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.

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.

The importance of developing palliative care quality indicators for the prison setting: why now, and next steps.

Palliative care is increasingly important in the prison setting, but information about the quality and accessibility of this care is extremely limited. Developing and implementing standardised quality indicators will provide transparency, accountability, and a platform for quality improvement at both local and national levels.

Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis.

BACKGROUND: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. AIMS: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. DESIGN: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. DATA SOURCES: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. FINDINGS: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. CONCLUSIONS: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Palliative care facilitates the preparedness of caregivers for thoracic cancer patients.

OBJECTIVE: Palliative care improves outcomes for patients with thoracic cancer; however, limited evidence exists for the benefits of this approach for caregivers. This study aimed to advance understanding of the experiences of palliative care described by bereaved caregivers. METHODS: Fifteen adult caregivers completed semi-structured interviews following prior participation in a randomised controlled trial of early referral to palliative care versus discretionary referral to palliative care. Interviews explored caregiver experiences of palliative care delivery. Interview transcripts were thematically analysed. RESULTS: Four related themes about the experiences of palliative care were identified, each of which required sufficient time between palliative care first contact and death: 'relationship building'; 'clear communication and information'; 'access to practical support'; and 'access to psychosocial support'. The core category underpinning these themes was palliative care facilitates caregiver preparedness. Caregivers noted that palliative care played a critical role in preparing them for the future and described a sense of practical and emotional 'relief' associated with the support services made available to them. CONCLUSION: Our findings emphasise that palliative care can have a positive impact on caregivers' preparedness for providing the care needed by thoracic cancer patients and that this can improve the experiences of both caregivers and patients.

Negative media portrayal of palliative care: a content analysis of print media prior to the passage of Voluntary Assisted Dying legislation in Victoria.

Key misunderstandings of palliative care exist in the community, with media being reported as a key source underpinning knowledge. This retrospective media analysis of consecutive articles sought to examine the portrayal of palliative care in the Australian print media, focussing on the 2 years (2016-2018) coverage preceding the Voluntary Assisted Dying legislation in Victoria, Australia. Summative content analyses revealed coverage of palliative care was frequently (74%) in the context of a discussion of euthanasia. Only small numbers of articles described the activities of palliative care, and even fewer its potential beneficial impact, while a quarter (26%) described palliative care was inadequate to relieve suffering. These findings suggest that current coverage of palliative care in the media may contribute to negative public views and misconceptions. An opportunity exists to enhance media coverage, and in turn, improve the public understanding of care in serious illness.

Fact versus fiction: bridging contrasting medicinal cannabis information needs.

Regulatory changes now permit the availability and prescribing of medicinal cannabis in Australia. Public awareness and patient interest are high. Using a co-design approach involving cancer patients, carers and oncology and palliative care clinicians, two information resources were developed to provide readily available sources of important information for cancer patients and clinicians who are considering the use of medicinal cannabis. Focus groups and evaluation interviews revealed some areas of dissonance between consumers and clinicians concerning aspects of medicinal cannabis.

Who is asking about medicinal cannabis in palliative care?

Following legislative changes in the availability and prescribing of medicinal cannabis in Australia, we sought to understand prospectively the nature of information seeking and requests for medicinal cannabis in consultations between palliative care clinicians and patients with cancer. The 104 discussions were overwhelmingly initiated by patients and carers (93%) and were for a variety of symptoms, reflecting high levels of patient interest in the use of medicinal cannabis in cancer.

End-of-life care in illicit drug users: mapping medication use.

BACKGROUND: While clinical wisdom has long provided suggested guidance around caring for people who use illicit drugs (referred to as PWUD) at the end of life, there is striking paucity of empirical evidence underpinning these practices. Understanding medications and doses required to manage symptoms at the end of life is essential to provide effective end-of-life care for these patients. This study aimed to examine the type and dose of medications prescribed to hospitalised patients who use illicit drugs at the end of life, compared with patients without previous or current illicit drug use. METHOD: A retrospective medical record review was conducted on consecutive patient deaths between 2012 and 2017 at a metropolitan hospital. PWUD were identified using the International Classification of Diseases 10th Revision codes for illicit drug use. Daily dosage of opioids, benzodiazepines and antipsychotics was documented for the last 3 days of life and compared with a matched comparator group. RESULTS: PWUD patients (n=55) received higher doses of opioids, midazolam and antipsychotics than comparator patients (n=55) for each day, significant for opioids in the last 24 hours (p=0.01). PWUD patients received a significantly higher total opioid dose (median=480.0 mg vs 255.0 mg) and midazolam (median=15.0 mg vs 5.0 mg) (both p<0.05). Rates of dose escalation did not differ. CONCLUSIONS: Results suggest that PWUD require greater doses of symptom-controlling medications, particularly opioids and midazolam, at the end of life but that rates of dose escalation do not differ greatly. This study provides a foundation for future research to inform clinical guidelines for this cohort of palliative care patients.

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.

Mapping palliative care provision in European prisons: an EAPC Task Force Survey.

OBJECTIVES: Prison populations around the world are ageing and numbers are rising, leading to greater demand for palliative care for prisoners approaching the end of life. This paper reports a survey that was undertaken by the European Association for Palliative Care Task Force on mapping palliative care provision for prisoners in Europe. The Task Force was established to begin to address the gap in research knowledge by exploring prison systems and care provision across different countries. METHODS: The survey, developed by the Task Force Steering Committee, consisted of 40 questions in six sections. It was completed through online searches; only data that were publicly available on the internet were included. Numerical data were analysed using descriptive statistics, and thematic comparisons were made of free-text data. FINDINGS: The survey was completed for eight countries: Australia, Belgium, Czech Republic, England and Wales, France, Portugal, Scotland and Slovakia. Three main findings are reported here: healthcare and palliative care provision in prisons, deaths in custody and compassionate release. Despite increasing numbers of older prisoners, relatively few prisons provide inpatient care, and only one country has any prisons that provide dedicated palliative care services. Early release on compassionate grounds is extremely rare in most countries. CONCLUSION: For the principle of equivalence to be adhered to, facilities for sick and dying prisoners need to be improved, or many more people need to be released on compassionate grounds at the end of life. This mapping study has identified key issues in relation to palliative care in prison and provides the basis for further international research.

Mapping the nature of distress raised by patients with high-grade glioma and their family caregivers: a descriptive longitudinal study.

BACKGROUND: Few supportive and palliative care interventions have been described for people with high-grade glioma (HGG) and their caregivers. A structured intervention, I-CoPE, which includes regular screening of patients' and caregivers' needs, was delivered as a pilot study in a tertiary neuro-oncological unit. This study prospectively described the severity and content of key concerns raised by patients and their caregivers in the 3 months following a diagnosis of HGG. METHODS: Consecutive patients and caregivers were screened for distress longitudinally using the Distress Thermometer at 3 time points. Exploration of the issues raised during screening was undertaken by the care coordinator and the issues documented. This documentation was subsequently audited to map patterns and nature of distress. The key reasons underlying distress and responses offered were grouped thematically and summarized using descriptive statistics. RESULTS: Thirty-two patients and 31 caregivers were recruited and underwent screening. At diagnosis, 87% of caregivers (n = 27) and 60% of patients (n = 19) reported distress scores meeting clinical significance. The predominant concerns reported by patients during screening related to existential issues such as fear of dying, whereas caregivers were more focused on practical caring responsibilities. Over time, the reasons for distress changed to include more physical health concerns for patients and more psychological concerns for caregivers. CONCLUSIONS: This prospective longitudinal descriptive study revealed that following a new diagnosis of HGG, patients and caregivers had changing needs for support and fluctuating distress, mirroring the illness trajectory. Palliative care needs were apparent from diagnosis, and early integration of palliative care should be considered.

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.

Scope of Practice, Role Legitimacy, and Role Potential for Cancer Care Coordinators.

OBJECTIVE: The cancer care coordinator (CCC) role has become a priority in providing coordinated, patient-centered, supported care for patients, and their families experiencing cancer. The CCC role exists with heterogeneity across tumor streams, clinical disciplines, and institutions. This study explored CCCs perceptions and experiences of their role, scope of practice, and potential for future role development. METHODS: This research used a mixed methods design. Focus groups and individual interviews were conducted with a purposive sample of 16 CCCs from two tertiary public teaching hospitals in Melbourne, Australia. A thematic analysis approach was used. A quantitative record of relative time spent on tasks was also collected. RESULTS: Three major themes were identified: (1) Perceptions of role legitimacy, (2) Structure and funding of the role determines scope of practice, and (3) Reflections on the potential for the role. Variability was evident in predominant tasks undertaken, integration into the unit, level of patient contact, and regard from other professional colleagues. Variability appears to relate to employment time assigned to the role, and history and structure of the role. CONCLUSIONS: The findings underline the need when establishing and reviewing CCC roles for explicit attention to be given to the reporting, integration, structural, and collegiate support for the role as this will profoundly influence its success.