Dying at home: enablers and barriers.

BACKGROUND: According to the Grattan institute in 2014, 70% of Australians indicated a preference to die at home, however, only 14% of all deaths were at home. AIMS: To identify how patients can be supported to die at home if that is their preference. METHODS: A retrospective medical record audit of eligible Community Palliative Care (CPC) patients who indicated a wish to die at home was undertaken. FINDINGS: Out of a total of 114 patients, 74% indicated a preference to die at home. Of these, 66% achieved a home death, and most lived with a carer. Enablers for home death included family support, regular nursing visits and equipment. People who attended an emergency department in their last month of life, lived alone or were undergoing oncological treatment were more likely to die elsewhere. CONCLUSION: A range of enablers and barriers to home death were found, with many of the enablers being factors that prevented hospital presentations.

Does cancer type and adjuvant analgesic prescribing influence opioid dose?-a retrospective cross-sectional study.

Opioids are the backbone of cancer pain management. Minimal evidence exists examining the relationship between cancer type and opioid dose. Similarly, the use of adjuvant analgesics and its impact within an inpatient cancer setting is understudied. This study examined the influence of cancer type upon opioid dose, measured by oral morphine equivalent daily dose (oMEDD). The effect of adjuvant analgesics on patient oMEDD was also examined. This retrospective cross-sectional study examined records of 520 patients admitted to Royal Melbourne Hospital or Peter MacCallum Cancer Centre between 2016 and 2018 with advanced cancer. Number and dose of both opioid and adjuvant analgesics were collected along with demographic and cancer data. Comparisons of median oMEDD by cancer type [analysis of variance (ANOVA), non-parametric t-tests] and adjuvant analgesics (Kruskal-Wallis test) were performed. There were no statistically significant differences in oMEDD between the 12 cancer types (P=0.83; n=215). Patients co-prescribed pregabalin (n=102) and paracetamol (n=73) as adjuvant analgesics were on significantly higher daily oMEDD [60 mg (P=0.015), 90 mg (P<0.001), respectively]. Opioid dose did not differ significantly between cancer types. The observed use of adjuvant analgesics coincided with significantly higher oMEDD prescription which may relate to complex pain seen in this cohort of inpatients in a quarternary cancer centre. Future research should focus on pain type and aetiology, and pain scores in different cancer pain syndromes to determine the net effect of opioids and adjuvants in cancer pain prescribing.

Symptom burden in malignant and non-malignant disease on admission to a palliative care unit.

BACKGROUND: There is increasing recognition that patients with non-malignant diseases have comparable physical and psychosocial symptom burden to patients with cancer. There is currently limited data directly comparing symptom burden between these patient groups. OBJECTIVE: To investigate differences in symptom burden between patients with malignant and non-malignant conditions admitted to a palliative care unit (PCU). METHOD: A cross-sectional study involving 186 patients admitted to a PCU was undertaken. Patients were dichotomised into malignant or non-malignant disease categories. Symptom burden at admission was assessed using the Symptom Assessment Scale and Palliative Care Problem Severity Score. Group differences in symptoms were analysed using univariate and multivariate approaches. RESULTS: One hundred patients (53.8%) had cancer, with upper gastrointestinal the most common type (18.0%). Among the 86 patients with non-malignant disease, neurological conditions were most prevalent (40.7%). Patients admitted with non-malignant diseases were older, more functionally impaired and more likely to be deteriorating or terminal. A malignant diagnosis was associated with a higher likelihood of clinician-assessed pain, patient-assessed pain, fatigue, psychological/spiritual symptoms and other symptoms. However, when adjusted for confounders, disease category ceased to be a significant predictor of symptom burden. Younger patients experienced worse pain and patients in terminal phase experienced less symptom burden. CONCLUSION: Symptom burden was similar between patients with malignant and non-malignant disease after adjustment for confounders. Further research is needed to understand the palliative care needs of patients with non-malignant disease.

Evaluation of a Multidisciplinary Cachexia and Nutrition Support Service- The Patient and Carers Perspective.

The Barwon Health Cachexia & Nutrition Support Service (CNSS) is an outpatient service focused on improving clinical outcomes and quality of life for patients with or at high risk of cancer cachexia. Patients see a multidisciplinary team, comprising a palliative medicine physician, physiotherapist, dietitian, and nurse practitioner. This study evaluated the service from patient and carer perspectives. In 2016/17, semistructured interviews were conducted with 12 patients and 9 carers attending the service, focusing on: (1) reflection on experience of the CNSS, and (2) describing how a cachexia-specific service can meet their needs and concerns. Analysis generated 4 superordinate themes: evolving perception of service value, empowerment through person-centered care, communication to patients and carers regarding health/disease information, and the importance of the multidisciplinary team-based approach. Generally, patients and carers reported overall positive experiences with the service, particularly with regard to improved communication and management of the patient. Findings confirmed the patient-centered and individualized approaches were particularly valued. These insights are a critical step in the development of recommendations for future clinical management of cancer cachexia.

Managing Severe Chronic Breathlessness in Chronic Obstructive Pulmonary Disease Is Challenging for General Practitioners.

CONTEXT: Patients with advanced chronic obstructive pulmonary disease (COPD) can develop increasing breathlessness, which can persist despite optimal medical management-refractory breathlessness. Management can be challenging for all clinicians and requires a broad approach that includes optimization of disease directed therapies, non-pharmacological strategies to manage breathlessness and for some patients opioids. OBJECTIVES: To explore the approaches to breathlessness management and palliative care undertaken by Australian General Practitioners (GP) for patients with severe COPD and refractory breathlessness. METHODS: A case-vignette based survey was conducted with Australian GPs to determine their approaches to breathlessness management and palliative care in COPD. RESULTS: Of the 137 GPs, 66% recommended commencing an additional medication to manage refractory breathlessness. Thirty-eight GPs (28%) recommended opioids and 26 (19%) recommended guideline discordant treatments. Two-thirds of GPs had concerns regarding the use of opioids in COPD. Half (55%) of GPs were comfortable providing general palliative care to patients with COPD and 62 (45%) had referred patients with COPD to specialist palliative care services. Most respondents wanted further training to manage severe COPD and severe chronic breathlessness. CONCLUSION: Most GPs recognized and were willing to add specific treatments for severe chronic breathlessness. However, experience prescribing opioids for severe chronic breathlessness was low, with many practitioners holding significant concerns regarding adverse effects. Many GPs are uncomfortable offering a palliative approach to their COPD patients, yet these patients are not routinely referred to specialist palliative care services despite their immense needs. GPs therefore desire education and support to overcome these barriers.

Mapping non-malignant respiratory palliative care services in Australia and New Zealand.

Objective Despite needs, people with advanced non-malignant respiratory disease are infrequently referred to palliative care services. Integrated models of palliative care and respiratory service delivery have been advocated to address this inequity of access. This study mapped current ambulatory palliative care service provision for patients with advanced non-malignant respiratory disease in Australia and New Zealand. Methods An online survey was distributed to the palliative care physician membership of the Australian and New Zealand Society of Palliative Medicine. Information was sought regarding access to specific breathlessness and integrated respiratory and palliative care services, and their operation. Data were described using descriptive statistics. Results In all, 133 respondents (93 from Australia, 40 from New Zealand; representing 55 Australian and 26 New Zealand discrete sites) with complete data were available for analysis. More than half the respondents reported seeing patients with advanced non-malignant respiratory disease frequently (56/97; 58%), and 18 of 81 services (22%) reported having breathlessness or integrated respiratory and palliative care services caring for this patient group. Such services were mostly staffed by respiratory and palliative care doctors and nurses and based in the clinic environment, with limited support available outside this setting. Of the 63 respondents without existing breathlessness or integrated services, 49 (78%) expressed interest in their establishment, with limited resources cited as the most common barrier. Conclusions There is limited availability of integrated respiratory and palliative care or specialised breathlessness services in Australia and New Zealand despite widespread support by palliative care physicians. This study provides a snapshot to inform strategic service development. What is known about the topic? People with advanced respiratory disease have very significant morbidity with complex needs equivalent to, and in many cases more intense than, people with end-stage lung cancer; they also have significant mortality. Yet, these people frequently do not access palliative care services. The establishment of integrated respiratory and palliative care services has been advocated as an effective means to overcome the barriers to palliative care access. Such services have demonstrated improved patient and family-reported outcomes, as well as service-level improvements. What does this paper add? This paper maps the availability of integrated respiratory palliative care services in Australia and New Zealand. We reveal that although most palliative care physicians report seeing patients with advanced respiratory disease in practice, just one-fifth of services report having an integrated service approach. There was high interest and enthusiasm for such services (78%), but resources limited their establishment. What are the implications for practitioners? Palliative care services recognise the needs of patients with advanced respiratory disease and the benefits of integrated respiratory and palliative care services to address these needs, but scarcity of resources limits the ability to respond accordingly. This study provides a snapshot of current service level to inform strategic development.

Population-based analysis of radiotherapy and chemotherapy treatment in the last month of life within regional Australia.

BACKGROUND: Cancer treatment near end of life is not likely to add meaningful benefit and minimising intervention rates has been promoted as an indicator of quality of care. Population-based analysis of treatment allows comparative analysis of treatment rates and provides insight into patterns of care. AIMS: To report a population-based analysis of both radiotherapy and active systemic therapy (AST) delivery rates along with patterns of treatment within the last 14 and 30 days of life. METHODS: The Evaluation of Cancer Outcomes Registry records clinical information on all newly diagnosed cancer patients for the Barwon South West Region of Victoria, Australia. Diagnosis details, tumour type and stage as well as core treatment details and date of death were extracted for all patients diagnosed from 2009 to 2015 inclusive. RESULTS: A total of 12 760 cases cancers were recorded. The median age of all cases was 68.8, and 53% were male. AST was received by 3699 (29%) of patients and radiotherapy by 3811 (30%). Patient deaths within 14 and 30 days of treatment for AST were 4.3 and 8.7%, respectively, and deaths within 14 and 30 days of treatment for radiotherapy 3.8 and 8.0% respectively. Factors associated with death within 30 days of AST and/or radiotherapy were male gender, age greater than 70 years and higher disease stage (all P < 0.01). Treatment rates within 30 days of death were highest for lung cancer (23% of cases) and lowest for breast cancer (2% of cases). CONCLUSIONS: This population-based analysis of AST and radiotherapy treatment within the last 30 days of life within a region of Australia has shown overall treatment rates below 10%. Treatment rates appear influenced by both patient and tumour characteristics. Future focus on subgroups with high rates of late intervention may help minimise treatment unlikely to add benefit.

Use of clinical quality indicators to improve lung cancer care in a regional/rural network of health services.

PROBLEM: Optimal lung cancer care requires multidisciplinary team input, with access to specialised diagnostic and therapeutic services that may be limited in rural or regional areas and impact clinical outcomes. Clinical quality indicators can be used to measure the quality of care delivered to patients with lung cancer in a region and identify areas for improvement. We describe the implementation of internationally recognised clinical quality indicators for lung cancer care in the Barwon South Western region. DESIGN: The consensus of an expert panel was used for the selection of clinical quality indicators. The data were retrospectively collected from the Evaluation of Cancer Outcomes Barwon South West Registry, which systematically records detailed information on all new patients with cancer in the region. SETTING: Region-based health service. KEY MEASURES FOR IMPROVEMENT: Adherence to clinical quality indicator targets. STRATEGIES FOR CHANGE: Clinical quality indicators, which fall short of the expected targets, highlight areas for improvement in the service provided to patients with lung cancer. These results have prompted changes in the service offered to these patients, such as the introduction of a multidisciplinary lung cancer clinic. EFFECTS OF CHANGE: The multidisciplinary lung cancer clinic has streamlined the access to lung cancer services, including specialist consultations, diagnostics and therapeutic services, in a regional setting. Ongoing data collection is required to determine the effect of such changes on adherence to clinical quality indicator targets. LESSONS LEARNT: The regular monitoring of clinical quality indicators serves as a useful method of quality assurance in the care of patients with lung cancer. We expect these clinical quality indicators to also be used by other health services to analyse and improve services provided to patients with lung cancer.

The deteriorating patient representative on a palliative care quality committee: Ethical and practical considerations.

This case study describes the involvement of a patient representative on a palliative care committee and outlines some of the issues that arose as her health deteriorated. A summary of the increasing involvement of patient representation within health care governance is provided, and some of the challenges raised by the case, many of which may be relatively unique to palliative care, are discussed. It is hoped that presentation of this fairly novel scenario provides other palliative care providers with the opportunity to consider their own processes and practices around managing a similar situation should it occur in their healthcare setting.

Integrated respiratory and palliative care leads to high levels of satisfaction: a survey of patients and carers.

BACKGROUND: The Advanced Lung Disease Service is a unique, new model of integrated respiratory and palliative care, which aims to address the unmet needs of patients with advanced, non-malignant, respiratory diseases. This study aimed to explore patients' and carers' experiences of integrated palliative care and identify valued aspects of care. METHODS: All current patients of the integrated service and their carers were invited to complete a confidential questionnaire by post or with an independent researcher. RESULTS: Eighty-eight responses were received from 64 (80.0%) eligible patients and from 24 (60%) eligible carers. Most participants (84, 95.5%) believed the integrated service helped them to manage breathlessness and nearly all participants (87, 98.9%) reported increased confidence managing symptoms. One third of patients (34.4%) had received a nurse-led domiciliary visit, with nearly all regarding this as helpful. Most participants believed the integrated respiratory and palliative care team listened to them carefully (87, 98.9%) with opportunities to express their views (88, 100%). Highly valued aspects of the service were continuity of care (82, 93.2%) and long-term care (77, 87.5%). Three quarters of participants (66, 75.0%) rated their care as excellent, with 20.5% rating it as very good. Nearly all (87, 98.9%) participants reported that they would recommend the service to others. CONCLUSIONS: Patients and carers expressed high levels of satisfaction with this model of integrated respiratory and palliative care. Continuity of care, high quality communication and feeling cared for were greatly valued and highlight simple but important aspects of care for all patients.

Medication management for community palliative care patients and the role of a specialist palliative care pharmacist: A qualitative exploration of consumer and health care professional perspectives.

BACKGROUND: Pharmacists have a key role to play in optimisation of medication regimens and promotion of medication safety. The role of specialist pharmacists as part of the multidisciplinary palliative care team, especially in the primary care setting, is not widely recognised. AIM: To explore the perspectives of stakeholders about the gaps in the current model of community palliative care services in relation to medication management and to assess their opinions pertaining to the role of a specialist palliative care pharmacist in addressing some of those gaps. DESIGN: Qualitative study utilising three focus groups involving 20 stakeholders. Thematic analysis was carried out using a framework approach and interpreted in the context of the Chronic Care Model for improving primary care for patients with chronic illness. SETTING/PARTICIPANTS: Setting was a large regional Australian palliative care service. Participants included palliative care consumers and clinicians specifically patients, caregivers, physicians, nurses and pharmacists. RESULTS: Five major themes emerged from the focus groups: access to resources, medicines and information; shared care; challenges of polypharmacy; informal caregiver needs and potential roles of a palliative care pharmacist. Gaps in access to medicines/resources, training for generalist practitioners, communication between treating teams and lack of support for patients and carers were cited as factors adversely impacting medication management in community-based palliative care. CONCLUSION: While community-based palliative care is an essential aspect of meeting the health care demands of an ageing society, the current model has several gaps and limitations. An appropriately qualified and skilled pharmacist within the palliative care team may help to address some of the gaps in relation to medication access and appropriateness.

Palliative care for the patient without cancer

BACKGROUND: Palliative care aims to improve quality of life for patients with life-limiting illnesses. It is often linked to the care of people with cancer; however, patients with non-cancer end-stage conditions also have significant needs. OBJECTIVES: The aims of this paper are to discuss common trajectories of deterioration in non-malignant conditions, consider possible barriers to palliative care referral, review the principles of the palliative care approach and illustrate specific factors relevant for common non-cancer conditions. DISCUSSION: The symptom burden and care needs for patients with end-stage, nonmalignant illnesses are similar to those of patients with advanced cancer. These patients benefit from a palliative approach, comprising management of the underlying condition and attention to symptoms, psychosocial needs and carer support. Advance care planning provides an opportunity to prepare for future illness episodes, including provision of end-of-life care. General practitioners are well placed to provide palliative care for patients with advanced non-cancer illnesses.

Palliative radiotherapy utilization within a regional Australian palliative care unit.

BACKGROUND: Palliative radiotherapy has been demonstrated to be efficacious for symptom management in advanced malignancy however there are limited data investigating its use for inpatient palliative care patients. The aim of the current paper was to evaluate the utilization of radiotherapy amongst patients admitted to a regional Australian palliative care unit (PCU). METHODS: A retrospective cohort study was undertaken involving all Barwon Health PCU patients who received radiotherapy whilst an inpatient. A range of clinico-demographic, radiotherapy-specific and outcome measures were evaluated. Changes in opioid consumption were used as a surrogate for radiotherapy effectiveness. Demographic variables were analyzed descriptively and Wilcoxon Signed Rank Tests were used to compare opioid consumption before and after radiotherapy at time points one week, two weeks and three weeks. RESULTS: Sixty episodes of radiotherapy were provided to 51 PCU patients during the study period with 54 admissions included in the final analysis. Pain management was the commonest reason for radiotherapy treatment and most courses were multi-fractionated. Using the proportion of patients whose opioid dose decreased following radiotherapy as a marker for response, response rates ranged from 32-42%. Fortyeight percent of patients died during their PCU admission and the median survival from radiotherapy commencement was 36 days. CONCLUSIONS: A small proportion of all patients admitted to PCU received radiotherapy. Almost half of patients died during their admission and radiotherapy response rates were lower than have been reported for all-comers. More research is needed to optimize the stratification of PCU patients for radiotherapy.

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.

Palliative care in general practice: GP integration in caring for patients with advanced cancer.

BACKGROUND: Patients with advanced cancer often desire home-based care, placing general practitioners (GPs) at the centre of complex clinical situations. The objective of this article was to determine GPs' needs when providing home-based palliative care in collaboration with existing palliative care services. METHODS: A survey of GPs was conducted to determine knowledge, skills and confidence in providing community-based palliative care. RESULTS: Of the 56 respondents, 82% reported that they were involved in palliative management of at least one cancer patient in the previous year. A significant number of GPs (31%) lacked confidence in providing this care because of patient complexity, inadequate training and insufficient resources. Other barriers included poor communication from specialists and treating teams. Factors facilitating provision of home-based palliative care were community palliative care services and links to hospital-based palliative care teams. DISCUSSION: This survey highlights the importance of support and resources to empower GPs to confidently provide home-based palliative care for patients with advanced cancer.

Examining Clinical Utility of Imaging for Inpatient Palliative Care.

BACKGROUND: Medicine in the final months of life is increasingly interventional, both in the manner by which life may be prolonged and symptoms may be reduced. Radiology is frequently utilized to provide diagnostic clarity and improve symptom control. As with any intervention, examining the benefit and potential harms of a procedure is required to establish its role in ongoing clinical care. METHODS: This retrospective cohort study involved patients admitted to an inpatient palliative care unit between October 2013 and September 2014. Data were collected using clinical databases manually searched by the researchers. RESULTS: Of 388 admissions, there were a total of 154 imaging events completed in 85 patients. Patients who had imaging performed had longer mean length of stays, more likely to be discharged home, and male. Very few imaging events (4%) occurred in the 3 days prior to death and none on the day of death. In total, 43% of imaging confirmed the clinical suspicion and management changed 42% of times. Limbs X-rays and computed tomography brain had low rates of confirming clinical suspicion (21% and 17%) and changing management (21% and 33%). There were a total of 7 complications resulting from imaging, the majority due to interventional procedures. CONCLUSION: The use of imaging in inpatient palliative care seems to be of substantive utility, prompting alterations in management in >40% of instances. The majority of imaging occurred prior to the terminal phase of the disease and with few complications.