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Personal values are individual conceptions of the desirable appraisals and actions that guide our attitudes and behaviour. Advance care planning (ACP) now emphasises the consideration of personal life goals and values expressed as a Values Directive (VD) to guide discussions concerning medical treatment.To investigate the diversity of values, experiences and adaptations expressed in cancer patients VDs.Contents of the VDs of ACPs of cancer patients who participated in a randomised control trial comparing a video intervention showing values communication between cancer patient-caregivers with usual care were analysed. Qualitative phenomenological content analysis was used to understand how participants made meaning of their lived experiences.Forty-two participants completed an ACP (37.2% response rate), with 97.6% of these completing a VD (57.1% female, mean age 72 years, 30.1% gastrointestinal cancer). Participants described diverse adjustments to frailty and adaptive coping with deteriorating functionality. Emotional and financial concerns were eased through experiencing benevolence and trust established through family and friendship bonds and reciprocation of care. Death anxiety and ambivalence were expressed concurrently with the experiential acceptance of dying. Secular and sacred rituals featured as an affirmation of their faith or beliefs.Cancer patients seek to make meaning of their experiences, concurrently posturing vulnerability and resilience, despite conflicting emotions and experiences. Given that the choices people make as they approach dying relate to their most deeply held values, ACP conversations should explore how patients draw from their values and life goals to optimise their adaptations to illness.

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.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.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.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%.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.

Purpose The objective of this study was to expand the international psychometric validation of the Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) within a sample of Australian cancer patients. Methods Survey data from 181 cancer patient-caregiver dyads ≥ 18 years of age with solid or haematological cancers were analysed (85.4% response rate). Spearman’s rho was used to examine the correlation between CCAT-P and CCAT-F scores and weighted kappa the agreement between them. Exploratory factor analysis using scree plot and Kaiser-Guttman criteria was conducted to evaluate the scale structure. Cronbach’s α and Pearson correlation coefficients were used to measure internal consistency and concurrent validity respectively. Results Mean scores were the following: CCAT-P 46.2 (9.8), CCAT-F 45.7 (9.4), and CCAT-PF 24.1 (8.0). We confirmed the poor concordance between patient and caregiver reporting of items in the CCAT-PF, with all but two items having weighted kappa values disclosure, limitation of treatment, and treatment decision making, with reliability ranging from Cronbach’s α = 0.43–0.53. The CCAT-P and CCAT-F showed strong correlations with preparation for decision-making (CCAT-P: r = 0.0.92; CCATF: r = 0.0.93) but were weakly associated with patient/caregiver distress related with having difficult conversations on future care planning. Conclusion Preliminary validation of the CCAT-PF in the Australian setting has shown some similar psychometric properties to previously published studies, further supporting its potential utility as a tool to assess patient-caregiver dyadic communication. Trial registration ACTRN12620001035910 12/10/2020 retrospectively registered.

Purpose We describe the prevalence of the Edmonton Classification System for Cancer Pain (ECS-CP) features in patients with bone metastasis and cancer-induced bone pain (CIBP) and the relationship between ECS-CP features, pain intensity, and opioid consumption. Methods We assessed ECS-CP features and recoded pain mechanisms and opioid use in adult patients with bone metastasis. Validated measures were used to assess pain intensity, incident pain, psychological distress, addictive behavior, and cognition. Results Among 147 eligible patients, 95.2% completed the assessment. Mean participant age was 73.2 years, the majority female (52.1%) with breast cancer occurring most commonly (25.7%). One or more ECS-CP features were present in 96.4% and CIBP in 75.7% of patients. The median average and worst pain scores were 3 and 6, respectively. Neuropathic pain was the most prevalent pain mechanism (45.0%) and was associated with breakthrough pain frequency (p=0.014). Three-quarters had incident pain, which was strongly associated with a higher average and worst pain scores (3.5 and 7, pp=0.005), and frequency of daily breakthrough analgesia (1.7 doses/day, p=0.007). Psychological distress (n=90, 64.3%) was associated with a significantly higher average pain score (4, p=0.009) and a slightly higher worst pain score (7, p=0.054). Addictive behaviour and cognitive dysfunction were relatively uncommon (18.6% and 12.9%, respectively). Conclusion There is a need to promote standardized assessment and classification of pain syndromes such as CIBP. The ECS-CP may allow us to consider CIBP in a systematic manner and develop personalized pain interventions appropriate to the pain profile. Trial registration Retrospectively registered in ANZCTR ACTRN12622000853741 (16/06/2022)

eHealthcare professionals face many challenges in imparting information and balancing hope and truth-telling at the time of disease progression or recurrence, and transition to the end-of-life for cancer patients. The way information is communicated verbally, and through the actions and approaches of cancer professionals, leaves a lasting impact on those afflicted by advanced cancer. It enables coping, assists with adjustment, allows for early family communication and coherence, and supports meaningful and purposeful living until the end. This chapter covers the importance of cancer communication and strategies to aid practitioners in discussing recurrence, progression, prognostication, and transition to palliative care. It highlights the importance of family communication, future care planning, and specific challenges when considering cultural, ethical and legal issues.

Demoralization is a state of low morale and poor coping that is being increasingly recognized in stressful circumstances, such as illness. Meta-analyses show prevalence of 30% in the medically and 50% in the mentally ill. A brief structured diagnostic interview is needed to assess for and diagnose demoralization.The Demoralization Interview (DI) was designed from items of the Demoralization Scale-II (DS-II) and common items used in other clinical interviews. The resultant 26 items were administered to 264 patients with serious progressive medical illnesses, together with the DS-II, measures of depression, anxiety, and quality of life. Rasch analysis was used to co-calibrate the DI against the DS-II. Sensitivity, specificity, and area under the receiver operating characteristics curve (AUROC) were assessed. Concurrent validation was conducted against measures of anxiety, depression, and quality of life.A 14-item Demoralization Interview (DI) with a diagnostic threshold of 6 symptoms generated sensitivity of 78.0%, specificity of 90.9%, and AUROC of 0.84 against the DS-II. Unidimensionality was indicated, with a Cronbach's alpha of 0.81. For respondents with 6 or more symptoms on the DI, 98% recognized a current stressor and 66% described significant distress or functional impairment. Demoralized respondents carried significantly lower quality of life, higher physical disability, and higher depressive and anxiety symptoms.The DI has good reliability and validity, with a threshold of 6 symptoms supporting a diagnosis of demoralization. It could be used as a stand-alone diagnosis, or as a specifier for adjustment disorder or depression.

Background Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s. Methods This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. Conclusion We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study’s findings will assist with further refinement of the VDST and planning for a future multisite study. Trial registration Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910. Registered 12 October 2020. Retrospectively registered.

Pastoral and spiritual care are important dimensions of the care of patients with advanced cancer in Australian palliative care. This chapter examines the perceptions of 271 patients and 109 caregivers about the place of spirituality/religion in their lives, whether it supported coping, their level of spiritual well-being, and the impact of spiritual support from hospitals and local communities. A Spiritual Concerns Checklist was developed and validated to screen for unidentified spiritual concerns. Two-thirds of the respondents considered spirituality important to them and one-third unimportant; yet over three-quarters of them viewed spiritual care as an appropriate service to provide, and two-thirds reported at least one spiritual concern. These findings suggest that the concept of “hospitality” provides an ethos of care and routine screening for spiritual concerns is an important element of spiritual care. Together, they respectfully convey humanistic medicine based on person- and family-centered care. These dimensions of care are suitable for the increasingly multicultural and secular Australian society.

ObjectiveDemoralization is prevalent in patients with life-limiting chronic illnesses, many of whom reside in rural areas. These patients also have an increased risk of disease-related psychosocial burden due to the unique health barriers in this population. However, the factors affecting demoralization in this cohort are currently unknown. This study aimed to examine demoralization amongst the chronically ill in Lithgow, a town in rural New South Wales, Australia, and identify any correlated demographic, physical, and psychosocial factors in this population.MethodA cross-sectional survey of 73 participants drawn from Lithgow Hospital, the adjoining retirement village and nursing home, assessing correlating demographic, physical, psychiatric, and psychosocial factors.ResultsThe total mean score of the DS-II was 7.8 (SD 26.4), and high demoralization scores were associated with the level of education (p = 0.01), comorbid condition (p = 0.04), severity of symptom burden (p = p = p = Significance of resultsPrevalence of demoralization was high in this population. In line with the existing literature, demoralization was associated with the level of education, symptom burden, and psychological distress, demonstrating that demoralization is a relevant psychometric factor in rural populations. Further stratification of the unique biopsychosocial factors at play in this population would contribute to better understanding the burdens experienced by people with chronic illness in this population and the nature of demoralization.

Background The integration of palliative care into routine cancer care has allowed for improved symptom control, relationship building and goal setting for patients and families. This study aimed to assess the efficacy of an ambulatory palliative care clinic on improving symptom burden and service outcomes for patients with cancer. Methods A retrospective review of data of cancer patients who attended an ambulatory care clinic and completed the Symptom Assessment Scale between January 2015 and December 2019. We classified moderate to severe symptoms as clinically significant. Clinically meaningful improvement in symptoms (excluding pain) was defined by a ≥ 1-point reduction from baseline and pain treatment response was defined as a ≥ 2-point or ≥ 30% reduction from baseline. Results A total of 249 patients met the inclusion criteria. The most common cancer diagnosis was gastrointestinal (32%) and the median time between the initial and follow-up clinic was 4 weeks. The prevalence of clinically significant symptoms at baseline varied from 28% for nausea to 88% for fatigue, with 23% of the cohort requiring acute admission due to unstable physical/psychosocial symptoms. There was significant improvement noted in sleep (p p = 0.002), wellbeing (p p = 0.028). Despite 18–28% of patients achieving clinically meaningful symptom improvement, 18–66.3% of those with moderate to severe symptoms at baseline continued to have clinically significant symptoms on follow-up. A third of patients had opioid and/or adjuvant analgesic initiated/titrated, with 39% educated on pain management. Goals of care (31%), insight (28%) and psychosocial/existential issues (27%) were commonly explored. Conclusions This study highlights the burden of symptoms in a cohort of ambulatory palliative care patients and the opportunity such services can provide for education, psychosocial care and future planning. Additionally routine screening of cohorts of oncology patients using validated scales may identify patients who would benefit from early ambulatory palliative care.

and purpose: Massage therapy can benefit palliative care inpatients and this intervention could be provided by trained caregivers in this setting. This study aimed to determine the feasibility and acceptance of caregiver massage therapy, to explore patients' and caregivers' experience of massage therapy, and examine staff perspectives about caregiver massage therapy in palliative care.This was a mixed methods, convergent, study design. Inpatient palliative care patients were offered massage provided by a caregiver, following training. Caregiver massage therapy was provided up to five days post training. Patients and caregivers completed self-report measures of satisfaction for the five-day intervention, while caregivers rated massage-related burden and confidence. Healthcare professionals working in inpatient palliative care participated in a focus group, during which enablers and barriers to caregiver massage therapy were explored.Over the three-month recruitment period, 62 participants were available for recruitment. Of these, 23 (37%) consented to caregiver massage. Caregiver burden was highest on day 2 (mean 2.9/5) while confidence was highest on day 4 (mean 4.1/5). Caregivers and patients were satisfied with the massage training sessions, and patients reported perceptions of comfort during subsequent sessions. Staff-identified enablers to caregiver massage therapy included patient symptom improvement and caregiver empowerment but considered caregiver massage potentially burdensome for caregivers.Caregiver massage training is feasible, with a modest acceptance within an inpatient palliative care unit. Enablers of massage therapy in inpatient palliative care were caregiver empowerment, but this model was perceived as potentially burdensome for caregivers by healthcare professionals.

OBJECTIVE Identifying modifiable factors affecting work ability among cancer survivors is important. The primary aim of the present study was to examine the effects of depression and related psychological factors on work ability among breast cancer survivors in Australia. METHODS In this cross-sectional electronic and postal survey, Australian breast cancer survivors were investigated. Work status and conditions before and after cancer treatment were analysed. Work ability was measured using the Work Limitation Questionnaire©-Short Form (WLQ-SF) with its four domains (time management, physical tasks, mental-interpersonal tasks, and output tasks). Three psychological factors were investigated: depression, fear of cancer recurrence, and demoralisation. Sociodemographic and clinical data were also collected. Multivariate regression analysis was used to identify the associations of psychological factors with WLQ-SF. RESULTS Among eligible survivors, 310 (50%) responded to the survey and were analysed. Nearly one third reported their work conditions had changed after cancer treatment. The depressed group reported limited work ability in 35%-44% of the four domains of WLQ-SF, while the non-depressed group reported limited work ability in only 8%-13%. At-work productivity loss was approximately fourfold higher in the depressed group than in the non-depressed group. In multivariate analysis, at-work productivity loss was associated with depression, demoralisation, and past history of anxiety. CONCLUSIONS After breast cancer treatment, work conditions changed toward lower wages and working hours. Depression, demoralisation, and past history of anxiety were associated with lower work ability. Further evaluations of work rehabilitation in breast cancer survivors are warranted.

Background Pancreatic and oesophagogastric (OG) cancers have a dismal prognosis and high symptom burden, with supportive care forming an integral component of the care provided to patients. This study aimed to explore the supportive care experiences of patients and caregivers living with pancreatic and OG cancers in order to identify perceived opportunities for improvement. Methods Semi-structured individual interviews were conducted with people living with pancreatic and OG cancers, and their caregivers, across Victoria, Australia during 2020. Interviews were thematically analysed to identify common themes. Results Forty-one participants were interviewed, including 30 patients and 11 caregivers. Three overarching themes, each with multiple sub-themes, were identified: (i) inadequate support for symptoms and issues across the cancer journey (ii) caregiver’s desire for greater support, and (iii) a multidisciplinary care team is the hallmark of a positive supportive care experience. Generally, those who had access to a cancer care coordinator and/or a palliative care team recounted more positive supportive care experiences. Conclusion Unmet needs are prevalent across the pancreatic and OG cancer journey, with supportive care provided to varying levels of satisfaction. Greater awareness of and access to high-quality multidisciplinary support services is greatly desired by both patients with pancreatic and OG cancer and their caregivers.

ObjectiveMeaning and Purpose (MaP) therapy aims to enhance meaning-based coping through a life review that focuses on the value and worth of the person, key relationships, sources of fulfillment, roles, and future priorities in living life out fully. We sought to test the feasibility and acceptability of a six-session model of MaP therapy against a wait-list control cohort in a pilot study seeking effect sizes on measures of adaptation.MethodWe randomized patients with advanced cancer to MaP therapy or wait-list control, with measures administered at baseline and after 6–8 weeks. Wait-list patients could then crossover to receive therapy, with further measures collected postintervention. Adherence to the manualized model was sustained through weekly supervision and fidelity coding of recorded sessions. We used generalized estimating equations to control for baseline and any correlation of data.ResultFrom 134 eligible participants, 57 (43%) consented, and 40 of 45 (89%) offered therapy completed 6 sessions. Key barriers to consenting patients were poor health (15 refusers and 4 withdrawals) and death intervened in 6 participants. MaP therapy generated adequate effect sizes in posttraumatic growth (new possibilities, appreciation of life, and personal strength) and life attitudes (choices and goal seeking) to permit calculation of power for a formal randomized, controlled trial.Significance of resultsDelivery of this model of existentially oriented therapy is feasible and acceptable to patients. A properly powered randomized controlled trial is justified to examine the efficacy of this intervention.

Background Pancreatic cancer is noted for its late presentation at diagnosis, limited prognosis and physical and psychosocial symptom burden. This study examined associations between timing of palliative care referral (PCR) and aggressive cancer care received by pancreatic cancer patients in the last 30 days of life through a single health service. Method A retrospective cohort analysis of end-of-life (EOL) care outcomes of patients with pancreatic cancer who died between 2012 and 2016. Key indicators of aggressive cancer care in the last 30 days of life used were: ≥1 emergency department (ED) presentations, acute inpatient/intensive care unit (ICU) admission, and chemotherapy use. We examined time from PCR to death and place of death. Early and late PCR were defined as > 90 and ≤ 90 days before death respectively. Results Out of the 278 eligible deaths, 187 (67.3%) were categorized as receiving a late PCR and 91 (32.7%) an early PCR. The median time between referral and death was 48 days. Compared to those receiving early PCR, those with late PCR had: 18.1% (95% CI 6.8–29.4%) more ED presentations; 12.5% (95% CI 1.7–24.8%) more acute hospital admissions; with no differences in ICU admissions. Pain and complications of cancer accounted for the majority of overall ED presentations. Of the 166 patients who received chemotherapy within 30 days of death, 23 (24.5%) had a late PCR and 12 (16.7%) an early PCR, with no association of PCR status either unadjusted or adjusted for age or gender. The majority of patients (55.8%) died at the inpatient palliative care unit. Conclusion Our findings reaffirm the benefits of early PCR for pancreatic cancer patients to avoid inappropriate care toward the EOL. We suggest that in modern cancer care, there can sometimes be a need to reconsider the use of the term ‘aggressive cancer care’ at the EOL when the care is appropriately based on an individual patient’s presenting physical and psychosocial needs. Pancreatic cancer patients warrant early PCR but the debate must thus continue as to how we best achieve and benchmark outcomes that are compatible with patient and family needs and healthcare priorities.

Cancer-induced bone pain (CIBP) can be challenging to manage in advanced cancer. The unique properties of methadone may have a role in refractory CIBP. We aimed to evaluate the analgesic effects of methadone for CIBP when other opioids are ineffective or intolerable.A retrospective study of palliative care inpatients rotated to methadone from another opioid for CIBP over a 4-year period. Primary outcome was ≥ 30% reduction in pain intensity (11-point numeric rating scale) from baseline to completion of methadone rotation (MR). Secondary outcomes were ≥ 50% reduction in pain intensity and changes in long-acting and breakthrough opioid requirements.Ninety-four eligible patients completed MR for the following reasons: poor pain control (72.3%), opioid toxicities (4.3%) or both (23.4%). On completion of MR, 70.2% and 53.2% achieved a ≥ 30% and ≥ 50% reduction in pain respectively, with mean pain intensity score reduced from 5.6 (SD = 2.1) at baseline to 2.6 (SD = 2.5) (p 0.001). Mean calculated daily methadone dose pre-MR was 25.7 mg (SD = 10.9), with 72.3% of patients requiring a lower dose on completion of MR (mean 17.0 mg, SD = 8.5). The mean number of breakthrough opioid analgesia used a day reduced from 3.4 (SD = 2.3) to 1.8 (SD = 1.7) (p 0.001).MR for CIBP may result in reduction in pain intensity, when other opioids are ineffective or intolerable, with patients requiring reduced overall dosing of their long-acting opioid and frequency of breakthrough opioid use.

BackgroundSpiritual 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.MethodsThis 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.ResultsParticipants 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 (pConclusionRespectful 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:Pastoral care (also chaplaincy, spiritual care) assists people to find meaning, personal resources, and connection with self, others, and/or a higher power. Although essential in palliative care, there remains limited examination of what pastoral workers do. This study examined how pastoral workers use and consider the usefulness of art-based modalities.Methods:Qualitative research was used to examine the practice wisdom (tacit practice knowledge) of pastoral workers experienced in using visual arts and music in palliative care. Two focus groups were conducted. Thematic analysis was informed by grounded theory.Results:Six pastoral workers shared information. Three themes emerged. First, pastoral workers use arts as “another tool” to extend scope of practice by assisting patients and families to symbolically and more deeply contemplate what they find “sacred.” Second, pastoral workers’ art affinities inform their aims, assessments, and interactions. Third, pastoral workers perceive that art-based modalities can validate, enlighten, and transform patients and families through enabling them to “multisensorially” (through many senses) feel recognized, accepted, empowered, and/or close to God. Key elements involved in the work’s transformative effects include enabling beauty, ritual, and the sense of “home” being heard, and legacy creation.Discussion and Conclusion:Pastoral workers interpret that offering art-based modalities in palliative care can help patients and families to symbolically deal with painful memories and experiences, creatively engage with that deemed significant, and/or encounter a sense of transcendence. Training in generalist art-based care needs to be offered in pastoral education.

Demoralization, a state of lowered morale and poor coping, has a prevalence of 13-18% among patients with advanced cancer. We surveyed clinicians' perspectives of the utility of "with demoralization" as a diagnostic specifier for adjustment and depressive disorders.Using comparative clinical vignettes in a field survey, clinicians from a range of disciplines were asked their perception of the utility of diagnosis and treatment options. Response frequencies were compared using Cochran's Q and McNemar's tests, with sensitivity and specificity rated against expert rankings of diagnosis. Analysis of variance and paired t-tests examined significant differences in ratings of utility.Vignettes were assessed by 280 clinicians; 77% supported utility of the category 'adjustment disorder with demoralization' compared to 33% supporting 'adjustment disorder with anxiety' (McNemar test, p0.001), while 83% supported the utility of 'with demoralization' for major depressive episode, matching 83% perceiving utility for 'with melancholia.' Sensitivity and specificity ratings were 77% and 94% for adjustment disorder with demoralization and 83% and 91% for major depression with demoralization.Clinicians perceived the specifier 'with demoralization' to deepen diagnostic understanding, treatment choice, and ability to communicate with clinicians and patients, particularly for the category of adjustment disorder with demoralization.

Background:Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the sacred or important and may support caregiver well-being.Aim:To examine caregivers’ spirituality, religiosity, spiritual well-being, and views on spiritual/religious support.Design:A mixed-methods study across 4 Australian sites, recruiting caregivers of patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team developed and adapted questions examining religion/spirituality’s role and support and views on hospitals supporting spiritual/religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12).Results:One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores ( P < .001). Spirituality was very important to 24.5%, religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed ( P = .005) and meditated ( P = .006) more following patients’ diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being ( P < .001). Hospitals supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them (n = 32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in supporting spiritual care.Conclusions:Hospital-based spiritual care providers should seek to identify those who seek pastoral or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist requirements of the caregiver community are met.

Palliative sedation is the intentional use of sedatives to manage refractory symptom(s), such as pain and/or terminal restlessness. This case report describes the successful use of propofol, an ultra-fast-acting anaesthetic agent commonly used for anaesthesia induction and maintenance to manage refractory agitated delirium in an acute inpatient palliative medicine setting.

Context Spiritual care refers to practices and rituals addressing spiritual/religious concerns. It supports coping with loss and finding hope, meaning, and peace. Although integral to palliative care, its implementation is challenging. Objective To understand an Australian cohort of patients' and caregivers' perspectives about experiencing and optimizing spiritual care in the context of advanced illness. Methods Patients and caregivers of patients with ≤12 month prognosis were recruited from a broader spiritual study via criterion sampling and agreed to opt-in interviews. Participants from an Australian, metropolitan health service received a spiritual care definition and were interviewed. Transcripts were analyzed using qualitative description. Results 30 patients (17 male; mean age 70 years) and 10 caregivers (six male; mean age 58.9 years) participated. 27 identified as Christian, and 10 had no religion. Participants described multifaceted and contested beliefs about spirituality. Many queried the tangibility of spirituality, but all valued respectful staff who affirmed personhood, that is, each individual's worth, especially when care exceeded expectations. They also resonated with positive organizational and environmental tones that improved holistic well-being. Participants stressed the importance of the hospital's welcoming context and skilled care, which comforted and reassured. Conclusion Although many patients and caregivers did not resonate with the term “spiritual care,” all described how the hospital's hospitality could affirm their values and strengthen coping. The phrase “spiritual care and hospitality” may optimally articulate and guide care in similar, pluralist inpatient palliative care contexts, recognizing that such care encompasses an interplay of generalist and specialist pastoral care staff and organizational and environmental qualities.

BackgroundWhile studies in palliative care use measures of spirituality and religious belief, there have been few validation studies of a screening tool that identifies unmet spiritual needs.MethodsA multidisciplinary research team developed and examined the usefulness, reliability and validity of a 17-item Spiritual Concerns Checklist (SCC) as a screening tool for unmet spiritual needs. A cohort of patients recruited from three palliative care services in Sydney and Melbourne, Australia completed anonymous questionnaires. Factor structure and item response theory were used to examine its properties; concurrent validity employed the Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being Scale (FACIT-Sp-12).ResultsAmong 261 patients, while only 15% directly sought spiritual care, nearly 62% identified at least one spiritual concern. Existential needs (fear of the dying process 32%; loss of control 31%), regret (20%), need for forgiveness (17%), guilt (13%), loss of hope (13%) and meaning (15%) were prominent concerns. Eleven concerns were present for more than 10% of the participants and 25% of religiously orientated participants expressed >4 concerns. The 17-item SCC was unidimensional, with satisfactory reliability. Concurrent validity was evident in the reduced sense of meaning and peace on the FACIT-Sp-12.ConclusionThis preliminary Rasch analysis of the newly developed SCC has demonstrated its usefulness, reliability and validity. Our findings encourage refinement and ongoing development of the SCC with further investigation of its psychometric properties in varying populations.

Objective We aimed to specifically examine patients’ and caregivers’ perspectives about the use of the vignette technique (VT) integrating clinical scenarios, as a potential tool for facilitating advance care planning (ACP) discussions. Methods Secondary analysis of data from three studies that incorporated the VT, focusing on statements specific to use of the VT and using a qualitative descriptive design informed by grounded theory. Results Data from 85 participants were analyzed. Participants varied in their personal identification with scenarios, with caregivers being more accurate. Scenarios prompted consideration and participation in ACP discussions, sometimes steering conversations in directions that participants were ready to consider. However, scenarios also risked evoking distress in participants who may have chosen to avoid discussions. Conclusions For some patients, scenarios of possible clinical outcomes may provide a neutral platform to promote ACP conversations in a non-threatening manner and allow for exploration of ACP domains to greater depth. Practice implications Vignettes may be used in staff training through role-play or case discussions; as part of face-to-face interventions to improve knowledge and information processing and to facilitate the initiation of sensitive conversations. Its use in audio-visual formats may further enhance end-of-life dialogue and warrants further consideration.

BACKGROUND The Demoralization Scale (DS) was initially validated in 2004 to enable the measurement of demoralization in patients with advanced cancer. Subsequent shortcomings indicated the need for psychometric strengthening. Here, the authors report on the refinement and revalidation of the DS to form the DS-II, specifically reporting the scale's internal validity. METHODS Patients with cancer or other progressive diseases who were receiving palliative care (n = 211) completed a revised version of the 24-item DS and a measure of symptom burden (the Memorial Symptom Assessment Scale). Exploratory factor analysis and Rasch modeling were used to evaluate, modify, and revalidate the scale, providing information about dimensionality, suitability of response format, item fit, item bias, and item difficulty. Test-retest reliability was examined for 58 symptomatically stable patients at a 5-day follow-up. RESULTS Exploratory factor analysis supported a 22-item, 2-component model. Separate Rasch modeling of each component resulted in collapsing the response option categories and removing 3 items from each component. Both final 8-item subscales met Rasch model expectations and were appropriate to sum as a 16-item total score. The DS-II demonstrated internal consistency and test-retest reliability (Meaning and Purpose subscale: α = .84; intraclass correlation [ICC] = 0.68; Distress and Coping Ability subscale: α = .82; ICC = 0.82; total DS: α = .89; ICC = 0.80). CONCLUSIONS The DS-II is a 3-point response, self-report scale comprising 16 items and 2 subscales. Given its revalidation, psychometric strengthening, and simplification, the DS-II is an improved and more practical measure of demoralization for research and clinical use. External validation of the DS-II will be reported subsequently. Cancer 2016. © 2016 American Cancer Society.

While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes. This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants’ existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre. Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61–91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants’ attitudes and their written document congruence were limited, but advance care planning was seen as helpful. This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.

As Catholic healthcare organizations form a substantive part of healthcare delivery in the USA and Australia, ethical standards for Catholic health care were developed to guide practice. This study examined junior staff’s understanding of Catholic ethics. Using a qualitative descriptive design, we recruited 22 medical and nursing staff to interviews/focus groups. Though Catholic ethics seldom informed ethical approaches, the principles were acknowledged as being useful to support development of confident and respectful care approaches. Findings provide early insights into challenges faced in considering implementation of ethical codes across both secular and religious healthcare organizations, suggesting that a more creative and pastoral approach to dialoguing and implementing Catholic ethics is required.

Context Accurate prognostication is important in oncology and palliative care. A multidisciplinary approach to prognostication provides a novel approach, but its accuracy and application is poorly researched. In this study, we describe and analyze our experience of multidisciplinary prognostication in palliative care patients with cancer. Objectives To assess our accuracy of prognostication using multidisciplinary team prediction of survival (MTPS) alone and within the Palliative Prognostic (PaP) Score. Methods This retrospective study included all new patients referred to a palliative care consultation service in a tertiary cancer center between January 2010 and December 2011. Initial assessment data for 421 inpatients and 223 outpatients were analyzed according to inpatient and outpatient groups to evaluate the accuracy of prognostication using MTPS alone and within the PaP score (MTPS-PaP) and their correlation with overall survival. Results Inpatients with MTPS-PaP group A, B, and C had a median survival of 10.9, 3.4, and 0.7 weeks, respectively, and a 30-day survival probability of 81%, 40%, and 10%, respectively. Outpatients with MTPS-PaP group A and B had a median survival of 17.3 and 5.1 weeks, respectively, and a 30-day survival probability of 94% and 50%, respectively. MTPS overestimated survival by a factor of 1.5 for inpatients and 1.2 for outpatients. The MTPS-PaP score correlated better than MTPS alone with overall survival. Conclusion This study suggests that a multidisciplinary team approach to prognostication within routine clinical practice is possible and may substitute for single clinician prediction of survival within the PaP score without detracting from its accuracy. Multidisciplinary team prognostication can assist treating teams to recognize and articulate prognosis, facilitate treatment decisions, and plan end-of-life care appropriately. PaP was less useful in the outpatient setting, given the longer survival interval of the outpatient palliative care patient group.

Background: Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff’s experiences and adaptations when change occurs within palliative care services. Aim: To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. Design: Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. Setting/participants: A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. Results: Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p Conclusion: Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories.

Background: Death anxiety is a common issue in adult patients with advanced cancer and can have a large impact on quality of life and end-of-life care. Interventions are available to assist but are scarcely used in everyday practice. Aim: To assess quantitative studies on interventions for adult patients with advanced cancer suffering from death anxiety. Data sources: MEDLINE, PsycINFO, Embase and CINAHL were searched to identify quantitative or mixed studies on death anxiety or relatable existential intervention studies in advanced cancer patients published from 1990 to December 2016. Two reviewers independently screened titles and abstracts and assessed relevant studies for eligibility. Data were then extracted from included studies for analysis. Results: Nine unique quantitative studies were identified, including five randomised controlled trials, involving a total overall of 1179 advanced cancer patients. All studies were psychotherapeutic in nature and centred on existential themes such as meaning, dignity, relationships and spiritual well-being. The therapies investigated shared overlapping themes but varied in duration, therapist experience, training required and burden on patient. Heterogeneity of studies and measures prevented determination of an overall effect size. Conclusion: Interventions were identified for this clinical scenario of death anxiety in patients with advanced cancer. Therapies of short duration incorporating spiritual well-being and those evoking a sense of meaning were claimed to be the most beneficial, despite lacking rigorous statistical analysis. More high-quality studies with tailored outcome measures are required to fully evaluate the most effective interventions for death anxiety in patients with advanced cancer.

Context Cancer caregivers have important roles in delivering practical, emotional, and end-of-life support to patients; however, they express multiple unmet needs, particularly information on future care planning. Early regular communication and decision making may improve access to timely information, alleviate anxiety, reduce uncertainty, and improve coping strategies. Objectives This study examines how cancer caregivers view advance care planning (ACP) to inform an ACP program in an Australian cancer center. Methods This study used a qualitative descriptive design with grounded theory overtones. Eighteen caregivers of patients from lung and gastrointestinal tumor streams participated in focus groups or semistructured interviews, which incorporated the vignette technique. Results Caregivers believe that, although confronting, ACP discussions can be helpful. Conversations are sometimes patient initiated, although caregivers may intend to sensitively broach conversations over time. Findings highlight the impact of caregiver hierarchies, adaptive family decision-making styles, and complex cultural influences on decision making. Some caregivers may develop subsidiary care intentions, based on "knowing" or overriding patients' desires. Hindrances on caregivers supporting patients' ACPs include limited information access, patient or caregiver resistance to engage in conversations, and ACPs association in oncology with losing hope. Many caregivers wanted professional support and further opportunities to obtain information, develop subsidiary plans, and help patients engage in ACP discussions. Conclusion Findings highlight the influence of cancer caregivers and family dynamics over ACP decisions and actualization of future care plans. A patient- and family-centered care approach to ACP, promoting shared decision making and caregiver support, is recommended. Given that caregivers may override and, plausibly, misinterpret patients' desires, caregivers' subsidiary planning warrants further investigation.

BACKGROUND: Evidence supports music-based oncologic support interventions including music therapy. By comparison, little is understood about music-based self-care. This meta-ethnography examined five published qualitative studies to extend understanding of music's relevance, including helpfulness, for people affected by cancer; including children, adolescents, and adults with cancer, carers, and the bereaved. OBJECTIVE: To improve understanding of music's broad relevance for those affected by cancer. METHODS: Meta-ethnography strategies informed the analysis. Five studies were synthesized that included 138 participants: 26 children and 28 parents of children with cancer; 12 adolescents and young adults with cancer; 52 adults with cancer; 12 carers; and 8 bereaved. Studies' category and thematic findings were compared and integrated into third-order interpretations, and a line of argument. Perspectives from the five studies that illuminated the line of argument were developed. RESULTS: Music usage can remain incidental, continue normally, and/or change because of cancer's harsh effects. Music can be a lifeline, support biopsychosocial and spiritual well-being, or become elusive, that is, difficult to experience. Music helps or intrudes because it extends self-awareness and social connections, and prompts play, memories, imageries, and legacies. Music therapists may help patients and carers to recover or extend music's helpful effects. CONCLUSIONS: Cancer care can be improved through offering music-based resources/services, which give cancer patients and carers opportunities to extend music usage for personal support and, for carers, to support patients. Music therapists can advocate for such resources and educate health professionals about assessing/recognizing when patients' and carers' changed music behaviors signify additional support needs.

Music has historically aided health and loss-adaptation, however, cancer patients’ experience of music for self-care is not well understood. This study examines adult cancer patients’ views about music’s role before and after diagnosis. Constructivist approach, with grounded theory informed design using convenience, snowball and theoretical sampling. Patients from Australian metropolitan cancer and hospice settings completed demographic questionnaires and participated in semi-structured interviews. Qualitative inter-rater reliability was applied. Fifty-two patients reported comparable time spent experiencing music pre-post diagnosis. Music may remain incidental; however, many patients adapt music usage to ameliorate cancer’s aversive effects. Patients often draw from their musical lives and explore unfamiliar music to: remain connected with pre-illness identities; strengthen capacity for enduring treatment, ongoing survival (even when knowing “you’re going to die”), or facing death; reframe upended worlds; and live enriched lives. Patients can ascribe human or physical properties to music when describing its transformative effects. Familiar lyrics maybe reinterpreted, and patients’ intensified emotional reactions to music can reflect their threatened mortality. Sometimes music becomes inaccessible, elusive, and/or intensifies distress and is avoided. Families’, friends’ and professionals’ recognition of patients’ altered musical lives and music-based suggestions can extend patients’ use of music for self-care. Health professionals can support patients by inquiring about their music behaviours and recognising that altered music usage may signify vulnerability. Although commonly recommended, hospital concerts and music broadcasts need sensitive delivery. Patients’ preferred music should be available in diagnostic, treatment and palliative settings because it can promote endurance and life enrichment.

While adolescent and young adult (AYA) oncology is recognized as a distinct specialty, there remains a paucity of literature documenting symptomatology in this cohort. This study aimed to identify the prevalence, severity, and mechanism of pain and other symptoms in AYA patients referred to a palliative care service in a specialist Australian cancer center.A retrospective design analyzed the case file data of 33 eligible AYA patients aged 15-25 years old at diagnosis and two randomly selected control groups of patients25 years old: unmatched and matched for diagnosis and sex. All cases were referred to the palliative care service between July 2009 and June 2012. Descriptive statistics, analysis of Edmonton Symptom Assessment Scale (ESAS) and Edmonton Classification System of Cancer Pain (ECS-CP) data, and non-parametric tests were performed.The most common malignancies among the AYA patients were sarcoma and hematological cancers. All AYA patients reported pain syndrome on the ECS-CP compared with 85% of the matched controls (p=0.018). An age group effect was found for mechanisms of pain (p=0.035). A trend toward more neuropathic pain among AYA cases was also found (59% vs. 39%). The most common ESAS symptoms in AYAs were pain (91%), diminished well-being (76%), fatigue (75%), and decreased appetite (67%).AYA cancer patients appear to experience a unique symptom profile with high symptom prevalence and complexity. Further research is warranted to identify determinants and inform integration of supportive and palliative care services for this unique patient cohort.

The recently refined Demoralization Scale-II (DS-II) is a 16-item, self-report measure of demoralization. Its 2 factors-Meaning and Purpose and Distress and Coping Ability-demonstrate sound internal validity, including item fit, unidimensionality, internal consistency, and test-retest reliability. The convergent and discriminant validity of the DS-II with various measures is reported here.Patients who had cancer or other progressive diseases and were receiving palliative care (n = 211) completed a battery of questionnaires, including the DS-II and measures of symptom burden, quality of life, depression, and attitudes toward the end of life. Spearman ρ correlations were determined to assess convergent validity. Mann-Whitney U tests with calculated effect sizes were used to examine discriminant validity and establish the minimal clinically important difference (MCID). Cross-tabulation frequencies with chi-square analyses were used to examine discriminant validity with major depression.The DS-II demonstrated convergent validity with measures of psychological distress, quality of life, and attitudes toward the end of life. It also demonstrated discriminant validity, as the DS-II differentiated patients who had different functional performance levels and high/low symptoms, with a difference of 2 points between groups on the DS-II considered clinically meaningful. Furthermore, discriminant validity was demonstrated, as comorbidity with depression was not observed at moderate levels of demoralization.The DS-II has sound psychometric properties and is an appropriate measure of demoralization. Given its structural simplicity and brevity, it is likely to be a useful tool in meaning-centered therapies. Cancer 2016;122:2260-7. © 2016 American Cancer Society.

Music therapists endeavour to understand music’s significance for people who are mourning unfulfilled hopes and a life once lived; who are trying to deal with uncertainty, altered identities, saying farewells, or impending death. Through music-based interventions in therapeutic relationships, music therapists extend the opportunities for music to enable and express mourning which can be congruent with helpful emotional release and coping. Participants are assisted to find comfort and fellowship through identifications with lyrics and sonorities, and the improved expressive capacity offered in music. Expanded awareness and renewed identities can occur through music-based counseling, imagery, improvisation, and song writing. Decedents’ legacies from music therapy may help their mourners to continue and rework bonds with them in bereavement. Such legacies include song recordings, and visual, kinesthetic, and sound memories of shared music therapy sessions.

Background Advance care planning (ACP) is a process whereby values and goals are sensitively explored and documented to uphold patients’ wishes should they become incompetent to make decisions in the future. Evidenced-based, effective approaches are needed. This study sought to assess the feasibility and acceptability of an ACP intervention informed by phase 1 findings and assessed the suitability of measures for a phase 3 trial. Methods Prospective, longitudinal, mixed methods study with convenience sampling. A skilled facilitator conducted an ACP intervention with stage III/IV cancer patients and invited caregivers. It incorporated the vignette technique and optional completion/integration of ACP documents into electronic medical records (EMR). Quantitative and qualitative data were collected concurrently, analysed separately, and the two sets of findings converged. Results Forty-seven percent consent rate with 30 patients and 26 caregivers completing the intervention. Ninety percent of patient participants had not or probably not written future care plans. Compliance with assessments was high and missing responses to items low. Small- to medium-sized changes were observed on a number of patients and caregiver completed measures, but confidence intervals were typically wide and most included zero. An increase in distress was reported; however, all believed the intervention should be made available. Eleven documents from nine patients were incorporated into EMR. ACP may not be furthered because of intervention inadequacies, busy lives, and reluctance to plan ahead. Conclusions In this phase 2 study we demonstrated feasibility of recruitment and acceptability of the ACP intervention and most outcome measures. However, patient/family preferences about when and whether to document ACP components need to be respected. Thus flexibility to accommodate variability in intervention delivery, tailored to individual patient/family preferences, may be required for phase 3 research. Electronic supplementary material The online version of this article (doi:10.1186/s12904-015-0023-1) contains supplementary material, which is available to authorized users.

The aim was to enquire qualitatively into the phenomenon of the moment of death at home as experienced by the lay carer. Using a purposeful sampling strategy, rural and urban families were identified in the mid-west of Ireland. Semi-structured interviews were conducted with the main carer 2 to 21 days (average 10 days) after the death. The proximity of the interviews to the death was a unique aspect of the study. Twenty-two families were recruited with 10 completing the interviews which were analysed using a framework approach of grounded theory. The first of three major themes describes the experience of the moment of death with particular reference to breathing and mystery. The second theme of relationship encompasses the characteristics of the carer, gender, humour, and the patient's personality. Finally, the role of the professional as guide is explored. This is the experience of the moment of death as recounted by 10 families. Our findings bring the deathbed scene to our clinical and concept...

Introduction: Prescribing practice in hospice/palliative care is largely extrapolated from other areas of clinical practice, with few studies of net medication effects (benefits and harms) in hospice/palliative care to guide prescribing decisions. Hospice/palliative care patients differ in multiple ways from better studied participant groups, hence the applicability of studies in other participant groups is uncertain. Haloperidol, a butyrophenone derivative and dopamine antagonist, is commonly prescribed for nausea, vomiting, and delirium in hospice/palliative care. Its frequent use in delirium occurs despite little evidence of the effect of antipsychotics on the untreated course of delirium. The aim of this study was to examine the immediate and short-term clinical benefits and harms of haloperidol for delirium in hospice/palliative care patients. Method: A consecutive cohort of participants from 14 centers across four countries who had haloperidol commenced for delirium were recruited. Data were collected at three time points: baseline, 48 hours (clinical benefits), and day 10 (clinical harms). Investigators were also able to report clinical harms at any time up to 14 days after it was commenced. Results: Of the 119 participants included, the average dose was 2.1 mg per 24 hours; 42 of 106 (35.2%) reported benefit at 48 hours. Harm was reported in 14 of 119 (12%) at 10 days, the most frequent being somnolence (n=11) and urinary retention (n=6). Seven participants had their medication ceased due to harms (2 for somnolence and 2 for rigidity). Approximately half (55/119) were still being treated with haloperidol after 10 days. Conclusion: Overall, 1 in 3 participants gained net clinical benefit at 10 days. © Copyright 2013, Mary Ann Liebert, Inc. 2013.

The competent management of pain in patients with advanced cancer draws upon in-depth knowledge of cancer and its complications, diagnostic acumen, expertise in the administration of analgesics, and an understanding of a patient in their entirety. Patients with advanced prostate cancer are now living longer with multiple chronic symptoms pain, which can be the cause of much distress for both patients and their families.

Although advance care planning (ACP) is recognised as integral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients’ unpredictable disease trajectories and equivocal treatment options, a disease-specific ACP model may be necessary. This study examines how Australian cancer patients consider ACP. Responses will inform the development of an Australian Cancer Centre’s ACP programme. A constructivist research approach with grounded theory design was applied. Eighteen adults from lung and gastro-intestinal tumour streams participated. Participants first described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated. Participants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components (medical enduring power of attorney, statement of choices, refusal of treatment certificate, and advanced directive). Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers. Findings endorse the value of routinely, though sensitively, discussing ACP with cancer patients at various time points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.