Facing uncertainty - Pilot testing of a palliative prognostic index training with hospital aged care assessment teams.

BACKGROUND: Prognostic avoidance can delay discussions about older hospital patients' life expectancy. This pilot study examined the effects of a prognostic training program on hospital clinicians' knowledge and confidence in identifying older patients at risk of dying. METHODS: Fifty-seven clinicians from aged care assessment teams at two Australian hospitals were introduced to the Palliative Prognostic Index, a 5-item checklist indicating prognoses between 3 and 6 weeks. Mixed-methods training evaluation included pre-post-training surveys and semi-structured interviews, conducted three months post-training. RESULTS: Clinicians used a combination of experience, knowledge, and intuition as strategies to generate prognoses. Allied health staff relied on intuition more often than medical and nursing staff. Prognostic tools were rarely used. Pre-post-training comparisons showed significant improvements in clinicians' knowledge and confidence in identifying signs of dying, particularly amongst allied health. Follow-up interviews highlighted advantages and challenges of using prognostic tools. Recommendations are made for addressing these.

Quality of life and loneliness post-bereavement: Results from a nationwide survey of bereaved older adults.

Older people experience bereavements more often than any other age group. National survey data collected across Australia from 633 bereaved adults aged 65+ years showed that 21% met the criteria for prolonged grief. Their quality of life was significantly lower and loneliness significantly higher compared to older people in the general population. Risk factors for the low quality of life and high loneliness post-bereavement included being female, experiencing the death of a partner, and being the full-time carer of the deceased. Time since bereavement, expectedness, and cause of death were not significantly associated with quality of life and loneliness.

The ostrich approach - Prognostic avoidance, strategies and barriers to assessing older hospital patients' risk of dying.

BACKGROUND: Predicting older patients' life expectancy is an important yet challenging task. Hospital aged care assessment teams advise treating teams on older patients' type and place of care, directly affecting quality of care. Yet, little is known about their experiences with prognostication. METHODS: Twenty semi-structured interviews were conducted with seven geriatricians/ registrars, ten nurses and three allied health staff from aged care assessment teams across two hospitals in Melbourne, Australia. Data were analysed thematically. RESULTS: To generate prognoses, clinicians used analytical thinking, intuition, assessments from others, and pattern matching. Prognostic tools were an underutilised resource. Barriers to recognition of dying included: diffusion of responsibility regarding whose role it is to identify patients at end-of-life; lack of feedback about whether a prognosis was correct; system pressures to pursue active treatment and vacate beds; avoidance of end-of-life discussions; lack of confidence, knowledge and training in prognostication and pandemic-related challenges.

Experiences of health professionals treating women diagnosed with cancer during pregnancy and proposals for service improvement.

OBJECTIVE: To examine the experiences, needs, and perceptions of health professionals(HPs) treating women diagnosed with cancer during pregnancy(gestational cancer, GC). METHODS: Interviews were undertaken with Australian HPs who had treated women diagnosed with GC over the previous five years. HPs were recruited via social media, and professional and community networks. Questions focussed upon HPs' confidence caring for these women, whether current guidelines/training met their needs, psychological impacts of care provision, and service gaps. Interview data were analysed thematically. RESULTS: Twenty-seven HPs were interviewed; most were oncology HPs(22/27) with experience caring for women with gestational breast cancer and 13 had a breast-specific clinical focus (e.g. breast surgeon). Many were currently treating women with GC(48%) or had in the last 6-12 months(29.6%). Four themes were identified: A clinically complex case, Managing multi-disciplinary care, Centralised resources for health professionals, and Liaison, information and shared experiences for women. HPs found this population personally challenging to treat. They reported initial uncertainty regarding treatment due to infrequent exposure to GC, limited resources/information, and the need to collaborate with services with which they did not usually engage. Solutions offered include centralised resources, clinical liaison/care coordinators, and connecting women with GC with peer support. CONCLUSIONS: HPs perceived women with GC as a vulnerable, complex population and experienced challenges providing comprehensive care; particularly when treatment was delivered at geographically separated hospitals. Systemic changes are needed to optimise comprehensive care for these women. Their insights can guide the development of more integrated cancer and obstetric care, and better HP support.

'Unprepared for the depth of my feelings' - Capturing grief in older people through research poetry.

BACKGROUND: Older people are more likely to experience bereavements than any other age group. However, in healthcare and society, their grief experiences and support needs receive limited attention. Through innovative, arts-based research poetry, this study aimed to capture older people's bereavement stories and the effects of grief on their physical and mental health. METHOD: Semi-structured in-depth interviews with 18 bereaved older adults were analysed using thematic and poetic narrative analysis, following a five-step approach of immersion, creation, critical reflection, ethics and engagement. RESULTS: Research poems were used to illustrate three themes of bereavement experiences among older adults: feeling unprepared, accumulation of losses and ripple effects of grief. While half of participants reported that the death of their family member was expected, many felt unprepared despite having experienced multiple bereavements throughout their life. Instead, the accumulation of losses had a compounding effect on their health and well-being. While these ripple effects of grief focussed on emotional and mental health consequences, many also reported physical health effects like the onset of a new condition or the worsening of an existing one. In its most extreme form, grief was connected with a perceived increased mortality risk. CONCLUSIONS: By using poetry to draw attention to the intense and often long-lasting effects of grief on older people's health and well-being, this article offers emotional, engaging and immersive insights into their unique bereavement experiences and thereby challenges the notion that grief has an expiry date.

Isolation experienced by women with gestational cancer: could peer support and tailored information be the answer?

Women diagnosed with cancer during pregnancy (gestational cancer) are a small but vulnerable population, with experts suggesting they require greater psycho-social support than either other women with cancer or other pregnant women. However, information on their psychological needs remains sparse. This commentary describes our work exploring the psychological needs of women diagnosed with gestational cancer, areas of unmet need we identified, and our recommendations for future programs and research. We conducted in-depth, semi-structured interviews with 23 Australian women diagnosed with gestational cancer in the preceding 5 years. Our findings depicted a group of women for whom cancer diagnosis and treatment had resulted in a sense of isolation and loneliness. Women reported seeking tailored information about their condition and treatments as well as one-on-one peer support with other gestational cancer survivors, which was challenging for them to access and which existing services struggled to provide. To address these unmet needs, innovative solutions may be necessary. Technology has the potential to connect and match women with one-to-one peer support, and research exploring the efficacy and acceptability of such interventions is required. Creative solutions, such as virtual resource hubs monitored or moderated by experts, would potentially meet the information needs of this group. However, as gestational cancer is relatively rare, the development and evaluation of such interventions would require a collaborative effort across multiple sites, as well as international collaboration and data pooling.

Cancer during pregnancy: A qualitative study of healthcare experiences of Australian women.

OBJECTIVES: To identify features enhancing the quality of healthcare experiences for women with gestational cancer, and explore the impact of the heterogeneous Australian healthcare system on those experiences. METHODS: Semi-structured, qualitative interviews were conducted with women diagnosed with any cancer during pregnancy in the last five years. Recruitment occurred during 2018-2019 via social media and professional, clinical and community networks. Questions related to women's experiences of their healthcare, wellbeing and psychosocial needs. Interviews were analysed thematically. RESULTS: Study participants (n = 23) received treatment in the private sector (n = 10), public sector (n = 8), or both (n = 5). Five interview themes were found: Control over healthcare; Trust in clinicians, hospitals and systems; Coordination of care; An uncommon diagnosis; Holistic, future-oriented care. Women were most likely to have had a positive healthcare experience when (a)care was well-coordinated and adjusted to meet their unique needs/challenges, and (b)women perceived their care went beyond their immediate medical needs and encompassed future psychosocial wellbeing, including preparation for postpartum challenges. CONCLUSION: Existing 'usual care' in the public and/or private sector for both the pregnancy and the cancer is insufficient to meet these women's needs. Prioritising psychological wellbeing including psychosocial needs, and communication and planning around fertility and postnatal challenges are essential for this population.

End-of-life care for older first-generation migrants: a scoping review.

BACKGROUND: The unprecedented scale of contemporary migration across countries over the last decade means that ageing and dying occur in a more globalised, multicultural context. It is therefore essential to explore the end-of-life experiences of older people from migrant backgrounds. METHODS: A scoping review of peer-reviewed articles published in English from 2008 to 2018. Included studies addressed end-of-life preferences, attitudes, values and beliefs of first-generation international migrants who were at least 50 years of age. RESULTS: Fifteen studies met the inclusion criteria for this review, which addressed six key themes: (1) the reluctance among older migrants and their families to talk about death and dying; (2) difficult communication in patient-clinician relationships; (3) the contrast between collectivistic and individualistic norms and its associated end-of-life preferences; (4) limited health literacy in older adults from migrant backgrounds; (5) experiences with systemic barriers like time pressure, inflexibility of service provision and lack of cultural sensitivity and (6) the need for care providers to appreciate migrants' 'double home experience' and what this means for end-of-life decision-making regarding place of care and place of death. DISCUSSION: To respond effectively to an increasingly culturally diverse population, healthcare staff, researchers and policymakers need to invest in the provision of culturally sensitive end-of-life care. Areas for improvement include: (a) increased awareness of cultural needs and the role of family members; (b) cultural training for healthcare staff; (c) access to interpreters and translated information and (d) involvement of older migrants in end-of-life discussions, research and policymaking.

Nurses' knowledge of law at the end of life and implications for practice: A qualitative study.

BACKGROUND: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered. AIM: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief. DESIGN: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique. SETTING/PARTICIPANTS: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia. RESULTS: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief. CONCLUSION: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.

'It all depends!': A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers.

BACKGROUND: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life. AIM: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death. DESIGN: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description. SETTING/PARTICIPANTS: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia. RESULTS: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences. CONCLUSIONS: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

Flares in patients with systemic lupus erythematosus are associated with daily psychological stress.

BACKGROUND: The aetiology of systemic lupus erythematosus (SLE) remains unclear. Clinical observations and a small number of studies performed so far suggest an association between psychological stress and self-reported symptoms of SLE patients. This longitudinal study was designed to investigate whether daily psychological stress is associated with flares in SLE patients, measured by clinical and laboratory parameters. METHODS: Female SLE patients (n = 41) were followed over a period of six months. Daily stress was monitored by a hand-held PC diary programmed with 44 items based on standardized measures and clinical experience. Once every four weeks patients visited the outpatient clinic for medical evaluation. Disease activity was evaluated using the European Consensus Lupus Activity Measurement (ECLAM), laboratory parameters, and intake of steroids. RESULTS: Classification and regression tree (CART) patient-wise analyses revealed that SLE patients with vs. without flares using complement and ECLAM as activity measures show greater negative self-ratings in mood, and social duties (p < 0.01). In addition, mixed model analysis of variance showed that daily hassles with social relationships were significantly associated with flares in SLE measured by an increase in steroid medication >5mg/d (p < 0.01). CONCLUSIONS: These results suggest that psychological stress is associated with flares in SLE. Particularly daily stress with social relationships and social duties may be factors to be related to the course of disease activity in SLE.