Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Palliative care for people living with heart failure: European Association for Palliative Care Task Force expert position statement.

Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social, or spiritual nature. This document encourages the use of validated assessment tools to recognize such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional, and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.

Parents' perspectives of the transition to home when a child has complex technological health care needs.

INTRODUCTION: There is an increasing number of children with complex care needs, however, there is limited evidence of the experience of families during the process of transitioning to becoming their child's primary care giver. The aim of this study was to explore parents' perspectives of the transition to home of a child with complex respiratory health care needs. METHODS: Parents of children with a tracheostomy with or without other methods of respiratory assistance, who had transitioned to home from a large children's hospital in the last 5 years, were invited to participate in the interviews. Voice-centred relational method of qualitative analysis was used to analyse parent responses. RESULTS: Four key themes emerged from the interviews including "stepping stones: negotiating the move to home", "fighting and frustration", "questioning competence" and "coping into the future". DISCUSSION: There is a need for clear and equitable assessments and shared policies and protocols for the discharge of children with complex care needs. Direction and support are required at the level of health service policy and planning to redress these problems. This study provides evidence that the transition of children with complex care needs from hospital to home is a challenging dynamic in need of further improvement and greater negotiation between the parent and health service provider. There are tangible issues that could be addressed including the introduction of a standardised approach to assessment of the needs of the child and family in preparation for discharge and for clear timelines and criteria for reassessment of needs once at home.

Transition towards end of life in palliative care: an exploration of its meaning for advanced cancer patients in Europe.

Transition as a concept in healthcare has been explored, but there is limited empirical work which considers transition in the context of palliative care, specifically from the patient perspective. This article reports findings from a qualitative study designed to explore transition experiences of 100 advanced cancer patients in six European countries. Data were analyzed using the ATLAS.ti program. Findings suggest that transition is a confusing time of mixed messages, poor communication, and uncertainty, but the physical environment of the hospice offers a place of ontological security from which to address this. Transition concepts fail to capture the palliative care experience fully. Transience, as an alternative concept, is reported, although further research is needed to explore this. In clinical practice, the value given to hospice by patients suggests that clinicians must carefully balance the benefit of mainstream integration with sensitive assimilation of hospice philosophy.

Towards a conceptual evaluation of transience in relation to palliative care.

AIM: This paper is a report of a concept evaluation of transience and its relevance to palliative care. BACKGROUND: A qualitative study into palliative care patients' experiences of transition revealed a gap between current definitions of transition and their expression of the palliative care experience. Transience appears to offer a better definition but remains conceptually weak, with limited definition in a healthcare context. METHODS: A qualitative conceptual evaluation of transience was undertaken using two case examples, interview data and the literature. Multiple sources were used to identify the literature (1966-2006), including a search on Cumulative Index to Nursing and Allied Health Literature Medline, and Ovid and Arts and Humanities Index using the keywords 'transience' and 'palliative care'. Thirty-one papers related to transience were retrieved. Analysis and synthesis formulated a theoretical definition of transience relative to palliative care. FINDINGS: Transience is a nascent concept. Preconditions and outcomes of transience appear contextually dependent, which may inhibit its conceptual development. Transience depicts a fragile emotional state related to sudden change and uncertainty at end-of-life, exhibited as a feeling of stasis. Defining attributes would seem to include fragility, suddenness, powerlessness, impermanence, time, space, uncertainty, separation and homelessness. CONCLUSIONS: Transience is potentially more meaningful for palliative care in understanding the impact of end-of-life experiences for patients than current conceptualizations of transition as a process towards resolution. As a nascent concept, it remains strongly encapsulated within a framework of transition and further conceptual development is needed to enhance its maturity and refinement.