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.