How the COVID-19 pandemic shaped Canadians' preferences for setting of dying: Comparison of two panel surveys.

The purpose of this article is to assess whether COVID-19 shaped Canadians' preferred settings of dying. We compared data collected using the same survey from two independent but comparable sets of panel respondents, prior to and after the onset of the pandemic. A vignette methodology was used to assess preferences for dying in each of four settings: home, acute/intensive care, palliative care, and long-term residential care.

How initial policy responses to COVID-19 contributed to shaping dying at home preferences and care provision: key informant perspectives from Canada.

Objectives: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home.

Methods: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada.

End-of-life doulas: international reflections on a transnational movement.

This review article summarizes the findings from the first virtual International End-of-Life Doula Symposium, held over 3 days on 25-27 April 2022. More than 40 people attended from seven countries, predominantly from Australia, Canada, the United States and the United Kingdom, and they were primarily experienced practitioners. In this article, we focus on participants' topics of conversations and experiences that were relevant across international boundaries, organized through the symposium themes of developments, disruptions, dilemmas and directions.

Community perspectives on structural barriers to dying well at home in Canada.

Objectives: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home.

Methods: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities.

'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada.

Background: Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined.

Objective: The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home.

Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study.

Background: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age.

Describing the end-of-life doula role and practices of care: perspectives from four countries.

Background: End-of-life doulas are emerging as a potentially important new form of community-based caregiving in the global North, yet we know little about this form of care. The aim of our study was to solicit the perspective of key stakeholders and early innovators in community-based end-of-life care about the development and practices of end-of-life doulas.

Methods: We conducted 22 semi-structured interviews with participants in four countries where end-of-life doulas are most active: Australia, Canada, the United States, and the United Kingdom.

Patient-centred care in haemophilia: Patient perspectives on visualization and participation in decision-making.

Introduction And Aim: The British Columbia Adult Haemophilia Team recently adopted a patient-centred care approach. The team presented visual information on an individual's pharmacokinetic profile and bleed history and encouraged patients to participate in treatment decisions. This qualitative study explored how this approach changed patients' understanding of haemophilia and how it facilitated them to make treatment decisions.

Organizing end of life in hospital palliative care: A Canadian example.

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.

What is the cultural value of dying in an era of assisted dying?

Assisted dying is now a lawful and integral component of many societies 'death system', orienting individual and collective encounters with death and dying. While only a very small number of people living with terminal illness in these societies will opt for an assisted death, the choice, nevertheless, exists for those who satisfy the legal criteria. Theoretically, in these jurisdictions, this turns dying into an optional part of the human life cycle; a final phase of life that, until now, seemed a universal feature of life except in instances of sudden death.

A critical rejoinder to "Life's End: Ethnographic Perspectives".

This article stands as a response to Goodwin-Hawkins and Dawson's (2018) article "Life's End: Ethnographic Perspectives" which was published in this journal as an Introduction to a Special Issue of ethnographies about end of life. We address three interwoven fallacies promoted in "Life's End." First, we begin by challenging the authors' central contention that there is no "rigorous body of anthropological work on the issue of dying.

Social representation of palliative care in the Spanish printed media: A qualitative analysis.

Background: Lack of social awareness is a major barrier to the development of palliative care. Mass media influences public opinion, and frequently deal with palliative care contributing to its image and public understanding.

Aim: To analyse how palliative care is portrayed in Spanish newspapers, as well as the contribution made by the press to its social representation.

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings.

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings.

Micro-Meso-Macro Practice Tensions in Using Patient-Reported Outcome and Experience Measures in Hospital Palliative Care.

This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians' use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns.

Relational use of an electronic quality of life and practice support system in hospital palliative consult care: A pilot study.

Objectives: This study is part of an overarching research initiative on the development and integration of an electronic Quality of Life and Practice Support System (QPSS) that uses patient-reported outcome and experience measures in clinical practice. The current study focused on palliative nurse consultants trialing the QPSS with older hospitalized adults receiving acute care. The primary aim of the study was to better understand consultants' and patients' experiences and perspectives of use.

Is current preoperative frailty assessment adequate?

Preoperative frailty predicts adverse postoperative outcomes. Recommendations for preoperative assessment of elderly patients include performing a frailty assessment. Despite the advantages of incorporating frailty assessment into surgical settings, there is limited research on surgical health care professionals' perception and use of frailty assessment for perioperative care.

Surgical frailty assessment: a missed opportunity.

Background: Preoperative frailty predicts adverse postoperative outcomes. Despite the advantages of incorporating frailty assessment into surgical settings, there is limited research on surgical healthcare professionals' use of frailty assessment for perioperative care.

Methods: Healthcare professionals caring for patients enrolled at a Canadian teaching hospital were surveyed to assess their perceptions of frailty, as well as attitudes towards and practices for frail patients.

Effectiveness of a Grief Intervention for Caregivers of People With Dementia.

In this article, we report on the structure and effectiveness of a grief management coaching intervention with caregivers of individuals with dementia. The intervention was informed by Marwit and Meuser's Caregiver Grief Model and considered levels of grief, sense of empowerment, coping, and resilience using five methods of delivery. Results indicate that the intervention had significant positive effects on caregivers' levels of grief and increased their levels of empowerment, coping, and resilience.

Communicating prognostic uncertainty in potential end-of-life contexts: experiences of family members.

Background: This article reports on the concept of "communicating prognostic uncertainty" which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care.

Methods: Open-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants' own words, the connection between their numerical rankings of satisfaction and the experience of care.

Family members' perceptions of end-of-life care across diverse locations of care.

Background: The goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life.

Methods: A previously validated instrument was used in a telephone survey with bereaved family members (n=90) of patients who died within an organization in British Columbia.

Results: Bereaved family members had many unmet needs for information about the patient's changing condition, the process of dying, how symptoms would be managed and what to do at the time of death.