Patient and caregiver satisfaction of a palliative care chronic diseases clinic during COVID lockdowns.

OBJECTIVES: To assess the quality assurance of a specialist palliative care clinic focused on chronic diseases and explore the satisfaction and acceptability of the telemedicine model amongst patients and caregivers. METHODS: A cross-sectional 23-item survey was developed by the clinical team, approved by ethics and distributed to patients and caregivers. Data collection ran between September 2021 and February 2022, and SPSS was used for data analysis. Demographics were collected from hospital records. RESULTS: Thirty-five surveys were returned. The cohort had a median age of 82 years, and the most common primary diagnosis was renal failure. Participants rated telemedicine as easier to access than face-to-face appointments due to convenience. Telemedicine was rated highly for future utility, with video consultations being perceived as more useful than telephone consultations. Participants responded overwhelmingly well towards the clinic. DISCUSSION: Findings demonstrated high levels of satisfaction with the Supportive Care Clinic model and for telemedicine. However, logistical challenges and the desire for face-to-face appointments were also identified. The study highlights the importance of offering a range of modalities for patient engagement in healthcare services and suggests that telemedicine should complement, rather than replace, face-to-face consultations. Future investigations should explore patient and caregiver sentiment towards telemedicine platforms alongside patient deterioration.

Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs.

BACKGROUND: Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. AIM: To identify the symptom prevalence and severity experienced by patients with motor neurone disease. Secondary objectives were to examine differences in symptom burden and clusters according to phenotype, functional status, palliative care provision and those in their last months of life. DESIGN: A point prevalence study assessing patient-reported symptoms using a modified IPOS-Neuro assessment tool, incorporating 41 symptom items. SETTING/PARTICIPANTS: Patients with motor neurone disease attending the State-wide Progressive Neurological Disease Service or inpatient unit at Calvary Health Care Bethlehem, Melbourne Australia, from March to December 2021. RESULTS: A total of 102 patients participated, the majority diagnosed with lumber-onset (30.4%), bulbar-onset (28.4%) and cervical-onset (25.5%) phenotypes. Patients experienced a median of 17 symptoms (range 2-32) with a median of 3 symptoms rated as severe/overwhelming (range 0-13). Motor and functional symptoms predominated, with differences in symptom clusters present according to phenotype. Patients had a higher number of severe/overwhelming symptoms if they were accessing palliative care services (p = 0.005), in their last 6 months of life (p = 0.003) and experiencing moderate or severe functional impairment (p < 0.001). CONCLUSIONS: Patients with motor neurone disease report high symptom burden. A validated motor neurone disease-specific symptom assessment tool is needed to accurately assess patients, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.

Perspectives of family-centred care at the end of life during the COVID-19 pandemic: A qualitative descriptive study.

AIM: To explore nurses' and family members' perspectives of family care at the end of life, during restricted visitation associated with the COVID-19 pandemic. BACKGROUND: To minimise the transmission of COVID-19, stringent infection prevention and control measures resulted in restricted hospital access for non-essential workers and visitors, creating challenges for the provision of family-centred care at the end of life. DESIGN: Qualitative descriptive approach based on naturalistic inquiry. METHODS: At a large public hospital in Melbourne, Australia, individual semi-structured interviews were undertaken with 15 registered nurses who cared for patients who died during restricted visitation associated with the COVID-19 pandemic, and 21 bereaved family members. COREQ guidelines informed analysis and reporting. RESULTS: Five themes developed from the data: (i) impact of visitor restrictions, which describes uncertain, ambiguous and arbitrary rules, onerous and inconsistent requirements; (ii) nurse-family communication; (iii) family-centred care and interrupted connections; (iv) well-being and negative emotions; and (v) suggestions for a better way, such as moving away from the black and whiteness of the rules, prioritising communication, compassion and advocacy. CONCLUSIONS: Negative consequences for communication and the patient-family connection at the end of life were felt deeply. The evolving COVID-19 rules that were frequently revised and applied at short notice, and the subsequent consequences for clinical practices and care were felt deeply. RELEVANCE TO CLINICAL PRACTICE: Technology-facilitated communication, innovation and increased resources must be prioritised to overcome the challenges described in this study. A family-centred approach to care and emphasising the patient-family connection at the end of life is fundamental to minimising trauma and distress associated with future public health emergencies. PATIENT OR PUBLIC CONTRIBUTION: Bereaved family members contributed their first-hand experience. Members of the health service's patient experience team ensured the research was conducted in accordance with health service guidelines for patient and public contribution.

Facilitating family needs and support at the end of life in hospital: A descriptive study.

BACKGROUND: Caring for family members of dying patients is a vital component of end-of-life care, yet family members' needs at the end of life may be unmet. AIM: To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life. DESIGN: Descriptive study utilising a retrospective medical record audit. SETTING AND SAMPLE: Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine (n = 50), intensive care (n = 50), inpatient palliative care (n = 50) and aged rehabilitation (n = 50). Data were analysed according to age; under 65-years and 65-years or over. RESULTS: Deceased patients' mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years (p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over (p = 0.040) and social work involvement more likely for those under 65-years (p = 0.002). Pastoral care and bereavement support was low across the whole sample. CONCLUSIONS: Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.

'We couldn't have managed without your team': A collaborative palliative care response to the COVID-19 pandemic in residential aged care.

The global COVID-19 pandemic has challenged healthcare, aged care and palliative care provision in ways previously unimaginable. In Australia, this has been felt particularly amongst our most vulnerable members of society, those residing in residential aged care. Currently representing the majority (75%) of COVID-19 deaths and health-care worker infections, this vulnerable sector has borne the greatest impact. A collaborative response comprising a tertiary hospital palliative care outreach service, residential InReach geriatric service and a community palliative care service effectively delivered comprehensive and timely specialist care to residents infected with COVID-19. Daily videoconferencing rounds were efficient, minimised infection risk and facilitated family members attending virtually during patient assessments and care planning discussions. This model was both reactive and proactive and importantly scalable should further infective outbreaks occur in Australasian residential aged care facilities.

Journey mapping as a novel approach to healthcare: a qualitative mixed methods study in palliative care.

BACKGROUND: Journey mapping involves the creation of visual narrative timelines depicting the multidimensional relationship between a consumer and a service. The use of journey maps in medical research is a novel and innovative approach to understanding patient healthcare encounters. OBJECTIVES: To determine possible applications of journey mapping in medical research and the clinical setting. Specialist palliative care services were selected as the model to evaluate this paradigm, as there are numerous evidence gaps and inconsistencies in the delivery of care that may be addressed using this tool. METHODS: A purposive convenience sample of specialist palliative care providers from the Supportive and Palliative Care unit of a major Australian tertiary health service were invited to evaluate journey maps illustrating the final year of life of inpatient palliative care patients. Sixteen maps were purposively selected from a sample of 104 consecutive patients. This study utilised a qualitative mixed-methods approach, incorporating a modified Delphi technique and thematic analysis in an online questionnaire. RESULTS: Our thematic and Delphi analyses were congruent, with consensus findings consistent with emerging themes. Journey maps provided a holistic patient-centred perspective of care that characterised healthcare interactions within a longitudinal trajectory. Through these journey maps, participants were able to identify barriers to effective palliative care and opportunities to improve care delivery by observing patterns of patient function and healthcare encounters over multiple settings. CONCLUSIONS: This unique qualitative study noted many promising applications of the journey mapping suitable for extrapolation outside of the palliative care setting as a review and audit tool, or a mechanism for providing proactive patient-centred care. This is particularly significant as machine learning and big data is increasingly applied to healthcare.

Examining the role of specialist palliative care in geriatric care to inform collaborations: a survey on the knowledge, practice and attitudes of geriatricians in providing palliative care.

BACKGROUND: The global population is ageing, and rates of multimorbidity and chronic illness are rapidly rising. Given specialist palliative care has been shown to improve overall care and reduce health care costs, how best to provide this care to older people is internationally significant. AIM: To examine the knowledge, attitudes and practices of geriatricians in providing palliative care and working with specialist palliative care services. We also aimed to capture self-reported barriers, confidence and satisfaction in providing palliative care. DESIGN: A prospective cross-sectional study surveying Australasian geriatricians was conducted. SETTING/PARTICIPANTS: This was a voluntary anonymous online survey, distributed to all full members of the Australian and New Zealand Society of Geriatric Medicine. RESULTS: A total of 168 completed responses were received; 58.3% were female and 36.6% had over 20 years of clinical experience. Most geriatricians (85%) reported caring for patients in their last 12 months of life represented a substantial aspect or most of their practice. Geriatricians overwhelmingly believed they should coordinate care (84%) and derived satisfaction from providing palliative care (95%). The majority (69%) believed all patients with advanced illness should receive concurrent specialist palliative care. Regarding knowledge, participants scored an average of 13.5 correct answers out of 18 in a Modified Palliative Care Knowledge Test. CONCLUSIONS: Geriatricians find reward in providing generalist palliative care to their patients; however, potential exists for improved collaborations with specialist palliative care services. An evidence base for geriatric patients who benefit most from specialist palliative care services is needed to improve resourcing, collaborative practice and ultimately palliative care delivery.

Cancer patients' perceptions of palliative care.

PURPOSE: Despite clear benefits of early integration of palliative care (PC) and oncology, concerns remain about negative perceptions of PC. Our aim was to explore current knowledge and perceptions of PC in cancer patients. METHODS: We conducted a prospective, cross-sectional survey. A 16-item questionnaire was distributed to all cancer patients (N = 103) upon admission to the oncology ward of an Australian tertiary academic hospital. Chi-squared test was used to examine for significant factors related to patients' perceptions. RESULTS: Ninety-six patients (93%) completed the questionnaire; 76% had metastatic cancer. We explored the following domains:Experience and knowledge: 76% had heard of PC; 21% had received PC. Self-rated PC knowledge was varied. Forty-five percent believed that PC was only associated with EOLC; those more likely to disagree had received PC services (p = 0.039).Integration of PC and oncology: Majority believed that they could receive oncology care (86%) and anti-cancer treatment (81%) whilst receiving PC. Those who had heard of PC and with better self-rated knowledge were more likely to believe that they could receive concurrent anti-cancer treatment (p = 0.005, p = 0.045, respectively).Feelings: 77% felt comforted with PC involvement; this was significantly associated with older age (p = 0.047) and understanding that oncology (p < 0.005) and anti-cancer treatment (p = 0.013) could continue. However, some felt frightened (40%) and hopeless (29%) about referral to PC. Fifty percent felt more comfortable with referral to 'supportive care' services (versus PC). CONCLUSIONS: Our survey demonstrates reasonable understanding and relatively positive feelings about PC, associated with experience and knowledge. Nonetheless, there is ongoing need for better patient and public education about PC.

Communicating end-of-life care goals and decision-making among a multidisciplinary geriatric inpatient rehabilitation team: A qualitative descriptive study.

BACKGROUND: In geriatric inpatient rehabilitation settings, where the goal is to optimise function, providing end-of-life care can be challenging. AIM: The aim of this study is to explore how end-of-life care goals and decision-making are communicated in a geriatric inpatient rehabilitation setting. DESIGN: The design is a qualitative descriptive design using semi-structured individual and group interviews. SETTING/PARTICIPANTS: This study was conducted in a 154-bed facility in metropolitan Melbourne, Australia, providing geriatric inpatient rehabilitation for older patients; medical, nursing and allied health clinicians, who had cared for an inpatient who died, were recruited. DATA COLLECTION: Participants were interviewed using a conversational approach, guided by an 'aide memoire'. RESULTS: A total of 19 clinicians participated in this study, with 12 interviewed individually and the remaining 7 clinicians participating in group interviews. The typical patient was described as older, frail and with complex needs. Clinicians described the challenge of identifying patients who were deteriorating towards death, with some relying on others to inform them. How patient deterioration and decision-making was communicated among the team varied. Communication with the patient/family about dying was expected but did not always occur, nor was it always documented. Some clinicians relied on documentation, such as commencement of a dying care pathway to indicate when a patient was dying. CONCLUSION: Clinicians reported difficulties recognising patient deterioration towards death. Uncertainty and inconsistent communication among clinicians about patient deterioration negatively impacted team understanding, decision-making, and patient and family communication. Further education for all members of the multidisciplinary team focusing on how to recognise and communicate impending death will aid multidisciplinary teams to provide quality end-of-life care when required.

Percutaneous Sacroplasty for Painful Bone Metastases: A Case Report.

INTRODUCTION: The occurrence of bone metastases is common in patients with advanced cancer. The literature supports percutaneous vertebroplasty and kyphoplasty as minimally invasive procedures to relieve pain and improve quality of life for selected patients with disabling pain from pathological vertebral fractures secondary to bone metastases. CASE: We describe a case of a 71-year-old patient with castrate-resistant metastatic prostate cancer who underwent sacroplasty for painful sacral metastases. The patient had previously been treated with maximally tolerated analgesics and anticancer therapies including systemic anticancer treatments and local radiotherapy. After sacroplasty, he experienced significant pain reduction and improvement in mobility and function. CONCLUSION: This case and recent literature demonstrate positive outcomes of sacroplasty in terms of pain reduction and improved mobility. Further research is warranted to establish the role of such minimally invasive percutaneous procedures for pain management in cancer patients.

'The horse has bolted I suspect': A qualitative study of clinicians' attitudes and perceptions regarding palliative rehabilitation.

BACKGROUND: Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. AIM: To explore palliative medicine physicians' attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. DESIGN: Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. PARTICIPANTS: Australian palliative medicine physicians working in inpatient palliative care units. RESULTS: In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years' experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians' attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. CONCLUSION: A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

Restorative care for palliative patients: a retrospective clinical audit of outcomes for patients admitted to an inpatient palliative care unit.

BACKGROUND: Restorative care in palliative care is a subset of rehabilitation that aims to improve quality of life through restoration or maintenance of physical functions. Outcomes for restorative care programmes delivered by palliative care units have not adequately been assessed. OBJECTIVES: The objectives are to examine the outcomes of a restorative care programme in an inpatient palliative care unit, including discharge destination, performance status changes and length of stay. METHODS: Retrospective clinical audit of consecutive patients admitted to Calvary Health Care Bethlehem in Melbourne, Australia, principally for restorative care from July 2010 to December 2011. RESULTS: 79 admissions met inclusion criteria. Mean age was 76.5 years (SD=11.14) and 43 (54%) were men. 75 (95%) patients had a malignant diagnosis; of these, the majority had lung cancer (24%). 16 patients (20%) were discharged home, 51 (65%) died and 12 (15%) were transferred. Of the patients discharged home, only 6 (38% of those discharged home) improved their performance status. Those discharged home had a significantly shorter length of stay (17 days compared to 39 days; p<0.05). Patients discharged home also had significantly better Australia-modified Karnofsky Performance Status (AKPS) and Resource Utilisation Groups-Activities of Daily Living (RUG-ADL) scores on admission than others (both p<0.05). CONCLUSIONS: The majority of patients referred for restorative care died during admission, with only a minority discharged home. Patients discharged most commonly experienced maintenance and not improvement in performance status. A successful discharge home following restorative care was associated with a shorter length of stay. Implications and recommendations for successful restorative care will be discussed.