BACKGROUND: The use of observational measures to assess palliative care patients' level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the validity and reliability of these measures in palliative care settings.
AIM: To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care.
DESIGN: Systematic review; PROSPERO registration: CRD42017073080.
DATA SOURCES: We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures.
RESULTS: We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken (n = 21) or established tools mainly developed and validated in non-palliative care settings (n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation–Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties.
CONCLUSION: An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.
Cet article est le deuxième d'une série de deux qui se voit consacré au concept de présence chez les infirmières en soins palliatifs (SP), dans le cadre de la programmation de recherche SATIN II (SATisfaction, le sens au travail et le bien-être des INfirmières, Fillion et al. 2017). Le premier article visait à mieux comprendre l'expérience vécue de la présence selon le point de vue d'infirmières en SP. La présente étude qualitative a pour sa part comme objectif d'explorer les effets possibles d'une intervention de groupe basée sur le sens et la pleine conscience sur l'expérience de la présence des infirmières. Des entretiens semi-structurés ont été menés auprès de huit infirmières qui oeuvraient exclusivement dans un service de SP après leur participation à l'intervention de groupe. Nos analyses des récits des participantes nous ont permis de catégoriser en deux groupes les effets de l'intervention sur la présence des infirmières, soit les bienfaits de l'intervention : 1) être plus présente à soi ; 2) mieux faire face au stress du quotidien ; 3) revenir au "ici et maintenant" ; 4) accroître sa conscience de la présence et 5) donner sens au prendre soin. Nous avons également soulevé certains défis associés à l'intervention. En conclusion, notre recherche souligne la nécessité d'accompagner les soignants dans leur pratique de la présence et de la pleine conscience dans le cadre de leur travail.
Background: Requests for physician-assisted death (PAD) in patients with cognitive impairment are complex and require careful consideration. Of particular difficulty is determination of whether the request is voluntary and well considered.
Results: Euthanasia and physician-assisted suicide (PAS) are both legal in The Netherlands, Luxemburg, Colombia, and Canada. Euthanasia is legal in Belgium, while PAS is legal in Switzerland and Oregon, Washington, Montana, Vermont, and California (USA). Upon a PAD request, evaluation of the capacity to consent medical treatment is relevant for the decision-making process, while evaluation of testamentary capacity is appropriate before an advance euthanasia directive is written. Anosognosia assessment throughout the Alzheimer's disease continuum provides essential and relevant information regarding the voluntary and well-considered nature of the PAD request; meanwhile, early assessment of hypernosognosia or subjective cognitive decline assists in formulation of a clinical prognosis. Furthermore, the assessment of physical and psychological suffering should incorporate verbal and nonverbal cues as well as consideration of the psychosocial factors that might affect due care criteria.
Conclusion: The clinical approach to a PAD request should consider the legal framework and the decision-making capacity, assess memory deficit awareness and the perception of suffering, and evaluate mental competency when considered pertinent.
BACKGROUND: Emotional preparedness for death is a distinct but related concept to prognostic awareness (PA). Both allow patients to prepare psychologically and interpersonally for death but they have primarily been examined in cross-sectional studies.
OBJECTIVE: To (1) explore the courses of change in good emotional preparedness for death and accurate PA and (2) evaluate their associations with severe anxiety symptoms, severe depressive symptoms, and quality of life (QOL) in cancer patients' last year.
METHODS: For this prospective, longitudinal study, we consecutively recruited 277 terminally ill cancer patients. Aims 1 and 2 were examined by univariate and multivariate generalized estimating equation analyses, respectively.
RESULTS: The prevalence of good emotional preparedness for death was 54.43%–65.85% in the last year, with a significant decrease only 91–180 vs. 181–365 days before death (odds ratio [95% CI] = 0.67 [0.47, 0.97]). Good emotional preparedness for death was associated with a lower likelihood of severe anxiety symptoms (adjusted odds ratio [95% CI] = 0.47 [0.27, 0.79]) and severe depressive symptoms (0.61 [0.39, 0.95]), but not with quality of life (ß [95% CI] = 0.49 [-2.13, 3.11]). However, accurate PA improved substantially (55.12%–70.73%) as death approached and accurate PA was positively associated with severe depressive symptoms (2.63 [1.63, 4.25]).
CONCLUSIONS: Good emotional preparedness for death and accurate PA remained largely stable and improved substantially, respectively, in cancer patients' last year. Both measures were significantly associated with psychological distress. Healthcare professionals should not only cultivate accurate PA but also promote cancer patients' emotional preparedness for death, which may improve their psychological well-being.
Objective: In the emotionally intense field of healthcare, the ability to peacefully inhabit one's body, maintain good boundaries, and be fully present during care is essential. This study aimed to validate the recently developed Mindful Self-Care Scale (MSCS) among hospice and healthcare professionals and develop a brief version of the 33-item MSCS.
Method: A sample of hospice and healthcare professionals from all 50 states (n = 858) was used. A confirmatory factor analysis was run using a rigorous methodology for validation and item reduction to develop a brief version of the 33-item MSCS. The brief MSCS (B-MSCS) was developed by identifying items for exclusion through examination of conceptual overlap, descriptive statistics by detecting sources of improvement model fit using confirmatory factor analysis. Model modifications were done sequentially and with regard to theoretical considerations.ResultThe existing model, 33-item MSCS with six subscales, had good fit to the data with all indicators in acceptable ranges (chi-square/df = 3.08, df (480), p < 0.01, root mean square error of approximation = 0.059, comparative fit index = 0.915, Tucker and Lewis's index of fit = 0.907). Nine items were excluded on the basis of very low loadings and conceptual and empirical overlap with other items.
Significance of results: The final 24-item, B-MSCS model was consistent with the original conceptual model and had a closer fit to the data (chi-square/df = 1.85, df (215), p < 0.01, root mean square error of approximation = 0.041, comparative fit index = 0.961, Tucker and Lewis's index of fit = 0.955). In addition, the reliability, construct, and concurrent validity of the MSCS and B-MSCS were in the acceptable and good ranges, respectively. Mean and standard deviation of the MSCS and B-MSCS scores were similar; B-MSCS mean scores well approximated the MSCS scores. Informal mindful self-care, in the process of everyday life, was practiced more regularly and associated with increased wellness and reduced burnout risk than formal mind-body practices.
The convergence of medical treatment that can extend life with written medical orders that make it possible to refuse such treatment brings the differential dynamics of contemporary end-of-life decision making into sharp focus. Communication between families and clinicians can be confusing, uncertain, and pressured when death is imminent. These situations create distress that ultimately influences the end-of-life experience for people who are dying and those who care for them. This article presents the analysis of the decisional dynamics that emerge from the intersection of the patient-family-provider awareness that death is near with the presence or absence of documentation of expressed wishes for end-of-life care. A heuristic analysis was conducted with data from three studies about urgent decision making at the end of life. Original study data included 395 surveys, in-depth interviews with 91 prehospital (paramedics and emergency medical technicians), and content analysis of 100 Medical Orders for Life Sustaining Treatment forms that led to the development of an overarching conceptual model of decision making. Four decisional contexts emerged from the intersection of awareness of dying and documentation of wishes: 1) Aware Documented, 2) Aware Undocumented, 3) Unaware Documented, and 4) Unaware Undocumented. This generalizable model, which is agnostic of setting, can help clinicians more astutely recognize the clinical situation when death is imminent, assess patients and caregivers, and intervene to help focus conversation and direct decision making. The model can also inform research, education, and care for people in some of the most vulnerable moments of life.
OBJECTIVE: This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.
METHOD: An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.
RESULTS: The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script.
SIGNIFICANCE OF RESULTS: The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.
This case study illustrates the complex role that a physician's conscience can play in end-of-life care. We examine a case from Vermont in which a terminally ill patient requests aid-in-dying from her primary care physician under the state's "Patient Choice and Control at End of Life" Act (Act 39). The physician feels conflicted: she is opposed to prescribing death-hastening medication but does not want to abandon her patient. Much of the medical ethics literature on conscience focuses on whether health care professionals should be permitted to abstain from providing morally contested medical services. Our analysis highlights the interplay of conflicting values that inform the physician's engagement with aid-in-dying, demonstrating that the issue is often more nuanced than the question of whether or not a physician can (or should) opt out.
Death awareness leads to aversion from bodily processes such as breastfeeding and sex, especially among low body esteem individuals. Using a modality bias task, we examined whether primes of death reduced attention to bodily sensations. We subliminally primed 72 undergraduates with either the word death or failed and assessed their attention to tactile and visual stimuli as a function of their body esteem. Results indicated that death primes significantly reduced attention to tactile stimuli relative to visual stimuli in low body esteem individuals. Dissociation from the body, therefore, may be an unconscious terror management strategy utilized by people with low body esteem.
OBJECTIVES: In Canada, the rural elderly population is increasing in size, as is their need for palliative care services in these settings. This analysis aims to identify awareness-associated barriers to delivering rural palliative care services, along with suggestions for improving service delivery from the perspective of local health care providers.
METHODS: A total of 40 semi-structured interviews with various formal and informal health care providers were conducted in four rural and/or remote Canadian communities with limited palliative care resources. Interview data were thematically coded using Penchansky and Thomas' five dimensions of access (i.e. availability, (geographic) accessibility, accommodation, acceptability and affordability). Saurman's recently added sixth dimension of access - awareness - was also identified while coding and subsequently became the primary focus of this analysis.
RESULTS: Identified barriers to palliative care awareness and suggestions on how to enhance this awareness, and ultimately palliative care delivery, corresponded with three key themes arising from the data: limited palliative care knowledge/education, communication and coordination. Participants recognized the need for more palliative care education, open lines of communication and better coordination of palliative care initiatives and local resources in their communities.
CONCLUSIONS: These findings suggest that identifying the barriers to palliative care awareness in rural communities may be foundational to addressing barriers to the other five dimensions of access. A thorough understanding of these three areas of awareness knowledge, communication and coordination, as well as the connections between them, may help enhance how rural palliative care is delivered in the future.
BACKGROUN: Awareness and pain during palliative sedation is typically assessed by observational scales, but the use of such scales has been put into question.
CASE PRESENTATION:: A woman in her mid-80s was admitted to a palliative care unit, presenting with chronic lymphatic leukemia, depression, and a cerebrovascular accident, with right-sided hemiplegia and aphasia. The patient was unable to eat and was suffering from nausea and vomiting. Before admission, the patient had expressed her desire to discontinue treatment on several occasions.
CASE MANAGEMENT: The decision was made to initiate palliative sedation. The patient consented to take part in a study to assess level of comfort and pain using two monitoring devices (NeuroSense monitor and Analgesia Nociception Index monitor).
CASE OUTCOME: The patient died 90 h after initiation of palliative sedation. Titration of the medication was challenging and sedation was not deep enough during the first 2 days. Thirteen assessments made with the Ramsay Sedation Scale showed that the patient was considered to be in a deep sleep, while in fact the NeuroSense monitor indicated otherwise.
CONCLUSION: This case demonstrates the feasibility and potential advantages of using monitoring devices to objectify assessments of pain and discomfort in palliatively sedated patients.
'Palliation sedation' is a widely used term to describe the intentional administration of sedatives to reduce a dying person's consciousness to relieve intolerable suffering from refractory symptoms. Research studies generally focus on either 'continuous sedation until death' or 'continuous deep sedation'. It is not always clear whether instances of secondary sedation (i.e. caused by specific symptom management) have been excluded. Continuous deep sedation is controversial because it ends a person's 'biographical life' (the ability to interact meaningfully with other people) and shortens 'biological life'. Ethically, continuous deep sedation is an exceptional last resort measure. Studies suggest that continuous deep sedation has become 'normalized' in some countries and some palliative care services. Of concern is the dissonance between guidelines and practice. At the extreme, there are reports of continuous deep sedation which are best described as non-voluntary (unrequested) euthanasia. Other major concerns relate to its use for solely non-physical (existential) reasons, the under-diagnosis of delirium and its mistreatment, and not appreciating that unresponsiveness is not the same as unconsciousness (unawareness). Ideally, a multiprofessional palliative care team should be involved before proceeding to continuous deep sedation. Good palliative care greatly reduces the need for continuous deep sedation.
A decision by a society to sanction assisted dying in any form should logically go hand-in-hand with defining the acceptable method(s). Assisted dying is legal in several countries and we have reviewed the methods commonly used, contrasting these with an analysis of capital punishment in the USA. We expected that, since a common humane aim is to achieve unconsciousness at the point of death, which then occurs rapidly without pain or distress, there might be a single technique being used. However, the considerable heterogeneity in methods suggests that an optimum method of achieving unconsciousness remains undefined. In voluntary assisted dying (in some US states and European countries), the common method to induce unconsciousness appears to be self-administered barbiturate ingestion, with death resulting slowly from asphyxia due to cardiorespiratory depression. Physician-administered injections (a combination of general anaesthetic and neuromuscular blockade) are an option in Dutch guidelines. Hypoxic methods involving helium rebreathing have also been reported. The method of capital punishment (USA) resembles the Dutch injection technique, but specific drugs, doses and monitoring employed vary. However, for all these forms of assisted dying, there appears to be a relatively high incidence of vomiting (up to 10%), prolongation of death (up to 7 days), and re-awakening from coma (up to 4%), constituting failure of unconsciousness. This raises a concern that some deaths may be inhumane, and we have used lessons from the most recent studies of accidental awareness during anaesthesia to describe an optimal means that could better achieve unconsciousness. We found that the very act of defining an 'optimum' itself has important implications for ethics and the law.
Methods for assisting death in countries where the practice is legal do not reliably achieve unconsciousness at the time of death to ensure that the patient experiences no pain or distress, a review published in the journal Anaesthesia has found.
An argument made in support of assisted dying is that it minimises patients’ pain and distress and allows them to die with dignity at a time and place of their choosing.
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Spiritual care is a key tenet of palliative care. A nurse's spiritual perspective has been recognized as an influencing factor in spiritual care, and results from several studies have shown an increase in spiritual perspective as a result of participation in programs designed to develop mindfulness as well as developing skills necessary for spiritual care. A descriptive correlational design was used with a convenience sample of nurses from the Hospice and Palliative Nurses Association. Data were collected online using the Spiritual Perspective Scale, Mindful Attention Awareness Scale, and the Nurse Spiritual Care Therapeutics Scale. Spiritual perspective was positively correlated with age ( = 0.2, P = .046), years of registered nurse experience ( = 0.208, P = .039) and higher in those with a religious affiliation (U = 392.5, P < .001, r = 0.54). A positive correlation was found between mindfulness and spiritual care (r = 0.212, P = .05), with mindfulness explaining 4.5% of the variance in spiritual care. No significant relationships were found between spiritual perspective and mindfulness or spiritual care. Identifying mindfulness as a factor that may influence spiritual care has implications for education, research, and practice.
Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer ( n = 22) that refines the theory of "Living Well with Chronic Illness" for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that "I am dying." Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.
In 1965, Glaser and Strauss (1965) offered the concept of "awareness contexts" to explain what patients in hospitals do or don't know about their death trajectories. Awareness ranges from closed (where patients are completely unaware and family and providers protect "the secret") to open (where all parties communicate openly and honestly). While closed awareness was the norm in 1960s, open awareness is now considered standard practice in US, a reflection of mounting evidence that patients, families, and providers benefit from clear and honest communication at end of life (Seale et al., 1997; Wright et al., 2008). Despite the known benefits of open awareness, many terminal patients remain unaware or confused about their prognoses (Chen et al., 2017). This paper asks why, in an era of open awareness, are patients and families uncertain about dying? To answer this question, we focus on an aspect of Glaser and Strauss's theory that remains relatively understudied by researchers, namely the role of institutional and organizational realities in shaping awareness contexts. Based on interviews with 43 family members of deceased patients who died at General Hospital in the Midwestern US, we argue that two related conditions in hospitals-the increased specialization of medical professionals and the fragmentation of patient care-serve as important context for the death awareness of patients and families.
INTRODUCTION: Continuous palliative sedation (PS) is currently titrated based on clinical observation; however, it is often unclear if patients are still aware of their suffering. The aim of this prospective study is to characterize the level of consciousness in patients undergoing PS using Bispectral Index (BIS) monitoring.
PATIENTS AND METHODS: We enrolled consecutive patients with refractory symptoms requiring PS. We documented the level of sedation using Ramsay Sedation Scale (RSS) and BIS at 0, 2, 4, 6, 12, and 24 h during the first day of PS and examined their degree of association. Intravenous midazolam or propofol was titrated according to the sedation level.
RESULTS: Twenty patients on PS were recruited and had BIS continuous monitoring. Delirium was the most frequent reason for PS (n = 15, 75%). The median time of sedation was 24.5 h (interquartile range 6–46). The average time to achieve the desired sedation level was 6 h, and dose titration was required in 80% of the cases. At baseline, 14 (70%) patients were considered to be awake according to RSS (i.e., 1–3) and 19 (95%) were awake according to BIS (i.e., >60%). This proportion decreased to 31 and 56% at 4 h, 27% and 53 at 6 h, and 22 and 33% at 24 h. RS and BIS had moderate correlation (rho = -0.58 to -0.65); however, a small proportion of patients were found to be awake by BIS (i.e., =60%) despite clinical observation (i.e., RSS 4–6) indicating otherwise.
CONCLUSIONS: The BIS is a noninvasive, bedside, real-time continuous monitoring method that may facilitate the objective assessment of level of consciousness and dose titration in patients undergoing PS.