Background: Health service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services.
Aim: To quantify health service usage by children and young people aged 0–21 years with a life-limiting condition admitted to hospital and health service facilities in Queensland, Australia during the 2011 and 2016 calendar years, and describe the clinical and demographic characteristics associated with health services usage.
Design: Retrospective health administrative data linkage of clinical and demographic information with hospital admissions was extracted using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision Australian Modification (ICD-10-AM) diagnostic codes. Data were analysed using descriptive statistics.
Setting/participants: Individuals aged 0–21 years with a life-limiting condition admitted to a Queensland Public Hospital and Health Service or private hospital.
Results: Hospital admissions increased from 17 955 in 2011 to 23 273 in 2016, an increase of 5318 (29.6%). The greatest percentage increase in admissions were for those aged 16–18 years (58.1%, n=1050), and those with non-oncological conditions (36.2%, n=4256). The greatest number of admissions by ICD-10-AM chapter for 2011 and 2016 were by individuals with neoplasms (6174, 34.4% and 7206, 31.0% respectively). Overall, the number of admissions by Indigenous children and young people increased by 70.2% (n=838).
Conclusions: Administrative data are useful to describe clinical and demographic characteristics and quantify health service usage. Available data suggest a growing demand for health services by children eligible for palliative care that will require an appropriate response from health service planners.
BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood.
OBJECTIVE: To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN's role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs.
CONCLUSIONS: Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.
Objective: The prevalence of life-limiting conditions in children in Australia is unknown; such data are needed to inform health service planning for paediatric palliative care. The aim of this study was to estimate the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland, Australia.
Methods: An observational study using linked administrative health data from the 2011 and 2016 calendar years was performed for all individuals with an International Statistical Classification of Diseases and Related Health Problems 10th Revision Australian Modification code relating to a life-limiting condition eligible for palliative care recorded against an admission to a public or private hospital and health service provider in Queensland or against a cause or underlying cause of death in the Queensland Registrar General Deaths.
Results: The overall prevalence of life-limiting conditions per 10000 population increased from 35.2 (95% confidence interval (CI) 34.2-36.2) in 2011 to 43.2 (95% CI 42.1-44.4) in 2016. This increase in prevalence was greatest for children <1 year of age and for those who identified as Aboriginal and Torres Strait Islander.
Conclusion: This study has estimated the prevalence of life-limiting conditions for children and young people aged 0-21 years living in Queensland. Estimation of the number of children and young people with life-limiting conditions can inform health service planning for paediatric palliative care in Queensland. Future research is needed to identify the number of children and young people with life-limiting conditions who do not have an admitted episode. What is known about the topic? Data from the UK indicate that the prevalence of life-limiting conditions among children and young people is increasing. However, such data are not available for the Australian population. Because prevalence data can be affected by population characteristics, it is important to establish country-specific epidemiological data rather than extrapolating data from other countries. Country-specific data can inform health planners and policy makers of the scale of the problem within a geographical and demographic context. This is essential for Australia given the diverse geographical and demographic characteristics and specific needs of Aboriginal and Torres Strait Islander peoples. What does this paper add? This study is the first to provide an estimate of the prevalence of life-limiting conditions in children and young people aged 0-21 years in Queensland. Estimates include the prevalence of life-limiting conditions in children and young people who identify as being of Aboriginal and/or Torres Strait Islander descent. What are the implications for practitioners? The prevalence of life-limiting conditions in Queensland is greater than previously thought. There is a need to grow both a generalist and specialist paediatric palliative care workforce in response to this increasing prevalence. The estimates of prevalence proportions from this study provide the foundation on which future health service activities can be built because they provide country-specific clinical and demographic characteristics.
BACKGROUND: Voluntary assisted dying was legalized in Victoria, Australia in June 2019, and was the first jurisdiction internationally to legislatively mandate training for doctors conducting eligibility assessments of patients. Mandatory training was designed as a safeguard to ensure compliance within the system, so that only eligible patients would gain access to voluntary assisted dying.
OBJECTIVE: This article outlines the development of training mandated for doctors prior to undertaking eligibility assessments for voluntary assisted dying. The training addressed required legal knowledge, including doctors' roles, duties and legal protections, and also provided instruction on relevant clinical skills.
DESIGN: Training design was based on 2 main principles: to comprehensively impart the legal duties imposed by the legislation; and to be readily accessible for busy doctors. The law was first mapped into a curriculum, and circulated to medical colleges, societies and professional organizations as well as international experts for feedback. The training was converted into an online e-learning format and tested at a focus group of doctors.
RESULTS: The training comprises 9 modules including an assessment module. While the predominant focus of the modules is on law, they also contain some clinical components and links to further resources. Modules also contain videos, case studies and interactive exercises. The assessment consists of 30 questions, selected randomly from a question bank, with a pass mark of 90%.
CONCLUSION: The Victorian legislatively-mandated voluntary assisted dying training provides standardized baseline knowledge to enhance the quality and consistency of decision-making by doctors. While further evaluation of this training is needed, it may provide a model for other jurisdictions considering making voluntary assisted dying lawful.
BACKGROUND: Despite improvements in medical care, patients with advanced cancer still experience substantial symptom distress. There is increasing interest in the use of medicinal cannabinoids but little high-quality evidence to guide clinicians. This study aims to define the role of a 1:1 delta-9-tetrahydrocannabinol/cannabidiol (THC/CBD) cannabinoid preparation in the management of symptom burden in patients with advanced cancer undergoing standard palliative care.
METHODS AND DESIGN: One hundred fifty participants will be recruited from five sites within the Queensland Palliative Care Research Group (QPCRG) and randomly assigned to an active treatment or placebo group. This study is a pragmatic multicentre, randomised, placebo-controlled, two-arm trial of escalating doses of an oral 1:1 THC/CBD cannabinoid preparation. It will compare efficacy and safety outcomes of a titrated dose (10 mg/10 mg/mL oral solution formulation, dose range 2.5 mg/2.5 mg-30 mg/30 mg/day) against placebo. There is a 2-week patient-determined titration phase, using escalating doses of 1:1 THC/CBD or placebo, to reach a dose that achieves symptom relief with tolerable side effects. This is then followed by a further 2-week assessment period on the stable dose determined in collaboration with clinicians. The primary objective is to assess the effect of escalating doses of a 1:1 THC/CBD cannabinoid preparation against placebo on change in total symptom score, with secondary objectives including establishing a patient-determined effective dose, the change in total physical and emotional sores, global impression of change, anxiety and depression, opioid use, quality of life and adverse effects.
DISCUSSION: This will be the first placebo-controlled clinical trial to rigorously evaluate the efficacy, safety and acceptability of 1:1 THC/CBD for symptom relief in advanced cancer patients. This study will allow the medical community to have some evidence to present to patients wishing to access cannabis for their symptoms caused by advanced malignancy.
TRIAL REGISTRATION: ACTRN, ACTRN12619000037101 . Registered on 14 January 2019. Trial Sponsor: Mater Misericordiae Limited (MML) and Mater Medical Research Institute Limited (MMRI)-Raymond Terrace, South Brisbane, Brisbane, QLD, Australia.
Background: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. To enhance primary EoLC, the facilitators and barriers to their provision need to be understood.
Objective: To provide a comprehensive description of the facilitators and barriers to GP and GPN provision of PC or EoLC.
Method: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, PsycInfo, Embase, Joanna Briggs Institute and Cochrane databases.
Results: From 6209 journal articles, 62 reviewed papers reported the GP’s and GPN’s role in EoLC or PC practice. Six themes emerged: patient factors; personal GP factors; general practice factors; relational factors; co-ordination of care; availability of services. Four specific settings were identified: aged care facilities, out-of-hours care and resource-constrained settings (rural, and low-income and middle-income countries). Most GPs provide EoLC to some extent, with greater professional experience leading to increased comfort in performing this form of care. The organisation of primary care at practice, local and national level impose numerous structural barriers that impede more significant involvement. There are potential gaps in service provision where GPNs may provide significant input, but there is a paucity of studies describing GPN routine involvement in EoLC.
Conclusions: While primary care practitioners have a natural role to play in EoLC, significant barriers exist to improved GP and GPN involvement in PC. More work is required on the role of GPNs.
BACKGROUND: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered.
AIM: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief.
DESIGN: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique.
SETTING/PARTICIPANTS: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia.
RESULTS: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief.
CONCLUSION: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients.
Background: Despite improvements in medical care, patients with advanced cancer still experience substantial symptom distress. There is increasing interest in the use of medicinal cannabinoids, but there is little high quality evidence to guide clinicians. This study aims to define the role of cannabidiol (CBD) in the management of symptom burden in patients with advanced cancer undergoing standard palliative care.
Methods and design: This study is a multicentre, randomised, placebo controlled, two arm, parallel trial of escalating doses of oral CBD. It will compare efficacy and safety outcomes of a titrated dose of CBD (100 mg/mL formulation, dose range 50 mg to 600 mg per day) against placebo. There is a 2-week patient determined titration phase, using escalating doses of CBD or placebo to reach a dose that achieves symptom relief with tolerable side effects. This is then followed by a further 2-week assessment period on the stable dose determined in collaboration with clinicians.
Discussion: A major strength of this study is that it will target symptom burden as a whole, rather than just individual symptoms, in an attempt to describe the general improvement in wellbeing previously reported by some patients in open label, non controlled trials of medicinal cannabis. Randomisation with placebo is essential because of the well-documented over reporting of benefit in uncontrolled trials and high placebo response rates in cancer pain trials. This will be the first placebo controlled clinical trial to evaluate rigorously the efficacy, safety and acceptability of CBD for symptom relief in advanced cancer patients. This study will provide the medical community with evidence to present to patients wishing to access medicinal cannabis for their cancer related symptoms.
Trial registration number: ALCTRN12618001220257 Registered 20/07/2018.
Terminally ill cancer patients with limited life expectancies (LLEs) are often prescribed multiple medications to control acute symptoms associated with cancer such as dyspnoea, pain, nausea and vomiting, and anxiety. Medications are also commonly prescribed to prevent or treat other common, long-term comorbid conditions such as hypertension, diabetes mellitus and hyperlipidaemia. Early identification of unnecessary preventive medications at the end of life can improve quality of life. Limited research has investigated whether preventive medications are withdrawn in patients with terminal cancer. The aim of this project was to evaluate the prevalence of preventive medication use in terminally ill cancer patients with LLE of 6 months or less.
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BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care.
AIM: To develop a prompt list suitable for paediatric palliative care.
DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups.
PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service.
RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list.
CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
Background: Diverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.
Aims: To explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.
Methods: A semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.
Findings: Major themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.
Discussion: This suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.
Conclusions: Findings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.
Objectives: Methotrimeprazine is commonly used for the management of nausea but never tested formally against other drugs used in this setting. The aim was to demonstrate superior antiemetic efficacy.
Design: Double-blind, randomised, controlled trial of methotrimeprazine versus haloperidol.
Setting 11 palliative care sites in Australia.
Participants: Participants were >18 years, had cancer, an average nausea score of =3/10 and able to tolerate oral medications. Ineligible patients had acute nausea related to treatment, nausea for which a specific antiemetic was indicated, were about to undergo a procedure or had received either of the study drugs or a change in glucocorticoid dose within the previous 48 hours.
Interventions: Based on previous studies, haloperidol was used as the control. Participants were randomised to encapsulated methotrimeprazine 6·25 mg or haloperidol 1·5 mg one time or two times per day and assessed every 24 hours for 72 hours.
Main outcome measures: A =two-point reduction in nausea score at 72 hours from baseline. Secondary outcome measures were as follows: complete response at 72 hours (end nausea score less than 3), response at 24 and 48 hours, vomiting episodes, use of rescue antiemetics, harms and global impression of change.
Results: Response to treatment at 72 hours was 75% (44/59) in the haloperidol (H) arm and 63% (36/57) in the methotrimeprazine (M) arm with no difference between groups (intention-to-treat analysis). Complete response rates were 56% (H) and 51% (M). In the per protocol analysis, there was no difference in response rates: (85% (44/52) (H) and 74% (36/49) (M). Complete per protocol response rates were 64% (H) and 59% (M). Toxicity worse than baseline was minimal with a trend towards greater sedation in the methotrimeprazine arm.
Conclusion: This study did not demonstrate any difference in response rate between methotrimeprazine and haloperidol in the control of nausea.
BACKGROUND: Early identification of approaching end-of-life and care planning improve outcomes at the end of life. Nevertheless, the majority of people who die are not identified in time to enable appropriate care planning. We aimed to describe the challenges general practitioners (GPs) found in providing end-of-life care; what prompted GPs to identify and discuss approaching end of life with their patient and how their practice changed.
METHODS: We conducted a qualitative study of 15 Australian GPs using semi-structured interviews, examining end-of-life care of one of their randomly selected, deceased patients. Interviews were analysed using a general inductive approach.
RESULTS: When a life-limiting prognosis was articulated, GPs integrated end-of-life care into their clinical care directly. Care often included a care plan developed in consultation with the patient. Even when death was not articulated, GPs were aware of approaching end of life and changed their focus to comfort of the patient. GPs generally had an informal care plan in mind, but this developed gradually and without discussing these plans with the patient. How GPs provided end-of-life care depended primarily on patient traits (eg, willingness to discuss physical decline) and the GP's characteristics (eg, experience, training and consulting style).
CONCLUSIONS: GPs were aware of their patients' approaching end of life and care was adjusted accordingly. However, under certain circumstances this was not explicitly articulated and discussed. It is not clear if implicit but unarticulated end-of-life care is sufficient to meet patients' needs. Future studies should investigate this.
BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide end-of-life care (EoLC) as the population ages. To enhance primary palliative care (PC), the care they provide needs to be understood to inform best practice models of care.
OBJECTIVE: To provide a comprehensive description of the self-reported role and performance of GPs and GPNs in (1) specific medical/nursing roles, (2) communication, (3) care co-ordination, (4) access and out-of-hours care, and (5) multidisciplinary care.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 29 reviewed papers reported the GPs' and GPNs' role in EoLC or PC practice. GPs report a central role in symptom management, treatment withdrawal, non-malignant disease management and terminal sedation. Information provision included breaking bad news, prognosis and place of death. Psychosocial concerns were often addressed. Quality of communication depended on GP-patient relationships and GP skills. Challenges were unrealistic patient and family expectations, family conflict and lack of advance care planning. GPs often delayed end-of-life discussions until 3 months before death. Home visits were common, but less so for urban, female and part-time GPs. GPs co-ordinated care with secondary care, but in some cases parallel care occurred. Trust in, and availability of, the GP was critical for shared care. There was minimal reference to GPNs' roles.
CONCLUSIONS: GPs play a critical role in palliative care. More work is required on the role of GPNs, case finding and models to promote shared care, home visits and out-of-hours services.
BACKGROUND: The provision of end-of-life care remains a significant component of work for clinicians in critical care settings. Critical care nurses report that this area of practice receives limited attention in education and training.
OBJECTIVES: The objective of this study was to identify and describe the end-of-life care content in postgraduate critical care nursing programs in Australia.
METHODS: Using a descriptive exploratory research design, an Internet search was undertaken in August 2015, identifying 17 education providers offering postgraduate critical care nursing programs. Thirteen individuals agreed to participate in a structured telephone interview regarding end-of-life content in their postgraduate program. Descriptive statistics were calculated to summarise the data obtained.
RESULTS: Twelve participants reported that end-of-life care content was explicitly addressed in their postgraduate critical care nursing programs, yet variation in actual content areas covered was evident. The majority of programs addressed content related to organ donation (92%) and legal and ethical issues (77%). However, content least commonly identified as covered pertained to the work of the nurse in providing direct clinical care to the patient at the end of life and his or her family, including the physical changes experienced by the dying patient (31%), respiratory management encompassing withdrawal of ventilation and symptom management (23%), emotional support of family (23%), care of the body after death (23%), and the process of withdrawing life-sustaining treatment (15%). Participants (92%) agreed that end-of-life content was important in postgraduate critical care nursing programs, with 77% of participants agreeing that more time should be allocated to end-of-life content.
CONCLUSIONS: This study provides preliminary evidence of the variation in end-of-life content in postgraduate critical care nursing programs in Australia. Addressing gaps in end-of-life care content in formal education, including clinical care of the dying patient, is urgently needed to address the complexity of this phase of care that is so frequently provided in critical care units.
AIM: To provide expert consensus on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying.
BACKGROUND: Identification of people who are at risk of deteriorating and dying is essential to facilitate patient autonomy, appropriate treatment decisions, and effective end-of-life care.
DESIGN: A three-step modified Delphi approach.
METHODS: The study was conducted over 6 months (September 2015-March 2016) to gather opinion from an international panel of experts (N = 27) on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. The first round was informed by a systematic review of prognostic factors present in the final months of life for people with a haematological malignancy. Consensus was achieved if 70% of responses fell within two points on a seven-point Likert-type scale.
FINDINGS: Consensus was achieved on the following 11 clinical indicators: (a) advancing age; (b) declining performances status; (c) presence of co-morbidities; (d) disease status; (e) persistent infections (bacterial and viral); (f) fungal infections; (g) severe graft versus host disease; (h) requiring high care; (i) signs of frailty; (j) treatment limitations; and (k) anorexia and/or weight loss. Consensus was also achieved on associated themes and statements for each indicator.
CONCLUSION: The findings of this study indicate that subjective clinician-assessed indicators that are contextually relevant to the nature of haematological malignancies are markers of risk. This study has provided valuable preliminary findings on the topic and will inform future research.
BACKGROUND: Identifying people who are at risk of deteriorating and dying is essential to inform goals of care, appropriate treatment decisions, patient autonomy, and effective end-of-life care. Limited literature exists on predicting survival near the end of life for people with a hematological malignancy.
OBJECTIVE: To identify the key clinical indicators that signal a person with a hematological malignancy is at high risk of deteriorating and dying.
DESIGN, SETTING, PARTICIPANTS: Eleven clinical indicators identified in a Delphi approach were tested via a retrospective case–control study. Each indicator was assessed for at each in-patient admission between living (n = 236) and deceased (n = 120) people with a hematological malignancy who were admitted to a large tertiary hospital between 1st July 2014 and 31st December 2015.
RESULTS: Six clinical indicators were independently associated with mortality in the final three months of life: declining performance status (Odds Ratio [OR] 7.153, 95% Confidence Intervals [CI] 3.281–15.597, p = < 0.001); treatment limitations of the hematological malignancy (OR 7.855, 95% CI 3.528–17.489, p = < 0.001); relapse, refractory or persistent disease (OR 3.749, 95% CI 1.749–8.039, p = 0.001); presence of two or more comorbidities (OR 2.991, 95% CI 1.319–6.781, p = 0.009); invasive fungal infections (OR 4.887, 95% CI 1.197–19.949, p = 0.027); and persistent infections (OR 6.072, 95% CI 2.551–14.457, p = < 0.001).
CONCLUSIONS: This study has identified six clinical indicators that signal a person with a hematological malignancy is at high risk of deteriorating and dying and may benefit from an assessment of palliative needs and proactive planning, along-side appropriate treatment.
Anecdotal evidence from Australia and abroad suggests that health professionals may fear potential legal and/or professional repercussions if their patient dies after receiving pain relieving medication at the end of life. As a result, patients may be under-medicated and their pain and other symptoms not adequately relieved. The regulatory repercussions from inappropriate administration of medications are potentially broad and include criminal charges, civil negligence claims, coronial investigations and disciplinary proceedings. But despite these potentially serious repercussions, a review of publicly available cases in Australia reveals there has been comparatively little judicial or quasi-judicial scrutiny where over-medication is alleged to have resulted in a patient's death. In this article, we describe the regulatory framework that governs this field of medical practice and analyse the extent to which the actions of health professionals have been scrutinised, and the consequences of that scrutiny. We identify a number of themes arising from this analysis and conclude that fears of legal or professional repercussions are largely unfounded, and that existing laws and other forms of regulation should not inhibit the prescription and administration of adequate pain and other symptom relief to people at the end of life.
Background: Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.
OBJECTIVE: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.
METHOD: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.
RESULTS: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).
SIGNIFICANCE OF RESULTS: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.
OBJECTIVE: To consider whether and how family members and clinicians discuss end of life during paediatric palliative care consultations.
METHODS: Nine naturally occurring paediatric palliative care consultations were video recorded and analysed using conversation analytic methods.
ANALYSIS: Focusing on three consultations in which end of life was treated as a certain outcome, analysis explored ways in which end of life was made either implicit or explicit within these consultations. Our analysis suggests that end of life was made explicit when: 1) ancillary to the current focus of discussion, 2) in relation to someone else's child, or 3) specifically relevant to the local context of the discussion. More commonly, in all other instances in the data, end of life was made implicit during discussions relating to this matter.
CONCLUSION: This preliminary research indicates that the local context of a conversation can influence how end of life is mentioned and discussed.
PRACTICE IMPLICATIONS: Clinicians often are encouraged to promote honest and 'open' discussions about end of life. Our findings show that it is not necessary to explicitly mention end of life in order to discuss it.