How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review.

BACKGROUND: Advance care planning (ACP) is the process supporting individuals with life-limiting illness to make informed decisions about their future healthcare. Ethnic disparities in ACP have been widely highlighted, but interpretation is challenging due to methodological heterogeneity. This review aims to examine differences in the presence of documented ACP in individuals' care records for people with advanced disease by ethnic group, and identify patient and clinician related factors contributing to this. METHODS: Mixed-methods systematic review. Keyword searches on six electronic databases were conducted (01/2000-04/2022). The primary outcome measure was statistically significant differences in the presence of ACP in patients' care records by ethnicity: quantitative data was summarised and tabulated. The secondary outcome measures were patient and clinician-based factors affecting ACP. Data was analysed qualitatively through thematic analysis; themes were developed and presented in a narrative synthesis. Feedback on themes was gained from Patient and Public Involvement (PPI) representatives. Study quality was assessed through Joanna Briggs Institute Critical Appraisal tools and Gough's Weight of Evidence. RESULTS: N=35 papers were included in total; all had Medium/High Weight of Evidence. Fifteen papers (comparing two or more ethnic groups) addressed the primary outcome measure. Twelve of the fifteen papers reported White patients had statistically higher rates of formally documented ACP in their care records than patients from other ethnic groups. There were no significant differences in the presence of informal ACP between ethnic groups. Nineteen papers addressed the secondary outcome measure; thirteen discussed patient-based factors impacting ACP presence with four key themes: poor awareness and understanding of ACP; financial constraints; faith and religion; and family involvement. Eight papers discussed clinician-based factors with three key themes: poor clinician confidence around cultural values and ideals; exacerbation of institutional constraints; and pre-conceived ideas of patients' wishes. CONCLUSIONS: This review found differences in the presence of legal ACP across ethnic groups despite similar presence of informal end of life conversations. Factors including low clinician confidence to deliver culturally sensitive, individualised conversations around ACP, and patients reasons for not wishing to engage in ACP (including, faith, religion or family preferences) may begin to explain some documented differences. TRIAL REGISTRATION: PROSPERO-CRD42022315252.

Parkinson's disease and palliative care: a quality of care Delphi study.

OBJECTIVES: Extending palliative care services to those with long-term neurological conditions is a current aim of UK health policy. Lack of holistic guidelines for palliative and end-of-life care, and differing models of service provision, has resulted in heterogeneity in care access and quality. There is a need for evidence-based standards of care to audit Parkinson's services and drive improvements. METHODS: A two-stage Delphi process was used to achieve consensus on statements that define quality standards in palliative care for patients with Parkinson's disease (PD). An expert panel was selected to comprise healthcare professionals, patients and carers based in the UK; this panel evaluated the statements via a Delphi survey. Quantitative and qualitative analysis of the results informed modifications between the Delphi rounds. RESULTS: A final set of 16 statements was produced, reflecting aspirational standards of palliative care in PD. These statements, split into four domains ('Structures and processes of care', 'Preparing for the end of life', ' Care in the last weeks of life' and 'Care in the last days of life') underline the importance of joint working between generalist and specialist services, individualised care and early and regular advance care planning. CONCLUSIONS: The Delphi process has established a set of standards which can be integrated within and guide services, helping to improve the quality and equality of care. Further work remains to establish the effectiveness of different models of service provision, including the implementation of keyworkers and telemedicine.

Do you need compassion to work in palliative medicine?

Compassion is deemed a "basic social emotion" (Nussbaum) and decreed a National Health Service core value-yet, what does 'compassion' really mean? Moreover, why is it so important, how can we deliver it best and how do we measure achievement here?This essay will argue that compassion stands apart from other forms of interpersonal engagement as a deeply human recognition of another's suffering which inherently motivates action to do something about this. There are two inextricable elements here: the role of suffering, and the resultant call to action it motivates.The role of compassion pivots on suffering, and thus, our interpretation of suffering and what we consider its upstream cause: the problem to be fixed. Palliative medicine here stands apart, priding itself on the holistic care of what is important to the patient; thus, the symptoms problematic to the patient are the problem, rather than the underlying cause per se.Compassion drives motivation to act; medicine equips us with the tools by which we can respond to this. Thus, compassion has been described as a 'calling' to healthcare for many who join the profession, and perhaps it is when these tools seem to fail that compassion fatigue takes hold. Though this is beyond the scope of this essay, compassion fatigue is considered a form of burnout directly related to the experiences of a caregiver.Thus, compassion is central, and its outcomes stem first from our perspective of the issue at hand and second from our ability to drive change. The ability to recognise suffering in another and be motivated to help has relevance far beyond work in palliative medicine; perhaps this form of interpersonal engagement extends to humanity itself.