Bridging cultures in palliative care: A qualitative study of the care of Indigenous Australians with advanced illness.

BACKGROUND: Lack of access, late engagement and limited referral for palliative care remain critical issues in supporting Indigenous Australians with life limiting illness. AIM: To explore the experiences and perspectives of Indigenous and non-Indigenous health professionals regarding the provision of palliative care for Indigenous people with advanced disease. DESIGN: Qualitative study involving semi-structured focus groups/interviews with analysis following an inductive thematic approach. SETTING/PARTICIPANTS: A purposive sample (n = 54) of medical, nursing, allied health and Indigenous Hospital Liaison Officers engaged in caring for Indigenous patients at a metropolitan teaching hospital in Australia. RESULTS: Four overarching themes were identified regarding provision of palliative care for Indigenous patients. These were (1) the intersection of cultures - Indigenous peoples, health and palliative care, (2) bridging the cultural divide: the integral role of Indigenous Hospital Liaison Officers, (3) health professionals devolve their responsibility to provide culturally appropriate care and (4) building towards a more holistic, culturally aware provision of palliative care. CONCLUSIONS: For many Indigenous people, the health system may be experienced as inflexible, narrowly focused and even prejudiced and traumatising. For Indigenous patients at the end of life, these challenges are heightened. The Indigenous Hospital Liaison Officers, working at the intersections of these two cultures, are key to negotiating such challenges as they seek opportunities to facilitate communication and understanding between firmly held cultural needs.

A thematic analysis of hospital medical records of patients with advanced illness experiencing incarceration in the last 3 months of life.

BACKGROUND: The constraining prison culture is not, for the most part, conducive to the provision of palliative care for people in prison. AIM: This study aimed to explore patterns of palliative and end-of-life care provision for hospitalised prison patients. DESIGN: A retrospective qualitative review of hospital medical records to explore the quality of end-of-life care provision for patients experiencing incarceration who died within hospital. Qualitative inductive analysis of record extracts of each patients final 3-months of life was undertaken. SETTING/PARTICIPANTS: An Australian metropolitan hospital responsible for providing secondary and tertiary health services for people experiencing incarceration. This study included a systematic sample of male patients experiencing incarceration who died in hospital between 2009 and 2019. RESULTS: Medical record extracts of 15 male patients revealed two broad themes: (1) barriers to equitable access to palliative care for incarcerated hospitalised patients; and (2) factors that facilitated quality end-of-life care for patients and families. Barriers included: tensions between balancing risk and humanity; and limited agency over place and death. Conversely, early recognition of deterioration and anticipated dying provided patients and families opportunity to focus on end-of-life goals. CONCLUSIONS: Institutional influences of security and control challenged the provision of equitable end-of-life care for people experiencing incarceration. Further research is required to inform, and incorporate, best approaches to identifying patient wishes and advance planning into care within, or despite, the constrains of incarceration. Policy reform and a coordinated, best practice approach to the management of end-of-life care for people experiencing incarceration is needed.

Increased number of deaths within 24 h of admission during a period of social restriction related to the COVID-19 pandemic: A retrospective service evaluation in a metropolitan palliative care unit.

BACKGROUND: COVID-19 has led to implementation of wide-ranging social restriction measures with consequent impact on health care utilisation in many domains. There is little published data on the experience of palliative care services catering to a population with low case numbers of COVID-19. AIM: This study aimed to consider the impact of COVID-19 on utilisation of inpatient palliative care in the context of low community transmission, and low numbers of cases in hospital. DESIGN: A retrospective service evaluation examining differences in number of admissions, diagnoses, number of deaths and time from admission to death, across three discrete 8-week time periods spanning the early COVID-19 pandemic. SETTING/PARTICIPANTS: All admissions (n = 194) to a metropolitan tertiary hospital inpatient palliative care unit in Melbourne during the study period. RESULTS: An initial 16.9% fall in admissions was followed by a return to baseline admission numbers, with a 46.7% increase in number of deaths compared to baseline. The number of deaths within 24 h rose from 10.8% to 37.3% (p < 0.01). The number of patients with non-malignant diagnoses increased from 32.4% to 52%, and those with non-malignant diagnoses were more likely to die rapidly (p < 0.01). There were no patients with COVID-19 infection. CONCLUSION: Increased numbers of deaths within 24 h of admission occurred on the palliative care unit despite low COVID-19 case numbers in the wider community, and in the setting of widespread social restriction measures. More research is needed examining the health-related consequences of such restrictions for individuals not infected with COVID-19.

End of life in hospitalised prisoners: a group comparison of palliative medicine and hospital use.

BACKGROUND: Providing optimal palliative and end-of-life care for people in prison with advanced progressive disease is a growing challenge. This study aimed to examine hospital and palliative care utilisation for people in prison who are hospitalised during the final 3 months of life and to compare with a disease-matched non-incarcerated patient cohort. METHODS: A retrospective cohort study of people in prison who died between 2009 and 2019 in an Australian public hospital that provides tertiary-level healthcare for 18% of Australia's prison population. Demographic, clinical and service use data were extracted from medical records of eligible patients experiencing incarceration (prison group) and a disease-matched, non-incarcerated patient comparator group (comparator group). RESULTS: At the time of death, patients in the prison group were aged a median of 20 years younger than the comparator group (median age 58 vs 78 years, p<0.01). The prison group experienced more than double the mean length of acute care hospital stay at the end of life. A higher proportion of patients in the prison group experienced an intensive care unit episode (22% vs 12%). More than two-thirds (71%) of the prison group patients were seen by palliative care prior to death, similar to the comparator group (p=0.44). Those transferred to the palliative care unit had a shorter length of stay and were admitted later, just prior to death (median 5 vs 8 days). CONCLUSIONS: People in prison have prolonged acute care public hospital stays and are more likely to experience escalation of care at the end of life. Future opportunity may exist for increased access to formal subacute care settings for people in prison with life-limiting illness to receive optimal palliative and end-of-life care.

Complexities and Constraints in End-of-Life Care for Hospitalized Prisoner Patients.

CONTEXT: Managing the care of an increasing and aging prisoner population, including providing palliative and end-of-life care, is a challenge worldwide. There is little known about the views of health professionals who provide palliative care to hospitalized prisoner patients. OBJECTIVES: To explore experiences and perspectives of health professionals regarding the provision of palliative and end-of-life care for hospitalized prisoner patients. METHODS: A qualitative study involving semistructured focus groups and interviews with 54 medical, nursing, and allied health staff engaged in the care of hospitalized prisoner patients. Purposive sampling from a metropolitan teaching hospital responsible for providing secondary and tertiary health care for prisoners in Victoria, Australia, for 40 years was used to identify and seek perspectives of staff from a variety of clinical disciplines. Inductive thematic analysis was conducted by two researchers. RESULTS: Participants described significant constraints in how they provide palliative care to hospitalized prisoners. Key themes emerged describing constraints on prisoner health decisions, provision and place of care, patient advocacy, and how care is delivered in the last days of life. Participants highlighted a deep philosophical tension between prison constraints and the foundational principles of palliative care. CONCLUSION: Clarity of correctional service processes, protocols, and aspects of security and related training for health professionals is needed to ensure improved care for prisoners with progressive and life-limiting illness. Further research is required to seek the views of prisoners facing end of life and their families.

Symptomatic management of calciphylaxis: a case series and review of the literature.

Calciphylaxis, or calcific uremic arteriopathy, is a rare complication of end-stage renal impairment. It is characterized by the development of small vessel vasculopathy with subcutaneous necrosis and ulceration. Intense pain and cutaneous hyperesthesia are prominent features. Mortality rates are high, and the resulting morbidity is significant. While symptomatic management is the mainstay of treatment, it can be challenging. We describe the symptomatic management of a series of three patients with calciphylaxis. Particular emphasis is placed on the use of multimodal analgesia with high-dose opioids, ketamine, and benzodiazepines and on the use of preemptive analgesia.

Symptoms in 400 patients referred to palliative care services: prevalence and patterns.

The demographics and prevalence of symptoms in patients at first referral to the different components of palliative care services were identified by a retrospective case note study of 400 patients referred to three palliative care centres in London, UK: Michael Sobell House, Mount Vernon Hospital; The North London Hospice; St Bartholomew's and the Royal London Hospitals. One hundred consecutive referrals to each of the following service components were analysed: a hospice inpatient service; a community team; an NHS hospital support team and an outpatient service. A standardized proforma was used to collect the data. Ninety five per cent (380/400) of patients referred had a cancer diagnosis. The five most prevalent symptoms overall were pain (64%), anorexia (34%), constipation (32%), weakness (32%) and dyspnoea (31%), which is similar to other published reports. However, the commonest symptoms and their prevalence varied depending on the service component to which the patient was referred. Patients referred to hospice and community services had the highest symptom burden (mean number of symptoms per patient 7.21 and 7.13, respectively). This study suggests that different patient subgroups may have different needs in terms of symptoms, which will be relevant for the planning and rationalization of palliative care services.