Palliative Approach Remains Lacking in Terminal Hospital Admissions for Chronic Disease Across Rural Settings: Multisite Retrospective Medical Record Audit.

INTRODUCTION/AIM: Despite clear benefit from palliative care in end-stage chronic diseases, access is often limited, and rural access largely undescribed. This study sought to determine if a palliative approach is provided to people with chronic disease in their terminal hospital admission. METHODS: Multisite, retrospective medical record audit, of decedents with a primary diagnosis of chronic lung, heart, or renal failure, or multimorbidity of these conditions over 2019. RESULTS: Of 241 decedents, across five clinical sites, 143 (59.3%) were men, with mean age 80.47 years (SD 11.509), and diagnoses of chronic lung (n = 56, 23.2%), heart (n = 56, 23.2%), renal (n = 24, 10.0%) or multimorbidity disease (n = 105, 43.6%), and had 2.88 (3.04SD) admissions within 12 months. Outpatient chronic disease care was evident (n = 171, 73.7%), however, contact with a private physician (n = 91, 37.8%), chronic disease program (n = 61, 25.3%), or specialist nurse (n = 17, 7.1%) were less apparent. "Not-for-resuscitation" orders were common (n = 139, 57.7%), however, advance care planning (n = 71, 29.5%), preferred place of death (n = 18, 7.9%), and spiritual support (n = 18, 7.5%) were rarely documented. Referral to and input from palliative services were low (n = 74, 30.7% and n = 49, 20.3%), as was review of nonessential medications or blood tests (n = 86, 35.7%, and n = 78, 32.4%). Opioids were prescribed in 45.2% (n = 109). Hospital site and diagnosis were significantly associated with outpatient care and palliative approach (P<0.001). CONCLUSIONS: End-of-life planning and specialist palliative care involvement occurred infrequently for people with chronic disease who died in rural hospitals. Targeted strategies are necessary to improve care for these prevalent and high needs rural populations.

Social determinants of advanced chronic respiratory interventions: a scoping review.

INTRODUCTION: Income, education, occupation, social class, sex and race/ethnicity are essential social determinants of health (SDH). Reporting of SDH when testing complex interventions for people with advanced chronic respiratory diseases or how they impact accessibility, engagement and effectiveness within sub-populations is unclear. AIMS AND METHODS: This scoping review examined reporting of SDH in pulmonary rehabilitation (PR), singing for lung health (SLH) and multicomponent palliative care interventions (MPCI). Reporting of SDH was assessed from studies from PubMed and three systematic reviews. RESULTS: Eight SLH, 35 MPCI and 351 PR studies were included. Sex was most reported (PR: n=331, 94.3%; SLH: n=6, 75.0%; MPCI: n=31, 88.6%), while social class was only mentioned in one PR study (n=1, 0.3%). 18 PR studies (5.1%), two SLH studies (25.0%) and three MPCI studies (8.6%) reported no SDH. Included studies were predominantly from high-income countries (304 PR studies from 26 countries, six SLH studies from two countries and all the MPCI studies from 12 countries), published from 2000 to 2022 with reporting in PR progressively increasing. CONCLUSION: Reporting of SDH is limited. Consequently, impacts of these social barriers on engagement in clinical trials or whether the complex interventions are effective universally or within certain sub-populations is unclear.

Service Level Characteristics of Rural Palliative Care for People with Chronic Disease.

CONTEXT: Despite clear benefit from palliative care in end-stage chronic, non-malignant disease, access for rural patients is often limited due to workforce gaps and geographical barriers. OBJECTIVES: This study aimed to understand existing rural service structures regarding the availability and provision of palliative care for people with chronic conditions. METHODS: A cross-sectional online survey was distributed by email to rural health service leaders. Nominal and categorical data were analyzed descriptively, with free-text questions on barriers and facilitators in chronic disease analyzed using qualitative content analysis. RESULTS: Of 42 (61.7%) health services, most were public (88.1%) and operated in acute (19, 45.2%) or community (16, 38.1%) settings. A total of 17 (41.5%) reported an on-site specialist palliative care team, primarily nurses (19, 59.5%). Nearly all services (41, 95.3%) reported off-site specialist palliative care access, including: established external relationships (38, 92.7%); visiting consultancy (26, 63.4%); and telehealth (18, 43.9%). Perceived barriers in chronic disease included: lack of specific referral pathways (18; 62.1%); negative patient expectations (18; 62.1%); and availability of trained staff (17; 58.6%). Structures identified to support palliative care in chronic disease included: increased staff/funding (20, 75.0%); formalized referral pathways (n = 18, 64.3%); professional development (16, 57.1%); and community health promotion (14, 50%). CONCLUSION: Palliative care service structure and capacity varies across rural areas, and relies on a complex, at times ad hoc, network of onsite and external supports. Services for people with chronic, non-malignant disease are sparse and largely unknown, with a call for the development of specific referral pathways to improve patient care.

Improving care for people with bronchiectasis: opportunities and challenges highlighted from service evaluation.

BACKGROUND: Bronchiectasis is a serious, debilitating condition warranting specialist care. AIMS: To determine if care provided in a tertiary hospital general respiratory clinic was guideline concordant and to validate the Bronchiectasis Severity Index (BSI) in the Australian context. METHODS: A single-centre ambispective study was conducted. The first stage involved a retrospective medical record audit between 1 January 2015 and 31 December 2016. All aspects of bronchiectasis management were reviewed. In the second prospective phase the cohort was followed for 4 years to determine survival and the validity of the BSI determined. RESULTS: A total of 145 patients was included, with mean age of 65 years (standard deviation = 16.6). The aetiology of bronchiectasis was explicitly documented for 58 (40%) patients, with potential causes identified in another 37 patients. Post-infectious aetiologies were described in 62 (43%) patients. Most patients had lung function testing (n = 142; 97%) and sputum culture results (n = 120; 83%). Long-term antibiotics were prescribed to 49 (34%) patients. Only patients culturing Pseudomonas spp. were prescribed inhaled antibiotics. Documentation regarding essential management recommendations was low, including airway clearance (46%), pneumococcal vaccination (27%) and written action plans (32%). Severe disease was common, with more than one-third (34-48%) having BSI scores >9. One-fifth (21%) of the cohort died during the 4-year follow-up period. The BSI was significantly associated with mortality risk (odds ratio 7.7; 95% confidence interval = 3.1-19.3; P < 0.001). CONCLUSION: Our cohort had a high proportion of patients with severe disease and significant mortality; some, but not all, aspects of recommended care were delivered.

Opioids and driving: education gaps in advanced cancer.

OBJECTIVES: Opioids may impair the ability to drive safely, particularly when first prescribed or with dose titration. We investigated whether clinicians evaluate driving status and provide opioid-related driving advice when initiating opioids among people with advanced lung cancer. METHODS: A retrospective medical record review of outpatients with advanced non-small cell lung cancer seen at an Australian tertiary referral centre between 1 January 2015 and 31 December 2019 was undertaken to determine frequency of opioid prescription and documentation of driving status and education regarding driving safety while taking opioids. RESULTS: Of 1022 patients screened, 205 were commenced on opioid therapy. Forty-seven (23%) patients had driving status documented. According to medical records, education about driving safety while on opioids was provided to two (1%) patients on opioid initiation. Ten (5%) patients received opioid-related driving education at least once at follow-up appointments. The content of the education was infrequently documented, and when documented, focused on opioid side effects impacting driving. Opioid doses were often escalated at follow-up appointments. CONCLUSIONS: According to documentation in medical records, clinicians infrequently assessed driving status on opioid initiation and rarely provided education regarding opioid-related driving risks. Further research and clearer guidance regarding opioids and driving safety in the cancer population are required.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Real-world opioid prescription to patients with serious, non-malignant, respiratory illnesses and chronic breathlessness.

BACKGROUND: Chronic breathlessness is a disabling symptom that is often under-recognised and challenging to treat despite optimal disease-directed therapy. Low-dose, oral opioids are recommended to relieve breathlessness, but little is known regarding long-term opioid prescription in this setting. AIM: To investigate the long-term efficacy of, and side-effects from, opioids prescribed for chronic breathlessness to patients with advanced, non-malignant, respiratory diseases. METHODS: A prospective cohort study of all patients managed by the advanced lung disease service, an integrated respiratory and palliative care service, at the Royal Melbourne Hospital from 1 April 2013 to 3 March 2020. RESULTS: One hundred and nine patients were prescribed opioids for chronic breathlessness. The median length of opioid use was 9.8 (interquartile range (IQR) = 2.8-19.8) months. The most commonly prescribed initial regimen was an immediate-release preparation (i.e. Ordine) used as required (37; 33.9%). For long-term treatment, the most frequently prescribed regimen included an extended-release preparation with an as needed immediate-release (37; 33.9%). The median dose prescribed was 12 (IQR = 8-28) mg oral morphine equivalents/day. Seventy-one (65.1%) patients reported a subjective improvement in breathlessness. There was no significant change in the mean modified Medical Research Council dyspnoea score (P = 0.807) or lung function measurements (P = 0.086-0.727). There was no association between mortality and the median duration of opioid use (P = 0.201) or dose consumed (P = 0.130). No major adverse events were reported. CONCLUSION: Within this integrated respiratory and palliative care service, patients with severe, non-malignant respiratory diseases safely used long-term, low-dose opioids for breathlessness with subjective benefits reported and no serious adverse events.

The Palliative Approach and Terminal Heart Failure Admissions - Are We Getting it Right?

BACKGROUND: Chronic heart failure has a high mortality and early provision of palliative care supports complex decision-making and improves quality of life. AIM: To explore whether and when a palliative approach was adopted during the last 12 months of life in patients who experienced an in-hospital death from heart failure. DESIGN: Retrospective medical record review of all deaths from chronic heart failure (January 2010 to December 2019). PARTICIPANTS: Admissions with chronic heart failure resulting in death were analysed from an Australian tertiary referral centre. RESULTS: The cohort (n=517) were elderly (median age 83.8 years IQR=77.6-88.7) and male (55.1%). Common comorbidities were ischaemic heart disease (n=293 56.7%) and atrial fibrillation (n=289 55.9%). Life sustaining interventions occurred in 97 (18.8%) patients. In 31 (6.0%) patients referral to specialist palliative care occurred prior to, and in 263 (50.9%) during, the terminal admission. Opioids were prescribed to 440 (85.1%) patients. Comfort care was the documented goal in 158 patients (30.6%). A palliative approach was significantly associated with prior admission in the preceding 12 months (OR=1.5 95% CI=1.0-2.1 p<0.043), receiving outpatient care (OR=2.6 95% CI=1.6-4.1 p<0.01), and admissions in the latter half of the decade (OR=1.5 95% CI=1.0-2.0 p<0.038). CONCLUSION: Despite greater adoption of a palliative approach in the terminal admission over the last decade, a significant proportion of patients receive palliative care late, just prior to death.

Opioids in advanced lung malignancy: a clinical audit of opioid prescription, patient education and safeguarding.

BACKGROUND: Opioids have an important role in symptom management for people with advanced cancer. Clinical guidelines recommend patient education to ensure the safe use of opioids; however, no Australian studies have explored current education and safeguarding practices when opioids are initiated to advanced cancer patients. AIMS: To investigate risk assessment, safeguarding and education practices when opioids are first prescribed to advanced lung cancer patients. METHODS: A retrospective medical record audit of outpatients with advanced non-small cell lung cancer seen at a tertiary Australian hospital between 1 January 2015 and 31 December 2019 and prescribed strong opioids for cancer-related symptoms. RESULTS: Of 1022 patients attending the lung cancer clinic, 205 were newly initiated on an opioid. Opioid-related risks including previous recreational drug use (28; 13.6%) and history of falls (16; 7.9%) were infrequently documented. Opioid-related safeguards and adverse effects management were variably instituted: written general practitioner correspondence at opioid initiation (62; 30%), clinic follow up (186; 91%) and laxative co-prescription (55; 26.8%). Most patients (137; 66.8%) received no documented opioid education on drug initiation. There was no association between age (P = 0.653), number of comorbidities (P = 0.569) or chronic alcohol use (P = 0.263) and the provision of education on opioid initiation. Palliative care doctors or nurse practitioners were eight times more likely to document opioid education than medical oncologists (odds ratio = 8.5; confidence interval = 2.9-24.8; P < 0.0001). CONCLUSION: Guideline-recommended risk assessment, safeguards and patient education were infrequently documented when opioids were initiated. Clinician training, decision-assist prompts in electronic prescribing software and written education resources for patients may address these gaps in care.

Nasal High Flow Therapy For Symptom Management in People Receiving Palliative Care.

For patients with chronic non-malignant lung disease, severe chronic breathlessness can significantly impact quality of life, causing significant disability, distress, social isolation, and recurrent hospital admissions. Caregivers for people with challenging symptoms, such as severe breathlessness, are also profoundly impacted. Despite increasing research focused on breathlessness over recent years, this symptom remains extremely difficult to manage, with no effective treatment that completely relieves breathlessness. A new potential treatment for relieving breathlessness in patients at home is nasal high flow (NHF) therapy. NHF therapy is a respiratory support system that delivers heated, humidified air (together with oxygen if required) with flows of up to 60 L/min. This case describes a patient with very severe chronic obstructive pulmonary disease who received domiciliary NHF therapy (approximately 8 hours/day, flow rate of 20 L/min) over twelve months with good effect for the relief of severe chronic breathlessness. We discuss the management principles for severe chronic breathlessness, the physiological effects of NHF therapy and the evidence for long-term use in the community setting. With the support of respiratory and palliative care clinicians together, domiciliary NHF therapy has great potential for improving current symptom management approaches in people with life-limiting illnesses.

Assisting People With Their Living, Not Their Dying: Health Professionals' Perspectives of Palliative Care and Opioids in ILD.

OBJECTIVES: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians' perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. METHODS: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. RESULTS: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients' access to symptom palliation. CONCLUSION: Specialist palliative care and opioids were believed to improve patients' quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.

Barriers to Palliative Care Referral and Advance Care Planning (ACP) for Patients With COPD: A Cross-Sectional Survey of Palliative Care Nurses.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a progressive, life-limiting illness that requires end-of-life care planning, yet remains under-served. Understanding barriers to advance care planning (ACP) from different specialties' perspectives will enable a co-ordinated, cross-disciplinary approach to improving ACP access. METHODS: Australia and New Zealand palliative care nurses were invited to complete an anonymous online cross-sectional survey. Questions tested knowledge of validated ACP-related practice indicators and canvassed perspectives on barriers to ACP in COPD. Data are described and free-text thematically analyzed. RESULTS: The 90 participants had high knowledge and positive attitudes to ACP in COPD, however, lacked consensus as to whether patients want to know their prognosis or discuss treatment options and end-of-life wishes. 59% discussed ACP in more than half their patients with COPD, and 77% and 73% routinely initiated or followed-up these discussions. Key barriers included: lack of confidence and training in COPD; reluctance to distress patients and families; referral late in the disease course; lack of consensus on referral timing; and lack of patient and clinician understanding of COPD prognoses. Many reported that lack of consensus in the treating team, paired with prognostic uncertainty, precluded timely ACP engagement. CONCLUSIONS: Palliative care nurses have substantial knowledge and positive beliefs regarding ACP, however, some beliefs and practices lack alignment with qualitative data on patients' wishes in COPD. While palliative care nurses are well placed to facilitate early implementation for patients with advanced COPD, ACP training and practice guidelines specific to COPD may increase implementation in this life-limiting disease.

Care of older people and people requiring palliative care with COVID-19: guidance from the Australian National COVID-19 Clinical Evidence Taskforce.

INTRODUCTION: Older people living with frailty and/or cognitive impairment who have coronavirus disease 2019 (COVID-19) experience higher rates of critical illness. There are also people who become critically ill with COVID-19 for whom a decision is made to take a palliative approach to their care. The need for clinical guidance in these two populations resulted in the formation of the Care of Older People and Palliative Care Panel of the National COVID-19 Clinical Evidence Taskforce in June 2020. This specialist panel consists of nursing, medical, pharmacy and allied health experts in geriatrics and palliative care from across Australia. MAIN RECOMMENDATIONS: The panel was tasked with developing two clinical flow charts for the management of people with COVID-19 who are i) older and living with frailty and/or cognitive impairment, and ii) receiving palliative care for COVID-19 or other underlying illnesses. The flow charts focus on goals of care, communication, medication management, escalation of care, active disease-directed care, and managing symptoms such as delirium, anxiety, agitation, breathlessness or cough. The Taskforce also developed living guideline recommendations for the care of adults with COVID-19, including a commentary to discuss special considerations when caring for older people and those requiring palliative care. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINE: The practice points in the flow charts emphasise quality clinical care, with a focus on addressing the most important challenges when caring for older individuals and people with COVID-19 requiring palliative care. The adult recommendations contain additional considerations for the care of older people and those requiring palliative care.

Nasal high flow oxygen therapy during acute admissions or periods of worsening symptoms.

PURPOSE OF REVIEW: Nasal high flow therapy (NHF) is increasingly used in acute care settings. In this review, we consider recent advances in the utilization of NHF in chronic obstructive pulmonary disease (COPD), terminal cancer and symptom management. Considerations around NHF use during the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic are also discussed. RECENT FINDINGS: NHF enables humidification and high flows to be provided together with titrated, supplemental oxygen therapy. Compared to conventional oxygen therapy, NHF improves respiratory physiology by reducing workload, enhancing muco-ciliary clearance and improving dead space washout. Some studies suggest that early use of NHF in people being cared for in the emergency department leads to lower rates of invasive ventilation and noninvasive ventilation. There is also emerging evidence for NHF use in people with COPD and chronic respiratory failure, and in palliative care. NHF is comfortable, well-tolerated and safe for use in the management of breathlessness in people with cancer. NHF can be delivered by face mask to patients with SARS-CoV-2 infection, to ease the burden on critical care resources. SUMMARY: The evidence base for NHF is rapidly growing and offers promise in relieving troublesome symptoms and for people receiving palliative care.

Referral criteria to palliative care for patients with respiratory disease: a systematic review.

AIMS: Advanced nonmalignant respiratory diseases are associated with significant patient morbidity, yet access to palliative care occurs late, if at all. Our aim was to examine referral criteria for palliative care among patients with advanced nonmalignant respiratory disease, with a view to developing a standardised set of referral criteria. METHODS: We performed a systematic review of all studies reporting on referral criteria to palliative care in advanced nonmalignant respiratory disease, with a focus on chronic obstructive pulmonary disease and interstitial lung disease. The systematic review was conducted and reported according to the PRISMA guidelines, and was undertaken using electronic databases (Ovid, MEDLINE, Ovid Embase and PubMed). RESULTS: Searches yielded 2052 unique titles, which were screened for eligibility and resulted in 62 studies addressing referral criteria to palliative care in advanced nonmalignant respiratory disease. Of 18 categories put forward for referral to palliative care, the most commonly discussed factors were hospital use (69% of papers), indicators of poor respiratory status (47%), physical and emotional symptoms (37%), functional decline (29%), need for advanced respiratory therapies (27%), and disease progression (26%). CONCLUSION: Clinicians consider referral to specialist palliative care for a wide range of disease- and needs-based criteria. Our findings highlight the need to standardise palliative care access by developing consensus referral criteria for patients with advanced nonmalignant respiratory illnesses.

Managing Severe Chronic Breathlessness in Chronic Obstructive Pulmonary Disease Is Challenging for General Practitioners.

CONTEXT: Patients with advanced chronic obstructive pulmonary disease (COPD) can develop increasing breathlessness, which can persist despite optimal medical management-refractory breathlessness. Management can be challenging for all clinicians and requires a broad approach that includes optimization of disease directed therapies, non-pharmacological strategies to manage breathlessness and for some patients opioids. OBJECTIVES: To explore the approaches to breathlessness management and palliative care undertaken by Australian General Practitioners (GP) for patients with severe COPD and refractory breathlessness. METHODS: A case-vignette based survey was conducted with Australian GPs to determine their approaches to breathlessness management and palliative care in COPD. RESULTS: Of the 137 GPs, 66% recommended commencing an additional medication to manage refractory breathlessness. Thirty-eight GPs (28%) recommended opioids and 26 (19%) recommended guideline discordant treatments. Two-thirds of GPs had concerns regarding the use of opioids in COPD. Half (55%) of GPs were comfortable providing general palliative care to patients with COPD and 62 (45%) had referred patients with COPD to specialist palliative care services. Most respondents wanted further training to manage severe COPD and severe chronic breathlessness. CONCLUSION: Most GPs recognized and were willing to add specific treatments for severe chronic breathlessness. However, experience prescribing opioids for severe chronic breathlessness was low, with many practitioners holding significant concerns regarding adverse effects. Many GPs are uncomfortable offering a palliative approach to their COPD patients, yet these patients are not routinely referred to specialist palliative care services despite their immense needs. GPs therefore desire education and support to overcome these barriers.

Patients With Fibrotic Interstitial Lung Disease Receive Supportive and Palliative Care Just Prior to Death.

BACKGROUND: Fibrotic interstitial lung diseases (f-ILDs) are often progressive and incurable. As patients experience significant symptoms and have a poor prognosis, early palliative care referral is recommended. OBJECTIVE: To examine the care delivered to patients with f-ILD during the terminal hospital admission and the past 2 years of life. METHODS: A retrospective audit was performed for consecutive patients who died from f-ILD at 2 Australian teaching hospitals between January 1, 2012, and December 31, 2016. RESULTS: Of 67 patients, 44 (66%) had idiopathic pulmonary fibrosis. Median age was 78 years. Median respiratory function: forced expiratory volume in 1 second 69.0% predicted (interquartile range [IQR]: 58.0%-77.0%), forced vital capacity 64.0% predicted (IQR = 46.8%-74.3%), and diffusing capacity of carbon monoxide 36.0% predicted (IQR = 31.0%-44.0%). In the 2 years prior to the terminal admission, 38 (57%) patients reported severe breathlessness and 17 (25%) used opioids for symptom relief. Twenty-four (36%) patients received specialist palliative care (SPC) and 11 (16%) completed advance care planning. During the terminal admission, 10 (15%) patients were admitted directly under SPC. A further 33 (49%) patients were referred to SPC, on average 1 day prior to death. Sixty-three (94%) patients received opioids and 49 (73%) received benzodiazepines for symptom management. Median starting and final opioid doses were 10 and 23 mg oral morphine equivalent/24 hours, respectively. Opioids were commenced on average 2 (IQR 1-3) days prior to death. CONCLUSIONS: Although most patients were identified as actively dying in the final admission, referral to SPC and use of palliative medications occurred late. Additionally, few patients accessed symptom palliation earlier in their illness.