The end-of-life needs of Aboriginal and immigrant communities: a challenge to conventional medical models.

Introduction: Concerns have been raised internationally about the palliative care needs of migrants and First Nations people. This article presents insights from research investigating the end-of-life needs of Aboriginal and culturally and linguistically diverse people living in Western Sydney, Australia. This region has a large rapidly growing, and highly diverse population and on average low socioeconomic status. The research was guided by an advisory panel made up of representatives of supportive and palliative medicine, bereavement support, Aboriginal health, and multicultural health facilities. It aimed to generate findings to support the delivery of culturally sensitive services in the public health system. Method: The multi-method design and the conduct of the research were informed by the literature on researching with marginalized groups which highlights the ethical considerations needed to avoid replicating past injustices. Qualitative data was generated from key informants and community focus groups. Results: The analysis revealed seven themes and some suggested solutions which were relevant across several themes. The seven themes were: the Need for trusted relationships; Talking about death and dying; Knowledge of key services; Decision-making and obtaining consent from the patient; Appropriate physical spaces; Cultural practices around EOL; and Language barriers. Discussion: Within each theme a variety of cultural beliefs and practices were revealed that conflicted with mainstream medical systems, indicating the need for changes in such systems. 'Compassionate Communities' was identified as a model to support the necessary changes.

Verification of administrative data to measure palliative care at terminal hospital stays.

BACKGROUND: Administrative data and clinician documentation have not been directly compared for reporting palliative care, despite concerns about under-reporting. OBJECTIVE: The aim of this study was to verify the use of routinely collected administrative data for reporting in-hospital palliation and to examine factors associated with coded palliative care in hospital administrative data. METHOD: Hospital administrative data and inpatient palliative care activity documented in medical records were compared for patients dying in hospital between 1 July 2017 and 31 December 2017. Coding of palliative care in administrative data is based on hospital care type coded as "palliative care" and/or assignment of the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Australian Modification (ICD-10-AM) palliative care diagnosis code Z51.5. Medical records were searched for specified keywords, which, read in context, indicated a palliative approach to care. The list of keywords (palliative, end of life, comfort care, cease observations, crisis medications, comfort medications, syringe driver, pain or symptom management, no cardiopulmonary resuscitation, advance medical plan/resuscitation plan, deteriorating, agitation, restless and delirium) was developed in consultation with seven local clinicians specialising in palliative care or geriatric medicine. RESULTS: Of the 576 patients who died in hospital, 246 were coded as having received palliative care, either solely by the ICD-10-AM diagnosis code Z51.5 (42%) or in combination with a "palliative care" care type (58%). Just over one-third of dying patients had a palliative care specialist involved in their hospital care. Involvement of a palliative care specialist and a cancer diagnosis substantially increased the odds of a Z51.5 code (odds ratio = 11 and 4, respectively). The majority of patients with a "syringe driver" or identified as being at the "end of life" were assigned a Z51.5 code (73.5% and 70.5%, respectively), compared to 53.8% and 54.7%, respectively, for "palliative" or "comfort care." For each keyword indicating a palliative approach to care, the Z51.5 code was more likely to be assigned if the patient had specialist palliative care input or if they had cancer. CONCLUSION: Our results suggest administrative data under-represented in-hospital palliative care, at least partly due to medical record documentation that failed to meet ICD-10-AM coding criteria. Collaboration between clinicians and coders can enhance the quality of records and, consequently, administrative data.

Specialist Palliative Care Activity at an Acute Care Tertiary Hospital and Its Representation in Administrative Data.

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.

Variations in hospital inpatient palliative care service use: a retrospective cohort study.

OBJECTIVE: Use of palliative care in hospitals for people at end of life varies. We examined rate and time of in-hospital palliative care use and associated interhospital variations. METHODS: We used admissions from all hospitals in New South Wales, Australia, within a 12-month period, for a cohort of adults who died in 73 public acute care hospitals between July 2010 and June 2014. Receiving palliative care and its timing were based on recorded use. RESULTS: Among 90 696 adults who died, 27% received palliative care, and the care was initiated 7.6 days (mean; SD: 3.3 days) before death. Over the 5-year period, the palliative care rate rose by 58%, varying extent across chronic conditions. The duration of palliative care before death declined by 7%. Patient (demographics, morbidities and service use) and hospital factors (size, location and availability of palliative care unit) explained half of the interhospital variation in outcomes: adjusted IQR in rate and duration of palliative care among hospitals were 23%-39% and 5.2-8.7 days, respectively. Hospitals with higher rates often initiated palliative care earlier (correlation: 0.39; p<0.01). CONCLUSION: Despite an increase over time in the palliative care rate, its initiation was late and of brief duration. Palliative care use was associated with patient and hospital characteristics; however, half of the between hospital variation remained unexplained. The observed suboptimal practices and variability indicate the need for expanded and standardised use of palliative care supported by assessment tools, service enhancement and protocols.