Canada and explore predictors of actualizing a preferred home death.
METHODS: A longitudinal prospective cohort design was conducted. A total of 290 caregivers were interviewed biweekly over the course of patients' palliative care trajectory between July 2010 and August 2012. Cross-tabulations and multivariate analyses were used in the analysis.
RESULTS: Home was the most preferred place of death, and 68% of patients who had voiced a preference for home death had their wish fulfilled. Care context variables, such as living with others and the intensity of home-based nursing visits and hours of care provided by personal support workers (PSW), contributed to actualizing a preferred home death. The intensity of emergency department visits was associated with a lower likelihood of achieving a preferred home death.
CONCLUSIONS: Higher intensity of home-based nursing visits and hours of PSW care contribute to the actualization of a preferred home death.
IMPLICATIONS FOR PRACTICE: This study has implications for policy decision-makers and healthcare managers. Improving and expanding the provision of home-based PSW and nursing services in palliative home care programs may help patients to actualize a preferred home death.
OBJECTIVE: To measure the associations between newly initiated palliative care in the last six months of life, healthcare use, and location of death in adults dying from non-cancer illness, and to compare these associations with those in adults who die from cancer at a population level.
DESIGN: Population based matched cohort study.
SETTING: Ontario, Canada between 2010 and 2015.
PARTICIPANTS: 113 540 adults dying from cancer and non-cancer illness who were given newly initiated physician delivered palliative care in the last six months of life administered across all healthcare settings. Linked health administrative data were used to directly match patients on cause of death, hospital frailty risk score, presence of metastatic cancer, residential location (according to 1 of 14 local health integration networks that organise all healthcare services in Ontario), and a propensity score to receive palliative care that was derived by using age and sex.
MAIN OUTCOME MEASURES: Rates of emergency department visits, admissions to hospital, and admissions to the intensive care unit, and odds of death at home versus in hospital after first palliative care visit, adjusted for patient characteristics (such as age, sex, and comorbidities).
RESULTS: In patients dying from non-cancer illness related to chronic organ failure (such as heart failure, cirrhosis, and stroke), palliative care was associated with reduced rates of emergency department visits (crude rate 1.9 (standard deviation 6.2) v 2.9 (8.7) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.85 to 0.91), admissions to hospital (crude rate 6.1 (standard deviation 10.2) v 8.7 (12.6) per person year; adjusted rate ratio 0.88, 95% confidence interval 0.86 to 0.91), and admissions to the intensive care unit (crude rate 1.4 (standard deviation 5.9) v 2.9 (8.7) per person year; adjusted rate ratio 0.59, 95% confidence interval 0.56 to 0.62) compared with those who did not receive palliative care. Additionally increased odds of dying at home or in a nursing home compared with dying in hospital were found in these patients (n=6936 (49.5%) v n=9526 (39.6%); adjusted odds ratio 1.67, 95% confidence interval 1.60 to 1.74). Overall, in patients dying from dementia, palliative care was associated with increased rates of emergency department visits (crude rate 1.2 (standard deviation 4.9) v 1.3 (5.5) per person year; adjusted rate ratio 1.06, 95% confidence interval 1.01 to 1.12) and admissions to hospital (crude rate 3.6 (standard deviation 8.2) v 2.8 (7.8) per person year; adjusted rate ratio 1.33, 95% confidence interval 1.27 to 1.39), and reduced odds of dying at home or in a nursing home (n=6667 (72.1%) v n=13 384 (83.5%); adjusted odds ratio 0.68, 95% confidence interval 0.64 to 0.73). However, these rates differed depending on whether patients dying with dementia lived in the community or in a nursing home. No association was found between healthcare use and palliative care for patients dying from dementia who lived in the community, and these patients had increased odds of dying at home.
CONCLUSIONS: These findings highlight the potential benefits of palliative care in some non-cancer illnesses. Increasing access to palliative care through sustained investment in physician training and current models of collaborative palliative care could improve end-of-life care, which might have important implications for health policy.
Despite efforts to improve access to palliative care services, a significant number of patients still have unmet needs throughout their continuum of care. As such, this project was conducted to increase recognition of patients who could benefit from palliative care, increase referrals, and connect regional sites. This study utilized Plan-Do-Study-Act cycles through a quality improvement approach to develop and test the Palliative Care Screening Tool and aimed to screen 100% of patients within 24 hours who were admitted to selected units by February 2017. The intervention was implemented in 3 different units, each within community hospitals. Patients 18 years or older were screened if they were admitted to one of the selected units for the project, regardless of their diagnosis, age, or comorbidities. The percentage of newly admitted patients who were screened and the total number of palliative care consults were assessed as outcome measures. The tool was met with varying compliance among the 3 sites. However, there was an overall increase in consults across all hospital sites, and an increase in the proportion of noncancer patients was demonstrated. Although the aim was not reached, the tool helped to create a shift in the demographic of patients identified as palliative.
Nearly all reports of interprofessional education (IPE) in palliative care have excluded pharmacy students. This article describes an IPE event between pharmacy and nursing students and assesses its impact on IPE competencies. Second-year nursing students and third-year pharmacy students participated in an evening-long event, focused on a married couple who each require palliative care—one for end-of-life planning and one for chronic disease progression. The impact of the event was assessed using the Interprofessional Collaborative Competency Attainment Scale (ICCAS) and qualitative feedback. Two hundred nine (96.7%) completed the ICCAS, and 16 of the 20 statements of the ICCAS showed large positive effect sizes (Cohen d >= 0.8), with the remaining 4 showing moderate positive effect sizes (Cohen d >= 0.5). The greatest effect sizes were related to improved awareness of complementary skillsets and knowledge between the professions. Addressing team conflict and including the patient/family in decision-making showed the least improvement. While ongoing interactions are ideal for the development of skills related to conflict and team development, this article demonstrates that even a 1-time activity can have an impact on students' interprofessional care competence.
BACKGROUND: Worldwide, pharmacy practice is changing to include new roles and responsibilities. Laws enabling the implementation of assisted dying are expanding in international jurisdictions. Pharmacy practice in assisted dying is subsequently expanding. However, studies of how pharmacists experience their practice when engaged in assisted dying are absent. To progress research into the lived experiences of pharmacists practicing in assisted dying, the development of an inquiry framework to guide such research is the first step.
OBJECTIVE: The objective was to develop a theoretical framework of inquiry for use in subsequent continuing research which may explore the actual experience of pharmacy practice in assisted dying.
METHODS: Perspectives were gathered from expert and senior pharmacists who were anticipating the imminent implementation of assisted dying practice. Analysis focused on understanding what aspects of practice experience were important to them. Interview-conversations centred on the question: If you had the chance to talk to experienced pharmacist practitioners who have been involved in the practice of assisted dying, what aspects regarding their experiences, would you like to know about? A conventional approach to qualitative content analysis was utilized to analyze the data.
RESULTS: Findings summarized questions posed by pharmacists contemplating the implementation of assisted dying practice. These perspectives formed the foundation of a theoretical inquiry framework constituted by 8 inter-related dimensional range-continuums. Each range-continuum, designed to explore the lived experiences of pharmacists in practice, is defined. Examples of how the inquiry dimensions will be used to inform future exploratory research are offered within the framework.
CONCLUSIONS: The theoretical inquiry framework will be used to develop knowledge for pharmacists contemplating participation (or not) in assisted dying practice. It is timely to progress research that reveals the informed experiences of pharmacists that are actually practicing in this area. The framework may be adapted for researching pharmacists' experience in other practice areas and contexts.
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.
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.
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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).
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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.