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INTRODUCTION: The objective of this study was to create a definition of patient-important upper gastrointestinal bleeding during critical illness as an outcome for a randomized trial. DESIGN: This was a sequential mixed-methods qualitative-dominant multi-center study with an instrument-building aim. In semi-structured individual interviews or focus groups we elicited views from survivors of critical illness and family members of patients in the intensive care unit (ICU) regarding which features indicate important gastrointestinal bleeding. Quantitative demographic characteristics were collected. We analyzed qualitative data using inductive content analysis to develop a definition for patient-important upper gastrointestinal bleeding. SETTING: Canada and the United States. PARTICIPANTS: 51 ICU survivors and family members of ICU patients. RESULTS: Participants considered gastrointestinal bleeding to be important if it resulted in death, disability, or prolonged hospitalization. The following also signaled patient-important upper gastrointestinal bleeding: blood transfusion, vasopressors, endoscopy, CT-angiography, or surgery. Whether an intervention evinced concern depended on its effectiveness, side-effects, invasiveness and accessibility; contextual influences included participant familiarity and knowledge of interventions and trust in the clinical team. CONCLUSIONS: Survivors of critical illness and family members described patient-important upper gastrointestinal bleeding differently than current definitions of clinically-important upper gastrointestinal bleeding.
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Estado Terminal , Unidades de Terapia Intensiva , Humanos , Hemorragia Gastrointestinal , Cuidados Críticos , FamíliaRESUMO
INTRODUCTION: Clinically important upper gastrointestinal bleeding is conventionally defined as bleeding accompanied by haemodynamic changes, requiring red blood cell transfusions or other invasive interventions. However, it is unclear if this clinical definition reflects patient values and preferences. This protocol describes a study to elicit views from patients and families regarding features, tests, and treatments for upper gastrointestinal bleeding that are important to them. METHODS AND ANALYSIS: This is a sequential mixed-methods qualitative-dominant multi-centre study with an instrument-building aim. We developed orientation tools and educational materials in partnership with patients and family members, including a slide deck and executive summary. We will invite intensive care unit (ICU) survivors and family members of former ICU patients to participate. Following a virtual interactive presentation, participants will share their perspectives in an interview or focus group. Qualitative data will be analysed using inductive qualitative content analysis, wherein codes will be derived directly from the data rather than using preconceived categories. Concurrent data collection and analysis will occur. Quantitative data will include self-reported demographic characteristics. This study will synthesise the values and perspectives of patients and family members to create a new trial outcome for a randomised trial of stress ulcer prophylaxis. This study is planned for May 2022 to August 2023. The pilot work was completed in Spring 2021. ETHICS AND DISSEMINATION: This study has ethics approval from McMaster University and the University of Calgary. Findings will be disseminated via manuscript and through incorporation as a secondary trial outcome on stress ulcer prophylaxis. TRIAL REGISTRATION NUMBER: NCT05506150.
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Úlcera Péptica , Úlcera , Humanos , Hemorragia Gastrointestinal/terapia , Unidades de Terapia Intensiva , Estudos Multicêntricos como Assunto , Projetos de PesquisaRESUMO
OBJECTIVES: The Short-Form HIV Disability Questionnaire (SF-HDQ) was developed to measure the presence, severity and episodic nature of health challenges across six domains. Our aim was to assess the sensibility, utility and implementation of the SF-HDQ in clinical practice. DESIGN: Mixed methods study design involving semistructured interviews and questionnaire administration. PARTICIPANTS: We recruited adults living with HIV and HIV clinicians in Canada, Ireland and the USA. METHODS: We electronically administered the SF-HDQ followed by a Sensibility Questionnaire (face and content validity, ease of usage, format) and conducted semistructured interviews to explore the utility and implementation of the SF-HDQ in clinical practice. The threshold for sensibility was a median score of >5/7 (adults living with HIV) and>4/7 (HIV clinicians) for ≥80% of items. Qualitative interview data were analysed using directed content analysis. RESULTS: Median sensibility scores were >5 (adults living with HIV; n=29) and >4 (HIV clinicians; n=16) for 18/19 (95%) items. Interview data indicated that the SF-HDQ represents the health-related challenges of living with HIV and other concurrent health conditions; captures the daily episodic nature of HIV; and is easy to use. Clinical utility included measuring health challenges and change over time, guiding referral to specialists and services, setting goals, facilitating communication and fostering a multidisciplinary approach to care. Considerations for implementation included flexible, person-centred approaches to administration, and communicating scores based on personal preferences. CONCLUSIONS: The SF-HDQ possesses sensibility and utility for use in clinical settings with adults living with HIV and HIV clinicians in three countries.
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Infecções por HIV , Organizações , Adulto , Canadá , Infecções por HIV/diagnóstico , Humanos , Irlanda , Inquéritos e QuestionáriosRESUMO
Following an initial study of the needs of healthcare providers (HCP) regarding the introduction of Medical Assistance in Dying (MAiD), and the subsequent development of an assisted dying program, this study sought to determine the efficacy and impact of MAiD services following the first two years of implementation. The first of three aims of this research was to understand if the needs, concerns and hopes of stakeholders related to patient requests for MAiD were addressed appropriately. Assessing how HCPs and families perceived the quality of MAiD services, and determining if the program successfully accommodated the diverse needs and perspectives of HCPs, rounded out this quality evaluation. This research implemented a mixed-methods design incorporative of an online survey with Likert scale and open-ended questions, as well as focus groups and interviews with staff and physicians, and interviews with MAiD-involved family members. There were 356 online surveys, as well as 39 participants in six focus groups with HCP, as well as fourteen interviews with MAiD-involved family members. Participants indicated that high-quality MAiD care could only be provided with enabling resources such as policies and guidelines to ensure safe, evidence-based, standardized care, as well as a specialized, trained MAiD team. Both focus group and survey data from HCPs suggest the infrastructure developed by the hospital was effective in delivering high-quality MAiD care that supports the diverse needs of various stakeholders. This study may serve as a model for evaluating the impact and quality of services when novel and ethically-contentious clinical practices are introduced to healthcare organizations.
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Médicos , Suicídio Assistido , Assistência Terminal , Humanos , Assistência Médica , Hospitais , CanadáRESUMO
This study assessed the attitudes and needs of physicians and health professional staff at a tertiary care hospital in Canada regarding the introduction of physician assisted dying (PAD) during 2015-16. This research aimed to develop an understanding of the wishes, concerns and hopes of stakeholders related to handling requests for PAD; to determine what supports/structures/resources health care professionals (HCP) require in order to ensure high quality and compassionate care for patients requesting PAD, and a supportive environment for all healthcare providers across the moral spectrum. This study constituted a mixed methods design with a qualitative descriptive approach for the study's qualitative component. A total of 303 HCPs working in a tertiary care hospital completed an online survey and 64 HCPs working in hospital units with high mortality rates participated in 8 focus group discussions. Both focus group and survey data coalesced around several themes to support the implementation of PAD following the decriminalization of this practice: the importance of high quality care; honoring moral diversity; supporting values (such as autonomy, privacy, beneficence); and developing resources, including collaboration with palliative care, education, policies and a specialized team. This study provided the foundational evidence to support the development of the PAD program described in other papers in this collection, and can be a model for gathering evidence from stakeholders to inform the implementation of PAD in any healthcare organization.
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Médicos , Suicídio Assistido , Humanos , Avaliação das Necessidades , Cuidados Paliativos/métodos , Hospitais , CanadáRESUMO
Medical assistance in dying (MAiD) in Canada is a complex, novel interprofessional practice governed by stringent legal criteria. Often, patients need assistance navigating the system, and MAiD providers/assessors struggle with the administrative challenges of MAiD. Resultantly, the role of the MAiD care coordinator has emerged across the country as a novel practice dedicated to supporting access to MAiD and ensuring compliance with regulatory requirements. However, variability in the roles and responsibilities of MAiD care coordinators across Canada has highlighted the need for accountability and standardization for this practice. This manuscript constitutes a first attempt to describe this emerging role, through discussion of proposed standards of practice, as well as roles and responsibilities, and ethical duties of this emergent professional practice. We detail the core commitments of MAiD care coordinators to patients, providers/assessors and institutions involved in the MAiD process. We address the core competencies that inform the unique skillset required by MAiD care coordinators to facilitate high-quality care, while highlighting the moral and ethical considerations embedded in this work. To illustrate the complexity of the MAiD care coordinator role, case examples involving ethical dilemmas encountered in practice are included. Finally, a code of ethics is proposed to serve as a guide for appropriate professional practice and conduct. This manuscript is intended to illustrate the importance of transparency and accountability for this new role that provides service to vulnerable patients and families; this is especially critical as the ethical complexity of MAiD is likely to increase with future changes in legislation opening MAiD access to new populations.
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Suicídio Assistido , Assistência Terminal , Humanos , Assistência Médica , Princípios Morais , Ocupações em Saúde , CanadáRESUMO
RATIONALE AND OBJECTIVES: Education of patients is thought to be key to high-quality oral anticoagulant (OAC) medication management. Theoretically, improving patients' knowledge should improve their self-management skills and adherence. The study's objective was to explore the opinions of healthcare providers and patients on the desired content and format of patient education on OACs, in addition to perceived barriers to high-quality patient education. METHODS: We applied qualitative descriptive methods in a focus group study on OAC management. Five focus group discussions were conducted in two health regions in Southwestern Ontario from 2017 to 2018 with 19 patients, 7 caregivers and 16 healthcare providers (physicians, nurses and pharmacists). During the focus groups, participants discussed their experiences with OAC education and made suggestions about the content and format for patient education on OACs. Transcripts were analysed using conventional content analysis. RESULTS: We identified the five themes of patient education on OAC management: content of OAC education (rationale, risk and appropriate drug administration methods), the best times for providing OAC education (time of OACs initiation along with continuing education), preferred education delivery strategies (case management targeted patient information summaries from authoritative sources such as Thrombosis Canada and video education), patient and community pharmacist engagement in OAC education, and perceived barriers to optimal patient education (patients depending too much on their healthcare providers for advice, the limited time patients spend with healthcare providers, gaps in clear communication between providers and the lack of a nationally or provincially coordinated OAC management programme). CONCLUSION: Our findings suggest that patients, caregivers and healthcare providers support the need for education on OACs, including for patients taking DOACs. Specific important content and proper education format are needed. The optimal combination of content, format, duration, timing and sources for OAC education requires further research.
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Anticoagulantes , Educação de Pacientes como Assunto , Humanos , Administração Oral , Pessoal de Saúde , OntárioRESUMO
BACKGROUND: Infection control protocols, including visitor restrictions, implemented during the COVID-19 pandemic threatened the ability to provide compassionate, family-centered care to patients dying in the hospital. In response, clinicians used videoconferencing technology to facilitate conversations between patients and their families. OBJECTIVES: To understand clinicians' perspectives on using videoconferencing technology to adapt to pandemic policies when caring for dying patients. METHODS: A qualitative descriptive study was conducted with 45 clinicians who provided end-of-life care to patients in 3 acute care units at an academically affiliated urban hospital in Canada during the first wave of the pandemic (March 2020-July 2020). A 3-step approach to conventional content analysis was used to code interview transcripts and construct overarching themes. RESULTS: Clinicians used videoconferencing technology to try to bridge gaps in end-of-life care by facilitating connections with family. Many benefits ensued, but there were also some drawbacks. Despite the opportunity for connection offered by virtual visits, participants noted concerns about equitable access to videoconferencing technology and authenticity of technology-assisted interactions. Participants also offered recommendations for future use of videoconferencing technology both during and beyond the pandemic. CONCLUSIONS: Clinician experiences can be used to inform policies and practices for using videoconferencing technology to provide high-quality end-of-life care in the future, including during public health crises.
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COVID-19 , Assistência Terminal , Humanos , Pandemias , SARS-CoV-2 , TecnologiaRESUMO
BACKGROUND: Pandemic-related restrictions are expected to continue to shape end-of-life care and impact the experiences of dying hospitalised patients and their families. OBJECTIVE: To understand families' experiences of loss and bereavement during and after the death of their loved one amidst the SARS-CoV-2 (COVID-19) pandemic. DESIGN: Qualitative descriptive study. SETTING: Three acute care units in a Canadian tertiary care hospital. PARTICIPANTS: Family members of 28 hospitalised patients who died from March-July 2020. MAIN OUTCOME MEASURES: Qualitative semistructured interviews conducted 6-16 months after patient death inquired about family experiences before and beyond the death of their loved one and garnered suggestions to improve end-of-life care. RESULTS: Pandemic restrictions had consequences for families of dying hospitalised patients. Most family members described an attitude of acquiescence, some framing their experience as a sacrifice made for the public good. Families appreciated how clinicians engendered trust in the name of social solidarity while trying to mitigate the negative impact of family separation. However, fears about the patient's experience of isolation and changes to postmortem rituals also created despair and contributed to long-lasting grief. CONCLUSION: Profound loss and enduring grief were described by family members whose final connections to their loved one were constrained by pandemic circumstances. Families observed solidarity among clinical staff and experienced a sense of unity with staff, which alleviated some distress. Their suggestions to improve end-of-life care given pandemic restrictions included frequent, flexible communication, exceptions for family presence when safe, and targeted efforts to connect patients whose isolation is intensified by functional impairment or limited technological access. TRIAL REGISTRATION NUMBER: NCT04602520; Results.
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Luto , COVID-19 , Canadá , Cuidados Críticos , Família , Pesar , Humanos , Pandemias , Pesquisa Qualitativa , SARS-CoV-2RESUMO
OBJECTIVES: To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness. METHODS: The development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before-after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1-2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one's values. RESULTS: In the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (-6.7 points, 95% CI -11.1 to -2.3, p=0.003; 0-100 scale; N=100), with the most improvement seen in the values clarity subscale (-10.0 points, 95% CI -17.3 to -2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1-5 scale; N=61). CONCLUSIONS: The Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.
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Planejamento Antecipado de Cuidados , Tomada de Decisões , Humanos , Idoso , Conflito Psicológico , FamíliaRESUMO
BACKGROUND: Oral anticoagulants (OACs) are very commonly prescribed for prevention of serious vascular events, but are also associated with serious medication-related bleeding. Mitigation of harm is believed to require high-quality OAC management. This study aimed to identify barriers and facilitators for optimal OAC management from the perspective of patients, caregivers and healthcare providers. METHODS: Using a qualitative descriptive study design, we conducted five focus groups, three with patients and caregivers and two with health care providers, in two health regions in Southwestern Ontario. An expert facilitator led the discussions using a semi-structured interview guide. Each session was digitally recorded, transcribed verbatim and anonymized. Transcripts were analyzed in duplicate using conventional content analysis. RESULTS: Forty-two (19 patients, 7 caregivers, and 16 providers including physicians, nurses and pharmacists) participated. More than half of the patients received OAC for the treatment of venous thromboembolism (57.9%) and the majority (94.7%) were on chronic therapy (defined as >3 years). Data analysis organized codes describing barriers and facilitators into 4 main themes-medication-related, patient-related, provider-related, and system-related. Barriers highlighted were problems with medication access due to cost, patient difficulties with adherence, knowledge and adjusting their lifestyles to OAC therapy, provider expertise, time for adequate communication amongst providers and their patients, and health care system inadequacies in supporting communications and monitoring. Facilitators identified generally addressed these barriers. CONCLUSIONS: Many barriers to optimal OAC management exist even in the era of DOACs, many of which are amenable to facilitators of improved care coordination, patient education, and adherence monitoring.
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Anticoagulantes/administração & dosagem , Cuidadores/psicologia , Pessoal de Saúde/psicologia , Tromboembolia Venosa/tratamento farmacológico , Administração Oral , Adulto , Idoso , Anticoagulantes/uso terapêutico , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Ontário , Cooperação do Paciente , Padrões de Prática Médica , Pesquisa Qualitativa , Qualidade da Assistência à SaúdeRESUMO
OBJECTIVES: Although death is not uncommon for hospitalised patients with cancer, there are few interventions in oncology that are designed to create a dignified, compassionate end-of-life (EOL) experience for patients and families. The 3 Wishes Project (3WP), a programme in which clinicians elicit and implement final wishes for dying patients, has been shown effective in intensive care units (ICUs) at improving the EOL experience. The objective was to initiate 3WP on an oncology ward and evaluate its effect on family member experiences of their loved one's EOL. We hypothesised that the 3WP can be implemented in the non-ICU setting and help oncological patients and their families with transition to the EOL. METHODS: When the patient's probability of dying is greater than 95%, patients and families were invited to participate in the 3WP. Wishes were elicited, implemented and categorised. Audiorecorded, semistructured interviews were conducted with family members, transcribed and analysed using content analysis. RESULTS: 175 wishes were implemented for 52 patients with cancer (average cost of US$34). The most common wish (66%) was to personalise the environment. Qualitative analysis of 11 family member interviews revealed that the 3WP facilitates three transitions at the EOL: (1) the transition from multiple admissions to the final admission, (2) the transition of a predominantly caregiver role to a family member role and (3) the transition from a focus on the present to a focus on legacy. CONCLUSION: The 3WP can be implemented on the oncology ward and enhance the EOL experience for hospitalised patients with cancer.
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Importance: Discussions about goals of care with patients who are seriously ill typically occur infrequently and late in the illness trajectory, are of low quality, and focus narrowly on the patient's resuscitation preferences (ie, code status), risking provision of care that is inconsistent with patients' values. The Serious Illness Care Program (SICP) is a multifaceted communication intervention that builds capacity for clinicians to have earlier, more frequent, and more person-centered conversations. Objective: To explore clinicians' experiences with the SICP 1 year after implementation. Design, Setting, and Participants: This qualitative study was conducted at 2 tertiary care hospitals in Canada. The SICP was implemented at Hamilton General Hospital (Hamilton, Ontario) from March 1, 2017, to January 19, 2018, and at Foothills Medical Centre (Calgary, Alberta) from March 1, 2018, to December 31, 2020. A total of 45 clinicians were invited to participate in the study, and 23 clinicians (51.1%) were enrolled and interviewed. Semistructured interviews of clinicians were conducted between August 2018 and May 2019. Content analysis was used to evaluate information obtained from these interviews between May 2019 and May 2020. Exposures: The SICP includes clinician training, communication tools, and processes for system change. Main Outcomes and Measures: Clinicians' experiences with and perceptions of the SICP. Results: Among 23 clinicians interviewed, 15 (65.2%) were women. The mean (SD) number of years in practice was 14.6 (9.1) at the Hamilton site and 12.0 (6.9) at the Calgary site. Participants included 19 general internists, 3 nurse practitioners, and 1 social worker. The 3 main themes were the ways in which the SICP (1) supported changes in clinician behavior, (2) shifted the focus of goals-of-care conversations beyond discussion of code status, and (3) influenced clinicians personally and professionally. Changes in clinician behavior were supported by having a unit champion, interprofessional engagement, access to copies of the Serious Illness Conversation Guide, and documentation in the electronic medical record. Elements of the program, especially the Serious Illness Conversation Guide, shifted the focus of goals-of-care conversations beyond discussion of code status and influenced clinicians on personal and professional levels. Concerns with the program included finding time to have conversations, building transient relationships, and limiting conversation fluidity. Conclusions and Relevance: In this qualitative study, hospital clinicians described components of the SICP as supporting changes in their behavior and facilitating meaningful patient interactions that shifted the focus of goals-of-care conversations beyond discussion of code status. The perceived benefits of SICP implementation stimulated uptake within the medical units. These findings suggest that the SICP may prompt hospital culture changes in goals-of-care dialogue with patients and the care of hospitalized patients with serious illness.
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Comunicação , Cuidados Críticos/normas , Estado Terminal/terapia , Pessoal de Saúde/psicologia , Preferência do Paciente/psicologia , Assistência Centrada no Paciente/normas , Relações Médico-Paciente , Adulto , Alberta , Atitude do Pessoal de Saúde , Cuidados Críticos/estatística & dados numéricos , Feminino , Pessoal de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Ontário , Preferência do Paciente/estatística & dados numéricos , Assistência Centrada no Paciente/estatística & dados numéricos , Guias de Prática Clínica como Assunto , Pesquisa QualitativaRESUMO
This paper reports findings from a modified World Café conducted at a palliative care professional conference in 2019, where input on tools to support advance care planning (ACP) was solicited from healthcare practitioners, managers and family members of patients. Barriers to ACP tool use included insufficient structures and resources in healthcare, death-avoidance culture and inadequate patient and family member engagement. Recommendations for tool use included clarification of roles and processes, training, mandates and monitoring, leadership support, greater reflection of diversity in tools and methods for public engagement. This paper illuminates factors to consider when implementing ACP tools in healthcare.
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Planejamento Antecipado de Cuidados , Conhecimentos, Atitudes e Prática em Saúde , Atitude do Pessoal de Saúde , Canadá , Assistência à Saúde Culturalmente Competente , Família , Humanos , Grupos Minoritários , Participação do Paciente , Minorias Sexuais e de GêneroRESUMO
BACKGROUND: Scaling-up and sustaining healthcare interventions can be challenging. Our objective was to describe how the 3 Wishes Project (3WP), a personalized end-of-life intervention, was scaled-up and sustained in an intensive care unit (ICU). METHODS: In a longitudinal mixed-methods study from January 12,013 - December 31, 2018, dying patients and families were invited to participate if the probability of patient death was > 95% or after a decision to withdraw life support. A research team member or bedside clinician learned more about each of the patients and their family, then elicited and implemented at least 3 personalized wishes for patients and/or family members. We used a qualitative descriptive approach to analyze interviews and focus groups conducted with 25 clinicians who cared for the enrolled patients. We used descriptive statistics to summarize patient, wish, and clinician characteristics, and analyzed outcome data in quarters using Statistical Process Control charts. The primary outcome was enrollment of terminally ill patients and respective families; the secondary outcome was the number of wishes per patient; tertiary outcomes included wish features and stakeholder involvement. RESULTS: Both qualitative and quantitative analyses suggested a three-phase approach to the scale-up of this intervention during which 369 dying patients were enrolled, having 2039 terminal wishes implemented. From a research project to clinical program to an approach to practice, we documented a three-fold increase in enrolment with a five-fold increase in total wishes implemented, without a change in cost. Beginning as a study, the protocol provided structure; starting gradually enabled frontline staff to experience and recognize the value of acts of compassion for patients, families, and clinicians. The transition to a clinical program was marked by handover from the research staff to bedside staff, whereby project catalysts mentored project champions to create staff partnerships, and family engagement became more intentional. The final transition involved empowering staff to integrate the program as an approach to care, expanding it within and beyond the organization. CONCLUSIONS: The 3WP is an end-of-life intervention which was implemented as a study, scaled-up into a clinical program, and sustained by becoming integrated into practice as an approach to care.
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Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Família , Grupos Focais , Humanos , Unidades de Terapia IntensivaRESUMO
PURPOSE: The 3 Wishes Project (3WP) promotes holistic end-of-life care in the intensive care unit (ICU) to honor dying patients, support families, and encourage clinician compassion. Organ donation is a wish that is sometimes made by, or on behalf of, critically ill patients. Our objective was to describe the interface between the 3WP and organ donation as experienced by families, clinicians, and organ donation coordinators. METHODS: In a multicenter evaluation of the 3WP in 4 Canadian ICUs, we conducted a thematic analysis of transcripts from interviews and focus groups with clinicians, organ donation coordinators, and families of dying or died patients for whom donation was considered. RESULTS: We analyzed transcripts from 26 interviews and 2 focus groups with 18 family members, 17 clinicians, and 6 organ donation coordinators. The central theme describes the mutual goals of the 3WP and organ donation-emphasizing personhood and agency across the temporal continuum of care. During family decision-making, conversations encouraged by the 3WP can facilitate preliminary discussions about donation. During preparation for donation, memory-making activities supported by the 3WP redirect focus toward personhood. During postmortem family care, the 3WP supports families, including when donation is unsuccessful, and highlights aspirational pursuits of donation while encouraging reflections on other fulfilled wishes. CONCLUSIONS: Organ donation and the 3WP provide complementary opportunities to engage in value-based conversations during the dying process. The shared values of these programs may help to incorporate organ donation and death into a person's life narrative and incorporate new life into a person's death narrative.
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Assistência Terminal , Obtenção de Tecidos e Órgãos , Canadá , Morte , Tomada de Decisões , Família , Humanos , Unidades de Terapia IntensivaRESUMO
BACKGROUND: The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic has affected the hospital experience for patients, visitors, and staff. OBJECTIVE: To understand clinician perspectives on adaptations to end-of-life care for dying patients and their families during the pandemic. DESIGN: Mixed-methods embedded study. (ClinicalTrials.gov: NCT04602520). SETTING: 3 acute care medical units in a tertiary care hospital from 16 March to 1 July 2020. PARTICIPANTS: 45 dying patients, 45 family members, and 45 clinicians. INTERVENTION: During the pandemic, clinicians continued an existing practice of collating personal information about dying patients and "what matters most," eliciting wishes, and implementing acts of compassion. MEASUREMENTS: Themes from semistructured clinician interviews that were summarized with representative quotations. RESULTS: Many barriers to end-of-life care arose because of infection control practices that mandated visiting restrictions and personal protective equipment, with attendant practical and psychological consequences. During hospitalization, family visits inside or outside the patient's room were possible for 36 patients (80.0%); 13 patients (28.9%) had virtual visits with a relative or friend. At the time of death, 20 patients (44.4%) had a family member at the bedside. Clinicians endeavored to prevent unmarked deaths by adopting advocacy roles to "fill the gap" of absent family and by initiating new and established ways to connect patients and relatives. LIMITATION: Absence of clinician symptom or wellness metrics; a single-center design. CONCLUSION: Clinicians expressed their humanity through several intentional practices to preserve personalized, compassionate end-of-life care for dying hospitalized patients during the SARS-CoV-2 pandemic. PRIMARY FUNDING SOURCE: Canadian Institutes of Health Research and Canadian Critical Care Trials Group Research Coordinator Fund.
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Atitude Frente a Morte , COVID-19/epidemiologia , Família/psicologia , Controle de Infecções/organização & administração , Recursos Humanos em Hospital/psicologia , Assistência Terminal/psicologia , Idoso , Empatia , Feminino , Humanos , Masculino , Pandemias , Relações Profissional-Família , SARS-CoV-2RESUMO
BACKGROUND: Individuals who accompany a loved one through medical assistance in dying (MAiD) have to live with the experience and the psychological, moral and social consequences of their involvement in the process long after the death occurs. AIM: To explore the legacy of a MAiD death for individuals who accompanied a loved one through the process. DESIGN: Using a qualitative descriptive approach we conducted semi-structured interviews to collect data from family members who had accompanied a loved one through MAiD. Data were analysed using conventional content analysis. SETTING/PARTICIPANTS: 16 family members of 14 patients who received MAiD at a Canadian hospital with an interdisciplinary MAiD programme. RESULTS: The main theme in the analysis is the opposing tensions experienced by individuals who accompany a loved one through a MAiD death, which we conceptualise as a double-edge experience. This double-edge experience is illustrated through four thematic opposing tensions: (1) support for patient autonomy and ambivalence about the MAiD choice, (2) gratitude for suffering relieved for loved one and grief for lost time with loved one, (3) time as a gift and time as a burden and (4) positive legacy and challenging bereavement experience. CONCLUSION: The nature of the MAiD experience for involved families is rooted in complexity, ambiguity and ambivalence and thus resists easy categorisation. Families would benefit from structured psychosocial and spiritual supports that acknowledge this complexity, along with MAiD-specific bereavement support following the death.