Advance care planning in dementia: recommendations for healthcare professionals.

BACKGROUND: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care. METHODS: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners). RESULTS: Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence. CONCLUSION: No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

Defining the palliative care patient: a systematic review.

BACKGROUND: The lack of a clear definition of the palliative care patient hampers the comparison of results across different studies and impedes implementation of research findings in everyday practice. AIM: The aim of this article is to propose minimum characteristics that define a palliative care patient. DESIGN: The design involved a systematic review of medical literature searching randomised controlled trials (RCTs) in palliative care for clear descriptions of their palliative care patients. We systematically describe relevant characteristics of the study populations of 60 eligible RCTs. DATA SOURCES: The data sources used were MEDLINE, EMBASE, CINAHL, and PSYCHINFO, including all non-cancer RCTs (1 January 1995-4 March 2010) and an equivalent number of the most recent cancer RCTs (1 January 2003-4 March 2010). RESULTS: Half of the non-cancer studies were excluded because they did not relate to palliative care. We conclude that published RCTs have no clear definitions of their palliative care patients and illustrate the diversity of this patient, the lack of consensus concerning the attributes of illnesses needing palliation and the ambiguous use of the adjective 'palliative'. CONCLUSIONS: We propose elements of the patients' health status (e.g. a progressive, life-threatening disease with no possibility of obtaining remission or stabilisation, or modifying the course of the illness) and the care delivered to them (e.g. a holistic interdisciplinary approach that focuses on supporting the quality of the end of life) to be included in the definition of a palliative care patient. We also suggest considering the patients' readiness to accept palliative care and a vision of palliative care shared by the patient and all caregivers involved as potentially important elements in this definition.

Outcome measures of spiritual care in palliative home care: a qualitative study.

The purpose of this study was to identify key outcome measures of spiritual care in palliative home care. A qualitative study was conducted with experts from 3 stakeholder groups (physicians, professional spiritual caregivers, and researchers) representing 2 countries (Belgium and The Netherlands). Three key outcome measures were identified: the extent to which the patient feels that he or she is being heard and taken seriously, the extent to which the patient experiences that there is a place for that which is insoluble, and the extent to which the patient experiences that there is a place for that which cannot be said. Further research is needed to implement and evaluate these new outcome measures.

Spirituality in palliative home care: a framework for the clinician.

PURPOSE: Spiritual care at the end of life remains poorly understood despite its promotion by the World Health Organisation. The purpose of this paper was to develop a consensus-based framework of the main elements of spiritual care in palliative home care. METHODS: Expert meeting using the nominal group technique, followed by a two-stage web-based Delphi process, was used. Experts from three stakeholder groups (physicians, professional spiritual care givers and researchers) representing two countries (Belgium and the Netherlands) participated in this study. RESULTS: Fourteen elements of spiritual care were retained: (1) being sensitive to patient's fear of the dying process; (2) listening to the patient's expectations and wishes about the end of life; (3) giving attention to patient's wishes about the design of the farewell; (4) offering rituals if the patient experiences them as meaningful; (5) listening to the stories, dreams and passions of the patient; (6) helping the patient find strength in inner resources; (7) connecting with the patient in truth, openness and honesty; (8) supporting communication and quality of relationships; (9) making sure the patient feels comfortable and safe; (10) seeing spirituality as an interwoven, though specific dimension; (11) caring for your own spirituality; (12) knowing and accepting your vulnerability; (13) being able to learn from your patient; and (14) having an interdisciplinary team that is there when needed. CONCLUSIONS: The experts agreed to the 14 main elements of spiritual care in palliative home care. There were no differences in this regard between the stakeholder groups. This study provides a first step towards the development of an interdisciplinary spiritual care model in palliative home care.

Spirituality in general practice: a qualitative evidence synthesis.

BACKGROUND: Although it is now common to see spirituality as an integral part of health care, little is known about how to deal with this topic in daily practice. AIM: To investigate the literature about GPs' views on their role in spiritual care, and about their perceived barriers and facilitating factors in assessing spiritual needs. DESIGN: Qualitative evidence synthesis. METHOD: The primary data sources searched were MEDLINE, Web of Science, CINAHL, Embase, and ATLA Religion Database. Qualitative studies that described the views of GPs on their role in providing spiritual care, or that described the barriers and facilitating factors they experience in doing so, were included. Quantitative studies, descriptive papers, editorials, and opinion papers were excluded. RESULTS: Most GPs see it as their role to identify and assess patients' spiritual needs, despite perceived barriers such as lack of time and specific training. However, they struggle with spiritual language and experience feelings of discomfort and fear that patients will refuse to engage in the discussion. Communicating willingness to engage in spiritual care, using a non-judgemental approach, facilitates spiritual conversations. CONCLUSION: The results of the studies included here were mostly congruent, affirming that many GPs see themselves as supporters of patients' spiritual wellbeing, but lack specific knowledge, skills, and attitudes to perform a spiritual assessment and to provide spiritual care. Spirituality may be of special consequence at the end of life, with an increased search for meaning. Actively addressing spiritual issues fits into the biopsychosocial-spiritual model of care. Further research is needed to clarify the role of the GP as a spiritual care giver.