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Context Hospital-to-home transitions, particularly at the end of life, can be challenging for patients and their family caregivers. Therefore, there is a need to better understand gaps in expectations and experiences of these transitions. Theory can inform the creation of an intervention aimed at improving the hospital-to-home transition. Objectives 1) Explore patients’ and caregivers’ expectations and subsequent experiences of the hospital-to-home transition while receiving palliative care, and 2) build a substantive grounded theory to enhance the understanding of hospital-to-home transitions from the patient and caregiver perspective. Methods Longitudinal, prospective qualitative study with semistructured interviews at hospital discharge and three to four weeks after discharge home. We recruited adults receiving inpatient palliative care who were being discharged to home-based palliative care, and their family caregivers from two academic health centers in Toronto, Canada. Thirty-nine participants: 18 patients, 7 caregivers, and 7 patient-caregiver dyads participated. We conducted 52 interviews. We conducted a grounded theory qualitative study. Results Through examining the expectations and subsequent experiences of the transition, and exploring the gaps between them, we identified various transitions needs: health and well-being needs, and practical needs (i.e., transportation, setting up the home for care, care providers in the home). Several enablers and disablers modified the likelihood of needs being met (e.g., caregiver role, education on symptom management, uncertainty, financial resources). Conclusion Our substantive grounded theory highlighted potentially measurable constructs that can be further tested. Future interventions should target the enablers/disablers to ensure health and well-being and practical needs are met in the transition.

Context Continuity of care is important at improving the patient experience and reducing unnecessary hospitalizations when transitioning across care settings, especially at the end of life. Objective To explore patient and caregiver understanding and valuation of “continuity of care” while transitioning from an in-hospital to a home-based palliative care team. Methods Longitudinal qualitative design using semistructured interviews conducted with patients and their caregivers before and after transitioning from hospital to palliative care at home. Interviews were audio-recorded and transcribed verbatim. Data were analyzed using thematic analysis within a postpositivist framework. Thirty-nine participants (18 patients, seven caregivers, and seven patient-caregiver dyads) were recruited from two acute care hospitals, wherein they received care from an inpatient palliative care consultation team and transitioned to home-based palliative care. Results Patients had a mean age of 68 years, 60% were female and 60% had a diagnosis of cancer. Caregivers had a mean age of 62 years and 50% were female. Participants perceived continuity of care to occur in three ways, depending on which stage they were at in their hospital-to-home transition. In hospital, continuity of care was experienced, as consistency of information exchanged between providers. During the transition from hospital to home, continuity of care was experienced as consistency of treatments. When receiving home-based palliative care, continuity of care was experienced as having consistent providers. Conclusion Patients' and their caregivers’ valuation of continuity of care was dependent on their stage of the hospital-to-home transition. Optimizing continuity of care requires an integrated network of providers with reliable information transfer and communication.

Background Medical assistance in dying (MAiD) is available in Canada for patients with grievous and irremediable medical conditions causing unbearable physical or mental suffering. It is not known how the ‘grievous and irremediable suffering’ criteria is being interpreted and documented by physicians. Methods Retrospective chart review of MAiD assessments from patients who submitted written MAiD requests to The Ottawa Hospital from June 1, 2016 to September 18, 2018. We used inductive thematic analysis to determine themes and subthemes. Results Our sample included 52 patients with a mean age of 70.5 years (SD 14), 24/52 (46%) were male. We identified 5 themes: 1) patient's context and history (e.g., past experiences, lack of disease modifying treatments), 2) physical symptoms (e.g., chronic pain, fatigue), 3) psychosocial symptoms (e.g., social isolation, or inability to communicate), 4) sense of control and 5) irreversibility. These themes were used to create a framework that describes the suffering of patients requesting MAiD. Patients who request MAiD describe how their disease causes suffering through physical symptoms, psychological symptoms and loss of control that is irreversible. These domains of suffering interact with their personal history and context leading to a reality that is unacceptable and irreversible. Conclusion MAiD assessors’ working definition of ‘grievous and irremediable suffering’ as documented in their assessments is consistent with the body of literature on this topic. MAiD assessments could be enhanced with more information about existential aspects of suffering and the impact of illness on meaningful life roles.

Context Although critical for improving patient outcomes, palliative care quality indicators are not yet widely used. Better understanding of facilitators and barriers to palliative care quality measurement and improvement might improve their use and program quality. Objectives Development of a survey tool to assess palliative care team perspectives on facilitators and barriers to quality measurement and improvement in palliative care programs. Methods We used the adapted Consolidated Framework for Implementation Research to define domains and constructs to select instruments. We assembled a draft survey and assessed content validity through pilot testing and cognitive interviews with experts and frontline practitioners for key items. We analyzed responses using a constant comparative process to assess survey item issues and potential solutions. We developed a final survey using these results. Results The survey includes five published instruments and two additional item sets. Domains include organizational characteristics, individual and team characteristics, intervention characteristics, and process of implementation. Survey modules include Quality Improvement in Palliative Care, Implementing Quality Improvement in the Palliative Care Program, Teamwork and Communication, Measuring the Quality of Palliative Care, and Palliative Care Quality in Your Program. Key refinements from cognitive interviews included item wording on palliative care team members, programs, and quality issues. Conclusion This novel, adaptable instrument assesses palliative care team perspectives on barriers and facilitators for quality measurement and improvement in palliative care programs. Next steps include evaluation of the survey's construct validity and how survey results correlate with findings from program quality initiatives.

Context Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. Objectives The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. Methods We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. Results We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. Conclusion Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.

Context Although the literature on transitions from hospital to the community is extensive, little is known about this experience within the context of palliative care (PC). Objective We conducted a systematic review to investigate the impact of receiving palliative care in hospital on the transition from hospital to the community. Methods We systematically searched MEDLINE, Embase, ProQuest, and CINAHL from 1995 until April 10, 2018, and extracted relevant references. Eligible articles were published in English, included adult patients receiving PC as inpatients, and explored transitions from hospital to the community. Results A total of 1514 studies were identified and eight met inclusion criteria. Studies were published recently (>2012; n = 7, 88%). Specialist PC interventions were delivered by multidisciplinary care teams as part of inpatient PC triggers, discharge planning programs, and transitional care programs. Common outcomes reported with significant findings consisted of length of stay (n = 5), discharge support (n = 5), and hospital readmissions (n = 6) for those who received inpatient PC. Most studies were at high risk of bias. Conclusion Heterogeneity of study designs, outcomes, findings, and poor methodological quality renders it challenging to draw conclusions regarding PC's impact on the transition from hospital to home. Further research should use standardized outcomes with randomized controlled trial and/or propensity matched cohort designs.

Context Medical assistance in dying (MAiD) allows a practitioner to administer or prescribe medication for the purpose of ending a patient's life. In 2016, Canada was the latest country, following several European countries and American states, to legalize physician-assisted death. Although some studies report on physicians' attitudes toward MAiD or describe patient characteristics, there are few studies that explore the professional challenges faced by physicians who provide MAiD. Objectives The objective of the study was to explore the professional challenges faced by Canadian physicians who provide MAiD. Methods Sixteen physicians from across Canada who provide MAiD completed in-depth, semistructured telephone interviews. An inductive thematic analysis approach guided data collection and the iterative, interpretive analysis of interview transcripts. Three members of the research team systematically co-coded interview transcripts, and the emerging themes were developed with the broader research team. NVivo was used to manage the coded data. Results Participants described three challenges associated with providing MAiD: 1) their relationships with other MAiD providers were enhanced and relationships with objecting colleagues were sometimes strained; 2) they received inadequate financial compensation for time, and 3) they experienced increased workload, resulting in sacrifices to personal time. Although these providers did not intend to stop providing MAiD at the time of the interview, they indicated their concerns about whether they would be able to sustain this service over time. Conclusion Physicians described relationship, financial, and workload challenges to providing MAiD. We provide several recommendations to address these challenges and help ensure the sustainability of MAiD in countries that provide this service.