How Do Kidney Disease Clinicians View Kidney Supportive Care and Palliative Care? A Qualitative Study.

RATIONALE & OBJECTIVE: Kidney supportive care (KSC) is a developing area in medicine that integrates the expertise of kidney and palliative care practitioners to improve symptoms and quality of life for people with advanced kidney disease. The intersection of the practical aspects of KSC (including care activities and clinical referrals) with palliative and end-of-life care (EOLC) are largely unknown. The aim of this study was to explore kidney disease clinicians' experiences of KSC, palliative care, and EOLC. STUDY DESIGN: An exploratory qualitative study using semistructured focus groups. SETTING & PARTICIPANTS: Kidney disease clinicians (18 physicians, 3 trainees, and 33 kidney disease nurses) from 5 public hospitals were recruited across Victoria, Australia. ANALYTICAL APPROACH: Thematic analysis of focus group transcripts. RESULTS: The 2 overarching themes highlighted by clinicians were their perception that their health care systems insufficiently addressed the needs of people with advanced kidney disease, as well as their aspirations to develop KSC services to improve health care experiences. Three subthemes were identified related to limitations in health care systems: (1) variation in the clinical scope of KSC, (2) limited integration of palliative care, and (3) experiences of challenging and compromised provision of EOLC. The second theme described aspirations for future KSC services to be more inclusive, seamless, and collaborative across health care providers with capacity to respond to meet changing palliative care needs. LIMITATIONS: Findings may not be transferable to contexts outside of Victoria, Australia; data were collected in 2017-2018 and may not reflect current or future experiences. CONCLUSIONS: Kidney clinicians described systemic challenges and compromises in care experiences and the need for development of KSC services. They expressed that this development would require a consistent and systematic approach that integrates palliative care and embeds KSC as part of kidney health service delivery.

Hepatocellular carcinoma and its impact on quality of life: A review of the qualitative literature.

INTRODUCTION: Hepatocellular carcinoma (HCC) carries significant burden of disease, with high mortality rates and poor prognosis. It is therefore important to consider quality of life (QoL) for patients with HCC. Quantitative research assesses HCC and QoL via standardised measurement tools, but these do not capture the full scope of patient experiences. This review examines the body of qualitative research on this topic, to develop a comprehensive understanding of QoL for this population. METHODS: Medline, EMBASE and PsycINFO were systematically searched with keywords relating to HCC, QoL and patient experience. After applying inclusion and exclusion criteria, key findings of included studies were extracted and analysed for themes. RESULTS: Eleven studies were included for thematic analysis, with five themes identified as central to QoL: (1) burden of physical symptoms and treatment side effects; (2) psychological impact and coping strategies; (3) social function and stigma; (4) spiritual wellbeing, sense of self and meaning of illness and (5) pervasive uncertainty. CONCLUSION: HCC profoundly impacted patients' lives, spanning physical, psychological, social and spiritual QoL domains. While QoL was reduced overall, some features of patient experiences that enhanced QoL were noted. The findings complement data from quantitative studies, helping to build a richer understanding of QoL.

Increased number of deaths within 24 h of admission during a period of social restriction related to the COVID-19 pandemic: A retrospective service evaluation in a metropolitan palliative care unit.

BACKGROUND: COVID-19 has led to implementation of wide-ranging social restriction measures with consequent impact on health care utilisation in many domains. There is little published data on the experience of palliative care services catering to a population with low case numbers of COVID-19. AIM: This study aimed to consider the impact of COVID-19 on utilisation of inpatient palliative care in the context of low community transmission, and low numbers of cases in hospital. DESIGN: A retrospective service evaluation examining differences in number of admissions, diagnoses, number of deaths and time from admission to death, across three discrete 8-week time periods spanning the early COVID-19 pandemic. SETTING/PARTICIPANTS: All admissions (n = 194) to a metropolitan tertiary hospital inpatient palliative care unit in Melbourne during the study period. RESULTS: An initial 16.9% fall in admissions was followed by a return to baseline admission numbers, with a 46.7% increase in number of deaths compared to baseline. The number of deaths within 24 h rose from 10.8% to 37.3% (p < 0.01). The number of patients with non-malignant diagnoses increased from 32.4% to 52%, and those with non-malignant diagnoses were more likely to die rapidly (p < 0.01). There were no patients with COVID-19 infection. CONCLUSION: Increased numbers of deaths within 24 h of admission occurred on the palliative care unit despite low COVID-19 case numbers in the wider community, and in the setting of widespread social restriction measures. More research is needed examining the health-related consequences of such restrictions for individuals not infected with COVID-19.

Fact versus fiction: bridging contrasting medicinal cannabis information needs.

Regulatory changes now permit the availability and prescribing of medicinal cannabis in Australia. Public awareness and patient interest are high. Using a co-design approach involving cancer patients, carers and oncology and palliative care clinicians, two information resources were developed to provide readily available sources of important information for cancer patients and clinicians who are considering the use of medicinal cannabis. Focus groups and evaluation interviews revealed some areas of dissonance between consumers and clinicians concerning aspects of medicinal cannabis.

Who is asking about medicinal cannabis in palliative care?

Following legislative changes in the availability and prescribing of medicinal cannabis in Australia, we sought to understand prospectively the nature of information seeking and requests for medicinal cannabis in consultations between palliative care clinicians and patients with cancer. The 104 discussions were overwhelmingly initiated by patients and carers (93%) and were for a variety of symptoms, reflecting high levels of patient interest in the use of medicinal cannabis in cancer.

Recognising and managing dying patients in the acute hospital setting: can we do better?

Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this was performed late with a median time between documentation and death of 0.84 days. Furthermore, 132 (66%) patients received an intervention in the final 48 h of life. This highlights the need to improve the recognition and management of dying patients in acute hospitals.

Patient-reported outcome measures and their utility in the management of patients with advanced chronic kidney disease.

Symptom and quality of life (QOL) measures in patients with advanced chronic kidney disease are recognized indicators of patient-centred care and represent important research, quality and clinical measures. This study examined relationships between symptom burden, QOL and functional status and associations of symptoms and mortality risk. A multisite longitudinal cohort analysis was undertaken in chronic kidney disease stage 4/5 (no dialysis) and dialysis patients. Patients completed symptom and QOL measures (Palliative Care Outcome Symptom Score renal), World Health Organisation QOL Brief Version) and Karnofsky Performance scale. Clinical and demographic data were recorded.

The experiences of patients with advanced cancer and caregivers presenting to Emergency Departments: A qualitative study.

BACKGROUND: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations. AIM: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers. DESIGN: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers. Qualitative data analysis was underpinned by a phenomenological approach utilising a data-driven inductive thematic frame. SETTING/PARTICIPANTS: In total, 19 patients with advanced cancer who presented to Emergency Departments in the previous 6 months and 10 informal caregivers from an Australian public hospital and community palliative care service were interviewed. RESULTS: Patients reported that Emergency Department presentations were largely prompted by worsening symptoms or were a means to expedite hospital admission, with many instructed to attend by their health care provider. The experience in the Emergency Department was described as a time of anxiety and uncertainty with concerns over communication, the general environment and delays in the symptom management highlighted. Long waits were common. Despite this, patients described relief at receiving care. While the Emergency Department was viewed as a safety net for the health system, many believed advanced cancer patients should have alternative options. CONCLUSION: Relatively simple changes of regular communication updates and early symptom relief would improve patient experience of Emergency Department care. However, since an Emergency Department presentation is frequently serving as a default to access medical care, a significant re-orientation of the health care system is required to meet patient needs.

Assessment of potential opioid toxicity and response to naloxone by rapid response teams at an urban Melbourne hospital.

Opioid prescriptions have significantly increased in recent years and are used for a wide variety of indications. Electronic medical records of 45 patients who received naloxone by a rapid response team over an 18-month period were retrospectively reviewed. This study found inconsistencies in the management of possible opioid toxicity with variation in the total naloxone dose and number of doses administered. This highlights the importance of a standardised protocol for recognition and management of opioid overdose.

Presentation patterns and outcomes of patients with cancer accessing care in emergency departments in Victoria, Australia.

PURPOSE: People with cancer attend emergency departments (EDs) for many reasons. Improved understanding of the specific needs of these patients may assist in optimizing health service delivery. ED presentation and hospital utilization characteristics were explored for people with cancer and compared with those patients without cancer. METHODS: This descriptive, retrospective, multicentre cohort study used hospital administrative data. Descriptive and inferential statistics were used to summarise and compare ED presentation characteristics amongst cancer and non-cancer groups. Predictive analyses were used to identify ED presentation features predictive of hospital admission for cancer patients. Outcomes of interest were level of acuity, ED and inpatient length of stay, re-presentation rates and admission rates amongst cancer patients and non-cancer patients. RESULTS: ED (529,377) presentations occurred over the 36 months, of which 2.4% (n = 12,489) were cancer-related. Compared with all other attendances, cancer-related attendances had a higher level of acuity, requiring longer management time and length of stay in ED. Re-presentation rates for people with cancer were nearly double those of others (64 vs 33%, p < 0.001), with twice the rate of hospital admission (90 vs 46%, p < 0.001), longer inpatient length of stay (5.6 vs 2.8 days, p < 0.001) and had higher inpatient mortality (7.9 vs 1.0%, p < 0.001). Acuity and arriving by ambulance were significant predictors of hospital admission, with cancer-related attendances having ten times the odds of admission compared to other attendances (OR = 10.4, 95% CI 9.8-11.1). CONCLUSIONS: ED presentations by people with cancer represent a more urgent, complex caseload frequently requiring hospital admission when compared to other presentations, suggesting that for optimal cancer care, close collaboration and integration of oncology, palliative care and emergency medicine providers are needed to improve pathways of care.

What's in a name? A qualitative exploration of what is understood by "palliative care" in the emergency department.

BACKGROUND: The understanding of what palliative care is, and which patients may benefit from palliative care, has important implications for optimal patient care in all areas of health provision. AIM: To explore the understanding of palliative care by healthcare professionals caring for patients with advanced cancer attending emergency departments. DESIGN: Qualitative study, with two phases: the first, a series of focus groups with healthcare professionals from various disciplines and settings caring for patients with advanced cancer presenting to emergency departments; the second, semi-structured telephone interviews with emergency healthcare professionals across Australian States and Territories, including outside metropolitan centers. The data were audio-recorded and transcribed, with analysis undertaken using a qualitative thematic analysis. SETTING/PARTICIPANTS: Saturation of themes was reached after 8 focus groups (22 emergency nurses, 21 emergency physicians, 6 oncologists, 6 hospital palliative care clinicians, and 28 community palliative care clinicians) and 11 telephone interviews (8 emergency physicians and 3 emergency nurses), a total of 94 participants. RESULTS: The overarching theme was that healthcare professionals held contradictory understandings of palliative care and its application in the emergency department; subthemes highlighted these inconsistencies when the term "palliative" is used, in understandings of and engagement with palliative care services and in perceptions about the practical utility of palliative care. CONCLUSION: There are entrenched contradictions and tensions surrounding the term "palliative care"; confronting these is likely to require more than re-branding, and will promote better care for this vulnerable patient group in the emergency department.

"Better pathways of care": suggested improvements to the emergency department management of people with advanced cancer.

OBJECTIVE: It is difficult to provide optimal care to people with advanced cancer presenting to emergency departments (EDs). Recent data suggest that the ED environment, the skills and priorities of treating staff, and the lack of clear communication related to goals of care contribute to the difficulty. By exploring the views of emergency, palliative care (PC), and oncology clinicians on the care of these patients, this study aimed to describe potential solutions. METHODS: This qualitative study involved focus groups with clinicians at two major hospitals and two community PC services in Melbourne, Australia, and semistructured telephone interviews with emergency clinicians from all other Australian states and territories. Discussions were recorded and transcribed verbatim. Thematic analysis identified ways to improve or enhance care. RESULTS: Throughout discussions with 94 clinicians, a number of possible improvements to care were raised; these were broadly grouped into service areas: clinical care, pathways, information access, and education. CONCLUSION: The provision of care to patients with advanced cancer in the ED occurs across sites, across disciplines, and across teams. To make improvements to care, we must address these complexities. The improvements suggested in this study place the patient (and the patient's family) at the centre of care.

Impact of gross anatomy laboratory on student written examination performance: A 3-year study of a large-enrollment undergraduate anatomy course.

The efficacy of the various pedagogies that are used in human anatomy laboratories has been extensively debated. Nevertheless, an important question remains relatively unexamined-how the learning experience in the anatomy laboratory impacts students' mastery and application of anatomical knowledge beyond the laboratory setting. In this study, the effect of a prosection-based anatomy laboratory on overall comprehension and mastery of anatomical knowledge was evaluated in an upper division undergraduate anatomy curriculum that consists of a mandatory lecture course and an optional laboratory course. This flexible curricular structure permitted assessing the merit of laboratory learning on the written examination performance of the lecture course. In 2019 and 2022, the anatomy laboratory was taught in-person using prosections, while in 2021 due to the Covid-19 pandemic related regulations, it was taught remotely with live-streaming of prosections using document cameras. In both in-person and remote instructive formats, written examination scores of the lecture course were compared between two cohorts of students: Those enrolled in lecture only and those enrolled in both lecture and laboratory. Results showed that the cohort enrolled in both lecture and laboratory courses consistently outperformed the lecture-only cohort by one full letter grade. Furthermore, when the degrees of improvement on written examination scores were compared between the two instructive formats, in-person laboratory had a greater increase compared to remote laboratory. Altogether this study demonstrates that the prosection-based anatomy laboratory enhances students' mastery of anatomical knowledge beyond the laboratory setting by promoting comprehension of spatial relationships of anatomical structures.

Qualitative evaluation of an integrated respiratory and palliative care service: patient, caregiver and general practitioner perspectives.

Objectives Integrated respiratory and palliative care services for people with advanced lung disease provide disease-orientated care until the end of life, alongside symptom management and discussions about future care. This study aimed to explore patient, caregiver and general practitioner perspectives of an integrated respiratory and palliative care service, to understand which components of the service were considered valued and effective. Methods We approached patients, caregivers and general practitioners, to participate in semi-structured phone interviews. A grounded theory approach guided data collection and qualitative analysis. Results Between July and December 2019, 10 patients, eight caregivers and five general practitioners completed interviews. The overarching theme was that of valuing integrated care - the provision of disease-orientated care along with palliative care. Four other major themes emerged: Valuing communication and engagement between patient, caregiver and healthcare professionals - who spoke of 'growing this plan together'; the delivery of person-centred care - where physicians 'actually listen and you are not treated like a number'; the reality of action plan use in serious illness - while many found plans 'certainly' do help, others described when they were simply 'too ill to do the action plan'; and finally, divergent preferences for discussions about future care - while some patients felt this subject was 'better left alone', caregivers consistently reported their preference was to 'make a plan.' Conclusion Consumer perspectives highlight the service was valued for delivering personalised care with high communication standards. Similar services should appreciate the usefulness and limitations of action plan use in advanced lung disease, and be sensitive to potential diverging preferences of the patient and caregiver when discussing future care.

Kidney Clinicians' Perceptions of Challenges and Aspirations to Improve End-Of-Life Care Provision.

Introduction: End-of-life care is an essential part of integrated kidney care. However, renal clinicians' experiences of care provision and perceptions of end-of-life care needs are limited. This study explored renal clinicians' experiences of providing end-of-life care and developed recommendations to improve experiences. Methods: An exploratory qualitative study using semistructured focus groups and 1 interview was undertaken at 5 kidney services in Victoria, Australia. The transcripts were analyzed thematically. Results: Between February and December 2017, 54 renal clinicians (21 doctors and 33 nurses) participated in the study. Clinicians reported multiple challenges of end-of-life care experiences resulting in compromised treatment planning and decision making and highlighted priorities to guide better care experiences. Challenges of providing end-of-life care were underpinned by mismatches in illness and treatment expectations, limited engagement in advance care planning, medical complexity, and differences between clinicians and patients in what constituted quality of life. These challenges were associated with compromised end-of-life care planning, which resulted in care experiences that were rushed with a prolonged treatment focus, risking limited preparation for death and moral distress. Clinicians aspired for positive end-of-life care experiences, including patient control and consensus in decision making, and a coordinated and collaborative approach across healthcare providers. Conclusions: Renal clinicians highlighted multiple factors and circumstances which resulted in experiences of compromised end-of-life care for patients with kidney disease. To improve care experiences, clinician-directed priorities included more training and support to facilitate systematic and earlier discussions about illness expectations and end-of-life care planning and greater communication and collaboration across healthcare providers is required.

Implementation of an integrated respiratory palliative care service for patients with advanced lung disease.

Objectives This study describes the model of care provided by an integrated respiratory and palliative care service for patients with advanced lung disease, and assesses the potential impact of the service on acute hospital utilisation and cost. Methods This study implemented an integrated specialist care service at a single tertiary teaching hospital in Melbourne, Victoria, Australia. The service provided disease-orientated care, alongside symptom management and advance care planning, and comprised both outpatient clinic (OPC) and home visit (HV) capacity for those with barriers to accessing OPC. Acute hospital utilisation and hospital cost were analysed with a paired t -test 90 days before/after the first physician review. Results Between April 2017 and 2019, 51 patients received 59 HVs, whereas between July 2018 and 2020, 58 patients received 206 OPC reviews. Acute hospital admissions decreased by 51% in the HV cohort (P < 0.05) and by 46% in the OPC cohort (P = 0.01); total bed days of acute admissions decreased by 29% in the HV cohort (P = n.s.), and by 60% in the OPC cohort (P < 0.05); and specialist outpatient clinic attendances decreased in the OPC cohort by 55% (P < 0.01). There was a decrease in hospital cost for the HV cohort by 3% (cost savings of A$18 579), and in the OPC cohort by 23% (cost savings of A$109 149). Conclusions This model of care provided specialist respiratory management with seamless integration of palliative care, with the capacity for home visits. There was a decrease in acute hospital utilisation and overall cost savings observed in both HV and OPC cohorts.

Understanding end-of-life care in Australian hospitals.

ObjectiveTo explore end-of-life care in the ward and intensive care unit (ICU) environment in nine Australian hospitals in a retrospective observational study.MethodsIn total, 1693 in-hospital deaths, 356 in ICU, were reviewed, including patient demographics, advance care plans, life-sustaining treatments, recognition of dying by clinicians and evidence of the palliative approach to patient care.ResultsMost patients (n=1430, 84%) were aged ≥60 years, with a low percentage (n=208, 12%) having an end-of-life care plan on admission. Following admission, 82% (n=1391) of patients were recognised as dying, but the time between recognition of dying to death was short (ICU (staying 4-48h) median 0.34 days (first quartile (Q1), third quartile (Q3): 0.16, 0.72); Ward (staying more than 48h) median 2.1 days (Q1, Q3: 0.96, 4.3)). Although 41% (n=621) patients were referred for specialist palliative care, most referrals were within the last few days of life (2.3 days (0.88, 5.9)) and 62% of patients (n=1047) experienced active intervention in their final 48h.ConclusionsLate recognition of dying can expose patients to active interventions and minimises timely palliative care. To attain alignment to the National Consensus Statement to improve experiences of end-of-life care, a nationally coordinated approach is needed.What is known about the topic?The majority of Australian patient deaths occur in hospitals whose care needs to align to the Australian Commission on Safety and Quality in Health Care's National Consensus Statement, essential elements of safe and high-quality end-of-life care.What does this paper add?The largest Australian study of hospital deaths reveals only 12% of patients have existing advance care plans, recognition of death is predominantly within the last 48h of life, with 60% receiving investigations and interventions during this time with late symptom relief.What are the implications for practitioners?Given the poor alignment with the National Consensus Statement, a nationally coordinated approach would improve the patient experience of end-of-life care.

Characteristics of family meetings for patients with advanced disease in an Australian metropolitan tertiary hospital.

OBJECTIVES: Family meetings (FMs) between clinicians, patients and family are recommended as a valuable communication and care planning method in the delivery of palliative care. However, there is a dearth of knowledge regarding FM characteristics, with few studies describing the prevalence, circumstances and content of FMs. The aims of this study were to: (1) measure the prevalence of FMs, (2) examine circumstance and timing of FMs, and (3) explore the content of FMs. METHODS: A retrospective medical record audit was conducted of 200 patients who died in an Australian hospital of an expected death from advanced disease. Details of FMs were collected using an audit tool, along with patient demographics and admission data. RESULTS: 33 patients (16.5%) had at least one FM during their inpatient stay. The majority of FMs occurred for patients admitted to an inpatient palliative care unit (59.5%) and were most commonly facilitated by doctors (81.0%). Patient attendance was frequent (40.5%). FM content fell into six categories: medical information, supportive communication behaviours of clinicians, psychosocial support for patients and families, end-of-life discussions, discharge planning and administrative arrangements. CONCLUSIONS: Despite the benefits FMs confer, FMs appear to be infrequently used at the end of life. When FMs are used, there is a strong medical focus on both facilitation and content. Available FM documentation tools also appear to be underused. Clinicians are encouraged to have a greater understanding of FMs to optimise their use and adopt a proactive and structured approach to the conduct and documentation of FMs.

Changes in Pre- and Post-Exercise Gene Expression among Patients with Chronic Kidney Disease and Kidney Transplant Recipients.

INTRODUCTION: Decreased insulin sensitivity blunts the normal increase in gene expression from skeletal muscle after exercise. In addition, chronic inflammation decreases insulin sensitivity. Chronic kidney disease (CKD) is an inflammatory state. How CKD and, subsequently, kidney transplantation affects skeletal muscle gene expression after exercise are unknown. METHODS: Study cohort: non-diabetic male/female 4/1, age 52±2 years, with end-stage CKD who underwent successful kidney transplantation. The following were measured both pre-transplant and post-transplant and compared to normals: Inflammatory markers, euglycemic insulin clamp studies determine insulin sensitivity, and skeletal muscle biopsies performed before and within 30 minutes after an acute exercise protocol. Microarray analyses were performed on the skeletal muscle using the 4x44K Whole Human Genome Microarrays. Since nuclear factor of activated T cells (NFAT) plays an important role in T cell activation and calcineurin inhibitors are mainstay immunosuppression, calcineurin/NFAT pathway gene expression was compared at rest and after exercise. Log transformation was performed to prevent skewing of data and regression analyses comparing measures pre- and post-transplant performed. RESULT: Markers of inflammation significantly improved post-transplantation. Insulin infusion raised glucose disposal slightly lower post-transplant compared to pre-transplant, but not significantly, thus concluding differences in insulin sensitivity were similar. The overall pattern of gene expression in response to exercise was reduced both pre-and post-transplant compared to healthy volunteers. Although significant changes were observed among NFAT/Calcineurin gene at rest and after exercise in normal cohort, there were no significant differences comparing NFAT/calcineurin pathway gene expression pre- and post-transplant. CONCLUSIONS: Despite an improvement in serum inflammatory markers, no significant differences in glucose disposal were observed post-transplant. The reduced skeletal muscle gene expression, including NFAT/calcineurin gene expression, in response to a single bout of exercise was not improved post-transplant. This study suggests that the improvements in inflammatory mediators post-transplant are unrelated to changes of NFAT/calcineurin gene expression.