Background: The therapeutic landscape in medical oncology continues to expand significantly. Newer therapies, especially immunotherapy, offer the hope of profound and durable responses with more tolerable side effect profiles. Integrating this information into the decision making process is challenging for patients and oncologists. Systemic anticancer treatment within the last thirty days of life is a key quality of care indicator and is one parameter used in the assessment of aggressiveness of care.
Methods: A retrospective review of medical records of all patients previously treated at Goulburn Valley Health oncology department who died between 1 January 2015 and 30 June 2018 was conducted. Information collected related to patient demographics, diagnosis, treatment, and hospital care within the last 30 days of life. These results were presented to the cancer services meeting and a quality improvement intervention program was instituted. A second retrospective review of medical records of all patients who died between 1 July 2018 and 31 December 2018 was conducted in order to measure the effect of this intervention.
Results: The initial audit period comprised 440 patients. 120 patients (27%) received treatment within the last 30 days of life. The re-audit period comprised 75 patients. 19 patients (25%) received treatment within the last 30 days of life. Treatment rates of chemotherapy reduced after the intervention in contrast to treatment rates of immunotherapy which increased. A separate analysis calculated the rate of mortality within 30 days of chemotherapy from the total number of patients who received chemotherapy was initially 8% and 2% in the re-audit period. Treatment within the last 30 days of life was associated with higher use of aggressive care such as emergency department presentation, hospitalisation, ICU admission and late hospice referral. Palliative care referral rates improved after the intervention.
Conclusion: This audit demonstrated that a quality improvement intervention can impact quality of care indicators with reductions in the use of chemotherapy within the last 30 days of life. However, immunotherapy use increased which may be explained by increased access and a better risk benefit balance.
OBJECTIVE: The objective of this study is to map the existent research undertaken in Australia into broad thematic areas and identify the characteristics of the studies and areas of future research in the literature.
METHODS: A scoping review methodology was employed to map the current areas of research undertaken in Australia since January 2000 until the end of December 2018 according to years of publications, types of studies, populations studied, research themes, and areas of focus.
RESULTS: Our review identified 1,405 Australian palliative care research publications between January 2000 and December 2018. Nearly 40% of the studies were quantitative (39%) and a third were qualitative studies (31%). The remainder of the studies were reviews, mixed methods, quality improvement projects, and others. One-third (30%) of the research was done with carers' participants followed by nurses (22%) and doctors and physicians (18%). The most frequently reported diagnosis in the studies was cancer with 42% of the publication total. The most frequently explored theme was physical symptoms (such as pain, breathlessness, nausea, delirium, and dyspnea) with a total of 16% of all articles followed by communication (15%). There was a large gap to the next most frequently explored theme with service delivery (9%) and coordination of care (8%). Assessment of patients (7%), end-of-life decision-making (6%), and rural/regional (6%) all produced a similar number of publications. Very few studies addressed topics such as quality of life, E-Health, after-hours care, spirituality, and health economics. Moreover, there were only 15 (1%) studies focused on the last days of life.
SIGNIFICANCE OF THE RESULTS: The current review presented a comprehensive search of the literature across almost two decades in Australia in the palliative care setting. It has covered a breadth of research topics and highlighted urgent areas for further research.
Our choice for care at the end of our lives is constrained by many factors, including the options available to us, our capacity to choose and the social structures that constrain our options and therefore our choices. Working with the interaction between personal agency and social constraints is a core public health activity. An intentional public health approach to palliative and end-of-life care can elucidate the direct relationship between our social circumstances and the quality of our end of life and uncover the implications of structural inequity for end-of-life choice. The approach reorients systems and settings to achieve accessible and equitable palliative and end of-life care for all, and identifies contributions that all jurisdictions, settings, organisations, sectors and communities can make to improving end-of-life care outcomes. Frameworks that support this shift in practice and policy are however in their infancy. Implementation frameworks that can structure and guide ‘how’ to translate public health palliative care concepts into sustainable practice are needed. This paper reports on an evidence-based Australian public health palliative care framework designed to achieve this.
Background: Hospital Emergency Departments (EDs) experience high presentation rates from older adults residing in Aged Care Facilities (ACFs), yet very few intervention studies have addressed the care needs of this population group. We designed and implemented a nurse-led model of care for older adults from ACFs, and determined its impact on patient outcomes.
Methods: This 12-month pre–post intervention study was conducted during 2013–2014, with follow-up during 2015–2016. Participants included all older adults presenting from ACFs to the ED of Mater Hospital Brisbane (MHB), Australia. Frailty status was determined using the Clinical Frailty Scale (CFS).
Results: All participants were frail (n = 1130), with 19% severely frail, 55% very-severely frail, and 26% terminally ill. The intervention resulted in several improvements in patient outcomes, including significant reductions in ward admissions and 28-day representation rates.
Conclusion: Significant improvements can be achieved by integration of an acute frail older person service into an ED.
Background: The palliative care population is prescribed a large number of drugs, increasing as patients deteriorate. The cumulative effects of these medications combined with underlying symptom burden can result in significant morbidity. There is an urgent need to describe possible symptomatic events that could be exacerbated by commonly prescribed drugs in palliative care and their impact.
Objectives: To trial the feasibility and acceptability of determining baseline symptomatic event rates for community palliative care patients from which a composite measure of symptomatic events can be developed.
Design: This prospective pilot study of patient-reported symptomatic events recruited a convenience cohort of 27 community palliative care patients in a metropolitan specialist palliative care service in Australia.
Results: This study has demonstrated a high prevalence rate of symptomatic events (total crude event/participant day rate 0.87) in the study population.
Conclusion: Data collection of patient-centered symptomatic events was acceptable and feasible to participants. This pilot supports a fully powered study.
Aim: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period.
Methods: A retrospective review of medical records was conducted for all paediatric inpatient deaths at the Royal Children's Hospital, Melbourne from April 2015 to April 2016, and results were compared to 2007 data from our centre. 2 tests were used for comparisons.
Results: A total of 101 deaths occurred in the inpatient setting in 2015–2016. Most deaths followed WWMT (88/101, 87%) and occurred in children with pre-existing chronic conditions (85/101, 85%). There was a shift to earlier discussions with parents regarding WWMT compared to 10 years prior. Cases where discussions began prior to the last admission increased from 4 to 19% (P = 0.004). There was increased paediatric palliative care (PPC) involvement (10 vs. 37%, P < 0.001), and a slightly greater proportion of children died outside of intensive care (16 vs. 22%, P = 0.25). In 2015–2016, subgroup analysis showed that children who died as inpatients but outside of intensive care were 76% more likely to have PPC involved than those who died in intensive care (P < 0.001). Their families were 51% more likely to have discussed WWMT with medical staff before the last admission (P < 0.001).
Conclusions: The last decade has seen an increase in PPC involvement and advance discussions around WWMT at our centre. Both of these are associated with death outside of intensive care.
BACKGROUND: Care home residents are frequently transferred to hospital, rather than provided with appropriate and timely specialist care in the care home.
AIM: To determine whether a model of care providing specialist palliative care in care homes, called Specialist Palliative Care Needs Rounds, could reduce length of stay in hospital.
DESIGN: Stepped-wedge randomised control trial. The primary outcome was length of stay in acute care (over 24-h duration), with secondary outcomes being the number and cost of hospitalisations. Care homes were randomly assigned to cross over from control to intervention using a random number generator; masking was not possible due to the nature of the intervention. Analyses were by intention to treat. The trial was registered with ANZCTR: ACTRN12617000080325. Data were collected between 1 February 2017 and 30 June 2018.
SETTING/PARTICIPANTS: 1700 residents in 12 Australian care homes for older people.
RESULTS: Specialist Palliative Care Needs Rounds led to reduced length of stay in hospital (unadjusted difference: 0.5 days; adjusted difference: 0.22 days with 95% confidence interval: -0.44, -0.01 and p = 0.038). The intervention also provided a clinically significant reduction in the number of hospitalisations by 23%, from 5.6 to 4.3 per facility-month. A conservative estimate of annual net cost-saving from reduced admissions was A$1,759,011 (US$1.3 m; UK£0.98 m).
CONCLUSION: The model of care significantly reduces hospitalisations through provision of outreach by specialist palliative care clinicians. The data offer substantial evidence for Specialist Palliative Care Needs Rounds to reduce hospitalisations in older people approaching end of life, living in care homes.
New approaches are needed to assist residential aged care (RAC) staff increase their skills and confidence in identifying when residents are nearing the dying phase and managing symptoms. One new evidence-based approach to improve palliative and end-of-life care in RAC is outreach Specialist Palliative Care Needs Rounds (monthly triage and risk stratification meetings – hereafter Needs Rounds); as yet untried in rural settings which may face unique enablers or challenges. Needs Rounds were introduced into two RAC facilities in the rural Snowy Monaro region of New South Wales, Australia. This study explored staff and general practitioners’(GPs’) experiences and perceptions of palliative and end-of-life care in rural RAC, and staff confidence and capability in providing such care, prior to, and after the introduction of Needs Rounds. A mixed-methods, pre- and post-intervention approach was taken, utilizing a Likert-scale written questionnaire and face-to-face semi-structured interviews. Between March and November 2018, 61 questionnaires were completed by 48 RAC staff (33 pre-, 28 post-intervention); eight staff and three GPs were interviewed. Despite system and site-specific barriers, staff self-reported that Needs Rounds increased their capability in providing end-of-life care (p = 0.04; 95% CI 0.20–7.66), and improved staff: (1) awareness of end of life, reflective practice, and critical thinking; (2) end-of-life decision making and planning; and (3) pain management. Needs Rounds are acceptable and feasible in rural RAC. Palliative and end-of-life care for residents may be improved through education, collaboration, communication, and planning. Further studies should explore running Needs Rounds via telehealth and/or utilizing a multidisciplinary approach.
A population survey finds that bereaved people draw upon diverse sources of support in their communities, from both formal services and informal networks of care. The formal service most frequently recognised by participants is provided by funeral directors. We outline some reasons for this, and explore one particular theme, memorialisation, in which funeral providers have traditionally been a lead discipline. Significant changes in memorialisation over recent decades challenge today’s funeral industry, but also draw our attention to underlying social changes reshaping our understanding not only of bereavement care but of care in general. Bereavement support is most effective when provided collaboratively by formal and informal care providers, but collaboration is challenged by policies that continue to privilege formal services over informal care. This challenge of developing constructive, respectful and complementary collaborations between formal and informal care is not peculiar to bereavement care, but is a social policy imperative for contemporary societies.
The main goal of palliative care is to relieve suffering. Opioids are an essential part of the pharmacological options required to address suffering by helping to relieve the pain and chronic breathlessness that may be experienced by someone with a life-limiting illness. This paper considers the recent history and current issues of the 'opioid crisis' providing recommendations to which regulatory and peak bodies can work with the Australian government, ensuring consistent adherence to WHO guidelines maintaining access to evidence based opioid management for palliative care patients whilst actively avoiding unintended suffering restricted access can cause. The recommendations are as follows:Review of the Palliative Care schedule of the Pharmaceutical Benefit Scheme Support of prescribers with current evidence, clinical practice guidelines and regulatory frameworks National opioid prescribing policies promoting linkages between palliative care and pain and addiction specialists. National real time monitoring of all opioid prescriptions Palliative care involvement in all opioids stewardship programs in acute services. Reform Medical Benefits Schedule to improve access for primary and other speciality practitioners to provide palliative care services. Compulsory palliative care education in undergraduate medical, nursing and allied health tertiary courses. Adequate, consistent stock of evidence based opioids for palliative care in community pharmacies and residential aged care facilities.These recommendations provide the regulatory guidance required to ensure persons with life limiting illness have continued access to safe and effective medication that can relieve suffering.
BACKGROUND: The objective of this study was to understand how aged care home health professionals perceive antimicrobial use near the end of life and how they perceive potential antimicrobial stewardship activities near the end of life in aged care homes.
METHODS: Qualitative semi-structured interviews were undertaken with general practitioners, nurses, and pharmacists who provide routine care in aged care homes in Victoria, Australia. Interviews were coded using frameworks for understanding behavior change.
RESULTS: Themes were established within 14 interviews, and an additional 6 interviews were undertaken to ensure thematic saturation. Two major themes emerged: (i) Antimicrobial stewardship activities near the end of life in aged care homes need to enable aged care home nurses to make decisions substantiated by evidence-based clinical knowledge. Antimicrobial stewardship should clearly be part of an aged care home nurse's role, and accreditation standards provide powerful motivation for behavior change. (ii) Antimicrobial stewardship activities near the end of life in aged care homes must address family confidence in resident wellbeing. Antimicrobial stewardship activities should be inclusive of family involvement, and messages should highlight the point that antimicrobial stewardship improves care.
CONCLUSIONS: Antimicrobial stewardship activities that reinforce evidence-based clinical decision-making by aged care home nurses and address family confidence in resident wellbeing are required near the end of life in aged care homes. Accreditation standards are important motivators for behavior change in aged care homes.
OBJECTIVE: The barriers and enablers to the uptake of advance care plans has been well documented but more so in metropolitan health services. Rural and regional areas have their own challenges of higher rates of chronic illness and an aging population when considering end of life care. This study aimed to explore the creation of advance care plans in a regional location that has service links to smaller health services.
DESIGN: A qualitative study involving thematic analysis of interview data.
SETTING: A regional local government area in Victoria, Australia.
PARTICIPANTS: Twelve representatives from rural and regional health services, including hospital, private practice and community organisation staff.
MAIN OUTCOME MEASURES: Barriers and enablers to the creation of advance care planning documents.
RESULTS: The data analysis yielded two main identified themes around Plan creation and communication of patient wishes: system and societal challenges to the creation and communication in advance care planning; and rural communities' expectation of the health service-patient relationship and advance care planning.
CONCLUSION: Although barriers to advance care planning are well known, rural and regional practitioners need to be aware of the effect long-term continuity of care from health practitioners and connections with health services has on advance care plan creation, and whether the paucity of written Plans effects end-of-life care. A potential solution was seen in the pending linkages to the national electronic patient record.
Background: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty.
Methods: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty.
Results: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care.
Conclusions: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.
BACKGROUND: End-of-life discussions often are not initiated until close to death, even in the presence of life-limiting illness or frailty. Previous research shows that doctors may not explicitly verbalize approaching end-of-life in the foreseeable future, despite shifting their focus to comfort care. This may limit patients' opportunity to receive information and plan for the future. General Practitioners (GPs) have a key role in caring for increasing numbers of patients approaching end-of-life.
OBJECTIVE: To explore GPs' thought processes when deciding whether to initiate end-of-life discussions.
METHODS: A qualitative approach was used. We purposively recruited 15 GPs or GP trainees from South-East Queensland, Australia, and each participated in a semi-structured interview. Transcripts were analyzed using inductive thematic analysis.
RESULTS: Australian GPs believe they have a responsibility to initiate end-of-life conversations, and identify several triggers to do so. Some also describe caution in raising this sensitive topic, related to patient, family, cultural and personal factors.
CONCLUSIONS: These findings enable the development of approaches to support GPs to initiate end-of-life discussions that are cognizant both of GPs' sense of responsibility for these discussions, and factors that may contribute to caution initiating them, such as anticipated patient response, cultural considerations, societal taboos, family dynamics and personal challenges to doctors.
Background: There is considerable interest in the use of cannabinoids for symptom control in palliative care, but there is little high-quality evidence to guide clinical practice.
Objectives: Assess the feasibility of using global symptom burden measures to assess response to medicinal cannabis, to determine median tolerated doses of cannabidiol (CBD) and tetrahydrocannabinol (THC), and to document adverse events (AEs).
Design: Prospective two-arm open-label pilot trial of escalating doses of CBD and THC oil.
Setting/Subjects: Participants had advanced cancer and cancer-related symptoms in a palliative and supportive care service in an Australian cancer center.
Measurements: The main outcome measures were the number of participants screened and randomized over the time frame, the number of participants completing days 14 and 28 and providing total symptom distress scores (TSDSs) (measured using the Edmonton Symptom Assessment Scale), and the change from baseline of the TSDS at day 14.
Results: Of the 21 participants enrolled (CBD, n = 16; THC, n = 5), 18 (86%) completed the primary outcome measure at day 14 and 8 completed at day 28. The median maximum tolerated doses were CBD, 300 mg/day (range 100–600 mg); THC, 10 mg/day (range 5–30 mg). Nine of 21 patients (43%) met the definition of response (=6 point reduction in TSDS). Drowsiness was the most common AE.
Conclusions: Trials of medicinal cannabis in advanced cancer patients undergoing palliative care are feasible. The doses of THC and CBD used in this study were generally well tolerated and the outcome measure of total symptom distress is promising as a measure of overall symptom benefit. Trial registration: ACTRN12618001205224.
Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications.
Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis.
Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex.
Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included.
Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts.
Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
Background: Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals’ role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered.
Aim: To explore end-of-life care professionals’ attitudes towards voluntary assisted dying 6 months prior to vote on legalization.
Design: Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques.
Participants: A total of 16 health professionals with experience in caring for people with life-limiting illness.
Results: Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available.
Conclusion: Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.
OBJECTIVE: The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia.
METHOD: Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken.
RESULTS: There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent.
CONCLUSION: Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.
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.