Sedation in specialized palliative care: A cross-sectional study.
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ABSTRACT: Background
Palliative sedation is used to relieve refractory symptoms and is part of clinical practice in Sweden. Yet we do not know how frequently this practice occurs, how decision-making takes place, or even which medications are preferentially used.Objectives
To understand the current practice of palliative sedation in Sweden.Methods
We conducted a retrospective cross-sectional medical record-based study. For 690 consecutive deceased patients from 11 of 12 specialized palliative care units in the southernmost region of Sweden who underwent palliative sedation during 2016, we collected data on whether the patient died during sedation and, for sedated patients, the decision-making process, medication used, and depth of sedation.Results
Eight percent of patients were sedated. Almost all (94%) were given midazolam, sometimes in combination with propofol. The proportions of sedation were similar in the patient groups with and without cancer. The largest proportion of the sedated patients died in inpatient care, but 23% died at home, with specialized palliative home care. Among the patients with a decision to sedate, 42% died deeply unconscious, while for those without such a decision the corresponding figure was 16%. In only one case was there more than one physician involved in the decision to use palliative sedation.Conclusion
8% of patients in specialized palliative care received palliative sedation, which is lower than international measures but much increased compared to an earlier Swedish assessment. The level of consciousness achieved often did not correspond to the planned level; this, together with indications of a scattered decision process, shows a need for clear guidelines.
SUBMITTER: Hedman C
PROVIDER: S-EPMC9269455 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Decision-making in palliative care can be complex due to the uncertain prognosis and general fear surrounding decisions. Decision-making in palliative care may be influenced by spiritual and cultural beliefs or values. Determinants of the decision-making process are not completely understood, and spirituality is essential for coping with illness. Thus, this study aims to explore the influence of spirituality on the perception of healthcare decision-making in palliative care outpatients. METHODS:A cross-sectional study was developed. A battery of tests was administered to 95 palliative outpatients, namely: sociodemographic questionnaire (SQ), Decisional Conflict Scale (DCS), Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp), and a semi-structured interview (SSI) to study one's perception of spirituality and autonomy in decision-making. Statistical analyses involved descriptive statistics for SQ and SSI. The Mann-Whitney test was used to compare scale scores between groups and correlations were used for all scales and subscales. The analysis of patients' definitions of spirituality was based on the interpretative phenomenological process. RESULTS:Spiritual wellbeing significantly correlated with greater levels of physical, emotional and functional wellbeing and a better quality of life. Greater spiritual wellbeing was associated with less decisional conflict, decreased uncertainty, a feeling of being more informed and supported and greater satisfaction with one's decision. Most patients successfully implemented their decision and identified themselves as capable of early decision-making. Patients who were able to implement their decision presented lower decisional conflict and higher levels of spiritual wellbeing and quality of life. Within the 16 themes identified, spirituality was mostly described through family. Patients who had received spiritual care displayed better scores of spiritual wellbeing, quality of life and exhibited less decisional conflict. Patients considered spirituality during illness important and believed that the need to receive spiritual support and specialised care could enable decision-making when taking into consideration ones' values and beliefs. CONCLUSION:The impact of spiritual wellbeing on decision-making is evident. Spirituality is a key component of overall wellbeing and it assumes multidimensional and unique functions. Individualised care that promotes engagement in decision-making and considers patients' spiritual needs is essential for promoting patient empowerment, autonomy and dignity.
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Project description:BackgroundOccupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery.AimThis study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services.DesignA 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time).ResultsIn total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers.ConclusionFurther development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.
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Project description:ContextSpecialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed.ObjectiveThe objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes.MethodsWe performed a Systematic Review following Cochrane methods.Data sourcesMedline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018.Study selection/data extractionWe included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria.ResultsTwenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life scores in all four studies that assessed this outcome. No other outcome showed this consistency.ConclusionReceiving SPPC was associated with better child quality of life. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed.
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