Wouter Van Mechelen

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.

Spirituality in palliative home care: a framework for the clinician

PurposeSpiritual 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.MethodsExpert 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.ResultsFourteen 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.ConclusionsThe 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.

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.

Advance care planning in dementia: recommendations for healthcare professionals

BackgroundAdvance 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.MethodsFollowing 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).ResultsBased 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.ConclusionNo 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 a palliative care patient: Reaction on Groninger H. Letter to the Editor: Regarding a definition of the palliative care patient

Dr Hunter addresses some findings of our systematic review1 on the definition of a palliative care patient published in the March 2013 edition of Palliative Medicine. He suggests extending the definition of a palliative care patient to patients with chronic non-life-threatening conditions and proposes an alternative direction for defining the palliative care patient based on the needs for palliative care services. He correctly remarked the limitation of the reviewing process to randomized controlled trials (RCTs). We used a quantitative approach in a first step to clarify the palliative care patients’ concept in an original and feasible way. We choose this approach because RCTs’ inclusion and exclusion criteria give us the most precise definition from the authors of the study. We would like to emphasize an interesting shift in the discussion from the original reviewers’ question “What is a palliative care patient?” to the closely related question “What is palliative care?” and whether or not the care for chronic non-life-threatening conditions (e.g. chronic nonmalignant pain, chronic renal failure and chronic genetic disorders) should be “covered” by the term palliative care (PC). This discussion of semantics is structured in a recent systematic review where Hui et al.2 describe conceptual differences and similarities of three terms: supportive care (SC), PC, and hospice care (HC). The authors systematically searched medical literature for published peerreviewed articles from 1948 to 2011 that conceptualized, defined, or examined these terms and developed a preliminary conceptual framework unifying these terms along the continuum of care. Hui et al. found 24 different definitions of PC and identified that common concepts for all the three terms were symptom control and quality of life for patients with life-limiting illness. SC focuses more on patients on active treatment and less often involved interdisciplinary care. HC focuses more on volunteers, bereavement care, and community care and was not applicable earlier in the disease trajectory. Hui et al. propose a framework where HC is part of PC, which in turn is part of SC with the stage of disease (no evidence of disease, early stage disease, advanced disease, and near death and bereavement) as a key distinguishing factor. Based upon the definition of PC and the publication of Hui et al., we suggest to define the care for chronic non-life-threatening conditions (e.g. chronic nonmalignant pain, chronic renal failure, and chronic genetic disorders) as SC, thereby respecting and not extending the World Health Organization (WHO)’s definition of PC.3 However, we agree that identifying the transitions between these concepts (for different diseases) is difficult and challenging.4 Groninger made a valuable suggestion to define a palliative care patient according to their need for palliative care services. Indeed, criteria to identify a palliative care patient in clinical practice are often indicators for the need for extra SC (e.g. general or specific clinical indicators for advanced disease in the “Supportive and Palliative care IndiCator Tool” of the Gold Standards Framework: poor functional status, oxygen dependency, unexpected hospital admissions, etc.).5 Although, the elements we propose to integrate in a definition of a PC patient do include these palliative care needs. We actually describe a palliative care patient as a patient with an advanced, life-threatening condition in which it is no longer possible and/or desirable to influence the natural course of illness (not to restore or to stabilize or to restrain) and in which a need for PC consequently appears (the need for a holistic, multidisciplinary approach focusing on pain and symptom control, and quality of life). The overall goal of care should be a determinant factor to define a palliative care patient. If the intention of care delivery is to cure the patient (e.g. child with acute lymphoblastic leukemia treated with the intention to cure), we would not name this patient a palliative care patient although he or she may need SC.