Population-based surveys suggest that up to 70% of Australians wish to receive care at home when faced with advanced terminal illness; however, only 14% achieve this goal. This is a comparatively low rate compared to other developed countries and due to a myriad of factors, including care fragmentation, lack of advance care planning, inadequate symptom control and limited availability of community-based palliative care services.
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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.
AIM: 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 (ECO) 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 2009-2015 inclusive.
RESULTS: A total of 12,760 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. This article is protected by copyright. All rights reserved.
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.
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.
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.
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.
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.