Protocol for the development and multisite validation of the Quality of Dying and Death-Revised Global Version scale.

INTRODUCTION: Evaluating the quality of dying and death is essential to ensure high-quality end-of-life care. The Quality of Dying and Death (QODD) scale is the best-validated measure of the construct, but many items are not relevant to participants, particularly in low-resource settings. The aim of this multisite cross-sectional study is to develop and validate the QODD-Revised Global Version (QODD-RGV), to enhance ease of completion and relevance in higher-resource and lower-resource settings. METHODS AND ANALYSIS: This study will be a two-arm, multisite evaluation of the cultural relevance, reliability and validity of the QODD-RGV across four participating North American hospices and a palliative care site in Malawi, Africa. Bereaved caregivers and healthcare providers of patients who died at a participating North American hospice and bereaved caregivers of patients who died of cancer at the Malawian palliative care site will complete the QODD-RGV and validation measures. Cognitive interviews with subsets of North American and Malawian caregivers will assess the perceived relevance of the scale items. Psychometric evaluations will include internal consistency and convergent and concurrent validity. ETHICS AND DISSEMINATION: The North American arm received approval from the University Health Network Research Ethics Board (21-5143) and the University of North Carolina Institutional Review Board (21-1172). Ethics approval for the Malawi arm is being obtained from the University of North Carolina Institutional Review Board and the Malawian National Health Science Research Committee. Study findings will be disseminated through publication in peer-reviewed journals and conference presentations.

Identifying barriers and facilitators to palliative care integration in the management of hospitalized patients with COVID-19: A qualitative study.

BACKGROUND: Palliative care is well suited to support patients hospitalized with COVID-19, but integration into care has been variable and generally poor. AIM: To understand barriers and facilitators of palliative care integration for hospitalized patients with COVID-19. METHODS: Internists, Intensivists and palliative care physicians completed semi-structured interviews about their experiences providing care to patients with COVID-19. Results were analysed using thematic analysis. RESULTS: Twenty-three physicians (13 specialist palliative care, five intensivists, five general internists) were interviewed; mean ± SD age was 42 ± 11 years and 61% were female. Six thematic categories were described including: patient and family factors, palliative care knowledge, primary provider factors, COVID-19 specific factors, palliative care service factors, and leadership and culture factors. Patient and family factors included patient prognosis, characteristics that implied prognosis (i.e., age, etc.), and goals of care. Palliative care knowledge included confidence in primary palliative care skills, misperception that COVID-19 is not a 'palliative diagnosis', and the need to choose quantity or quality of life in COVID-19 management. Primary provider factors included available time, attitude, and reimbursement. COVID-19 specific factors were COVID-19 as an impetus to act, uncertain illness trajectory, treatments and outcomes, and infection control measures. Palliative care service factors were accessibility, adaptability, and previous successful relationships. Leadership and culture factors included government-mandated support, presence at COVID planning tables, and institutional and unit culture. CONCLUSION: The study findings highlight the need for leadership support for formal integrated models of palliative care for patients with COVID-19, a palliative care role in pandemic planning, and educational initiatives with primary palliative care providers.

Scalable Model for Delivery of Inpatient Palliative Care During a Pandemic.

BACKGROUND: During the COVID-19 pandemic, hospitals worldwide have reported large volumes of patients with refractory symptoms and a large number of deaths attributable to COVID-19. This has led to an increase in the demand for palliative care beyond what can be provided by most existing programs. We developed a scalable model to enable continued provision of high-quality palliative care during a pandemic for hospitals without a palliative care unit or existing dedicated palliative care beds. METHODS: A COVID-19 consultation service working group (CWG) was convened with stakeholders from palliative care, emergency medicine, critical care, and general internal medicine. The CWG connected with local palliative care teams to ensure a coordinated response, and developed a model to ensure high-quality palliative care provision. RESULTS: Our 3-step scalable model included: (1) consultant model enhanced by virtual care; (2) embedded model; and (3) cohorted end-of-life unit for COVID-19 positive patients. This approach was enabled through tools and resources to ensure specialist palliative care capacity and rapid upskilling of all clinicians to deliver basic palliative care. Enabling tools and resources included a triage tool for in-person versus virtual care, new medication order sets and guidelines to facilitate prescribing for common symptoms, and lead advance care planning and goals of care discussions. A redeployment plan of generalist physicians and psychiatrists was created to ensure seamless provision of serious illness care. CONCLUSION: This 3-step, scalable approach enables rapid upscaling of palliative care in collaboration with generalist physicians, and may be adapted for future pandemics or natural disasters.

Palliative care provision at a tertiary cancer center during a global pandemic.

COVID-19 was first reported in Wuhan, China, in December 2019; it rapidly spread around the world and was declared a global pandemic by the World Health Organization in March 2020. The palliative care program at the Princess Margaret Cancer Centre, Toronto, Canada, provides comprehensive care to patients with advanced cancer and their families, through services including an acute palliative care unit, an inpatient consultation service, and an ambulatory palliative care clinic. In the face of a global pandemic, palliative care teams are uniquely placed to support patients with cancer who also have COVID-19. This may include managing severe symptoms such as dyspnea and agitation, as well as guiding advance care planning and goals of care conversations. In tandem, there is a need for palliative care teams to continue to provide care to patients with advanced cancer who are COVID-negative but who are at higher risk of infection and adverse outcomes related to COVID-19. This paper highlights the unique challenges faced by a palliative care team in terms of scaling up services in response to a global pandemic while simultaneously providing ongoing support to their patients with advanced cancer at a tertiary cancer center.

Supportive Cardiology: Moving Palliative Care Upstream for Patients Living with Advanced Heart Failure.

Heart failure (HF) affects ∼600,000 Canadians and is a chronic, life-limiting illness marked by exacerbations of distressing symptoms requiring acute medical management, typically sought in Canada's emergency departments. HF often has an unpredictable illness trajectory and is a chronic terminal illness with a poor prognosis. Patients living with advanced HF have difficulty in accessing palliative care (PC) supports, which can result in unnecessary suffering as their HF progresses and they near end of life (EOL). This is, in part, due to a lack of research, helping clinicians to identify patients who are approaching EOL. In addition, the unpredictable nature of illness progression often precludes access to most EOL resources in our current prognosis-dependent healthcare system. PC teams focus on optimizing quality of life through symptom management and ensure that care plans are congruent with patient and family preferences. A PC team was embedded into our institution's existing HF team. Findings show that integration of an embedded model of PC delivery for patients living with advanced HF led to overwhelming positive patient and family feedback while providing timely advance care planning discussions that may be associated with beneficial patient, family, and system outcomes. These outcomes can be used to inform public policy and speak to a cost-effective patient and family-centered approach for providing care to individuals and families living with advanced HF.

Integrating palliative care into routine care of patients with heart failure: models for clinical collaboration.

Heart failure (HF) affects nearly 5.7 million Americans and is described as a chronic incurable illness carrying a poor prognosis. Patients living with HF experience significant symptoms including dyspnea, pain, anxiety, fatigue, and depression. As the illness advances into later stages, symptoms become more intense and refractory to standard treatments, leading to recurrent acute-care utilization and contributing to poor quality of life. Advanced HF symptoms have been described to be as burdensome, if not more than, those in cancer populations. Yet access to and provision of palliative care (PC) for this population has been described as suboptimal. The Institute of Medicine recently called for better access to PC for seriously ill patients. Despite guidelines recommending the inclusion of PC into the multidisciplinary HF care team, there is little data offering guidance on how to best operationalize PC skills in caring for this population. This paper describes the emerging literature describing models of PC integration for HF patients and aims to identify key attributes of these care models that may help guide future multi-site clinical trials to define best practices for the successful delivery of PC for patients living with advanced HF.

A multidisciplinary approach in providing transitional care for patients with advanced cancer.

Patients living with a diagnosis of an advanced life-limiting malignancy often have concerns regarding symptom burden, physical and psychosocial impact on life, and questions surrounding end-of-life processes. Due to the complex care needs of patients with advanced life-limiting illness it is our experience that both a multidisciplinary and interdisciplinary approach to care can optimize the patient and family illness experience for this vulnerable population. Progressive metastatic illness often necessitates care in multiple settings including an ambulatory clinic, inpatient hospital ward, at home, and at an in-patient hospice or palliative care unit. Palliative care teams are typically composed of clinicians from various disciplines who work in multiple settings and can act as a link between community, ambulatory and in-patient care-settings. The team often includes physicians, advance practice nurses [nurse practitioners and clinical nurse specialists (CNSs)], nurses, social workers, chaplains, and other allied health clinicians. The result of this team approach, in collaboration with oncology providers, makes palliative care an ideal model for providing care through the many transitions that are inherent to patients living with advanced malignancy.

Detecting and addressing adolescent issues and concerns: evaluating the efficacy of a primary care previsit questionnaire.

OBJECTIVE: To assess the efficacy of a previsit questionnaire (PVQ), implemented without formal training, that was designed to screen for biomedical and psychosocial health issues and concerns among adolescent patients in a hospital-based primary care clinic, and to examine the subsequent action taken for health issues and concerns identified with the PVQ. DESIGN: Retrospective review of adolescent medical charts, using a pre-post design. SETTING: An outpatient primary care clinic located in an urban teaching hospital in Montreal, Que. PARTICIPANTS: A total of 210 adolescent patients aged 13 to 19 who visited the clinic between 2000 and 2004. MAIN OUTCOME MEASURES: The type (medical vs psychosocial) and number of issues detected and actions taken by physicians in one-to-one consultations with adolescent patients 2 years before (2000-2002) and 2 years after (2002-2004) PVQ implementation, as noted in the patients' medical charts. RESULTS: In total, 105 charts were reviewed for each group. An increase in the number of psychosocial issues was detected following the introduction of the PVQ. An increase in the frequency of action taken for psychosocial concerns and a decrease in the frequency of medical action taken by physicians were found after PVQ implementation. More notations related to psychosocial concerns were also found in the adolescents' charts after introduction of the PVQ. CONCLUSION: A PVQ is an effective strategy to improve adolescent screening for psychosocial issues and concerns. Implementing such a questionnaire requires no training and can therefore be easily incorporated into clinical practice.