Marie-José H.E. Gijsberts

Spirituality at the End of Life: Conceptualization of Measurable Aspects—a Systematic Review

Although spiritual caregiving is a key domain of palliative care, it lacks a clear definition, which impedes both caregiving and research in this domain. The aim of this study was to conceptualize spirituality by identifying dimensions, based on instruments measuring spirituality in end-of-life populations. A systematic literature review was conducted. Literature published between 1980 and 2009, focussing on instruments measuring spirituality at the end of life was collected from the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO databases. Inclusion criteria were: (1) the studies provide empirical data collected with an instrument measuring spirituality or aspects of spirituality at the end of life; (2) the data report on a (subgroup) of an end-of-life population, and (3) the instrument is available in the public domain. Content validity was assessed according to a consensus-based method. From the items of the instruments, three investigators independently derived dimensions of spirituality at the end of life. In 36 articles that met the inclusion criteria we identified 24 instruments. Nine instruments with adequate content validity were used to identify dimensions of spirituality. To adequately represent the items of the instruments and to describe the relationships between the dimensions, a model defining spirituality was constructed. The model distinguishes the dimensions of Spiritual Well-being (e.g., peace), Spiritual Cognitive Behavioral Context (Spiritual Beliefs, Spiritual Activities, and Spiritual Relationships), and Spiritual Coping, and also indicates relationships between the dimensions. This model may help researchers to plan studies and to choose appropriate outcomes, and assist caregivers in planning spiritual care.

Zorg aan het levenseinde bij bewoners met dementie in antroposofische en reguliere verpleeghuizen. Een pilot studie

End-of-life with dementia in Dutch antroposofic and traditional nursing homesEvery year more than 20.000 people with dementia die in Dutch nursing homes and this number steadily increases. Therefore, the importance of good end-of-life care for these patients including physical, psychosocial and spiritual care is evident. Although the training standards for Dutch nursing home physicians and nurses share a common standard, the philosophy of a nursing home may affect end-of-life care strategies for the residents. We compared end of life of nursing home residents with dementia in two anthroposophic and two traditional nursing homes in a retrospective study using the most specific instrument available: the End-of-Life in Dementia scales (EOLD). Family caregivers completed the EOLD questionnaire. There was no difference in mean Satisfaction With Care scale scores between both types of nursing homes: 32.9 (SD 4.3) and 31.6 (SD 4.9), respectively. The anthroposophic nursing homes had significant higher scores on the ‘Symptom Management’ ((32.9 (SD 7.5) versus 26.9 (SD 9.5)), and ‘Comfort Assessment in Dying’ scales (34.0 (SD 3.9) versus 30.8 (SD 5.8)) and on its subscale Well Being (7.7 (SD 1.2) versus 6.7 (SD 2.1)). Our results suggest that death with dementia was more favourable in anthroposophic nursing homes than in regular homes. The results inform further prospective studies on nursing homes how this and other philosophies are translated into daily nursing home practice, including decision making in multi-disciplinary teams, family consultation, and complementary non-pharmacological therapies.SamenvattingJaarlijks overlijden er in Nederland meer dan 20.000 mensen met dementie in het verpleeghuis en dit aantal stijgt nog steeds. Het is belangrijk dat verpleeghuizen goede levenseindezorg leveren voor deze patiënten, wat inhoudt lichamelijke, psychosociale en spirituele zorg. Alhoewel verpleeghuisartsen en ziekenverzorgenden worden opgeleid volgens dezelfde opleidingseisen, heeft de signatuur van een verpleeghuis mogelijk invloed op accenten in de geboden zorg aan het levenseinde. Wij vergeleken het levenseinde van bewoners met dementie in twee reguliere en twee antroposofische verpleeghuizen in een retrospectieve studie met de “End-of-Life in Dementia scales (EOLD)”. Dit is het meest specifieke instrument voor deze patiëntenpopulatie, en wordt als vragenlijst door familieleden ingevuld. Wij vonden geen verschil in gemiddelde ‘Satisfaction with care’ scores tussen beide groepen: 32,4 (SD 4,3) respectievelijk 31,6 (SD 4,9). De antroposofische verpleeghuizen scoorden significant gunstiger op ‘Symptom Management’ in de laatste drie levensmaanden: 32,9 (SD 7,5) respectievelijk 26,9 (SD 9,5) en ‘Comfort Assessment in Dying: 34,0 (SD 3,9) respectievelijk 30,8 (SD 5,8). Ook was de score significant gunstiger op de subschaal ‘Welbevinden’ tijdens het stervensproces: 7,7 (SD 1,2) respectievelijk 6,7 (SD 2,1). Onze resultaten wijzen erop dat sterven met dementie in de antroposofische verpleeghuizen gunstiger verloopt. Er is nader prospectief onderzoek nodig naar de vraag met welke onderdelen van het zorgproces dit samenhangt, zoals besluitvorming in multidisciplinair overleg, familiegesprekken en aanvullende niet-medicamenteuze behandelingen.

Predictors of spiritual care provision for patients with dementia at the end of life as perceived by physicians: a prospective study

BackgroundSpiritual caregiving is part of palliative care and may contribute to well being at the end of life. However, it is a neglected area in the care and treatment of patients with dementia. We aimed to examine predictors of the provision of spiritual end-of-life care in dementia as perceived by physicians coordinating the care.MethodsWe used data of the Dutch End of Life in Dementia study (DEOLD; 2007–2011), in which data were collected prospectively in 28 Dutch long-term care facilities. We enrolled newly admitted residents with dementia who died during the course of data collection, their families, and physicians. The outcome of Generalized Estimating Equations (GEE) regression analyses was whether spiritual care was provided shortly before death as perceived by the on-staff elderly care physician who was responsible for end-of-life care (last sacraments or rites or other spiritual care provided by a spiritual counselor or staff). Potential predictors were indicators of high-quality, person-centered, and palliative care, demographics, and some other factors supported by the literature. Resident-level potential predictors such as satisfaction with the physician’s communication were measured 8 weeks after admission (baseline, by families and physicians), physician-level factors such as the physician’s religious background midway through the study, and facility-level factors such as a palliative care unit applied throughout data collection.ResultsAccording to the physicians, spiritual end-of-life care was provided shortly before death to 20.8% (43/207) of the residents. Independent predictors of spiritual end-of-life care were: families’ satisfaction with physicians’ communication at baseline (OR 1.6, CI 1.0; 2.5 per point on 0–3 scale), and faith or spirituality very important to resident whether (OR 19, CI 5.6; 63) or not (OR 15, CI 5.1; 47) of importance to the physician. Further, female family caregiving was an independent predictor (OR 2.7, CI 1.1; 6.6).ConclusionsPalliative care indicators were not predictive of spiritual end-of-life care; palliative care in dementia may need better defining and implementation in practice. Physician-family communication upon admission may be important to optimize spiritual caregiving at the end of life.

Defining Spirituality at the End of Life

Dear Editor: Vachon et al. performed a conceptual analysis of spirituality at the end of life by reviewing the empirical literature for definitional elements of the concept. Eleven themes were identified, including, for example, ‘‘meaning and purpose’’ and ‘‘developmental nature.’’ Based on this work, a definition of spirituality at the end of life was provided as ‘‘a developmental and conscious process, characterized by two movements of transcendence; either deep within the self or beyond the self.’’ Spirituality is an ill-defined concept leading to similar problems in research and practice as with a concept such as quality of life, and promoting consensus on an inclusive definition may help to advance research and practice. We therefore appreciate the contribution of a literature review and comprehensive thematic analysis. We would like to add some suggestions and comments to their approach and resulting themes, and to the provided definition. The themes do not seem to be mutually exclusive because the themes ‘‘self-transcendence’’ and ‘‘faith and beliefs’’ both include ‘‘faith in self.’’ Moreover, the themes do not represent a consistent class of themes because they differ by nature. For example, ‘‘developmental nature’’ is an overarching theme that may refer to spiritual growth due to development in finding ‘‘meaning’’ as well as to a change in ‘‘appreciation of life.’’ Similarly, ‘‘conscious nature’’ is assumed to be a characteristic of other themes, which means that it transcends other themes. Listing themes with different levels of abstraction may be inherent to the approach followed whereby themes are derived from categorized definitional elements. However, fitted in some conceptual and possibly hierarchical model may be more informative. Furthermore, we see two basic problems with the definition of spirituality provided. The first is that including transcendence in the definition will not resolve the problem cited by the authors, namely that spirituality is a very abstract term to palliative care providers, and is therefore unlikely to guide clinical practice. While the definition alone may not be helpful, the more elaborate description in terms of the themes probably is. We learn from this that a clear single definition that captures all of the complexities may just not be feasible. The second definitional issue we would like to comment on is that the authors’ emphasis on the conscious experience is problematic for the assessment of spirituality in many patients at the end of life. The authors explain that they ‘‘insist on the fact that spirituality should be described as a conscious experience [ . . . ] even if not highlighted in many articles,’’ and that ‘‘. . . the capacity to reflect upon values and priorities are what makes an experience spiritual.’’ The emphasis on the capacity to perform highly intellectual activities excludes many patients at the end of life from having spiritual experiences by this definition, excluding for example, many nursing homes patients and patients with mild or more severe cognitive problems due to end-stage disease. We are not sure that a spiritual experience can only be acknowledged as such when experienced fully conscious, and, perhaps more importantly for practice, we doubt if this emphasis will help improve spiritual care at the end of life. We suggest an alternative approach to arrive at a definition, or better, a model representative of the empirical literature, which is to review measurable aspects of spirituality that are included in instruments used to measure spirituality in end-of-life populations in practice. It should avoid other abstract terms and apply to patients at the end of life whose consciousness is frequently suboptimal, and be useful in practice.

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development

BackgroundWhen entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base.MethodsIn 2015–2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development.Results(1) The EAPC domain of “avoiding overly aggressive, burdensome, or futile treatment” was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient.ConclusionA mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.