Advance care plans for vulnerable and disadvantaged adults: systematic review and narrative synthesis.

BACKGROUND: Evidence suggests that there is a gap in advance care planning (ACP) completion between vulnerable and disadvantaged populations compared with the general population. This review seeks to identify tools, guidelines or frameworks that have been used to support ACP interventions with vulnerable and disadvantaged adult populations as well as their experiences and outcomes with them. The findings will inform practice in ACP programmes. METHODS: A systematic search of six databases from 1 January 2010 to 30 March 2022 was conducted to identify original peer-reviewed research that used ACP interventions via tools, guidelines or frameworks with vulnerable and disadvantaged adult populations and reported qualitative findings. A narrative synthesis was conducted. RESULTS: Eighteen studies met the inclusion criteria. Relatives, caregivers or substitute decision-makers were included in eight studies. SETTINGS: hospital outpatient clinics (N=7), community settings (N=7), nursing homes (N=2), prison (N=1) and hospital (N=1). A variety of ACP tools, guidelines or frameworks were identified; however, the facilitator's skills and approach in delivering the intervention appeared to be as important as the intervention itself. Participants indicated mixed experiences, some positive, some negative and four themes emerged: uncertainty, trust, culture and decision-making behaviour. The most common descriptors relating to these themes were prognosis uncertainty, poor end-of-life communication and the importance of building trust. CONCLUSION: The findings indicate that ACP communication could be improved. ACP conversations should incorporate a holistic and personalised approach to optimise efficacy. Facilitators should be equipped with the necessary skills, tools and information needed to assist ACP decision-making.

Psycho-Existential Symptom Assessment Scale (PeSAS) Screening in Palliative Care.

CONTEXT: Psycho-existential symptoms are common yet often missed or neglected in palliative care. Screening can be an effective way to recognize and respond to this need. OBJECTIVES: We aimed to implement routine use of the Psycho-existential Symptom Assessment Scale (PeSAS) as a screening tool in Australian palliative care services and discern the symptom prevalence identified. METHODS: In a multi-site rolling design, we established implementation site committees and embarked on experiential workshops to train clinicians in the tool's efficient use. Patient symptom prevalence data were collected to compare uptake across sites. Descriptive statistics were applied. RESULTS: Over one year, we trained 216 clinicians across six palliative care services in the use of the PeSAS as a screening tool and collected data from 1405 patients. Clinicians reported significant growth in their sense of efficacy in assessing psycho-existential wellness. Services using electronic records implemented most easily. Psycho-existential symptoms with clinically significant prevalence (scores ≥ 4/10) included anxiety 41.1%, discouragement 37.6%, hopelessness 35.8%, pointlessness 26.9%, depression 30.3%, and the wish to die 17%. The precision of measurement within 3% was found for severe ratings (score ≥ 8/10) including anxiety 10.6%, depression 10.2%, the wish to die 7.6%, and confusion 3.6%. CONCLUSION: Clinicians can be trained to screen with the Psycho-existential Symptom Assessment Scale, which serves as a valuable measure to better recognize symptoms of psycho-existential distress among palliative care patients. Implementation barriers included the prior ethos of the service, confidence in talking about these themes, electronic data entry, and perceived time pressures.

Schwartz Rounds for Staff in an Australian Tertiary Hospital: Protocol for a Pilot Uncontrolled Trial.

BACKGROUND: Schwartz Rounds are a unique, organization-wide interdisciplinary intervention aimed at enhancing staff well-being, compassionate care, teamwork, and organizational culture in health care settings. They provide a safe space wherein both clinical and nonclinical health staff can connect and share their experiences about the social and emotional aspects of health care. OBJECTIVE: Although Schwartz Rounds have been assessed and widely implemented in the United States and United Kingdom, they are yet to be formally evaluated in Australian health care settings. The purpose of this study is to evaluate the feasibility and impact of Schwartz Rounds on staff well-being, compassionate care, and organizational culture, in a tertiary metropolitan hospital in Brisbane, Australia. METHODS: This mixed methods repeated measures pilot study will recruit 24 participants in 2 groups from 2 departments, the intensive care unit and the gastroenterology department. Participants from each group will take part in 3 unit-based Schwartz Rounds. Primary outcomes will include the study and intervention feasibility measures, while secondary outcomes will include scores on the Maslach Burnout Inventory-Human Services Survey, the Schwartz Centre Compassionate Care Scale, and the Culture of Care Barometer. Primary and secondary outcomes will be collected at baseline, after the Rounds, and 3-month follow-up. Two focus groups will be held approximately 2 months after completion of the Schwartz Rounds. Descriptive statistics, paired t tests, chi-square tests, and analysis of variance will be used to compare quantitative data across time points and groups. Qualitative data from focus groups and free-text survey questions will be analyzed using an inductive thematic analysis approach. RESULTS: The study was approved by the Mater Hospital Human Research Ethics Committee (reference number: HREC/MML/71868) and recruitment commenced in July 2021; study completion is anticipated by May 2022. CONCLUSIONS: The study will contribute to the assessment of feasibility and preliminary efficacy of the Schwartz Rounds in a tertiary Australian hospital during the COVID-19 pandemic. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621001473853; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382769&isReview=true. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/35083.

An Ethical Framework for Visitation of Inpatients Receiving Palliative Care in the COVID-19 Context.

Human connection is universally important, particularly in the context of serious illness and at the end of life. The presence of close family and friends has many benefits when death is close. Hospital visitation restrictions during the Coronavirus (COVID-19) pandemic therefore warrant careful consideration to ensure equity, proportionality, and the minimization of harm. The Australian and New Zealand Society for Palliative Medicine COVID-19 Special Interest Group utilized the relevant ethical and public health principles, together with the existing disease outbreak literature and evolving COVID-19 knowledge, to generate a practical framework of visiting restrictions for inpatients receiving palliative and end-of-life care. Expert advice from an Infectious Diseases physician ensured relevance to community transmission dynamics. Three graded levels of visitor restrictions for inpatient settings are proposed, defining an appropriate level of minimum access. These depend upon the level of community transmission of COVID-19, the demand on health services, the potential COVID-19 status of the patient and visitors, and the imminence of the patient's death. This framework represents a cohesive, considered, proportionate, and ethically robust approach to improve equity and consistency for inpatients receiving palliative care during the COVID-19 pandemic and may serve as a template for future disease outbreaks.

Symptom trajectories for palliative care inpatients with and without hyperactive delirium in the last week of life.

AIMS: Hyperactive delirium (HD) is a common and distressing symptom among palliative care patients. This study aimed to describe the characteristics of HD and associated symptoms among palliative care inpatients and evaluate relationships between HD development and symptom trajectories in this population. DESIGN: A retrospective study was conducted. METHODS: A retrospective review of medical records was conducted for all patients who died in a large Australian specialist palliative care unit between 1 January and 31 December 2019. Patients were assessed daily using the Symptoms Assessment Scale (SAS) and Palliative Care Problem Severity Scale (PCPSS). Multilevel models were used to estimate the differences in symptoms trajectories in the last 7 days of life between the two groups. RESULTS: Of the 501 included patients, 64.5% (323) had an episode of HD. For 30% (95) of patients, HD occurred prior to admission. Compared with patients without HD, those with HD had significantly higher odds ratios (ORs) for four of the seven SAS symptoms (sleep problems, appetite, fatigue and pain; OR range: 1.94-4.48, p < .05), and all four PCPSS items (OR range: 2.00-3.00, p < .05) in the last week of life. CONCLUSIONS: Palliative care inpatients commonly experience HD in their last week of life. There are higher levels of symptom distress, complexity, psychological concerns and family/carer concerns among patients with HD compared with those without HD. IMPACT: The high prevalence of HD, and its association with higher levels of symptom distress, highlights the importance of routine screening and optimal management for HD among palliative care patients. Given the widely recognized challenges facing palliative care professionals in assessment and management of delirium, provision of relevant training among these professionals is recommended.

Refractory hyperactive delirium in the dying: pharmacological management.

BACKGROUND: Delirium is a prevalent clinical presentation in advanced illness. The hyperactive phase can cause severe symptoms at the end of life. There is no published study of the pharmacological management of this symptom in Australian palliative medicine practice. OBJECTIVES: To describe the pharmacological management of hyperactive delirium at the end of life in an Australian inpatient palliative care setting. METHODS: Retrospective audit of deaths from October 2019 where a medication of interest (MOI) was used following admission to the palliative care unit (PCU) of Eastern Health. The clinical notes of those included were reviewed to further describe the clinical details surrounding the use of the MOI. RESULTS: Forty patients were included. Midazolam was the most common medication used (57.5%). The most common dual agent combination was midazolam plus levomepromazine. CONCLUSIONS: This audit is the first description of pharmacological management of severe hyperactive delirium at the end of life requiring sedation in an Australian PCU.

Care of older people and people requiring palliative care with COVID-19: guidance from the Australian National COVID-19 Clinical Evidence Taskforce.

INTRODUCTION: Older people living with frailty and/or cognitive impairment who have coronavirus disease 2019 (COVID-19) experience higher rates of critical illness. There are also people who become critically ill with COVID-19 for whom a decision is made to take a palliative approach to their care. The need for clinical guidance in these two populations resulted in the formation of the Care of Older People and Palliative Care Panel of the National COVID-19 Clinical Evidence Taskforce in June 2020. This specialist panel consists of nursing, medical, pharmacy and allied health experts in geriatrics and palliative care from across Australia. MAIN RECOMMENDATIONS: The panel was tasked with developing two clinical flow charts for the management of people with COVID-19 who are i) older and living with frailty and/or cognitive impairment, and ii) receiving palliative care for COVID-19 or other underlying illnesses. The flow charts focus on goals of care, communication, medication management, escalation of care, active disease-directed care, and managing symptoms such as delirium, anxiety, agitation, breathlessness or cough. The Taskforce also developed living guideline recommendations for the care of adults with COVID-19, including a commentary to discuss special considerations when caring for older people and those requiring palliative care. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINE: The practice points in the flow charts emphasise quality clinical care, with a focus on addressing the most important challenges when caring for older individuals and people with COVID-19 requiring palliative care. The adult recommendations contain additional considerations for the care of older people and those requiring palliative care.

How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers.

BACKGROUND: More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment. AIM: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers. DESIGN: Qualitative thematic analysis of semi-structured interviews. PARTICIPANTS: Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto (n = 22) were interviewed in person or by phone. Participants included physicians (n = 22), nurses (n = 15), social workers (n = 7), and allied health professionals (n = 4). RESULTS: Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions. CONCLUSION: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care.

Complex conversations in a healthcare setting: experiences from an interprofessional workshop on clinician-patient communication skills.

BACKGROUND: Communication is pivotal to the effective care and treatment of patients in our health care systems. Despite this understanding, clinicians are not sufficiently educated to confidently conduct complex discussions with patients. Communication skills workshops have been shown to be an effective educational format to improve clinician skills. However, despite the increasing interprofessional focus within modern medicine, there have been few studies looking at interprofessional communication workshops. METHODS: A qualitative study was conducted to assess how an interprofessional communication skills workshop affected the communication skills of clinicians at a tertiary health service. Pre- and post-workshop surveys were undertaken by participants, followed by focus group interviews eight-weeks post workshop. RESULTS: Clinicians were able to incorporate learnt communication skills into their daily practice. This was associated with an improvement in confidence of clinicians in having complex discussions, in addition to a reduction in the burden of having complex discussions. Participants responded positively to the interdisciplinary format, reporting benefits from the learning experience that translated into daily practice. CONCLUSION: Clinicians' communication skills in conducting complex clinician-patient conversations can be improved by participation in interprofessional communication skills workshops. We identified that the interprofessional aspect of the workshops not only improved interprofessional understanding and relationships, but also developed increased self-awareness during complex discussions, and reduced the sense of burden felt by clinicians.

Cancer patients' perceptions of palliative care.

PURPOSE: Despite clear benefits of early integration of palliative care (PC) and oncology, concerns remain about negative perceptions of PC. Our aim was to explore current knowledge and perceptions of PC in cancer patients. METHODS: We conducted a prospective, cross-sectional survey. A 16-item questionnaire was distributed to all cancer patients (N = 103) upon admission to the oncology ward of an Australian tertiary academic hospital. Chi-squared test was used to examine for significant factors related to patients' perceptions. RESULTS: Ninety-six patients (93%) completed the questionnaire; 76% had metastatic cancer. We explored the following domains:Experience and knowledge: 76% had heard of PC; 21% had received PC. Self-rated PC knowledge was varied. Forty-five percent believed that PC was only associated with EOLC; those more likely to disagree had received PC services (p = 0.039).Integration of PC and oncology: Majority believed that they could receive oncology care (86%) and anti-cancer treatment (81%) whilst receiving PC. Those who had heard of PC and with better self-rated knowledge were more likely to believe that they could receive concurrent anti-cancer treatment (p = 0.005, p = 0.045, respectively).Feelings: 77% felt comforted with PC involvement; this was significantly associated with older age (p = 0.047) and understanding that oncology (p < 0.005) and anti-cancer treatment (p = 0.013) could continue. However, some felt frightened (40%) and hopeless (29%) about referral to PC. Fifty percent felt more comfortable with referral to 'supportive care' services (versus PC). CONCLUSIONS: Our survey demonstrates reasonable understanding and relatively positive feelings about PC, associated with experience and knowledge. Nonetheless, there is ongoing need for better patient and public education about PC.

Perspectives of cancer treatment providers regarding voluntary assisted dying in Victoria.

A survey of cancer treatment providers at our institution exploring their perspectives regarding voluntary assisted dying in Victoria and the imminent legislation showed that while almost all were aware of the Bill (92%), reported knowledge and understanding of it was much less (38%). As many clinicians supported the Bill as opposed it (28%); 44% were uncertain of their stance. Most were unwilling to directly provide voluntary assisted dying; if they did, would refer to palliative care services for ongoing support.

Percutaneous Sacroplasty for Painful Bone Metastases: A Case Report.

INTRODUCTION: The occurrence of bone metastases is common in patients with advanced cancer. The literature supports percutaneous vertebroplasty and kyphoplasty as minimally invasive procedures to relieve pain and improve quality of life for selected patients with disabling pain from pathological vertebral fractures secondary to bone metastases. CASE: We describe a case of a 71-year-old patient with castrate-resistant metastatic prostate cancer who underwent sacroplasty for painful sacral metastases. The patient had previously been treated with maximally tolerated analgesics and anticancer therapies including systemic anticancer treatments and local radiotherapy. After sacroplasty, he experienced significant pain reduction and improvement in mobility and function. CONCLUSION: This case and recent literature demonstrate positive outcomes of sacroplasty in terms of pain reduction and improved mobility. Further research is warranted to establish the role of such minimally invasive percutaneous procedures for pain management in cancer patients.

Hip fractures and dementia: clinical decisions for the future.

Severe dementia is a life-limiting condition; hip fractures are more common in patients who have dementia. This study outlines the case of a 92-year-old female with severe dementia who sustained a hip fracture. Despite having a terminal diagnosis (severe dementia and hip fracture) and poor premorbid quality of life, she had a life-prolonging surgery. The report outlines issues around treatment options in such circumstances, informed consent and substitute decision-making. The authors propose a 'goals of care' approach to manage patients in whom the best treatment is unclear, during their attendance to the emergency department. It is suggested that utilization of such a model may help with substitute decision-making and true informed consent.

Insights into hospitalisation of advanced cancer patients: a study of medical records.

The aim of this study was to explore reasons for the hospitalisation and place of death outcomes of terminal cancer patients. The methodology involved a qualitative content analysis of medical records pertaining to the last 3 months of life of 39 patients with one of four malignancies: prostate, breast, lung, or haematological. The results presentation is organised around three themes: decision hierarchy in health care, meanings of 'home', and late recognition of dying. Based on the detailed findings, this paper suggests that important insights into the broader goals of advanced cancer patients are offered by allied health staff, and that more effective use of the multidisciplinary team may support endeavours to achieve more home deaths for cancer patients who want this outcome. The analysis also provides new insights into the meaning of 'home' in interactions between advanced cancer patients and health professionals. The wish for 'home' appears bound up with other patient goals and the implications of this are discussed.

Diagnosis matters: the differing clinical trajectories for terminal prostate, lung and haematological cancers.

BACKGROUND: There is a belief that end-of-life care issues are similar for all cancer patients, irrespective of their primary cancer diagnosis. This exploratory study into the terminal trajectories of three common cancers challenges this belief. METHODS: A retrospective, systematic, and mixed qualitative and quantitative medical record review of 30 deceased patients in 2010 was performed between two Victorian networks. The last 90 days of life were examined in three equally distributed cancer groups - prostate, lung and haematological. RESULTS: The trajectories for the three malignancies differed in temporal, symptomatic, supportive and interventional characteristics. DISCUSSION: Our study suggests diagnosis does indeed matter. The varying symptomatology for the different cancers markedly influenced clinical management, utilisation of palliative care services and the site of care and site of death. Our study suggests potential areas for better collaboration between general practitioners, community and specialist palliative care services. Emerging work supports our findings, but this area warrants further research.

CYP2B6*6 allele and age substantially reduce steady-state ketamine clearance in chronic pain patients: impact on adverse effects.

AIMS: Ketamine analgesia is limited by low intrinsic efficacy compounded by large interindividual variability in drug responses, possibly due to the heterogeneity in drug concentration. The CYP2B6*6 allele is associated with substantially reduced ketamine metabolism in vitro and, therefore, may affect ketamine clearance. Our aims were to examine the impact of the CYP2B6*6 allele on ketamine plasma clearance and on adverse effects in chronic pain patients. METHODS: CYP2B6 genotypes were identified in 49 chronic pain patients who received 24 h continuous subcutaneous infusions of ketamine. Steady-state plasma concentrations of ketamine (Css,k ) and norketamine (Css,nk ) were determined using HPLC. RESULTS: The median plasma clearance of ketamine after 100 mg 24 h(-1) dose was significantly lower in patients with the CYP2B6*6/*6 (21.6 l h(-1) ) and CYP2B6*1/*6 (40.6 l h(-1) ) genotypes compared with patients with the CYP2B6*1/*1 genotype (68.1 l h(-1) , P < 0.001). The ketamine : norketamine plasma metabolic ratio was significantly higher in patients with the CYP2B6*6/*6 genotype than in those with the CYP2B6*1/*6 and the CYP2B6*1/*1 genotypes (P < 0.001). Patients who experienced adverse effects had lower plasma clearance (45.6 l h(-1) ) than those who did not (52.6 l h(-1) , P = 0.04). The CYP2B6*6 genotype and age, and their combined impact explained 40%, 30% and 60% of the variation in Css,k , respectively. Similar results were observed after higher doses. CONCLUSIONS: The CYP2B6*6 allele is associated with a substantial decrease in steady-state ketamine plasma clearance in chronic pain patients. The decreased clearance and resultant higher plasma concentrations may be associated with a higher incidence of ketamine adverse effects.