Background: Spiritual care allows palliative care patients to gain a sense of purpose, meaning and connectedness to the sacred or important while experiencing a serious illness. This study examined how Australian patients conceptualise their spirituality/religiosity, the associations between diagnosis and spiritual/religious activities, and views on the amount of spiritual support received.
Methods: This mixed-methods study used anonymous semistructured questionnaires, which included the Functional Assessment of Chronic Illness Therapy-Spiritual Scale-12 (FACIT-SP-12) and adapted and developed questions examining religion/spirituality’s role and support.
Results: Participants numbered 261, with a 50.9% response rate. Sixty-two per cent were affiliated with Christianity and 24.2% with no religion. The mean total FACIT-SP-12 score was 31.9 (SD 8.6). Patients with Christian affiliation reported a higher total FACIT-SP-12 score compared with no religious affiliation (p=0.003). Those with Christian and Buddhist affiliations had higher faith subscale scores compared with those with no religious affiliation (p<0.001). Spirituality was very important to 39.9% and religiosity to 31.7% of patients, and unimportant to 30.6% and 39.5%, respectively. Following diagnosis, patients prayed (p<0.001) and meditated (p<0.001) more, seeking more time, strength and acceptance. Attendance at religious services decreased with frailty (p<0.001), while engagement in other religious activities increased (p=0.017). Patients who received some level of spiritual/religious support from external religious/faith communities and moderate to complete spiritual/religious needs met by the hospitals reported greater total FACIT-SP-12 spirituality scores (p<0.001).
Conclusion: Respectful inquiry into patients spiritual/religious needs in hospitals allows for an attuned approach to addressing such care needs while considerately accommodating those disinterested in such support.
Background: There is a growing emphasis on the importance of availability of specialist palliative care for people living with dementia. However, for people imminently dying with dementia, we still have little knowledge about their palliative care needs and utilization of different specialist services.
Objectives: To (i) assess palliative care needs and other clinical and social characteristics of people imminently dying with dementia on their last admission in the context of community and inpatient palliative care services before death; (ii) compare care needs between patients requiring community-based and inpatient services; (iii) determine how and whether such care needs affect utilization of different palliative care services.
Design: Observational study using data from the Australian Palliative Care Outcomes Collaboration.
Settings: Specialist palliative care services across Australia registered in the Palliative Care Outcomes Collaboration.
Participants: A total of 3361 people who required specialist palliative care principally for dementia (including Alzheimer's disease and other dementias), and whose death occurred between 1 January 2013 and 31 December 2018.
Methods: Five validated clinical instruments were used to collect point-of-care outcomes on each individual's function (Resource Utilisation Groups - Activities of Daily Living & Australia-modified Karnofsky Performance Status), symptom distress (Symptoms Assessment Scale & Palliative Care Problem Severity Score) and other clinical characteristics (Palliative Care Phases). We fitted multivariate logistic regression models to examine the association between these clinical outcomes and utilization of different specialist palliative care services.
Results: The majority of people imminently dying with dementia had absent or mild levels of symptom distress but experienced high levels of functional decline and needed substantial assistance with basic tasks of daily living in their last days of life. Large disparities in symptoms distress and functional decline between inpatient and community groups were not observed although differences in assessment scores were often statistically significant. Poor functional outcomes (odds ratio = 1.77, 95% confidence interval: 1.24–2.52) and “non-stable” palliative care phases (odds ratio =24.51, 95% confidence interval: 12.03–49.96) were positively associated with use of inpatient versus community palliative care, whereas there was no clear association between the majority of symptoms and use of different care services.
Conclusions: The majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in the community. Development of a dementia-specific palliative care pathway is needed to promote needs-based palliative care delivery models.
Background: Voluntary assisted dying (VAD) became legal in the Australian state of Victoria on 19 June 2019 and will be legal in Western Australia from 2021. Other Australian states are progressing similar law reform processes. In Australia and internationally, doctors are central to the operation of all legal VAD regimes. It is broadly accepted that doctors, as a profession, are less in favour of VAD law reform than the rest of the community. To date, there has been little analysis of the factors that motivate doctors’ support or opposition to legalised VAD in Australia.
Aim: To review all studies reporting the attitudes of Australian doctors regarding the legalisation of VAD, including their willingness to participate in it, and to observe and record common themes in existing attitudinal data.
Design: Scoping review and thematic analysis of qualitative and quantitative data.
Data sources: CINAHL, Embase, Scopus, PubMed and Informit were searched from inception to June 2019.
Results: 26 publications detailing 19 studies were identified. Thematic analysis of quantitative and qualitative findings was performed. Three overarching themes emerged. ‘Attitudes towards regulation’ encompassed doctors’ orientation towards legalisation, the shortcomings of binary categories of support or opposition and doctors’ concerns about additional regulation of their professional practices. ‘Professional and personal impact of legalisation’ described tensions between palliative care and VAD, and the emotional and social impact of being providers of VAD. ‘Practical considerations regarding access’ considered doctors’ concerns about eligibility criteria and their willingness to provide VAD.
Conclusion: A detailed understanding of medical perspectives about VAD would facilitate the design of legislative models that take better account of doctors’ concerns. This may facilitate their greater participation in VAD and help address potential access issues arising from availability of willing doctors.
Background: Chronic obstructive pulmonary disease (COPD) is an incurable, chronic condition that leads to significant morbidity and mortality, with most patients dying in hospital. While diagnostic tests are important for actively managing patients during hospital admissions, the balance between benefit and harm should always be considered. This is particularly important when patients reach the end-of-life, when the focus is to reduce burdensome interventions. This study aimed to examine the use of diagnostic testing in a cohort of people with COPD who died in hospital.
Methods: Retrospective medical record audits were completed at two Australian hospitals (Royal Melbourne Hospital and Northeast Health Wangaratta), with all patients who died from COPD over twelve years between 1/1/2004 and 31/12/2015 included.
Results: Three hundred and forty-three patients were included, with a median of 11 diagnostic testing episodes per patient. Undergoing higher numbers of diagnostic tests was associated with younger age, ICU admission and non-invasive ventilation use. Reduced testing was associated with recent hospital admission for COPD, domiciliary oxygen use and a prior admission with documentation limiting medical treatment. Most patients underwent diagnostic tests in the last two days of life, and 12% of patients had ongoing diagnostic tests performed after a documented decision was made to change the goal of care to provide comfort care only.
Conclusion: There were missed opportunities to reduce the burden of diagnostic tests and focus on comfort at the end of life. Increased physician education regarding communication and en-of-life care, including recognising active dying may address these issues.
Context: Managing the care of an increasing and aging prisoner population, including providing palliative and end-of-life care, is a challenge worldwide. There is little known about the views of health professionals who provide palliative care to hospitalized prisoner patients.
Objectives: To explore experiences and perspectives of health professionals regarding the provision of palliative and end-of-life care for hospitalized prisoner patients.
Methods: A qualitative study involving semistructured focus groups and interviews with 54 medical, nursing, and allied health staff engaged in the care of hospitalized prisoner patients. Purposive sampling from a metropolitan teaching hospital responsible for providing secondary and tertiary health care for prisoners in Victoria, Australia, for 40 years was used to identify and seek perspectives of staff from a variety of clinical disciplines. Inductive thematic analysis was conducted by two researchers.
Results: Participants described significant constraints in how they provide palliative care to hospitalized prisoners. Key themes emerged describing constraints on prisoner health decisions, provision and place of care, patient advocacy, and how care is delivered in the last days of life. Participants highlighted a deep philosophical tension between prison constraints and the foundational principles of palliative care.
Conclusion: Clarity of correctional service processes, protocols, and aspects of security and related training for health professionals is needed to ensure improved care for prisoners with progressive and life-limiting illness. Further research is required to seek the views of prisoners facing end of life and their families.
Background: Chronic breathlessness is a disabling syndrome that profoundly impacts patients’ and caregivers’ lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving.
Aim: To understand patients’ and caregivers’ (1) perspectives and experiences of driving with chronic breathlessness; and (2) perceived impact of regular, low-dose, sustained-release morphine on driving.
Design: A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (<=32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted.
Setting/participants: Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients (n = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers (n = 9).
Results: Participants were interviewed at home. Eleven received morphine 8–32 mg. Three themes emerged: (1) independence; (2) breathlessness’ impact on driving; and (3) driving while taking regular, low-dose, sustained-release morphine.
Conclusion: Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.
Objective: The aim of this study was to describe the patterns of discharge and re-enrollment to a community palliative care service, and to identify factors associated with re-enrollment.
Background: Community-based palliative care is a limited resource. The evidence base to guide discharge practices from community palliative care services is limited.
Methods: A retrospective audit of the electronic medical records for all patients discharged from the Sacred Heart Community Palliative Care Service (SHCPCS), Sydney, from July 2010 to July 2016 was conducted. Patients were excluded if they were discharged due to death, transferred out of catchment area, declined the service, transferred to another hospital, or were referred inappropriately.
Data extracted included sociodemographic variables, living situation, diagnoses, and discharge and re-enrollment details. Using binary logistic regression analysis, predictive factors, including socio-demographic characteristics, diagnosis and length of episode of care, were evaluated.
Results: Of the 739 patients who met the inclusion criteria, 42 (5.7%) were re-enrolled to the service. The median length of the initial episode of care was 65 days and the median timeframe between discharge and re-enrollment was 216 days. Patients living in residential care facilities (odds ratio [OR] 3.45; 95% confidence interval [CI] 1.28–9.28; p = 0.01) and those with malignant diagnoses (OR 2.22; 95% CI 1.00–4.93; p = 0.04) had higher rates of re-enrollment.
Discussion: The proportion of patients re-enrolled to the service was low. Both patient factors and disease factors were associated with re-enrollment. Future prospective studies evaluating prognostic factors to assist with effective discharge processes and guidelines are warranted.
Context: Personal and interpersonal factors may be influential in a person's decision to engage in advance care planning (ACP), including completion of ACP documentation.
Objectives: To conduct a cross-sectional survey of older adults accessing Australian general practices, hospitals, and residential aged care facilities, with the aim of describing associations between personal and interpersonal factors and self-reported ACP documentation completion.
Methods: Eligible participants included in a national health record audit were approached to complete a survey measuring demographic and health characteristics, preferences for care, worries about the future, and experiences talking with others about ACP and completing ACP documentation.
Results: Of 1082 people eligible to participate in the survey, 507 completed the survey (response rate = 47%; median age 82 years) and 54% (n = 272) reported having completed ACP documentation. Having ever discussed ACP with other people (anyone) or a doctor were both significant predictors of ACP documentation completion, whereas having previously spoken specifically to a partner about ACP, currently living with children compared to living alone, and being aged 55–69 versus 90–99 years were associated with reduced odds of ACP documentation completion.
Conclusion: Approximately half the participants reported having completed ACP documentation. The strongest predictor of ACP documentation completion was having spoken to anyone about ACP followed by having spoken to a doctor about ACP. These findings suggest that discussions about ACP are an important part of the process of completing ACP documentation.
Context: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care?
Objectives: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool.
Methods: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study.
Results: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92).
Conclusion: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.
Objectives: Common terminal phase symptoms include pain, dyspnoea, anxiety, terminal restlessness, nausea and noisy breathing. This study identified the proportion of community pharmacies across two Australian states stocking medicines useful in managing terminal phase symptoms, while exploring factors considered predictive of pharmacies carrying these medicines.
Methods: Community pharmacies from across the states of New South Wales (NSW) and South Australia (SA) were concurrently mailed a survey. Respondents were asked questions relating to medicines stocked, expiry date of stock, awareness of people with palliative care needs and demographic characteristics of the pharmacy. A ‘prepared pharmacy’ was defined as a pharmacy that held medicines useful in the management of terminal phase symptoms.
Results: The proportion of prepared pharmacies across NSW and SA was 21.9%. Multiple logistic regression demonstrated eight predictors of prepared pharmacies, of which awareness of people with palliative needs using their service was the strongest.
Conclusions: One-fifth of community pharmacies carry formulations useful in managing terminal phase symptoms. The main factor associated with this was awareness of people with palliative needs using the pharmacy. Strategies that engage with pharmacists in anticipation of the terminal phase are critical, supporting people with palliative needs to remain at home to die, if desired.
In 2019, the Voluntary Assisted Dying Act 2017 (Vic) came into force. Thereupon, Victoria became the first State in Australia to enact such a law since the Commonwealth of Australia overturned Northern Territory legislation in 1997. Because of the difficulties in the introduction of Victorian law, it is extremely conservative, with many safeguards. There are significant limitations to this law which will result in significant ethical difficulties for medical practitioners and their patients. Four problematic areas of the law are discussed: the prohibition on health practitioners introducing the subject, introduction of the subject of voluntary assisted dying to patients; difficulties in obtaining access to treatment in certain populations in Victoria; the arbitrary minimum age of 18 to be able to access voluntary assisted dying; and the difficulties for patients and practitioners in evaluating the capacity of patients with mental illness and cognitive difficulties. Practical solutions to these difficulties will be proffered and discussed.
BACKGROUND: In June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.
MAIN TEXT: In this paper, we analyse the ethical relationship between legislative "safeguards" and equal access. Drawing primarily on Ruger's model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients.
CONCLUSIONS: While safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access.
BACKGROUND: There is a gap in knowledge about the kind and quality of care experienced by hospital patients at the end of their lives.
AIMS: To document and compare the patterns in end-of-life care for patients dying across a range of different medical units in an acute care hospital.
METHODS: A retrospective observational study of consecutive adult inpatient deaths between 1 July 2010 and 30 June 2014 in four different medical units of an Australian tertiary referral hospital was performed. Units were selected on the basis of highest inpatient death rates and included medical oncology, respiratory medicine, cardiology and gastroenterology/hepatology.
RESULTS: Overall, 41% of patients died with active medical treatment plans, but significantly more respiratory and cardiology patients died with ongoing treatment (46 and 75% respectively) than medical oncology and gastroenterology patients (each 27%, P < 0.05). More medical oncology and gastroenterology patients were recognised as dying (92 and 88%) compared with 72% of respiratory and only 38% of cardiology patients (P < 0.001). Significantly, more medical oncology patients were referred to palliative care and received comfort care plans than all other patient groups. However, the rate of non-palliative interventions given in the final 48 h was not significantly different between all four groups.
CONCLUSIONS: There were differences in managing the dying process between all disciplines. A possible solution to these discrepancies would be to create an integrated palliative care approach across the hospital. Improving and reducing interdisciplinary practice variations will allow more patients to have a high-quality and safe death in acute hospitals.
INTRODUCTION: Indigenous patients with life-limiting conditions have complex needs, experience reduced access to and uptake of treatment, and have lower utilisation of palliative care services than the general population. Lack of understanding of the role of palliative care and poor availability of culturally safe specialist palliative care services impact on Indigenous people's end-of-life decision-making.
METHODS: To understand Aboriginal people's perspectives and experiences at the end of life, an exploratory study using facilitated group discussions in community settings in a region of Western Australia was undertaken. Local Aboriginal people were engaged to talk frankly about their wishes and concerns around end of life. The community consultations included two meetings at the local Aboriginal corporation, an evening meeting for invited community members, a meeting at the local Aboriginal community controlled health service and two further meetings of community members at local gathering places. These were supplemented by the analysis of previous in-depth video-recorded interviews that were undertaken with Aboriginal people with cancer reporting on their concerns and wishes.
RESULTS: The community consultations raised considerable discussion about wills, where to die, burial versus cremation, and the cost of funerals. Possibilities emerging from participants' reflections on the issue were public celebrations to honour someone's life, the potential use of sorting cards to help discussions about end-of-life personal wishes, and interest in making and decorating coffins. Aboriginal people with cancer raised similar issues, and focused on avoiding family disharmony by ensuring their family were aware of their end-of-life wishes.
CONCLUSION: Within a safe space, Aboriginal people were happy to talk about end-of-life wishes, although certain aspects of death remain contentious. Sorting cards, ceremonies, education and care roles involving Aboriginal people offer potential means for effectively engaging Aboriginal people in preparing for death and dealing with grief.
Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67-0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss.
DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept.
RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit.
CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement.
PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
Background: Delirium is a common debilitating complication of advanced cancer.
Objective: To determine if a multicomponent nonpharmacological delirium prevention intervention was feasible for adult patients with advanced cancer, before a phase III (efficacy) trial.
Design: Phase II (feasibility) cluster randomized controlled trial. All sites implemented delirium screening and diagnostic assessment. Strategies within sleep, vision and hearing, hydration, orientation, mobility, and family domains were delivered to enrolled patients at intervention site admission days 1–7. Control sites then implemented the intervention (“waitlist sites”).
Setting: Four Australian palliative care units.
Measurements: The primary outcome was adherence, with an a priori endpoint of at least 60% patients achieving full adherence. Secondary outcomes were interdisciplinary care delivery, delirium measures, and adverse events, analyzed descriptively and inferentially.
Rsults: Sixty-five enrolled patients (25 control, 20 intervention, and 20 waitlist) had 98% delirium screens and 75% diagnostic assessments completed. Nurses (67%), physicians (16%), allied health (8.4%), family (7%), patients (1%), and volunteers (0.5%) delivered the intervention. There was full adherence for 5% patients at intervention sites, partial for 25%. Both full and partial adherence were higher at waitlist sites: 25% and 45%, respectively. One-third of control site patients (32%) became delirious within seven days of admission compared to one-fifth (20%) at both intervention and waitlist sites (p = 0.5). Mean (standard deviation) Delirium Rating Scale-Revised-1998 scores were 16.8 + 12.0 control sites versus 18.4 + 8.2 (p = 0.6) intervention and 18.7 + 7.8 (p = 0.5) waitlist sites. The intervention caused no adverse events.
Conclusion: The intervention requires modification for optimal adherence in a phase III trial.
OBJECTIVES: Our aim was to (1) describe the clinical characteristics and symptoms of people diagnosed with dementia at the time of admission to inpatient palliative care; and (2) compare the nature and severity of these palliative care–related problems to patients with other chronic diseases.
DESIGN: Descriptive study using assessment data on point of care outcomes (January 1, 2013, to December 31, 2018).
SETTING: A total of 129 inpatient palliative care services participating in the Australian Palliative Care Outcomes Collaboration.
PARTICIPANTS: A total of 29,971 patients with a primary diagnosis of dementia (n = 1,872), lung cancer (n = 19,499), cardiovascular disease (CVD, n = 5,079), stroke (n = 2,659), or motor neuron disease (MND, n = 862).
MEASUREMENTS: This study reported the data collected at the time of admission to inpatient palliative care services including patients' self-rated levels of distress from seven common physical symptoms, clinician-rated symptom severity, functional dependency, and performance status. Other data analyzed included number of admissions, length of inpatient stay, and palliative care phases.
RESULTS: At the time of admission to inpatient palliative care services, relative to patients with lung cancer, CVD, and MND, people with dementia presented with lower levels of distress from most symptoms (odds ratios [ORs] range from .15 to .80; P < .05 for all) but higher levels of functional impairment (ORs range from 3.02 to 8.62; P < .001 for all), and they needed more assistance with basic activities of daily living (ORs range from 3.83 to 12.24; P < .001 for all). The trends were mostly the opposite direction when compared with stroke patients. Patients with dementia tended to receive inpatient palliative care later than those with lung cancer and MND.
CONCLUSION: The unique pattern of palliative care problems experienced by people with dementia, as well as the skills of the relevant health services, need to be considered when deciding on the best location of care for each individual. Access to appropriately trained palliative care clinicians is important for people with high levels of physical or psychological concerns, irrespective of the care setting or diagnosis.
BACKGROUND: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood.
AIM: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma.
DESIGN: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods.
SETTING/PARTICIPANTS: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres.
RESULTS: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life.
CONCLUSION: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.