PURPOSE OF REVIEW: Opioids are the only class of drug with the proven ability to control severe pain. The introduction of stringent opioid prescribing restrictions has inevitably impacted upon the ability of those prescribing opioids for advanced life-limited disease to practice as previously and could limit the supply of adequate pain relief to patients with cancer. This review considers the evidence that symptom management of patients with advanced cancer contributes to the "opioid problem" and whether there is adequate recognition of the risks involved.
RECENT FINDINGS: The literature suggests that the risk of opioid abuse is low in the palliative care population as is the risk of legal consequences for doctors prescribing opioids at the end of life. However, as many patients with cancer are living longer or surviving with chronic pain, palliative care physicians must be cognisant not only of the risks of long term opioid use but also of the risk of opioid misuse. Adherence to evidence or consensus-based guidelines is necessary to avoid inappropriate prescribing. In palliative care, it is appropriate not only to exercise a reasonable degree of opioid control and surveillance, primarily for the good of society, but also to ensure that the ability to treat pain in patients with advanced malignant disease is not compromised.
BACKGROUND: There are no processes that routinely assess end-of-life care in Australian general practice. This study aimed to develop a data collection process which could collect observational data on end-of-life care from Australian general practitioners (GPs) via a questionnaire and clinical data from general practice software.
METHODS: The data collection process was developed based on a modified Delphi study, then pilot tested with GPs through online surveys across three Australian states and data extraction from general practice software, and finally evaluated through participant interviews.
RESULTS: The developed data collection process consisted of three questionnaires: Basic Practice Descriptors (32 items), Clinical Data Query (32 items) and GP-completed Questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed Questionnaire achieved a satisfactory level of validity and reliability. Our interviews with 23 participating GPs demonstrated the feasibility and acceptability of this data collection process in Australian general practice.
CONCLUSIONS: The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of end-of-life care. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary end-of-life care in Australia.
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.
This study aimed to describe Australian long-term care (LTC) personnel’s knowledge and attitudes concerning palliative care for residents with advanced dementia, and explore relationships with LTC facility/personnel characteristics. An analysis was undertaken of baseline data from a cluster randomised controlled trial of facilitated family case conferencing for improving palliative care of LTC residents with advanced dementia (the ‘IDEAL Study’). Participants included any LTC personnel directly involved in residents’ care. Knowledge and attitudes concerning palliative care for people with advanced dementia were measured using the questionnaire on Palliative Care for Advanced Dementia. Univariate and multivariate analyses explored relationships between personnel knowledge/attitudes and facility/personnel characteristics. Of 307 personnel in the IDEAL Study, 290 (94.5%) from 19/20 LTCFs provided sufficient data for inclusion. Participants included 9 (2.8%) nurse managers, 59 (20.5%) registered nurses, 25 (8.7%) enrolled nurses, 187 (64.9%) assistants in nursing/personal care assistants and 9 (3.1%) care service employees. In multivariate analyses, a facility policy not to rotate personnel through dementia units was the only variable associated with more favourable overall personnel knowledge and attitudes. Other variables associated with favourable knowledge were a designation of nursing manager or registered or enrolled nurse, and having a preferred language of English. Other variables associated with favourable attitudes were tertiary level of education and greater experience in dementia care. Like previous international research, this study found Australian LTC personnel knowledge and attitudes regarding palliative care for people with advanced dementia to be associated with both facility and personnel characteristics. Future longitudinal research is needed to better understand the relationships between knowledge and attitudes, as well as between these attributes and quality of care.
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.
The hospital emergency department (ED) is the place where people most commonly seek urgent care. The initial diagnosis of an end-of-life (EOL) condition may occur in the ED. In this review we described the challenges; from the staff members' perspectives, to safe, appropriate, and high quality end-of-life care (EOLC) for people who are diagnosed with non-malignant diseases who present to ED settings internationally. We conducted a systematic review of peer-reviewed literature. PubMed, Scopus, CINAHL, Medline, and Web of Science were searched from 2007 to 2017. In this review the challenges in providing quality EOLC from staff viewpoints, for EOL people who are diagnosed with non-malignant progressive diseases in ED settings, were classified into eight themes: (1) EOLC education and training, (2) ED design, (3) Lack of family support, (4) Work Load, (5) ED staff communication and decision making, (6) EOLC quality in ED, (7) resource availability (time, space, appropriate interdisciplinary personnel) and (8) integrating palliative care (PC) in ED. The formulation of EOLC using this review result may help to improve the quality of life for dying people by providing ED staff with clear guidelines that can guide them in their daily practice.
Anticipatory planning for end of life requires a common language for discussion among patients, families, and professionals. Studies show that early Palliative Care (PC) interventions based on a problem-oriented approach can improve quality of life, support decision-making, and optimize the timing of medical treatment and transition to hospice services. The aim of this quality-improvement project was to develop a pragmatic structure meeting all clinical settings and populations needs. Based on the Medical Research Council (MRC) framework, a literature review identifying approaches commonly used in PC was performed. In addition, more than 500 hospital-based interprofessional consultations were analyzed. Identified themes were structured and compared to published approaches. We evaluated the clinical usefulness of this structure with an online survey among professionals. The emerged 'SENS'-structure stands for: Symptoms patients suffer from; End-of-life decisions; Network around the patient delivering care; and Support for the carer. Evaluation among professionals has confirmed that the 'SENS'-structure covers all relevant areas for anticipatory planning in PC. 'SENS' is useful in guiding patient-centered PC conversations and pragmatic anticipatory planning, alongside the regular diagnosis-triggered approach in various settings. Following this approach, 'SENS' may facilitate systematic integration of PC in clinical practice. Depending on clearly defined outcomes, this needs to be confirmed by future randomized controlled studies.
The aim of this study is to determine the accuracy, feasibility and acceptability of the surprise question (SQ) in combination with a clinical prediction tool (Supportive and Palliative Care Indicator Tool (SPICT)) in identifying residents who have palliative care needs in residential aged care facilities (RACFs) in Australia. A prospective cohort study in two RACFs containing both high-level care (including dementia) and low-level care beds. Directors of Nursing screened 187 residents at risk of dying by 12 months using first the SQ, and if positive, then the SPICT. At 12-months follow-up, deaths, hospitalisations, use of palliative care services, end-of-life care and clinical indicators were recorded. The SQ had a sensitivity of 70%, a specificity of 69.6%, a positive predictive value of 40.6% and a negative predictive value of 88.7% for death. All residents identified by the SQ had at least two general indicators of deterioration, while 98.8% had at least one disease-specific indicator on the SPICT. The SPICT marginally increased the ability to identify residents in need of proactive end-of-life planning. A combination of the SQ and the SPICT is effective in predicting palliative care needs in residents of aged care facilities, and may trigger timely care planning.
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: Chronic kidney disease (CKD) is a growing global problem affecting around 10% of many countries' populations. Providing appropriate palliative care services (PCS) to those with advanced kidney disease is becoming paramount. Palliative/supportive care alongside usual CKD clinical treatment is gaining acceptance in nephrology services although the collaboration with and use of PCS is not consistent.
METHODS: The goal of this study was to track and quantify the health service utilisation of people with CKD stages 3-5 over the last 12 months of life. Patients were recruited from a kidney health service (Queensland, Australia) for this prospective, longitudinal study. Data were collected for 12 months (or until death, whichever was sooner) during 2015-17 from administrative health sources. Emergency department presentations (EDP) and inpatient admissions (IPA) (collectively referred to as critical events) were reviewed by two Nephrologists to gauge if the events were avoidable.
RESULTS: Participants (n = 19) with a median age of 78 years (range 42-90), were mostly male (63%), 79% had CKD stage 5, and were heavy users of health services during the study period. Fifteen patients (79%) collectively recorded 44 EDP; 61% occurred after-hours, 91% were triaged as imminently and potentially life-threatening and 73% were admitted. Seventy-four IPA were collectively recorded across 16 patients (84%); 14% occurred on weekends or public holidays. Median length of stay was 3 days (range 1-29). The median number of EDP and IPA per patient was 1 and 2 (range 0-12 and 0-20) respectively. The most common trigger to both EDP (30%) and IPA (15%) was respiratory distress. By study end 37% of patients died, 63% were known to PCS and 11% rejected a referral to a PCS. All critical events were deemed unavoidable.
CONCLUSIONS: Few patients avoided using acute health care services in a 12 month period, highlighting the high service needs of this cohort throughout the long, slow decline of CKD. Proactive end-of-life care earlier in the disease trajectory through integrating renal and palliative care teams may avoid acute presentations to hospital through better symptom management and planned care pathways.
BACKGROUND: With an increasing ageing population in most countries, the role of general practitioners (GPs) and general practice nurses (GPNs) in providing optimal end of life (EoL) care is increasingly important.
OBJECTIVE: To explore: (1) patient and carer expectations of the role of GPs and GPNs at EoL; (2) GPs' and GPNs' contribution to advance care planning (ACP) and (3) if primary care involvement allows people to die in the place of preference.
METHOD: Systematic literature review.
DATA SOURCES: Papers from 2000 to 2017 were sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 51 papers were relevant. Patients and carers expect their GPs to be competent in all aspects of palliative care. They valued easy access to their GP, a multidisciplinary approach to care and well-coordinated and informed care. They also wanted their care team to communicate openly, honestly and empathically, particularly as the patient deteriorated. ACP and the involvement of GPs were important factors which contributed to patients being cared for and dying in their preferred place. There was no reference to GPNs in any paper identified.
CONCLUSIONS: Patients and carers prefer a holistic approach to care. This review shows that GPs have an important role in ACP and that their involvement facilitates dying in the place of preference. Proactive identification of people approaching EoL is likely to improve all aspects of care, including planning and communicating about EoL. More work outlining the role of GPNs in end of life care is required.
BACKGROUND: Prescribing medications for nursing home residents with advanced dementia should focus on optimizing function and comfort, reducing unnecessary harms and aligning care goals with a palliative approach.
OBJECTIVE: The aim of the study was to estimate the proportion of Australian nursing home residents with advanced dementia receiving potentially inappropriate medications, and identify those most commonly prescribed and factors associated with their use.
DESIGN: Data were collected through retrospective audit of medication charts.
SETTING/SUBJECTS: Two hundred eighteen nursing home residents with advanced dementia from 20 nursing homes participated in a cluster-randomized controlled trial of case conferencing (the IDEAL Study) from June 2013 to December 2014.
MEASUREMENTS: Inappropriate drug use was defined as medications classified as "never appropriate" by the Palliative Excellence in Alzheimer Care Efforts (PEACE) program criteria. Generalized linear mixed models were used to identify variables predicting use of "never" appropriate medications.
RESULTS: Over a quarter (n = 65, 30%) of residents received at least one medication classed as “never” appropriate, the most common being lipid-lowering agents (n = 38, 17.4%), antiplatelet agents (n = 18, 8.3%), and acetylcholinesterase inhibitors (n = 16, 7.3%). Residents who had been at the nursing home for =10 months (odds ratio [OR] 5.60, 95% confidence interval [CI] 1.74–18.06) and 11–21 months (OR 5.41, 95% CI 1.67–17.75) had significantly greater odds of receiving a never appropriate medication compared with residents who had been at the nursing home for >5 years.
CONCLUSIONS: Use of potentially inappropriate medications in Australian nursing home residents with advanced dementia is common. A greater understanding of the rationale that underpins prescribing of medications is required.
BACKGROUND: Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation.
METHOD: Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach.
RESULTS: Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time; support from management, staff and physicians; and positive family feedback.
CONCLUSION: The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.