BACKGROUND: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs.
PURPOSE: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life.
METHOD: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted.
RESULTS: In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%).
CONCLUSIONS: Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.
OBJECTIVES: Family meetings (FMs) between clinicians, patients and family are recommended as a valuable communication and care planning method in the delivery of palliative care. However, there is a dearth of knowledge regarding FM characteristics, with few studies describing the prevalence, circumstances and content of FMs. The aims of this study were to: (1) measure the prevalence of FMs, (2) examine circumstance and timing of FMs, and (3) explore the content of FMs.
METHODS: A retrospective medical record audit was conducted of 200 patients who died in an Australian hospital of an expected death from advanced disease. Details of FMs were collected using an audit tool, along with patient demographics and admission data.
RESULTS: 33 patients (16.5%) had at least one FM during their inpatient stay. The majority of FMs occurred for patients admitted to an inpatient palliative care unit (59.5%) and were most commonly facilitated by doctors (81.0%). Patient attendance was frequent (40.5%). FM content fell into six categories: medical information, supportive communication behaviours of clinicians, psychosocial support for patients and families, end-of-life discussions, discharge planning and administrative arrangements.
CONCLUSIONS: Despite the benefits FMs confer, FMs appear to be infrequently used at the end of life. When FMs are used, there is a strong medical focus on both facilitation and content. Available FM documentation tools also appear to be underused. Clinicians are encouraged to have a greater understanding of FMs to optimise their use and adopt a proactive and structured approach to the conduct and documentation of FMs.
Evidence to support the use of antipsychotic medications for the management of delirium symptoms remains limited. The primary objective of this study was to compare the effect of antipsychotic and non-antipsychotic treatments for delirium symptoms among palliative care inpatients. Secondary outcomes were use of midazolam and overall survival. This involved retrospective analysis of medical records (November 2018 to April 2019) for adult palliative care patients diagnosed with delirium at an Australian tertiary hospital. NuDESC was used to assess symptoms daily from baseline to Day 3. All 65 patients (mean age 73.5 ± 13.7 years, 48% female, 59% with cancer) included received standard care which included management of underlying causes of delirium symptoms, of which 17 received additional treatment using antipsychotic medications. Forty-eight did not receive any antipsychotic medication. An absolute reduction in NuDESC score was observed in the group that did not receive additional treatment using antipsychotics (by 1.37 units, 95% CI 0.79–1.95, p < 0.0001). A significantly higher proportion of midazolam use (n = 9, 53% versus n = 2, 4%, p < 0.001) and shorter median survival (13 days versus 26 days, p = 0.03) was observed in the group of patients that received antipsychotics. The use of antipsychotic medications in addition to standard treatments targeting underlying precipitants did not lead to a significant improvement in delirium symptoms and was associated with a greater midazolam use and lower median duration of survival. Individualized treatment of underlying causes still appears to be essential in the management of delirium in patients receiving palliative care.
BACKGROUND: Hospitalisation rates for the older population have been increasing with end-of-life care becoming a more medicalised and costly experience. There is evidence that some of these patients received non-beneficial treatment during their final hospitalisation with a third of the non-beneficial treatment duration spent in intensive care units. This study aims to increase appropriate care and treatment decisions and pathways for older patients at the end of life in Australia. This study will implement and evaluate a prospective feedback loop and tailored clinical response intervention at three hospitals in Queensland, Australia.
METHODS: A stepped-wedge cluster randomised trial will be conducted with up to 21 clinical teams in three acute hospitals over 70 weeks. The study involves clinical teams providing care to patients aged 75 years or older, who are prospectively identified to be at risk of non-beneficial treatment using two validated tools for detecting death and deterioration risks. The intervention's feedback loop will provide the teams with a summary of these patients' risk profiles as a stimulus for a tailored clinical response in the intervention phase. The Consolidated Framework for Implementation Research will be used to inform the intervention's implementation and process evaluation. The study will determine the impact of the intervention on patient outcomes related to appropriate care and treatment at the end of life in hospitals, as well as the associated healthcare resource use and costs. The primary outcome is the proportion of patients who are admitted to intensive care units. A process evaluation will be carried out to assess the implementation, mechanisms of impact, and contextual barriers and enablers of the intervention.
DISCUSSION: This intervention is expected to have a positive impact on the care of older patients near the end of life, specifically to improve clinical decision-making about treatment pathways and what constitutes appropriate care for these patients. These will reduce the incidence of non-beneficial treatment, and improve the efficiency of hospital resources and quality of care. The process evaluation results will be useful to inform subsequent intervention implementation at other hospitals.
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.
In November 2017, the Victorian Voluntary Assisted Dying (VAD) Act was passed enabling people with a progressive terminal illness to end their life voluntarily. Heated debate abounded including, to some extent within palliative care, which was also challenged with developing processes around the legislation enactment.
OBJECTIVE: In response, the lead author convened a series of meetings of palliative care physicians: 1. To share ideas about preparations being undertaken within services; and 2. To re-establish professional cohesion following the divide that the legislation had presented.
DESIGN: Setting/Participants: A series of three closed meetings were held between the legislation passage and its implementation, with all Victorian palliative care physicians invited to attend. Meetings were facilitated by an experienced psychiatrist from outside the field.
RESULTS: These meetings proved very valuable as physicians collectively sought to define and respond to challenges, simultaneously reflecting on the personal and professional implications for individuals and the field. Key areas raised including gauging institutional 'readiness' for the legislation through staff surveys; the educational role of palliative care staff of the legislation implications; communication skills training; the role (if any) of palliative care in the processes of VAD; and the perceptions of palliative care itself in health services and the community. It was during the processes of discussing challenges and sharing solutions that the attendees appeared to re-affirm their professional interconnections. A description of the key elements of these discussions may be useful to others who may yet face similar circumstances with the introduction of VAD legislation.
Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.
With perpetual research, management refinement and increasing survivorship, cancer care is steadily evolving into a chronic disease model. Rehabilitation Physicians are quite accustomed to managing chronic conditions, yet, in Australia, Cancer Rehabilitation remains under-explored. Palliative Care Physicians, along with Rehabilitationists, are true Generalists, who focus on the whole patient and their social context, in addition to the diseased organ system. This, together with Palliative Care's expertise in managing the panoply of troubling symptoms that beset patients with malignancy, makes them natural allies in the comprehensive management of this patient group from the moment of diagnosis. This paper will explore the under-recognized and under-utilized parallels and synergies between the two specialties as well as identifying potential challenges and areas for future growth.
Background: Withdrawal from renal replacement therapy is common in patients with end-stage kidney disease (ESKD), but end-of-life service planning is challenging without population-specific data. We aimed to describe mortality after treatment withdrawal in Australian and New Zealand ESKD patients and evaluate death-certified causes of death.
Methods: We performed a retrospective cohort study on incident patients with ESKD in Australia, 1980–2013, and New Zealand, 1988–2012, from the Australian and New Zealand Dialysis and Transplant registry. We estimated mortality rates (by age, sex, calendar year and country) and summarized withdrawal-related deaths within 12 months of treatment modality change. Certified causes of death were ascertained from data linkage with the Australian National Death Index and New Zealand Mortality Collection database.
Results: Of 60 823 patients with ESKD, there were 8111 treatment withdrawal deaths and 26 207 other deaths over 381 874 person-years. Withdrawal-related mortality rates were higher in females and older age groups. Rates increased between 1995 and 2013, from 1142 (95% confidence interval 1064–1226) to 2706/100 000 person-years (95% confidence interval 2498–2932), with the greatest increase in 1995–2006. A third of withdrawal deaths occurred within 12 months of treatment modality change. The national death registers reported kidney failure as the underlying cause of death in 20% of withdrawal cases, with other causes including diabetes (21%) and hypertensive disease (7%). Kidney disease was not mentioned for 18% of withdrawal patients.
Conclusions: Treatment withdrawal represents 24% of ESKD deaths and has more than doubled in rate since 1988. Population data may supplement, but not replace, clinical data for end-of-life kidney-related service planning.
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.
The coronavirus disease 2019 (COVID-19) pandemic is challenging healthcare systems worldwide, none more so than critical and intensive care settings. Significant attention has been paid to the capacity of Australian intensive care unit (ICUs) to respond to a COVID-19 surge, particularly in relation to beds, ventilators, staffing, personal protective equipment, and unparalleled increase in deaths in ICUs associated with COVID-19 seen internationally. While death is not uncommon in critical care, the international experience demonstrates that restrictions to family presence at the end of life result in significant distress for families and clinicians. As a result, the Australian College of Critical Care Nurses and the Australasian College for Infection Prevention and Control supported the development of a position statement to provide critical care nurses with specific guidance and recommendations for practice for this emerging priority area. Where possible, position statements are founded on high-quality evidence. However, the short time period since the first recognition of a cluster of pneumonia-like cases in China in January, 2020, meant that an integrative approach was required to expedite timely development of this position statement in preparation for a COVID-19 surge in Australia. This position statement is intended to provide practical guidance to critical care nurses in facilitating next-of-kin presence for patients dying from COVID-19 in the ICU.
Background: Advance care planning (ACP) and completion advance care directives (ACDs) is recommended for patients with cancer. Documentation needs to be available at the point of care.
Objective(s): To describe the prevalence of ACDs in health records and the self-reported awareness of and engagement in ACP as reported by older Australians with cancer, and to examine the concordance between self-reported completion of and presence of documentation in participants' health records.
Design/setting/participants: Prospective multi-center audit of health records, and a self-report survey of eligible participants in 51 Australian health and residential aged care services. The audit included 458 people aged =65 years with cancer.
Results: 30% had = ACD located in their record. 218 people were eligible for survey completion; 97 (44% response rate) completed it. Of these, 81% had a preference to limit some/all treatments, 10% wanted to defer decision-making to someone else, and 9% wanted all treatments. Fifty-eight percent of survey completers reported having completed an ACP document. Concordance between documentation in the participant's record and self-report of completion was 61% (k = 0.269), which is only fair agreement.
Conclusion(s): Whilst 30% of participants had at least one ACD in their record, 58% self-reported document completion, and concordance between self-reported completion and presence in records was only fair. This is significant given most people had a preference for some/all limitation of treatment. Further ACP implementation strategies are required. These include a systematic approach to embedding ACP into routine care, workforce education, increasing community awareness, and looking at e-health solutions to improve accessibility at the point of care.
Residents of Aged Care Facilities (RACF) experience burdensome hospital transfers in the last year of life, which may lead to aggressive and potentially inappropriate hospital treatments. Anticipating these transfers by identifying risk factors could encourage end-of-life discussions that may change decisions to transfer. The aim was to examine the feasibility of identifying an end-of-life risk profile among RACF residents using a predictive tool to better anticipate predictors of hospital transfers, death or poor composite outcome of hospitalisation and/or death after initial assessment. A retrospective cohort study of 373 permanent residents aged 65+ years was conducted using objective clinical factors from records in nine RACFs in metropolitan Sydney, Australia. In total, 26.8% died and 34.3% experienced a composite outcome. Cox proportional hazard regression models confirmed the feasibility of estimating the level of risk for death or a poor composite outcome. Knowing this should provide opportunities to initiate advance care planning in RACFs, facilitating decision making near the end of life. We conclude that the current structure of electronic RACF databases could be enhanced to enable comprehensive assessment of the risk of hospital re-attendance without admission. Automation tools to facilitate the risk score calculation may encourage the adoption of prediction checklists and evaluation of their association with hospital transfers.
The Voluntary Assisted Dying Act 2017 (Vic) came into effect in Victoria on 19 June 2019. We present the case of an inpatient death under the voluntary assisted dying Act in our health service and describe a short case history followed by a discussion examining two relevant topics related to voluntary assisted dying and palliative care: conscientious objection and the complexity of palliative care involvement.
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to study health communication during pandemic times. However, it is unknown how communication within consultations might change during pandemics.
AIM: This study, a sub-study of a larger project, aimed to examine real-world instances of communication in paediatric palliative care consultations prior to and during the COVID-19 pandemic to understand how clinicians and families talk about the pandemic.
DESIGN: Paediatric palliative care consultations prior to, during, and immediately following the initial peak of COVID-19 cases in Australia were video recorded and analysed using Conversation Analysis methods.
SETTING/PARTICIPANTS: Twenty-five paediatric palliative care consultations (including face-to-face outpatient, telehealth outpatient and inpatient consultations) were video recorded within a public children's hospital in Australia. Participants included 14 health professionals, 15 child patients, 23 adult family members and 5 child siblings.
RESULTS: There was a pervasive relevance of both serious and non-serious talk about COVID-19 within the consultations recorded during the pandemic. Topics typical of a standard paediatric palliative care consultation often led to discussion of the pandemic. Clinicians (55%) and parents (45%) initiated talk about the pandemic.
CONCLUSIONS: Clinicians should not be surprised by the pervasiveness of COVID-19 or other pandemic talk within standard paediatric palliative care consultations. This awareness will enable clinicians to flexibly address family needs and concerns about pandemic-related matters that may impact health and wellbeing.
OBJECTIVES: This study explored associations between birth region, socio-demographic predictors and advance care planning (ACP) uptake.
METHODS: A prospective, multi-center, cross-sectional audit study of 100 sites across eight Australian jurisdictions. ACP documentation was audited in the health records of people aged 65 years or older accessing general practice (GP), hospital and long-term care facility (LTCF) settings. Advance care directives (ACD) completed by the person ('person completed ACDs') and ACP documents completed by a health professional or other person ('health professional or someone else ACP') were counted. Hierarchical multi-level logistic regression assessed associations with birth region.
RESULTS: From 4187 audited records, 30.0% (1152/3839) were born outside Australia. 'Person completed ACDs' were less common among those born outside Australia (21.9% vs 28.9%, X2 (1, N = 3840) = 20.3, p & 0.001), while 'health professional or someone else ACP' was more common among those born outside Australia (46.4% vs 34.8%, X2 (1, N = 3840) = 45.5, p & 0.001). Strongest associations were found for those born in Southern Europe: 'person completed ACD' (OR = 0.56, 95% CI = 0.36-0.88), and 'health professional or someone else ACP' (OR = 1.41, 95% CI = 1.01-1.98). English-language proficiency and increased age significantly predicted both ACP outcomes.
DISCUSSION: Region of birth is associated with the rate and type of ACP uptake for some older Australians. Approaches to ACP should facilitate access to interpreters and be sensitive to diverse preferences for individual and family involvement in ACP.
End-of-life (EOL) care has become an integral part of intensive care medicine and includes the exploration of possibilities for deceased organ and tissue donation. Donation physicians are specialist doctors with expertise in EOL processes encompassing organ and tissue donation, who contribute significantly to improvements in organ and tissue donation services in many countries around the world. Donation physicians are usually also intensive care physicians, and thus they may be faced with the dual obligation of caring for dying patients and their families in the intensive care unit (ICU), whilst at the same time ensuring organ and tissue donation is considered according to best practice. This dual obligation poses specific ethical challenges that need to be carefully understood by clinicians, institutions and health care networks. These obligations are complementary and provide a unique skillset to care for dying patients and their families in the ICU. In this paper we review current controversies around EOL care in the ICU, including the use of palliative analgesia and sedation specifically with regards to withdrawal of cardiorespiratory support, the usefulness of the so-called doctrine of double effect to guide ethical decision-making, and the management of potential or perceived conflicts of interest in the context of dual professional roles.
OBJECTIVE: To quantify and examine specialist palliative care (SPC) in-hospital activity and compare it to routinely collected administrative data on palliative care (PC).
METHODS: All patients discharged from a large acute care tertiary hospital in New South Wales, Australia, between July 1 and December 31, 2017, were identified from the hospital's data warehouse. Administrative data were supplemented with information from the electronic medical record for hospital stays which were assigned the PC additional diagnosis code (Z51.5); had a "palliative care" care type; or included SPC consultation.
RESULTS: Of 34 653 hospital stays, 524 were coded as receiving PC-based on care type (43%) and/or diagnosis code Z51.5 (100%). Specialist palliative care provided 1717 consultations over 507 hospital stays. Patients had 2 (median; interquartile range: 1-4) consultations during an average stay of 15.3 days (SD 15.78; median 10); the first occurred 7.0 days (SD 12.13; median 3) after admission. Of patient stays with an SPC consultation, 70% were assigned the PC Z51.5 code; 60% were referred for symptom management; 68% had cancer. One hundred forty-one patients were under a palliative specialist-either from initial hospital admission (49.6%) or later in their stay.
CONCLUSIONS: Palliative care specialists provide expert input into patient management, benefitting patients and other clinicians. Administrative data inadequately capture their involvement in patient care, especially consultations, and are therefore inappropriate for reporting SPC activity. Exclusion of information related to SPC activity results in an incomplete and distorted representation of PC services and fails to acknowledge the valuable contribution made by SPC.
Background: There is an international drive towards increasing provision of community-led models of social and practical support for people living with advanced illness.
Aim: This feasibility project aims to develop, implement and evaluate a model of community volunteers, identified as Compassionate Communities Connectors, to support people living with advanced life limiting illnesses/palliative care needs. The aims also include the development and evaluation of a training programme for volunteers and assessment of the feasibility, acceptability and preliminary effectiveness of this model of care.
Methods: The approach seeks to map and mobilise people's personal networks of care through the Connectors enlisting Caring Helpers (community volunteers). Up to 10 Connectors will be trained to work with at least 30 families selected by the palliative care service as requiring support. The primary outcome is the effect of the intervention on social connectedness. Secondary outcomes are the intervention's effect on unplanned hospital utilisation, caregiver support needs, advance care plans and satisfaction with intervention for patients/carers, volunteers and service providers.
Conclusion: It is expected that this intervention will enhance patient, carer and family social, psychological and practical support and reduce the need for dying people to be admitted to a hospital.
BACKGROUND: Doctors, particularly general practitioners, play a significant role in assisting patients to create advance care plans. When medically indicated, these documents are important tools to promote congruence between end-of-life care and patient's personal preferences. Despite this, little is known regarding the availability of these documents in hospitals. The aim of this study was to identify the proportion of people who died in hospital without an advance care plan and how many of these had advance care planning (ACP) documents in their general practice records.
METHODS: A retrospective cohort study was conducted of patient hospital records with manual linkage to general practice records. The large regional hospital in Victoria, Australia has a catchment population in excess of 300,000 people. The study sample was patients aged 75 years and over who died in the hospital between 1 January 2016 and 31 December 2017. The hospital records of these patients were examined to identify those which did not have a system alert for ACP documents on the file. Alerted ACP documents were limited to those legislated in the state of Victoria: advance care plan, Enduring Power of Attorney (Medical Treatment) or Enduring Power of Guardianship. Where no ACP document system alert was found in the hospital record, the patient's nominated general practice was consented to participate and the corresponding general practice record was examined. Data were analysed using descriptive statistics.
RESULTS: Of the 406 patients who died in hospital, 76.1% (309) did not have a system alert for any ACP document. Of the 309 hospital records without a system alert, 144 (46.7%) corresponding general practice records were examined. Of these, 14.6% included at least one ACP document, including four advance care plans, that were not available in hospital.
CONCLUSIONS: Unless ACP documents are consistently communicated from general practice, patient's preferences may be unknown during end-of-life care. It is important that both doctors and patients are supported to use connected electronic health records to ensure that documents are readily available to healthcare staff when they are required.