Assessing the quality of care for people dying of cancer in hospital: development of the QualDeath framework.

Objective High-quality end-of-life care involves addressing patients' physical, psychosocial, cultural and spiritual needs. Although the measurement of the quality of care associated with dying and death is an important component of health care, there is a lack of evidence-based, systematic processes to examine the quality of dying and death of patients in hospital settings. Our purpose was to develop a systematic appraisal framework (QualDeath) for reviewing the quality of dying and death for patients with advanced cancer. The objectives were to: (1) explore the evidence regarding existing tools and processes related to appraisal of end-of-life care; (2) examine existing practices related to appraisal of quality of dying and death in hospital settings; and (3) develop QualDeath with consideration of potential acceptability and feasibility factors. Methods A co-design multiple methods approach was used. For objective 1, a rapid literature review was undertaken; for objective 2 we carried out semi-structured interviews and focus groups with key stakeholders in four major teaching hospitals; and for objective 3 we interviewed key stakeholders and held workshops with the project team to reach consensus. Results We developed QualDeath, a framework to assist hospital administrators and clinicians to systematically and retrospectively review the quality of dying and death for patients expected to die from advanced cancer. It offers four levels of potential implementation for hospitals to select from and incorporates medical record review, multidisciplinary meetings, quality of end-of-life care surveys and bereavement interviews with family carers. Conclusions The QualDeath framework provides hospitals with recommendations to formalise processes to evaluate end-of-life care. Although QualDeath was underpinned by several research methods, further research is needed to rigorously explore its impact and test its feasibility.

Palliative Care Clinical Trials: Building Capability and Capacity.

Clinical trials are a key component of expanding the evidence base in palliative care. A key strategic objective of the Victorian Comprehensive Cancer Centre (VCCC), a multisite cancer center alliance, was to increase palliative care clinical trial expertise. The palliative care services within the VCCC alliance presented substantial trial development opportunities with large number of patients and established relationships, but few trial-active centers. Objectives: To establish a multi-site "Building Capability in Palliative Care Clinical Trials" program as a service development, and to assess the strategies, activities, and the outcomes resulting from this program. Methods: A series of strategies and activities were developed linked to the key program objectives of increasing the number of clinical sites and skilled clinicians conducting clinical trials, increasing the number of trials available and patients participating, broadening research opportunities in palliative care, and establishing the program sustainability. Results: In the two years of implementation, the program resulted in the establishment and conduct of several Phase 4 postmarketing pharmacovigilance studies, nine Phase 2 and 3 trials across five palliative care services, and a Phase 1 clinical trial. During the program, 150 patients were recruited to clinical trials, and 258 prospective pharmacovigilance monitoring cases were recorded. Five investigator-initiated trials were developed by clinical trial fellows and achieved competitive (n = 3) or commercial (n = 2) funding. Clinicians reported that undertaking clinical trials had increased attention to the evidence base of care provision, and increased service research activity more broadly. Long-term sustainability remains a challenge, particularly in the context of the COVID-19 pandemic. Conclusions: Clinical trials in palliative care services are feasible, acceptable, and result in increased attention to the evidence base of care. The strategies detailing the framework, activities, and outcomes have been collated to facilitate implementation of clinical trials in other sites and with other trial-naive disciplinary groups.

Palliative care and COVID-19 in the Australian context: a review of patients with COVID-19 referred to palliative care.

Objective Palliative care has played a key role in the response to the coronavirus disease 2019 (COVID-19) pandemic in Australia. This review of consecutive patients with COVID-19 referred to the palliative care consultancy service of a tertiary health service in Melbourne describes the palliative care experience with COVID-19 in Australia. Methods The experiences of 55 patients (median age 86 years; interquartile range (IQR) 81-90 years; 55% male; median Charlson comorbidity score 6 (IQR 5-8); 85% with Australia-modified Karnofsky Performance Status ≤50; 67% from residential aged care facilities) were reviewed to collect relevant data points. Results Most patients were referred for end-of-life care with symptoms including dyspnoea (80%) and agitation/delirium (60%). Continuous subcutaneous infusions were commenced in 71% of patients, with the most frequent medications being opioids and benzodiazepines in relatively small doses; 81% required ≤20 mg subcutaneous morphine equivalent and 64% required ≤10 mg subcutaneous midazolam over 24 h. Fifty patients (91%) died in hospital and the median time from palliative care referral to death was 3 days (IQR 1-5 days). Five patients were discharged back to residential aged care facilities. Overall, 80% of referrals were from the aged care team. Conclusion Our patients had similar demographics, symptoms, medication needs and outcomes to patients in similar settings overseas. We found the symptom management of patients with COVID-19 to be generally straightforward. However, the psychosocial needs of patients were predominant and contributed to complexity. This study highlights the need for well-integrated relationships between the palliative care consultancy service and the diverse range of key treating teams involved in the delivery of pandemic health care. What is known about the topic? Palliative care has played a key role in the response to the COVID-19 pandemic in Australia. There is limited research describing the Australian palliative care experience with the COVID-19 pandemic. What does this paper add? Patients with COVID-19 referred to a hospital-based palliative care consultancy service in Australia had similar demographic characteristics, symptoms, medication needs and outcomes to patients with COVID-19 referred to other palliative care services in the UK and the US. There were significant psychosocial issues affecting patients, families and staff in the context of the pandemic. What are the implications for practitioners? This study highlights the need for well-functioning working relationships between the palliative care consultancy service and other hospital teams that can be leveraged at a time of crisis, such as a pandemic, to provide optimal palliative care to patients.

Fact versus fiction: bridging contrasting medicinal cannabis information needs.

Regulatory changes now permit the availability and prescribing of medicinal cannabis in Australia. Public awareness and patient interest are high. Using a co-design approach involving cancer patients, carers and oncology and palliative care clinicians, two information resources were developed to provide readily available sources of important information for cancer patients and clinicians who are considering the use of medicinal cannabis. Focus groups and evaluation interviews revealed some areas of dissonance between consumers and clinicians concerning aspects of medicinal cannabis.

Who is asking about medicinal cannabis in palliative care?

Following legislative changes in the availability and prescribing of medicinal cannabis in Australia, we sought to understand prospectively the nature of information seeking and requests for medicinal cannabis in consultations between palliative care clinicians and patients with cancer. The 104 discussions were overwhelmingly initiated by patients and carers (93%) and were for a variety of symptoms, reflecting high levels of patient interest in the use of medicinal cannabis in cancer.

Health and death literacy and cultural diversity: insights from hospital-employed interpreters.

OBJECTIVES: 001225The aim of this qualitative study is to better understand, through the experiences and insights of hospital interpreters, how people from culturally and linguistic diverse (CALD) communities might respond to advance care planning (ACP) and end-of-life discussions. METHODS: Hospital interpreters from five Melbourne metropolitan health services were recruited for in-depth semi-structured interviews that explored the question, 'What can be learnt from hospital interpreters about cultural issues related to ACP and end-of-life decision-making?' Thirty-nine interpreters, representing 22 language groups, were interviewed. Analysis of the transcribed interviews used qualitative description. RESULTS: Thematic analysis identified three major themes: (1) moral difference; (2) health and death literacy; and (3) diversity within culture. CONCLUSION: A value-based approach to ACP is recommended as a way to capture the person's individual values and beliefs. Health and death literacy have been identified as areas that may be over-estimated; areas that can be addressed and improved, if recognised. Health and death literacy is a particular area that needs to be assessed and addressed as a pre-requisite to ACP discussions.

Prospective analysis of 30-day mortality following palliative chemotherapy at a tertiary cancer centre.

BACKGROUND: Thirty-day mortality after chemotherapy has been suggested as a marker of quality in oncology care. Retrospective audits worldwide have put this figure at between 8.1% and 43%, with previous retrospective Australian audits putting this figure at between 3.4% and 18%. To date, there has not been a prospective cohort study of patients receiving palliative intent chemotherapy at an Australian chemotherapy day unit. AIM: The aim of the study is to benchmark 30-day mortality for patients receiving palliative intent chemotherapy and identify associated factors at an Australian tertiary cancer centre. METHODS AND RESULTS: A prospective cohort study of all patients with a diagnosis of malignancy referred for palliative intent intravenous chemotherapy to the Sunshine Hospital Chemotherapy Day Unit over a 12-month period. The primary outcome was death within 30 days of receiving palliative intent chemotherapy. Other outcome measures included place of death and whether the patient received an outpatient palliative care referral. A total of 314 patients were enrolled in the study, and 98 patients died within the audit period. Of these, 21 (6.6%) died within 30 days of commencing palliative intent chemotherapy, and 60 (18.8%) died more than 30 days after receiving chemotherapy. Of the 34 patients that were referred, but did not start chemotherapy, 18 (52%) died. Multivariable logistic regression found that patients who received an outpatient palliative care referral and received chemotherapy were more likely to die within 30 days, although these did not reach statistical significance. CONCLUSION(S): This prospective cohort study demonstrated that 6.6% of patients died within 30 days of the administration of palliative intent chemotherapy; however, none of the prespecified factors were found to be statistically significantly associated with 30-day mortality.