Propofol for palliative sedation in catastrophic bleeding.

Catastrophic bleeds are life-threatening events. This case report describes the successful use of intravenous propofol infusion in order to facilitate palliative sedation in the context of a catastrophic bleed where traditional medications did not yield the necessary level of effect as the patient survived another 72 hours after the onset of the bleeding event. Given the prolonged period post onset of this patient's catastrophic bleed, this case demonstrates the effective use of an intravenous propofol infusion to facilitate comfort and sedation when drug classes such as benzodiazepines and barbiturates failed to do so. Given the successful outcome detailed in this case, we strongly advocate for the development of guidelines that incorporate propofol alongside other pharmacological measures when addressing palliative sedation.

Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study.

The growing body of information-seeking and decision-making literature in motor neurone disease (MND) has not yet explored the impact of health literacy. Health literacy relates to the skills people have to access, understand, and use health information and is influenced by motivation to engage with healthcare. We aimed to better understand how people affected by MND engage in healthcare by examining longitudinal interview data using the construct of health literacy. Semi-structured interviews were conducted with 19 persons living with MND and 15 carers recruited from a specialist MND clinic using maximum variation sampling. Transcripts were deductively coded using a framework of health literacy behaviours. The analysis used a matrix-based approach for thematic analysis of longitudinal data. People living with MND and carers sought nuanced information dependent on their priorities and attitudes. Information uptake was influenced by perceived relevancy and changed over time. Time allowed opportunity to reflect on and understand the significance of information provided. The findings indicate that persons living with MND and carers benefit when information and consultations are adapted to meet their communication needs. The results highlight the potential benefits of gaining an early understanding of and accommodating the communication needs, personal preferences, and emotional readiness for information for persons living with MND and their carers.

The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study.

BACKGROUND: Communication and cognitive impairments are known barriers to shared decision-making. Most people diagnosed with motor neurone disease (MND) will develop a motor speech impairment over the disease course. Some will develop cognitive, linguistic or behavioural disturbance. Despite this, the impact of communication and cognitive impairment on personal healthcare decision-making in MND is not well known. AIMS: This exploratory, longitudinal study aimed to capture the perspectives of people living with MND (plwMND) and family members on managing their healthcare with, or in anticipation of, a communication impairment. METHODS & PROCEDURES: Semi-structured interviews and functional assessments were conducted with plwMND and family members over one to three time points between December 2017 and January 2020. Participants were recruited from a specialist MND clinic using a maximum variation sampling approach. Interview transcripts were analysed using trajectory data analysis: a matrix-based approach for thematic analysis of longitudinal data. The study was underpinned by interpretive descriptive methodology. OUTCOMES & RESULTS: A total of 19 plwMND with a range of MND phenotypes and 15 family members were recruited. Disease progression and participant withdrawal resulted in attrition, however 12 plwMND and seven family members participated at all three time points. Consistent cognitive screening was not feasible, which limited the opportunity to explore the impact of cognitive change. An overarching theme 'Communicating takes effort' was identified and illustrates the efforts required to compensate for, or circumnavigate, impairments to maintain involvement in healthcare. Assistance from family and accommodation from healthcare professionals (HCPs) was needed for ongoing engagement. Where plwMND were dependent on alternative communication devices, this assistance was essential and primarily carried out by family members. Despite these efforts, the quality, quantity and accuracy of communication were sometimes compromised. Participants equated good communication with receiving good healthcare, and some expressed anxiety in the anticipation of being unable to express their needs to healthcare workers. CONCLUSION & IMPLICATIONS: Communication impairment has a direct impact on healthcare involvement. This study demonstrates the effort required by plwMND and their carers to maintain or maximize ongoing involvement. This effort may not always be visible to HCPs. This information may prompt clinicians to consider the best ways to conduct clinical consultations to accommodate patients' abilities. Compromised communication experiences can be moderated by accommodations and support from HCPs and appropriate adjustments in the health system. Asking patients about their communication preferences and needs, allowing extra time and conducting multidisciplinary sessions are examples of such support. WHAT THIS PAPER ADDS: What is already known on this subject? Communication and cognitive impairments are known contributors to negative health outcomes and barriers to shared decision-making generally. The existing literature in decision-making in MND does not address the specific impact of these impairments on personal healthcare involvement for plwMND and their carers. What this paper adds to existing knowledge? This paper reports the findings of a research project that interviewed 19 plwMND and 15 carers on one to three occasions over a 26-month period to obtain their perspectives of the impact of communication on healthcare involvement. Whilst a priori the intention was to look at both communicative and cognitive decline, only the former was achieved. The effort and often 'invisible' activity undertaken to manage or maintain involvement in healthcare is identified. Communication impairment requires support and accommodation, otherwise healthcare involvement can be compromised. Results show participants may associate effective communication with good healthcare. What are the potential or actual clinical implications of the work? Clinicians may wish to use these insights from plwMND and their carers to guide adjustments to their professional practice to maximize healthcare involvement for their patients. Tailored education for different healthcare groups is needed to improve understanding of MND-related communication impairments and supportive strategies so that involvement in healthcare is not compromised.

Palliative and Supportive Care Prescribing Considerations Around QT Prolongation Risk in the Context of COVID-19 (Coronavirus Disease 2019) Management.

COVID-19 brings with it unprecedented challenges in clinical management. An important component of care is the provision of safe and effective symptom control. Given the emerging literature reporting on the risk of QT prolongation and arrhythmias associated with COVID-19 disease and experimental therapies, we highlight some considerations for the prescribing of palliative care medications in this context. Based on the experience gained from palliative care referrals at our institution prior to and during the COVID-19 pandemic, and in collaboration with our clinical pharmacology colleagues, we outline some general prescribing principles which may assist with weighing the risks and benefits of prescribing symptomatic medications in and beyond the current pandemic.

Communication and cognitive impairments and health care decision making in MND: A narrative review.

RATIONALE: Motor neurone disease (MND) is a neurodegenerative disease presenting with progressive weakness of voluntary muscles. For any condition, person-centred health care relies on the sharing of information and a mutual understanding of the person's needs and preferences. Decision making in MND becomes more complex as there is no cure and a high prevalence of co-morbid communication and/or cognitive difficulties. OBJECTIVE: To identify the reported impact of communication and/or cognitive impairment on patient and carer involvement in health care decision making in MND. METHODS: A review and synthesis of studies addressing issues of communication impairment and/or cognitive impairment in relation to decision making focussed on MND was conducted. Articles were excluded if they were reviews, case studies, conference papers, or commentaries. To be included studies needed to address issues of communication impairment or cognitive impairment specifically in relation to decision making. Relevant data were extracted verbatim and subjected to content analysis to support the narrative summary. RESULTS: Seventy-six articles were identified, and 35 articles screened. Six articles met inclusion criteria each describing examples of decision making in MND. There was limited data related to communication and/or cognitive impairment, and the impact these impairments may have on decision making despite recognition that many people with MND may lose verbal communication or develop subtle cognitive impairments. The literature is primarily from the perspective of others. CONCLUSION: This review highlights that the current body of literature exploring decision making within the MND population presents us with extremely limited insights into the impact of communication and/or cognitive impairments on health care decision making. Extant literature focuses on interventions (namely, ventilation and gastrostomy), the broad process of decision making, or cognitive assessment of decision-making ability. Whilst most studies acknowledge that deficits in communication or cognition impact the decision-making process, this issue is not the focus of any study.

Effective change management within an Australian community palliative care service.

This article attempts to examine and explore the change management process that was undertaken by the community palliative care service at Calvary Health Care Bethlehem, Australia, to challenge the historical practice of prescribing 'emergency subcutaneous medications' for all patients admitted to the service. It discusses how, using a team approach, change management was effectively facilitated to ultimately enhance service provision and consumer satisfaction. Literature (both national and international) was examined to identify the use of emergency medications in the community palliative care setting. The historical practice of all community palliative care patients being prescribed this medication within the Victoria region of Australia was tested, and concerns and misconceptions of staff and referrers were challenged in regards to this practice. Through working parties, descriptive surveys and staff evaluations, the use of the term 'emergency medication' was changed to 'anticipatory medication' with clear criteria for usage. Change was undertaken slowly and with continued collaboration of staff to ensure effectiveness. Staff survey results identified that the majority were satisfied with the change, and they considered there to be no impact on the quality of care that their patients were receiving. The natural progression of the project, which resulted in positive quantitative and qualitative results, was the facilitation of an education package for carers to educate them on giving subcutaneous medications to the patient. By undertaking change that was slow and methodical with clear communication to all, the community palliative care service was able to embed the changes into everyday practice, and the use of anticipatory medications within the Calvary Health Care Bethlehem community palliative care service is now understood, acknowledged, and adhered to by all staff.

'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.