Case conferencing for palliative care patients - a survey of South Australian general practitioners.

Benefits of case conferencing for people with palliative care needs between a general practitioner, the person and other key participants include improving communication, advance care planning, coordination of care, clarifying goals of care and support for patient, families and carers. Despite a growing evidence base for the benefits, the uptake of case conferencing has been limited in South Australia. The aim of this study is to explore the beliefs and practice of South Australian general practitioners towards case conferencing for people with palliative care needs. Using an online survey, participants were asked about demographics, attitudes towards case conferencing and details about their most recent case conference for a person with palliative care needs. Responses were received from 134 general practitioners (response rate 11%). In total, 80% valued case conferencing for people with palliative care needs; however, <25% had been involved in case conferencing in the previous 2years. The major barrier was time to organise and coordinate case conferences. Enablers included general practitioner willingness or interest, strong relationship with patient, specialist palliative care involvement and assistance with organisation. Despite GPs' beliefs of the benefits of case conferencing, the barriers remain significant. Enabling case conferencing will require support for organisation of case conferences and review of Medicare Benefits Schedule criteria for reimbursement.

Implementation of a pilot telehealth programme in community palliative care: A qualitative study of clinicians' perspectives.

BACKGROUND: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems' imperatives for improved service delivery within current budgets. Clinicians' experiences and attitudes play a key role in the implementation of any innovation in service delivery. AIM: To explore clinicians' perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. DESIGN: Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. SETTING/PARTICIPANTS: The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. RESULTS: Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. CONCLUSION: Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.

Estimating potential palliative care needs for residential aged care: A population-based retrospective cohort study.

OBJECTIVE: Population-based data on the required needs for palliative care in residential aged care have been highlighted as a key information gap. This study aimed to provide a comprehensive estimate of palliative care needs among Australia's residential aged care population using a validated algorithm based on causes of death. METHODS: A population-based retrospective cohort study was conducted using data from the Registry of Senior Australians of non-Indigenous residents of residential aged care services in New South Wales, Victoria, and South Australia aged older than 65 years, who died between 2016 and 2017 (n = 71,677). An internationally validated algorithm was used to estimate and characterise potential palliative care needs based on causes of death. This estimate was compared to palliative care needs identified from funding-based care needs assessment data. RESULTS: Ninety two per cent (n = 65,949) were estimated to have had potential palliative care needs prior to their death. Of these, 19% (n = 12,467) were assigned an end-of-life trajectory related to cancer, 61% (n = 40,511) to organ failure and 20% (n = 12,971) to frailty and dementia. By comparison, only 6% (n = 4430) of residents were assessed as needing palliative care by the funding-based care needs assessment. CONCLUSIONS: Over 90% of individuals dying in residential aged care may have benefited from a palliative approach to care. This need is substantially underestimated by the funding-based care needs assessment, which utilises a narrow definition of palliative care when death is imminent. There is a clear imperative to distinguish between palliative and end-of-life care needs within residential aged care to ensure appropriate and equitable access to palliative care.

Off-label prescribing in palliative care - a cross-sectional national survey of palliative medicine doctors.

BACKGROUND: Regulatory bodies including the European Medicines Agency register medications (formulation, route of administration) for specific clinical indications. Once registered, prescription is at clinicians' discretion. Off-label use is beyond the registered use. While off-label prescribing may, at times, be appropriate, efficacy and toxicity data are often lacking. AIM: The aim of this study was to document off-label use policies (including disclosure and consent) in Australian palliative care units and current practices by palliative care clinicians. DESIGN: A national, cross-sectional survey was conducted online following an invitation letter. The survey asked clinicians their most frequent off-label medication/indication dyads and unit policies. Dyads were classified into unregistered, off-label and on-label, and for the latter, whether medications were nationally subsidised. SETTING/PARTICIPANTS: All Australian palliative medicine Fellows and advanced trainees. RESULTS: Overall, 105 clinicians responded (53% response rate). The majority did not have policies on off-label medications, and documented consent rarely. In all, 236 medication/indication dyads for 36 medications were noted: 45 dyads (19%) were for two unregistered medications, 118 dyads (50%) were for 26 off-label medications and 73 dyads (31%) were for 12 on-label medications. CONCLUSIONS: Off-label prescribing with its clinical, legal and ethical implications is common yet poorly recognised by clinicians. A distinction needs to be made between where quality evidence exists but registration has not been updated by the pharmaceutical sponsor and the evidence has not been generated. Further research is required to quantify any iatrogenic harm from off-label prescribing in palliative care.

Predictors of chronic breathlessness: a large population study.

BACKGROUND: Breathlessness causes significant burden in our community but the underlying socio-demographic and lifestyle factors that may influence it are not well quantified. This study aims to define these predictors of chronic breathlessness at a population level. METHODS: Data were collected from adult South Australians in 2007 and 2008 (n = 5331) as part of a face-to-face, cross-sectional, whole-of-population, multi-stage, systematic area sampling population health survey. The main outcome variable was breathlessness in logistic regression models. Lifestyle factors examined included smoking history, smoke-free housing, level of physical activity and body mass index (obesity). RESULTS: The participation rate was 64.1%, and 11.1% of individuals (15.0% if aged ≥50 years) chronically had breathlessness that limited exertion. Significant bivariate associations with chronic breathlessness for the whole population and only those ≥50 included: increasing age; female gender; being separated/divorced/widowed; social disadvantage; smoking status; those without a smoke-free home; low levels of physical activity; and obesity. In multi-variate analyses adjusted for age, marital status (p < 0.001), physical activity (p < 0.001), obesity (p < 0.001), gender (p < 0.05) and social disadvantage (p < 0.05) remained significant factors. Smoking history was not a significant contributor to the model. CONCLUSIONS: There is potential benefit in addressing reversible lifestyle causes of breathlessness including high body mass index (obesity) and low levels of physical activity in order to decrease the prevalence of chronic breathlessness. Clinical intervention studies for chronic breathlessness should consider stratification by body mass index.

Multidisciplinary care needs in an Australian tertiary teaching hospital.

BACKGROUND: The ageing of the Australian population is placing increasing demand on the nation's healthcare system. This study set out to describe the level of need for multidisciplinary care in an Australian tertiary hospital setting. METHODS: A cross-sectional audit by case note review of all patients on acute medical and surgical wards in an Australian tertiary hospital. The primary outcome was an identified need for multidisciplinary assessment and intervention. RESULTS: A total of 60% of the 295 inpatients audited required multidisciplinary care. Of those who were admitted to geriatric and rehabilitation units, 84% required multidisciplinary care. Patients in acute medical and surgical units also had substantial multidisciplinary care needs. Age was a significant influence with 79% of those aged 86 and above having multidisciplinary care needs, whilst only 38% of those aged 55 or less required multidisciplinary care. Difficulties with mobility, need for assistance with self-care, and continence problems were associated with higher requirement for multidisciplinary care. CONCLUSIONS: In the hospital population, significant multidisciplinary care needs exist. These needs are not limited to inpatients that are elderly or admitted to geriatric or rehabilitation units. This has implications for planning, funding, provision of health care resources, and training of medical and allied health staff.

Symptomatic Events in a Community Palliative Care Population: A Prospective Pilot Study.

Background: The palliative care population is prescribed a large number of drugs, increasing as patients deteriorate. The cumulative effects of these medications combined with underlying symptom burden can result in significant morbidity. There is an urgent need to describe possible symptomatic events that could be exacerbated by commonly prescribed drugs in palliative care and their impact. Objectives: To trial the feasibility and acceptability of determining baseline symptomatic event rates for community palliative care patients from which a composite measure of symptomatic events can be developed. Design: This prospective pilot study of patient-reported symptomatic events recruited a convenience cohort of 27 community palliative care patients in a metropolitan specialist palliative care service in Australia. Results: This study has demonstrated a high prevalence rate of symptomatic events (total crude event/participant day rate 0.87) in the study population. Conclusion: Data collection of patient-centered symptomatic events was acceptable and feasible to participants. This pilot supports a fully powered study.

How Can Activity Monitors Be Used in Palliative Care Patients?

Background: Physical activity in palliative care patients is closely linked to independence, function, carer burden, prognosis, and quality of life. Changes in physical activity can also be related to service provision needs, including requirements for support and prognosis. However, the objective measurement of physical activity is challenging, with options, including self-report, invasive and intensive measures such as calorimetry, or newer options such as pedometers and accelerometers. This latter option is also becoming more viable with the advent of consumer technology driven by the health and exercise industry. Objective: In this article, we highlight our experiences of activity monitoring in palliative care patients as part of telehealth trial. We also highlight the strengths and limitations of activity monitoring in the palliative care population and potential applications. Conclusions: Although the advent of consumer technology for activity measurement makes their use seem attractive in clinical settings for palliative care patients, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.

Utilisation of geriatric assessment in oncology - a survey of Australian medical oncologists.

INTRODUCTION: Geriatric assessment (GA) is a multidimensional health assessment of the older person to evaluate their physical and cognitive function, comorbidities, nutrition, medications, psychological state, and social supports. GA may help oncologists optimise care for older patients with cancer. The aim of this study was to explore the views of Australian medical oncologists regarding the incorporation of geriatric screening tools, GA and collaboration with geriatricians into routine clinical practice. METHODS: Members of the Medical Oncology Group of Australia were invited to complete an online survey that evaluated respondent demographics, practice characteristics, treatment decision-making factors, use of GA, and access to geriatricians. RESULTS: Sixty-nine respondents identified comorbidities, polypharmacy, and poor functional status as the most frequent challenges in caring for older patients with cancer. Physical function, social supports and nutrition were the most frequent factors influencing treatment decision-making. The majority of respondents perceived value in GA and geriatrician review, although access was a barrier for referral. Such services would need to be responsive, providing reports within two weeks for the majority of respondents. CONCLUSION: Despite an emerging evidence base for the potential benefits of GA and collaboration with geriatricians, medical oncologists reported a lack of access but a desire to engage with these services.

Telemonitoring via Self-Report and Video Review in Community Palliative Care: A Case Report.

Continuous monitoring and management of a person's symptoms and performance status are critical for the delivery of effective palliative care. This monitoring occurs routinely in inpatient settings; however, such close evaluation in the community has remained elusive. Patient self-reporting using telehealth offers opportunities to identify symptom escalation and functional decline in real time, and facilitate timely proactive management. We report the case of a 57-year-old man with advanced non-small cell lung cancer who participated in a telehealth trial run by a community palliative care service. This gentleman was able to complete self-reporting of function and symptoms via iPad although at times he was reticent to do so. Self-reporting was perceived as a means to communicate his clinical needs without being a bother to the community palliative care team. He also participated in a videoconference with clinical staff from the community palliative care service and his General Practitioner. Videoconferencing with the nurse and GP was highly valued as an effective way to communicate and also because it eliminated the need for travel. This case report provides important information about the feasibility and acceptability of palliative care telehealth as a way to better manage clinical care in a community setting.

The Prospective Evaluation of the Net Effect of Red Blood Cell Transfusions in Routine Provision of Palliative Care.

BACKGROUND: Red Blood Cell (RBC) transfusions are commonly used in palliative care. RBCs are a finite resource, transfusions carry risks, and the net effect (benefits and harms) is poorly defined for people with life-limiting illnesses. OBJECTIVE: To examine the indications and effects of RBC transfusion in palliative care patients. DESIGN: This international, multisite, prospective consecutive cohort study. SETTING/SUBJECTS: Palliative care patients undergoing RBC transfusion. MEASUREMENTS: Target symptoms (fatigue, breathlessness, generalized weakness, or dizziness) were assessed before transfusion and at day 7 by treating clinicians, using National Cancer Center Institute Common Terminology Criteria for Adverse Events. Assessment of harms was made at day 2. RESULTS: One hundred and one transfusions with day 7 follow-up were collected. Median age was 72.0 (interquartile range 61.5-83.0) years, 58% men, and mean Australia-modified Karnofsky Performance Status (AKPS) of 48 (standard deviation [SD] 17). A mean 2.1 (SD 0.6) unit was tranfused. The target symptoms were fatigue (61%), breathlessness (16%), generalized weakness (12%), dizziness (6%), or other (5%). Forty-nine percent of transfusions improved the primary target symptom, and 78% of transfusions improved at least one of the target symptoms. Harms were infrequent and mild. An AKPS of 40%-50% was associated with higher chances of symptomatic benefit in the target symptom; however, no other predictors of response were identified. CONCLUSIONS: In the largest prospective consecutive case series to date, clinicians generally reported benefit, with minimal harms. Ongoing work is required to define the optimal patient- and clinician-reported hematological and functional outcome measures to optimize the use of donor blood and to minimize transfusion-associated risk.

Can We Detect Transfusion Benefits in Palliative Care Patients?

BACKGROUND: Red blood cell (RBC) transfusions are commonly prescribed for palliative care patients for symptoms. However, RBCs are a limited resource, transfusion is not without risk, and may be of variable benefit in people approaching the end of life. The aim of this study was to review RBC transfusions in our palliative care unit (PCU), examining evidence of benefit or harms, and preparing for a prospective multisite study. METHODS: This consecutive cohort study retrospectively reviewed transfusions administered during a PCU admission. Hemoglobin levels, physical function, and symptom rating for breathing and fatigue (Symptom Assessment Scale) were assessed before transfusion, and at days 2 and 7. RESULTS: Thirty-one patients received 44 transfusions over the two-year period. Of these patients, the average age was 64 years and 45% were male. Eighty-nine percent of transfusions were thought to be of subjective benefit by clinicians, and 94% of patients reported symptomatic improvement. However, overall, there was little change in scale-based measures of physical function or symptoms, with response rates <25% in all scales. No predictors of response were found considering pretransfusion hemoglobin, hemoglobin increment, Australia-modified Karnofsky Performance Status, or discharge status. Deterioration after transfusion was prevalent. CONCLUSION: For RBC transfusion in palliative care patients, the majority had subjective benefit. However, subjective improvement correlated poorly with objective scale-based measures. The sensitivity of assessment scales, high rates of placebo response, and the multifactorial nature of symptoms at the end of life make evaluation of RBC transfusions challenging.

Prescribing for nausea in palliative care: a cross-sectional national survey of Australian palliative medicine doctors.

BACKGROUND: Nausea can be a debilitating symptom for patients with a life-limiting illness. While addressing reversible components, nonpharmacological strategies and antiemetics are the main therapeutic option. The choice of medication, dose, and route of administration remain highly variable. OBJECTIVE: The aim of this study was to codify the current clinical approaches and quantify any variation found nationally. METHODS: A cross-sectional study utilizing a survey of palliative medicine clinicians examined prescribing preferences for nausea using a clinical vignette. Respondent characteristics, the use of nonpharmacological interventions, first- and second-line antiemetic choices, commencing and maximal dose, and time to review were collected. RESULTS: Responding clinicians were predominantly working in palliative medicine across a range of settings with a 49% response rate (105/213). The main nonpharmacological recommendation was "small, frequent snacks." Metoclopramide was the predominant first-line agent (69%), followed by haloperidol (26%), while second-line haloperidol was the predominant agent (47%), with wide variation in other nominated agents. Respondents favoring metoclopramide as first-line tended to use haloperidol second-line (65%), but not vice versa. Maximal doses for an individual antiemetic varied up to tenfold. CONCLUSION: For nausea, a commonly encountered symptom in palliative care, clinicians' favored metoclopramide and haloperidol; however, after these choices, there was large variation in antiemetic selection. While most clinicians recommended modifying meal size and frequency, use of other nonpharmacological therapies was limited.

The role of ondansetron in the management of cholestatic or uremic pruritus--a systematic review.

CONTEXT: Pruritus associated with hepatic or renal failure can be a troublesome symptom, refractory to treatment and associated with significant physical and emotional distress and a reduction in quality of life for patients already burdened with chronic disease. Serotonin has been implicated as a possible pathological mediator, and, therefore, 5HT(3) antagonists have been suggested as a possible therapeutic intervention. OBJECTIVES: This review of the literature systematically explores the role of ondansetron in the management of cholestatic or uremic pruritus. METHODS: Electronic databases were systematically searched for randomized controlled trials examining the role of ondansetron in cholestatic or uremic pruritus between 1966 and 2008. RESULTS: Five randomized controlled trials were included in this systematic review: three for cholestatic pruritus and two for uremic pruritus. All trials examined ondansetron vs. placebo, with differing treatment protocols. Overall, three studies showed no benefit to ondansetron over placebo; however, two studies in cholestatic pruritus showed small reductions in pruritus with questionable clinical significance. CONCLUSION: Ondansetron was demonstrated to have negligible effect on cholestatic or uremic pruritus on the basis of a limited number of studies.

The disparity between patient and nurse symptom rating in a hospice population.

BACKGROUND: Meticulous assessment, monitoring, and treatment of symptoms are key components of palliative care. The Symptom Assessment Scale (SAS) is a 0-10 numerical rating scale (NRS) used for self-report of sleep, appetite, nausea, bowels, breathing, fatigue, and pain. Ideally, symptom rating should be by self-report; however, the ratings are often completed by nurses. The aim of this study was to examine the relationship between simultaneous symptom ratings of patients and nurses in an Australian inpatient palliative care unit. METHODS: All inpatients and their treating nurse (blinded to the patient's report) scored the SAS weekly. Nurse symptom rating was considered accurate if the score for an individual symptom differed by ≤1. The relationship for each dyad was examined by comparing absolute values, mean differences, and Pearson correlations. RESULTS: Sixty-four pairs of symptom ratings were obtained from 29 patients (mean 65 years, male 55%, malignancy 90%, mean Karnofsky 50). The absolute differences were closest for nausea, bowels, and breathing domains, and worst for appetite. Mean differences and Pearson correlations did not adequately reflect the disparity between patient and nurse symptom rating, and nurses systematically underreported symptoms. The total difference for the seven items ranged from nurses overreporting the patients' symptoms by 39 points to underreporting by 31 out of a possible 70 points. DISCUSSION: Proxy symptom assessment only modestly correlates with patient symptom rating, can significantly misrepresent the patient's actual symptom burden, and should only be used when the patient is absolutely unable to contribute his or her own view.

An international initiative to create a collaborative for pharmacovigilance in hospice and palliative care clinical practice.

BACKGROUND: Medication registration currently requires evidence of safety and efficacy from adequately powered phase 3 studies. Pharmacovigilance (phase 4 studies, postmarketing data, adverse drug reaction reporting) provide data on more widespread and longer term use. Historically, voluntary reporting systems for pharmacovigilance have had low reporting rates, relying on ad hoc reporting and retrospective chart reviews, or prospective registries have often been limited to specific drugs or clinical conditions. Furthermore, these data are often irrelevant in hospice and palliative care due to the timeliness of which such data become available and the unique characteristics of our population and prescribing: compounding comorbidities, progressive organ failure, accumulation of symptom-specific medications, tendency to attribute toxicity to disease progression, use of old, off-patent medications, and incorporation of evolving evidence. There is a need for prospective, systematic pharmacovigilance in hospice and palliative care. METHOD: Here we describe an international, Web-based, 128-bit secure initiative to collect pharmacovigilance data documenting net clinical benefit and safety of common medications. The intention is for a diverse and large group of clinical units to record data prospectively on a small deidentified consecutive cohort of patients started on the medication of interest. A new medication would be studied every 3 months. Three key time points (different for each medication) will be assessed for each patient, collecting easily codefiable data at baseline, a point at which clinical benefit should be experienced, and a point at which short- to medium-term toxicities may occur. Toxicities can additionally be recorded at any time they occur. Data collection will take a maximum of 10 minutes per patient. CONCLUSION: The intention is to create an efficient, relevant system to improve hospice and palliative care with maximally generalizable results.

Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates.

BACKGROUND: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are mostly attributed to disease progression. OBJECTIVES: The aim of this study was to assess the feasibility of symptomatic adverse events in hospice and palliative care and assessing their incidence. METHODS: A retrospective, consecutive cohort of notes from a specialist palliative care inpatient service was surveyed by a clinical nurse consultant for symptomatic adverse events: falls, confusion, decreased consciousness, hypo- and hyperglycaemia, urinary retention, and hypotension. Demographic and clinical factors were explored for people at higher risk. RESULTS: Data were available on the most recent admissions of 65 people, generating >900 inpatient days. Fifty people (78%) had events precipitating admission, of whom 31 (62%) had at least one further event during admission. Eleven of 15 people who were admitted without an event experienced at least one during their admissions. Only 4 did not have an adverse event. During their stay, there were 0.13 (standard deviation [SD] = 0.19) events per patient per day. No drug-drug or drug-host events were noted. No clinical or demographic factors predicted groups at higher risk. CONCLUSIONS: This pilot highlights the feasibility of collecting, and ubiquity of, symptomatic adverse events, and forms a baseline against which future interventions to decrease the frequency or intensity can be measured. Given the frailty of hospice and palliative patients, any adverse event is likely to accelerate irreversibly their systemic decline.