Real World Experience of Change in Psycho-Existential Symptoms in Palliative Care.

CONTEXT: Psycho-existential symptoms in palliative care are addressed insufficiently. Routine screening, ongoing monitoring and meaningful treatment of psycho-existential symptoms may contribute to the relief of suffering in palliative care. OBJECTIVES: We sought to explore longitudinal change in psycho-existential symptoms following the routine implementation of the Psycho-existential Symptom Assessment Scale (PeSAS) in Australian palliative care services. METHODS: Using a multisite rolling design, we implemented the PeSAS to longitudinally monitor symptoms in a cohort of 319 patients. We assessed change scores for each symptom in groups with mild (≤3), moderate (4-7) and severe (≥8) symptomatology at baseline. We tested significance between these groups and used regression analyses to identify predictors. RESULTS: While one half of patients denied clinically important psycho-existential symptoms, for the remainder, overall, more patients improved than deteriorated. Between 20% and 60% of patients with moderate and severe symptoms improved, while another 5%-25% developed new symptom distress. Patients with severe baseline scores improved significantly more than those with moderate baseline scores. CONCLUSION: As we better recognize through screening patients carrying psycho-existential distress in palliative care programs, there is considerable room for improvement in ameliorating this suffering. Inadequate clinical skills, poor psychosocial staffing or a biomedical program culture may all contribute to inadequate symptom control. Person-centered care necessitates greater attention to authentic multidisciplinary care that ameliorates psycho-spiritual and existential distress.

FAIR in action: Brain-CODE - A neuroscience data sharing platform to accelerate brain research.

The effective sharing of health research data within the healthcare ecosystem can have tremendous impact on the advancement of disease understanding, prevention, treatment, and monitoring. By combining and reusing health research data, increasingly rich insights can be made about patients and populations that feed back into the health system resulting in more effective best practices and better patient outcomes. To achieve the promise of a learning health system, data needs to meet the FAIR principles of findability, accessibility, interoperability, and reusability. Since the inception of the Brain-CODE platform and services in 2012, the Ontario Brain Institute (OBI) has pioneered data sharing activities aligned with FAIR principles in neuroscience. Here, we describe how Brain-CODE has operationalized data sharing according to the FAIR principles. Findable-Brain-CODE offers an interactive and itemized approach for requesters to generate data cuts of interest that align with their research questions. Accessible-Brain-CODE offers multiple data access mechanisms. These mechanisms-that distinguish between metadata access, data access within a secure computing environment on Brain-CODE and data access via export will be discussed. Interoperable-Standardization happens at the data capture level and the data release stage to allow integration with similar data elements. Reusable - Brain-CODE implements several quality assurances measures and controls to maximize data value for reusability. We will highlight the successes and challenges of a FAIR-focused neuroinformatics platform that facilitates the widespread collection and sharing of neuroscience research data for learning health systems.

Improving uptake of advance care planning through education and training in a public hospital geriatric clinic.

OBJECTIVE: Advance care planning (ACP) is an important part of routine medical care. However, Western Australia (WA) consistently demonstrates poor rates of completion. International and interstate ACP programs have previously led to an increase in ACP discussion and documentation. This study aimed at evaluating the effect of a multifaceted intervention on completion of ACP in a geriatric outpatient setting in WA. METHODS: The Plan-Do-Study-Act (PDSA) cycle was used for this audit. The components of the intervention comprised of education and communication skill training, improving access to ACP documents and patient resources. Pre- and post-intervention reviews of documented future care planning discussions were performed and compared. RESULTS: Of the 100 patients audited, there was an absolute increase of 23% (p = 0.02) in any form of future care planning. More specifically, discussions regarding ACP increased by 13% (p = 0.01), Advance Care Directive (ACD) by 23% (p < 0.001), Enduring Power of Attorney (EPA) by 24% (p = 0.02), Enduring Power of Guardianship (EPG) by 31% (p = 0.002), together with a 10% (p = 0.02) increase in the provision of ACP resources to patients. Older patient age (p = 0.02) and abnormal cognitive testing (p = 0.02), but not established dementia, were patient-related factors associated with initiation of ACP discussions. CONCLUSIONS: A simple structured multifaceted intervention improved the uptake of ACP discussions in a hospital geriatric clinic.

Communication skills: simulated patient goals of care workshop for acute care clinicians.

BACKGROUND: Appropriate and timely goals of patient care (GoPC) discussions are associated with improved health outcomes near the end-of-life among patients with serious illness, however, acute care clinicians report a lack of training in conducting GoPC conversations. OBJECTIVES: A half-day GoPC communication workshop for acute care clinicians was delivered and evaluated. Participants were instructed in the use of communication frameworks and practiced skills in clinical scenarios with a simulated patient. METHOD: Expert facilitators guided feedback towards learner identified goals during simulated GoPC discussions. Self-reported confidence in communication skills was measured with a pre-post questionnaire, which was repeated 2 months following the workshop. RESULTS: 50 clinicians completed the workshop and questionnaire. A mean improvement in confidence in communication skills of 35% (p<0.001) was identified following participation, which remained elevated at 2 months (p<0.001). All participants responded that they would recommend the workshop to a colleague, and more than two-thirds went on to share their learnings with other clinicians. CONCLUSION: The use of a simulated patient, communication frameworks and an expert facilitator were associated with durable improvement in confidence in GoPC communication among acute care clinicians. A half-day workshop was feasible and acceptable to participants.

Evaluation of the 'Talking Together' simulation communication training for 'goals of patient care' conversations: a mixed-methods study in five metropolitan public hospitals in Western Australia.

INTRODUCTION: In partnership with Cancer Council Western Australia (WA), the East Metropolitan Health Service in Perth, WA has developed a clinical simulation training programme 'Talking Together' using role play scenarios with trained actors as patients/carers. The aim of the training is to improve clinicians' communication skills when having challenging conversations with patients, or their carers, in relation to goals of care in the event of clinical deterioration. METHODS AND ANALYSIS: A multisite, longitudinal mixed-methods study will be conducted to evaluate the impact of the communication skills training programme on patient, family/carer and clinician outcomes. Methods include online surveys and interviews. The study will assess outcomes in three areas: evaluation of the 'Talking Together' workshops and their effect on satisfaction, confidence and integration of best practice communication skills; quality of goals of patient care conversations from the point of view of clinicians, carers and family/carers; and investigation of the nursing/allied role in goals of patient care. ETHICS AND DISSEMINATION: This study has received ethical approval from the Royal Perth Hospital, St John of God and Curtin University Human Research Ethics Committees. The outputs from this project will be a series of research papers and conference presentations.

Goals of care discussions in acute hospital admissions - Qualitative description of perspectives from patients, family and their doctors.

OBJECTIVE: Goals of care discussions guide care for hospital inpatients at risk of deterioration. We aimed to explore patient and family experience of goals of care during the first 72 h of admission along with their doctor's perspective. METHODS: A qualitative descriptive study. Patients, family and doctors who participated in a goals of care discussion during an acute hospital admission at an Australian tertiary teaching hospital were interviewed in 2019. RESULTS: Many participants found goals of care discussions appropriate and reported understanding. However, communication was commonly procedure-focused, with questioning about preferences for cardiopulmonary resuscitation and intubation. Some considered the discussion as inapplicable to their state of health, and occasionally surprising. Participants commonly related goals of care with death, and without context, this led to fear of abandonment. Previous experience with end of life care influenced decision-making. Preference for family presence was clear. CONCLUSIONS: This study identifies deficiencies in goals of care communication in the acute hospital setting. Discussions are life-saving-procedure focused, leading to poor understanding and potentially distress, and jeopardising patient-centred care. PRACTICE IMPLICATIONS: Assessment of patient values and clear communication on the aims of goals of care discussions is essential to optimise patient and institutional outcomes. Clinicians should consider environment and invite family participation.

Advance care planning documentation strategies; goals-of-care as an alternative to not-for-resuscitation in medical and oncology patients. A pre-post controlled study on quantifiable outcomes.

BACKGROUND: Health services in Tasmania, Victoria and now Western Australia are changing to goals-of-care (GOC) advance care planning (ACP) documentation strategies. AIM: To compare the clinical impact of two different health department-sanctioned ACP documentation strategies. METHODS: A non-blinded, pre-post, controlled study over two corresponding 6-month periods in 2016 and 2017 comparing the current discretional not-for-resuscitation (NFR) with a new, inclusive GOC strategy in two medical/oncology wards at a large private hospital. Main outcomes were the uptake of ACP forms per hospitalisation and the timing between hospital admission, ACP form completion and in-patient death. Secondary outcomes included utilisation of the rapid response team (RRT), palliative and critical care services. RESULTS: In total, 650 NFR and 653 GOC patients underwent 1885 admissions (mean Charlson Comorbidity Index = 3.7). GOC patients had a higher uptake of ACP documentation (346 vs 150 ACP forms per 1000 admissions, P < 0.0001) and a higher proportion of ACP forms completed within the first 48 h of admission (58 vs 39%, P = 0.0002) but a higher incidence of altering the initial ACP level of care (P = 0.003). All other measures, including ACP documentation within 48 h of death (P = 0.50), activation of RRT (P = 0.73) and admission to critical (P = 0.62) or palliative (P = 0.81) care services, remained similar. GOC documentation was often incomplete, with most sub-sections left blank between 74 and 87% of occasions. CONCLUSION: Despite an increased uptake of the GOC form, overall use remained low, written completion was poor, and most quantitative outcomes remained statistically unchanged. Further research is required before a wider GOC implementation can be supported in Australia's healthcare systems.

Interhemispheric motor interactions in hemiparetic children with perinatal stroke: Clinical correlates and effects of neuromodulation therapy.

OBJECTIVE: Brain stimulation and constraint therapy may enhance function after perinatal stroke but mechanisms are unknown. We characterized interhemispheric interactions (IHI) in hemiparetic children and explored their relationship to motor function and neuromodulation. METHODS: Forty-five hemiparetic perinatal stroke subjects aged 6-19 years completed a clinical trial of repetitive-transcranial magnetic stimulation (rTMS) and constraint therapy. Paired-pulse TMS measured IHI in cases and normal controls. Suprathreshold conditioning stimuli preceded contralateral test stimuli bidirectionally: stroke to non-stroke (SNS) and non-stroke to stroke (NSS). Primary outcome was the interhemispheric ratio (IHR) between conditioned and test only MEP amplitudes X100 (<100 implied inhibition). Motor outcomes at baseline and post-intervention were compared to IHR. RESULTS: Procedures were well tolerated. IHI occurred bidirectionally in controls. Eighteen stroke participants had complete data. IHR were increased in stroke participants in both directions. SNS IHR was >100 (facilitation) in 39% of measurements and correlated with better motor function. NSS IHR correlated with poorer motor function. Intervention-induced clinical change was not associated with IHR. CONCLUSIONS: Interhemispheric interactions are altered and related to clinical function, but not necessarily neuromodulation, in children with perinatal stroke. SIGNIFICANCE: Adding interhemispheric interactions to evolving models of developmental plasticity following early injury may advance neuromodulation strategies.

Management guidelines for motor neurone disease patients on non-invasive ventilation at home.

Most motor neurone disease (MND) patients die of respiratory system complications. When patients have advanced disease with symptoms of respiratory failure, management issues can become complicated by the introduction of assisted ventilatory devices. Therefore, care provision by a multidisciplinary team must be structured and co-ordinated in order to ensure that patients and their carers receive the optimal level of care. The objective of this article is to review the literature and explore the complex issues surrounding the use of non-invasive positive pressure ventilation (NIPPV) in home care MND patients as a justification for the development of a management guideline for medical practitioners. A guideline for multidisciplinary care of home ventilated MND patients will be proposed.