Natasha Michael

“A quiet still voice that just touches”: music’s relevance for adults living with life-threatening cancer diagnoses

PurposeMusic 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.MethodsConstructivist 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.ResultsFifty-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.ConclusionHealth 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.

Refinement and revalidation of the demoralization scale: The DS-II—external validity

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.

A mixed method feasibility study of a patient- and family-centred advance care planning intervention for cancer patients

BackgroundAdvance 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.MethodsProspective, 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.ResultsForty-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.ConclusionsIn 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.

Introducing a model incorporating early integration of specialist palliative care: A qualitative research study of staff’s perspectives:

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 < 0.001). While early symptom management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients’ acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model’s faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. 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.

Death anxiety interventions in patients with advanced cancer: A systematic review:

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.

Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people

BackgroundCommunity-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community.MethodsQualitative descriptive research, which included focus groups with older people (55+ years) and older people’s offspring/caregivers living in an Australian city and surrounding rural region. Data was analysed using an inductive and comparative approach. Sampling was both convenience and purposive. Participants responded to web-based, newsletter or email invitations from an agency, which aims to support healthcare consumers, a dementia support group, or community health centres in areas with high proportions of culturally and linguistically diverse community-dwellers.ResultsEight focus groups were attended by a homogenous sample of 15 older people and 27 offspring/caregivers, with 43% born overseas. The overarching theme, ‘shades of grey’: struggles in transition, reflects challenges faced by older people and their offspring/caregivers as older people often erratically transition from independence and capacity to dependence and/or incapacity. Offspring/caregivers regularly struggled with older people’s fluctuating autonomy and dependency as older people endeavoured to remain at home, and with conceptualising “best times” to actualise advance care planning with substitute decision maker involvement. Advance care planning was supported and welcomed, x advance care planning literacy was evident. Difficulties planning for hypothetical health events and socio-cultural attitudes thwarting death-related discussions were emphasised. Occasional offspring/caregivers with previous substitute decision maker experience reported distress related to their decisions.ConclusionsAdvance care planning programs traditionally assume participants are ‘planning ready’ to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people’s advance care planning understanding and management, and also supports offspring/caregivers’ development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people’s decision-making when in the ‘grey zone’, with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person’s lifespan.

Extending Awareness of Catholic Healthcare Ethics Among Junior Clinicians: A Qualitative Study

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.

“Life Within the Person Comes to The Fore”: Pastoral Workers’ Practice Wisdom on Using Arts in Palliative Care:

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.