Examining the Case for Palliative Care in Patients with Systemic Sclerosis.

Systemic sclerosis is a complex, multi-organ disease which causes substantial and progressive symptoms and impairs quality of life. International guidelines recommend early, integrated palliative care for patients with advanced cardiopulmonary disease such as heart failure, and interstitial lung disease, as this care can improve patient, caregiver and health care outcomes. In this article, we examine the potential need and role for palliative care in systemic sclerosis. We propose early, integrated palliative care could improve symptom control and quality of life, and recommend a research agenda for palliative care in systemic sclerosis, to address the lack of evidence in this area.

Therapeutic misunderstandings in modern research.

Clinical trials play a crucial role in generating evidence about healthcare interventions and improving outcomes for current and future patients. For individual trial participants, however, there are inevitably trade-offs involved in clinical trial participation, given that trials have traditionally been designed to benefit future patient populations rather than to offer personalised care. Failure to understand the distinction between research and clinical care and the likelihood of benefit from participation in clinical trials has been termed the 'therapeutic misconception'. The evolution of the clinical trials landscape, including greater integration of clinical trials into healthcare and development of novel trial methodologies, may reinforce the significance of the therapeutic misconception and other forms of misunderstanding while at the same time (paradoxically) challenging its salience. Using cancer clinical trials as an exemplar, we describe how methodological changes in early- and late-phase clinical trial designs, as well as changes in the design and delivery of healthcare, impact upon the therapeutic misconception. We suggest that this provides an impetus to re-examine the ethics of clinical research, particularly in relation to trial access, participant selection, communication and consent, and role delineation.

Attitudes to End-of-Life Care and Voluntary Assisted Dying Amongst Members of the Australian Jewish community.

The implementation of voluntary assisted dying (VAD) in the Australian State of Victoria in 2019 has stimulated discussions about end-of-life care and dying in many communities. Various attempts have been made to represent the attitudes of the Jewish community, a distinct culturally and linguistically diverse (CALD) group, in terms that suggest a unified set of opinions that opposes VAD policies. This research aimed to explore attitudes to VAD in the context of end-of-life care held by members of the Victorian Jewish community. A descriptive qualitative methodological design was employed. Ten Victorians who identify as Jewish were recruited and participated in in-depth, semi-structured interviews. Reflexive thematic analysis was carried out on the transcripts to identify key themes, attitudes and preferences in relation to end-of-life care, death and dying, and VAD. Three themes were identified: "complexity and variation", "similarities", and "factors influencing attitudes to VAD and end-of-life care". A significant degree of diversity was apparent, ranging from highly supportive of VAD to advocacy for a total repeal of the policy. The results indicate that images of how Victorian Jewish individuals feel towards VAD based on essentialised notions about the community and belief systems are not supported by the evidence. In reality, considerable diversity of attitudes exists towards VAD and end-of-life care. We conclude that it is important that policymakers and members of the broader society avoid stereotypes that falsely characterise this specific community and, by implication, other CALD groups, particularly in terms that ignore internal diversity regarding belief systems, social attitudes and ethical perspectives.

How Do Kidney Disease Clinicians View Kidney Supportive Care and Palliative Care? A Qualitative Study.

RATIONALE & OBJECTIVE: Kidney supportive care (KSC) is a developing area in medicine that integrates the expertise of kidney and palliative care practitioners to improve symptoms and quality of life for people with advanced kidney disease. The intersection of the practical aspects of KSC (including care activities and clinical referrals) with palliative and end-of-life care (EOLC) are largely unknown. The aim of this study was to explore kidney disease clinicians' experiences of KSC, palliative care, and EOLC. STUDY DESIGN: An exploratory qualitative study using semistructured focus groups. SETTING & PARTICIPANTS: Kidney disease clinicians (18 physicians, 3 trainees, and 33 kidney disease nurses) from 5 public hospitals were recruited across Victoria, Australia. ANALYTICAL APPROACH: Thematic analysis of focus group transcripts. RESULTS: The 2 overarching themes highlighted by clinicians were their perception that their health care systems insufficiently addressed the needs of people with advanced kidney disease, as well as their aspirations to develop KSC services to improve health care experiences. Three subthemes were identified related to limitations in health care systems: (1) variation in the clinical scope of KSC, (2) limited integration of palliative care, and (3) experiences of challenging and compromised provision of EOLC. The second theme described aspirations for future KSC services to be more inclusive, seamless, and collaborative across health care providers with capacity to respond to meet changing palliative care needs. LIMITATIONS: Findings may not be transferable to contexts outside of Victoria, Australia; data were collected in 2017-2018 and may not reflect current or future experiences. CONCLUSIONS: Kidney clinicians described systemic challenges and compromises in care experiences and the need for development of KSC services. They expressed that this development would require a consistent and systematic approach that integrates palliative care and embeds KSC as part of kidney health service delivery.

Patterns of care for people with small cell lung cancer in Victoria, 2011-19: a retrospective, population-based registry data study.

OBJECTIVES: To report stage-specific patterns of treatment and the influence of management and treatment type on survival rates for people newly diagnosed with small cell lung cancer (SCLC). DESIGN: Cross-sectional patterns of care study; analysis of data prospectively collected for the Victorian Lung Cancer Registry (VLCR). SETTING, PARTICIPANTS: All people diagnosed with SCLC in Victoria during 1 April 2011 - 18 December 2019. MAIN OUTCOME MEASURES: Stage-specific management and treatment of people with SCLC; median survival time. RESULTS: During 2011-19, 1006 people were diagnosed with SCLC (10.5% of all lung cancer diagnoses in Victoria); their median age was 69 years (interquartile range [IQR], 62-77 years), 429 were women (43%), and 921 were current or former smokers (92%). Clinical stage was defined for 896 people (89%; TNM stages I-III, 268 [30%]; TNM stage IV, 628 [70%]) and ECOG performance status at diagnosis for 663 (66%; 0 or 1, 489 [49%]; 2-4, 174 [17%]). The cases of 552 patients had been discussed at multidisciplinary meetings (55%), 377 people had received supportive care screening (37%), and 388 had been referred for palliative care (39%). Active treatment was received by 891 people (89%): chemotherapy, 843 (84%); radiotherapy, 460 (46%); chemotherapy and radiotherapy, 419 (42%); surgery, 23 (2%). Treatment had commenced within fourteen days of diagnosis for 632 of 875 patients (72%). Overall median survival time from diagnosis was 8.9 months (IQR, 4.2-16 months; stage I-III: 16.3 [IQR, 9.3-30] months; stage IV: 7.2 [IQR, 3.3-12] months). Multidisciplinary meeting presentation (hazard ratio [HR], 0.66; 95% CI, 0.58-0.77), multimodality treatment (HR, 0.42; 95% CI, 0.36-0.49), and chemotherapy within fourteen days of diagnosis (HR, 0.68; 95% CI, 0.48-0.94) were each associated with lower mortality during follow-up. CONCLUSION: Rates of supportive care screening, multidisciplinary meeting evaluation, and palliative care referral for people with SCLC could be improved. A national registry of SCLC-specific management and outcomes data could improve the quality and safety of care.

Voluntary Assisted Dying/Euthanasia: Will This Have an Impact on Cancer Care in Future Years?

OPINION STATEMENT: In considering the impact of medically hastened death (MHD) on cancer care, a wide range of variables needs to be considered including demographic factors, diagnoses, local cultural factors, and the legislative frameworks in place. Here, we present a synthesis of recently available published literature and empirical data collected following legislative change to enable MHD in Victoria, Australia to explore in detail the potential impact of MHD on cancer care with a focus on patients/families and professional groups. Our findings reveal that for patients and families, both physical and existential distress frequently underlie MHD requests, with the latter less readily recognised by health professionals. The responses of those around the patient making the request may have a very significant impact on relationships within families and upon the nature of the subsequent bereavement. For palliative care, while differing views may remain, it appears that there has been some accommodation of MHD into or alongside practice over time. The recognition of a shared commitment to relief of suffering of palliative care and MHD appears a helpful means of establishing how these practices may co-exist. In cancer practice more broadly, as individual professionals reflect upon their own roles, new relationships and pathways of patient movement (or referral) must be established in response to patients' requests. Our findings also highlight many unanswered questions in understanding the impact of MHD, including that upon those dying who choose not to access MHD, First Nations peoples, the participating health professionals' longer term, and the relief of suffering itself. A systematic approach to the evaluation of MHD legislation must be adopted in order to understand its full impact. Only then could it be determined if the aspirations for such legislative change were being met.

'It's communication between people who are going through the same thing': experiences of informal interactions in hospital cancer treatment settings.

PURPOSE: In hospital settings, patients, visitors, and staff engage in many interactions outside formal clinical encounters. Whilst many of these may be inconsequential, others contribute significantly to how patients and their carers experience cancer and its treatment. This article aims to explore the experiences and significance of interactions that occur outside formal clinical encounters in hospital cancer treatment settings. METHODS: Semi-structured interviews were conducted with cancer patients, carers, and staff recruited from two hospital sites and cancer support groups. Hermeneutic phenomenology informed lines of questioning and data analysis. RESULTS: Thirty-one people participated in the study: 18 cancer patients, four carers, and nine staff members. The experiences of informal interactions were grouped into three themes: connecting, making sense, and enacting care. The participants described how these encounters allowed connection with others in the hospital spaces, facilitating a sense of belonging, normality, and self-worth. Through these interactions, individuals participated in making sense of their experiences, to better anticipate the decisions and challenges that might lie ahead. By connecting with other individuals, they cared for others and felt cared for themselves, and were able to learn from, teach, and support each other. CONCLUSIONS: Outside the confines of the clinical discourses participants negotiate terms of engagement, sharing of information, expertise, and their own personal stories that they may employ to contribute to the individuals around them. These interactions occur within a loose and evolving framework of social interactions, an 'informal community', in which cancer patients, carers, and staff members play active and meaningful roles.

Defining research priorities and needs in cancer symptoms for adults diagnosed with cancer: an Australian/New Zealand modified Delphi study.

PURPOSE: This study asked consumers (patients, carers) and healthcare professionals (HCPs) to identify the most important symptoms for adults with cancer and potential treatment interventions. METHODS: A modified Delphi study was conducted involving two rounds of electronic surveys based on prevalent cancer symptoms identified from the literature. Round 1 gathered information on participant demographics, opinions and/or experience on cancer symptom frequency and impact, and suggestions for interventions and/or service delivery models for further research to improve management of cancer symptoms. In Round 2, respondents ranked the importance of the top ten interventions identified in Round 1. In Round 3, separate expert panels of consumers and healthcare professionals (HCPs) attempted to reach consensus on the symptoms and interventions previously identified. RESULTS: Consensus was reached for six symptoms across both groups: fatigue, constipation, diarrhoea, incontinence, and difficulty with urination. Notably, fatigue was the only symptom to reach consensus across both groups in Round 1. Similarly, consensus was reached for six interventions across both groups. These were the following: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other pharmacological interventions. CONCLUSIONS: Consumers and HCPs prioritise differently; however, the symptoms and interventions that reached consensus provide a basis for future research. Fatigue should be considered a high priority given its prevalence and its influence on other symptoms. The lack of consumer consensus indicates the uniqueness of their experience and the need for a patient-centred approach. Understanding individual consumer experience is important when planning research into better symptom management.

Characteristics of patients diagnosed with pancreatic cancer who access palliative care: An observational study.

PURPOSE: Despite the benefits of palliative care (PC) in pancreatic cancer, little is known about patients who access PC. This observational study examines the characteristics of patients with pancreatic cancer at their first episode of PC. METHODS: First-time, specialist PC episodes captured through the Palliative Care Outcomes Collaboration (PCOC), in Victoria, Australia between 2014 and 2020, for pancreatic cancer, were identified. Multivariable logistic regression analyses examined the impact of patient- and service-level characteristics on symptom burden (measured through patient-reported outcome measures and clinician-rated scores) at first PC episode. RESULTS: Of 2890 eligible episodes, 45% began when the patient was deteriorating and 32% ended in death. High fatigue and appetite-related distress were most common. Generally, increasing age, higher performance status and more recent year of diagnosis predicted lower symptom burden. No significant differences were noted between symptom burden of regional/remote versus major city dwellers; however, only 11% of episodes recorded the patient as a regional/remote resident. A greater proportion of first episodes for non-English-speaking patients began when the patient was unstable, deteriorating or terminal, ended in death and were more likely to be associated with high family/carer problems. Community PC setting predicted high symptom burden, with the exception of pain. CONCLUSION: A large proportion of first-time specialist PC episodes in pancreatic cancer begin at a deteriorating phase and end in death, suggesting late access to PC. Timely referrals to community-based specialist PC, access in regional/remote areas, as well as development of culturally diverse support systems require further investigation.

A thematic analysis of hospital medical records of patients with advanced illness experiencing incarceration in the last 3 months of life.

BACKGROUND: The constraining prison culture is not, for the most part, conducive to the provision of palliative care for people in prison. AIM: This study aimed to explore patterns of palliative and end-of-life care provision for hospitalised prison patients. DESIGN: A retrospective qualitative review of hospital medical records to explore the quality of end-of-life care provision for patients experiencing incarceration who died within hospital. Qualitative inductive analysis of record extracts of each patients final 3-months of life was undertaken. SETTING/PARTICIPANTS: An Australian metropolitan hospital responsible for providing secondary and tertiary health services for people experiencing incarceration. This study included a systematic sample of male patients experiencing incarceration who died in hospital between 2009 and 2019. RESULTS: Medical record extracts of 15 male patients revealed two broad themes: (1) barriers to equitable access to palliative care for incarcerated hospitalised patients; and (2) factors that facilitated quality end-of-life care for patients and families. Barriers included: tensions between balancing risk and humanity; and limited agency over place and death. Conversely, early recognition of deterioration and anticipated dying provided patients and families opportunity to focus on end-of-life goals. CONCLUSIONS: Institutional influences of security and control challenged the provision of equitable end-of-life care for people experiencing incarceration. Further research is required to inform, and incorporate, best approaches to identifying patient wishes and advance planning into care within, or despite, the constrains of incarceration. Policy reform and a coordinated, best practice approach to the management of end-of-life care for people experiencing incarceration is needed.

Bridging cultures in palliative care: A qualitative study of the care of Indigenous Australians with advanced illness.

BACKGROUND: Lack of access, late engagement and limited referral for palliative care remain critical issues in supporting Indigenous Australians with life limiting illness. AIM: To explore the experiences and perspectives of Indigenous and non-Indigenous health professionals regarding the provision of palliative care for Indigenous people with advanced disease. DESIGN: Qualitative study involving semi-structured focus groups/interviews with analysis following an inductive thematic approach. SETTING/PARTICIPANTS: A purposive sample (n = 54) of medical, nursing, allied health and Indigenous Hospital Liaison Officers engaged in caring for Indigenous patients at a metropolitan teaching hospital in Australia. RESULTS: Four overarching themes were identified regarding provision of palliative care for Indigenous patients. These were (1) the intersection of cultures - Indigenous peoples, health and palliative care, (2) bridging the cultural divide: the integral role of Indigenous Hospital Liaison Officers, (3) health professionals devolve their responsibility to provide culturally appropriate care and (4) building towards a more holistic, culturally aware provision of palliative care. CONCLUSIONS: For many Indigenous people, the health system may be experienced as inflexible, narrowly focused and even prejudiced and traumatising. For Indigenous patients at the end of life, these challenges are heightened. The Indigenous Hospital Liaison Officers, working at the intersections of these two cultures, are key to negotiating such challenges as they seek opportunities to facilitate communication and understanding between firmly held cultural needs.

An evidence-base for the implementation of hospital-based palliative care programs in routine cancer practice: A systematic review.

BACKGROUND: Despite global support, there remain gaps in the integration of early palliative care into cancer care. The methods of implementation whereby evidence of benefits of palliative care is translated into practice deserve attention. AIM: To identify implementation frameworks utilised in integrated palliative care in hospital-based oncology services and to describe the associated enablers and barriers to service integration. DESIGN: Systematic review with a narrative synthesis including qualitative, mixed methods, pre-post and quasi experimental designs following the guidance by the Centre for Reviews and Dissemination (PROSPERO registration CRD42021252092). DATA SOURCES: Six databases searched in 2021: EMBASE, EMCARE, APA PsycINFO, CINAHL, Cochrane Library and Ovid MEDLINE searched in 2023. Included were qualitative or quantitative studies, in English language, involving adults >18 years, and implementing hospital-based palliative care into cancer care. Critical appraisal tools were used to assess the quality and rigour. RESULTS: Seven of the 16 studies explicitly cited the use of frameworks including those based on RE-AIM, Medical Research Council evaluation of complex interventions and WHO constructs of health service evaluation. Enablers included an existing supportive culture, clear introduction to the programme across services, adequate funding, human resources and identification of advocates. Barriers included a lack of communication with the patients, caregivers, physicians and palliative care team about programme goals, stigma around the term 'palliative', a lack of robust training, or awareness of guidelines and undefined staff roles. CONCLUSIONS: Implementation science frameworks provide a method to underpin programme development and evaluation as palliative care is integrated within the oncology setting.

When research becomes practice: the concept of the therapeutic misconception and challenges to consent in clinical trials.

Many factors influence patients' decisions to participate in clinical trials. For many, the primary motivation is the possibility that they might derive some benefit from participation. This is particularly true for patients with limited treatment options, such as patients with advanced cancer. While this is not surprising, it is potentially problematic if patients fail to recognise the distinction between research and clinical care (a phenomenon known as the 'therapeutic misconception'). This is becoming increasingly problematic as clinical trial designs become more complex, as clinical trials become more embedded in routine clinical care, and as trials are increasingly used by patients and clinicians to access new diagnostic platforms and therapies. We outline some of these recent trends, focusing on the cancer clinical trials landscape as this provides a good case study of the phenomenon. We conclude by making preliminary suggestions that changes to the consent process, perhaps using 'dynamic consent' platforms, might help to mitigate the therapeutic misconception and note the need for further research to guide strategies for improving communication and decision-making.

A review of the utility of prognostic tools in predicting 6-month mortality in cancer patients, conducted in the context of voluntary assisted dying.

BACKGROUND: Eligibility to access the Victorian voluntary assisted dying (VAD) legislation requires that people have a prognosis of 6 months or less (or 12 months or less in the setting of a neurodegenerative diagnosis). Yet prognostic determination is frequently inaccurate and prompts clinician discomfort. Based on functional capacity and clinical and biochemical markers, prognostic tools have been developed to increase the accuracy of life expectancy predictions. AIMS: This review of prognostic tools explores their accuracy to determine 6-month mortality in adults when treated under palliative care with a primary diagnosis of cancer (the diagnosis of a large proportion of people who are requesting VAD). METHODS: A systematic search of the literature was performed on electronic databases Medline, Embase and Cinahl. RESULTS: Limitations of prognostication identified include the following: (i) prognostic tools still provide uncertain prognoses; (ii) prognostic tools have greater accuracy predicting shorter prognoses, such as weeks to months, rather than 6 months; and (iii) functionality was often weighted significantly when calculating prognoses. Challenges of prognostication identified include the following: (i) the area under the curve (a value that represents how well a model can distinguish between two outcomes) cannot be directly interpreted clinically and (ii) difficulties exist related to determining appropriate thresholds of accuracy in this context. CONCLUSIONS: Prognostication is a significant aspect of VAD, and the utility of the currently available prognostic tools appears limited but may prompt discussions about prognosis and alternative means (other than prognostic estimates) to identify those eligible for VAD.

Perspectives in preparedness of family caregivers of patients with cancer providing end-of-life care in the home: A narrative review of qualitative studies.

BACKGROUND: Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being. OBJECTIVES: This study sought to review existing qualitative literature on family carers' experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role. METHODS: A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: "Cancer," "Caregiver," "End of Life Care," "Home," and "Qualitative." Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research. RESULTS: Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: "motivations for providing care," "interactions with health-care professionals," and "changes during the caring process." SIGNIFICANCE OF RESULTS: Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.

Experience and acceptability of a carer-focussed intervention in acute oncology settings: A qualitative study of people with advanced cancer and their carers.

OBJECTIVES: Providing optimal support for carers of people with advanced cancer is critical to facilitating discharge home from hospital. Carer Support Needs Assessment Tool-Intervention (CSNAT-I) has shown promise in supporting carers' needs in this context. This study aimed to explore patient and carers experiences with and views on the acceptability of the CSNAT-I delivered by occupational therapists in an acute oncology setting. METHODS: People with advanced cancer and their carers who had previously received the CSNAT-I as part of usual care while admitted to an Australian specialist cancer centre or acute hospital were invited to participate in interviews exploring their perceptions of the intervention. Data were analysed thematically. RESULTS: Two patients and 10 carers participated in semi-structured interviews. Three themes were constructed from the data: Carers viewed the CSNAT-I as comprehensive process that (1) 'covered everything' related to discharge planning; (2) generated an 'increased awareness of needs' for themselves, patients, and clinicians; and (3) triggered an emotional response of feeling 'wrapped up in care' that was maintained as they moved from hospital to home. CONCLUSION: This study has demonstrated that the CSNAT-I was highly acceptable to carers as part of existing discharge processes supporting them through the transition from hospital to home and can be delivered by occupational therapists and other clinicians with a natural synergy to discharge planning. These findings will inform further development and testing of the delivery model of the CSNAT-I in future trials.

SINFONIA study protocol: a phase II/III randomised controlled trial examining benefits of guided online group singing in people with chronic obstructive pulmonary disease and interstitial lung disease and their carers.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) and interstital lung disease (ILD) are incurable conditions characterised by airflow limitation, persisting respiratory symptoms, and progressive respiratory failure. People living with COPD or ILD often suffer from chronic and severe breathlessness, with limited treatment options and low engagement rates with current therapies. Group singing represents a potential community-based therapy to improve quality of life for patients with COPD or ILD and breathlessness. METHODS: This protocol papers describes SINFONIA, a parallel, double-arm, randomised, blinded-analysis, mixed-methods phase II/III trial of guided, online group singing that will be conducted over 24 months. Adults with confirmed COPD or ILD, on stable treatment for at least four weeks at time of recruitment, with a modified Medical Research Council (mMRC) dyspnoea score of two or greater, who are capable and willing to give consent, and not currently participating in pulmonary rehabilitation will be eligible to participate. Carers may optionally enrol in the trial. Data will be collected on quality of life, anxiety and depression, breathlessness, mastery of breathing, exercise tolerance, loneliness, healthcare utilisation, and carer quality of life (optional). Participants will be randomised 1:1 to intervention or control arms with intervention arm attending one 90 min, guided, online, group singing session per week for 12 weeks and control arm continuing routine care. Phase II of the trial aims to determine the feasibility and acceptability of guided, online group singing and will collect preliminary data on effectiveness. Phase III aims to determine whether guided, online group singing has an effect on quality of life with the primary outcome being a between arm difference in quality of life (36-item Short Form Survey) measured at 12 weeks. DISCUSSION: SINFONIA is the first study is the first of its kind in Australia and to our knowledge, the first to deliver the singing intervention program entirely online. Determining the feasibility, acceptability, and effectiveness of guided, online group singing is an important step towards improving low-cost, low-risk, community-based therapeutic options for patients living with COPD or ILD and breathlessness. TRIAL REGISTRATION: Phase II- ACTRN12621001274864 , registered 20th September 2021; Phase III- ACTRN12621001280897 , registered 22nd September 2021.

The Role of Pharmacogenomics in Opioid Prescribing.

OPINION STATEMENT: Pharmacogenomics is increasingly important to guide objective, safe, and effective individualised prescribing. Personalised prescribing has revolutionised treatments in the past decade, allowing clinicians to maximise drug efficacy and minimise adverse effects based on a person's genetic profile. Opioids, the gold standard for cancer pain relief, are among the commonest medications prescribed in palliative care practice. This narrative review examines the literature surrounding opioid pharmacogenomics and its applicability to the palliative care cancer population. There is currently limited intersection between the fields of palliative care and pharmacogenomics, but growing evidence presents a need to build linkages between the two disciplines. Pharmacogenomic evidence guiding opioid prescribing is currently available for codeine and tramadol, which relates to CYP2D6 gene variants. However, these medications are prescribed less commonly for pain in palliative care. Research is accelerating with other opioids, where oxycodone (CYP2D6) and methadone (CYP2B6, ABCB1) already have moderate evidence of an association in terms of drug metabolism and downstream analgesic response and side effects. OPRM1 and COMT are receiving increasing attention and have implications for all opioids, with changes in opioid dosage requirements observed but they have not yet been studied widely enough to be considered clinically actionable. Current evidence indicates that incorporation of pharmacogenomic testing into opioid prescribing practice should focus on the CYP2D6 gene and its actionable variants. Although opioid pharmacogenomic tests are not widely used in clinical practice, the progressively reducing costs and rapid turnover means greater accessibility and affordability to patients, and thus, clinicians will be increasingly asked to provide guidance in this area. The upsurge in pharmacogenomic research will likely discover more actionable gene variants to expand international guidelines to impact opioid prescribing. This rapidly expanding area requires consideration and monitoring by clinicians in order for key findings with clinical implications to be accessible, meaningfully interpretable and communicated.

Is the use of palliative care services increasing? A comparison of current versus historical palliative care access using health service datasets for patients with cancer.

BACKGROUND: Mature evidence exists supporting the integration of palliative care in cancer care, but translation of evidence into practice is less well understood. AIM: We sought to understand current access to palliative care and its timing for people with cancer and to compare practices over time. DESIGN: We conducted a retrospective population cohort study using routinely collected administrative health data sets in Victoria, Australia. SETTING/PARTICIPANTS: All adult cancer decedents in 2018 were identified and clinical, demographic, palliative care access and quality of end of life care indices collected.Comparisons between a historic cohort of lung, breast and prostate cancer patients who died between the years 2005 and 2009 and those with these diagnoses in the current cohort. RESULTS: In 2018 there were 10,245 Victorian decedents with a cancer-coded cause of death, of these 3689 had lung, prostate or breast cancer. In 2018, access to palliative care increased (66% vs 54%) and greater numbers accessed palliative care more than 3 months before death (18% vs 10%) than in 2005-2009. Indices of end of life quality improved across most domains. However the median time between first palliative care and death was shorter in 2018 (22 vs 25 days) and more people first accessed palliative care in the hospitalisation during which they died (43% vs 33%). CONCLUSION: Despite established benefits of early palliative care, the important task of translation of this evidence into practice remains.

Telehealth in outpatient delivery of palliative care: a prospective survey evaluation by patients and clinicians.

BACKGROUND: In Australia during the COVID-19 pandemic new funding models were introduced to support telehealth consultations, resulting in their widescale adoption in palliative care service delivery. Clarity around the clinical circumstances and patient populations that might be most appropriate for telehealth models was required. AIMS: To evaluate patient and physician satisfaction, acceptability and utility of outpatient palliative care provision through telehealth. METHODS: This is a multi-site prospective, cross-sectional, observational study conducted during a time of significant public health restrictions. A survey was used to collect matched patient- and physician-reported perceptions of palliative care telehealth consultations across three metropolitan hospitals in Victoria, Australia. RESULTS: There were 127 matched patient-physician data of telehealth consultations and a further 812 physician-only assessments. Telehealth was generally acceptable and satisfactory, with patients providing greater positive scores than clinicians. Telehealth incorporating both audio and video were more acceptable and satisfactory, particularly with the presence of a carer, and during routine reviews. Physicians were less satisfied using telehealth when there was increasing symptom complexity across all domains (pain, psychological, and other symptoms). CONCLUSIONS: Telehealth has high utility in palliative care practice. A future hybrid model of care comprising both face-to-face and telehealth consultations seems favoured by patients and physicians but must be accompanied by targeted support for specific patient groups to ensure equitable healthcare access. Further evaluation of telehealth during a time of fewer public health emergency measures and lower community anxiety is required to fully understand its ongoing role.