BACKGROUND: General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood.
OBJECTIVE: To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system.
METHOD: Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
RESULTS: From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN's role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs.
CONCLUSIONS: Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.
Background: Over the last two decades an increasing number of countries have legalized euthanasia and physician-assisted suicide (EAS) leading to considerable debate over the inherent ethical dilemmas. Increasing numbers of people with personality disorders, faced with unbearable suffering, have requested and received assistance in terminating their lives. EAS in people with personality disorders has, however, received very sparse attention from clinicians and researchers. In this paper, we examine the literature on the practice and prevalence of EAS in people with personality disorders to date and discuss the associated challenges for research and practice.
Methods: Narrative review of the literature combined with the authors' collective experience and knowledge of personality disorders.
Results: In six of the eight countries where EAS is currently legal, mental disorders are accepted as disorders for which EAS may be granted. In four of these countries, EAS in minors with mental disorders is also accepted. Our literature search resulted in 9 papers on the subject of EAS in people with personality disorders. These studies suggest that most clinicians who grant EAS have indeed perceived their patients' suffering as chronic, unbearable and untreatable without prospect of improvement. The majority of patients with personality disorders had tried some form of psychotherapy, but very few had received any of the relevant evidence-based treatments. The decision to grant EAS based on a perception of the patient's illness as being untreatable with no prospect of improvement, could, thus, in many cases fail to meet the due care criteria listed in EAS laws. People with personality disorders more often wish for death for extended periods of time than people without these disorders. However, there is ample empirical data to show that suicidal tendencies and behaviour can be treated and that they fluctuate rapidly over time.
Conclusions: In light of our findings, we believe that the current legislation and practice of EAS for people with personality disorders is based on an inadequate understanding of underlying psychopathology and a lack of awareness about the contemporary treatment literature. Moreover, we assert that this practice neglects the individual's potential for having a life worth living.
BACKGROUND: The increased number of deaths in the community happening as a result of COVID-19 has caused primary healthcare services to change their traditional service delivery in a short timeframe. Services are quickly adapting to new challenges in the practical delivery of end-of-life care to patients in the community including through virtual consultations and in the provision of timely symptom control.
AIM: To synthesise existing evidence related to the delivery of palliative and end-of-life care by primary healthcare professionals in epidemics and pandemics.
DESIGN: Rapid systematic review using modified systematic review methods, with narrative synthesis of the evidence.
DATA SOURCES: Searches were carried out in Medline, Embase, PsychINFO, CINAHL and Web of Science on 7th March 2020.
RESULTS: Only five studies met the inclusion criteria, highlighting a striking lack of evidence base for the response of primary healthcare services in palliative care during epidemics and pandemics. All were observational studies. Findings were synthesised using a pandemic response framework according to 'systems' (community providers feeling disadvantaged in terms of receiving timely information and protocols), 'space' (recognised need for more care in the community), 'staff' (training needs and resilience) and 'stuff' (other aspects of managing care in pandemics including personal protective equipment, cleaning care settings and access to investigations).
CONCLUSIONS: As the COVID-19 pandemic progresses, there is an urgent need for research to provide increased understanding of the role of primary care and community nursing services in palliative care, alongside hospices and community specialist palliative care providers.
The Institute of Medicine reports lesbian, gay, bisexual and transgender (LGBT) individuals having the highest rates of tobacco, alcohol and drug use leading to elevated cancer risks. Due to fear of discrimination and lack of healthcare practitioner education, LGBT patients may be more likely to present with advanced stages of cancer resulting in suboptimal palliative care. The purpose of this scoping review is to explore what is known from the existing literature about the barriers to providing culturally competent cancer-related palliative care to LGBT patients. This review will use the five-stage framework for conducting a scoping review developed by Arksey and O'Malley. The PubMed, Scopus, PsychINFO and Cochrane electronic databases were searched resulting in 1,442 citations. Eligibility criteria consisted of all peer-reviewed journal articles in the English language between 2007 and 2020 resulting in 10 manuscripts. Barriers to palliative cancer care for the LGBT include discrimination, criminalisation, persecution, fear, distress, social isolation, disenfranchised grief, bereavement, tacit acknowledgment, homophobia and mistrust of healthcare providers. Limited healthcare-specific knowledge by both providers and patients, poor preparation of legal aspects of advanced care planning and end-of-life care were underprovided to LGBT persons. As a result of these barriers, palliative care is likely to be provided for LGBT patients with cancer in a deficient manner, perpetuating marginalisation and healthcare inequities. Minimal research investigates these barriers and healthcare curriculums do not provide practitioners skills for administering culturally sensitive palliative care to LGBT patients.
PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer.
METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups.
RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1).
CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.
Background: Understanding end-of-life (EOL) and palliative care continues to grow. However, little attention has been paid to the experiences, preferences, and needs of older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women. While some universal expectations or preferences at EOL exist, this population may not receive adequate or appropriate attention or reporting of unique EOL issues and experiences.
Objective: Systematically search for and narratively review existing evidence concerning the expectations, preferences, and needs for palliative and EOL care of LGBTQ older women.
Design: A comprehensive literature review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Articles reporting needs, experiences, and perspectives of palliative care and EOL care among LGBTQ older women were evaluated.
Measurements: Articles published between 1996 and 2019 were retrieved from PsycINFO, MEDLINE, Cochrane Library, Academic Search Complete, AgeLine, CINHAL, PubMed, LGBT Life, SocINDEX, Women's Studies International, Joanna Briggs Institute, and Open Grey.
Results: A total of 16 articles were included. Articles described several concerns for the overall LGBTQ population; however, additional issues and experiences specific to older LGBTQ women were also identified, including vulnerability associated with isolation and poverty, women's social needs and support networks, and preferences for complementary care.
Conclusion: There remains a need for further research with older LGBTQ women concerning palliative and EOL care, particularly around preparation for EOL and preferences for support. Inclusion of diverse populations in terms of sexual and gender identification are needed to fully understand how to provide appropriate and preferred support.
BACKGROUND: End-of-life care is high on policy and political agendas in the UK and internationally. Nurses are at the forefront of this, caring for dying patients, 'managing' the dead body, and dealing with the corporeal, emotional and relational dimensions of death. Little is known about nurses' prior or early professional experiences of and reactions to death, dying and the corpse and how these might influence practice.
AIMS: To appraise the international literature on nurses' early experiences of death, dying and the dead body, to better understand how these might influence subsequent practice, and how this might inform our teaching of death, dying and last offices.
METHODS: A scoping review was undertaken of peer-reviewed publications between, 2000 and 2019, which included nurses working in hospital, care homes and the community. Medline, PubMed, PsychINFO and CINAHL databases were searched and 23 papers meeting the inclusion criteria were read. Arksey and O'Malley's (2005) five-stage approach was adopted to scope the relevant international literature, using where relevant the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Selected papers were independently reviewed and subjected to thematic analysis, leading to the generation of five overarching themes.
RESULTS: The five themes were: different philosophies of care; relationships; knowledge; impact of death; and giving care. The studies came from diverse geographical locations across different settings and were primarily qualitative in design.
CONCLUSIONS: Students and registered nurses are impacted both positively and negatively by their early encounters with death and dying. Good communication with patients, families and between professionals, understanding of what constitutes a 'good' death, and high-quality mentorship and support were of particular importance.
INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review utilizes the Ring Theory of Personhood (RToP) to evaluate how a physician's concept of personhood is affected caring for terminally ill children in order to better support them holistically.
METHODS: Using PRISMA Guidelines, 14 researchers carried out independent searches of PubMed, CINAHL, PsycINFO, Cochrane Library and gray literature databases for articles published between 2000 to 2019. Concurrent and independent employment of content and thematic analysis (Split Approach) was used to enhance the trustworthiness of the analysis.
RESULTS: 13,424 titles and abstracts were retrieved, 188 full texts were evaluated, and 39 articles were included and analyzed. Identical categories and themes identified using the Split Approach suggest that caring for dying children in PPC impacts the physician's professional identity, clinical decision making, personal well-being and relationships. The data also suggests that the magnitude of these effects depends on the presence of protective and risk factors.
CONCLUSION: Aside from providing a novel insight into the upon the physician, this review proffers a unique approach to accounting for the presence, magnitude and influence of incoming catalysts, resultant conflicts, and protective and risk factors upon the physician's personhood. Further studies into the changes in personhood are required. Design of a personalized assessment tool based on the RToP will help direct timely, appropriate and personalized support to these physicians.
BACKGROUND: Increasing age is accompanied by a greater need for medical decisions, due in part to age-related increases in chronic disease and disability. In later life, medical decisions about end-of-life care in particular are likely. However, a significant percentage of these decisions are made by surrogate decision-makers. "Surrogates" are most often instructed to use the substituted judgment standard and make decisions that patients would choose if they were able. Whether surrogates make decisions that adequately match patients' preferences is a concern. Surrogates are generally poor predictors of patient preferences (Shalowitz et al., 2006). However, no critical review of this literature has yet been published.
METHOD: A critical review was conducted to summarise and provide a methodological critique of 25 studies.
RESULTS: These studies generally concur that patient-surrogate agreement on medical decisions is poor. However, this conclusion is qualified by inconsistencies in methodological quality and the potentially limited generalisability of these findings.
CONCLUSIONS: Clinical research incorporating standardised hypothetical decision-making protocols, as well as triangulated data collection methods, would bolster confidence in future findings. Investigations prioritising the surrogate decision-making process, rather than solely the decisional outcome, could better identify ways to improve the decision-making process for incapacitated patients.
OBJECTIVE: This review will explore definitions of early palliative care and describe how it has been implemented for those diagnosed with a life-limiting chronic illness.
INTRODUCTION: People with life-limiting chronic illnesses who receive palliative care interventions have increased quality of life, better symptom management, and are more likely to have advance care plans than patients who do not. It is therefore best practice to encourage early identification of those in need of palliative care services. However, there is uncertainty over what is considered to be "early palliative care" and this presents a barrier to evaluating outcomes associated with it.
INCLUSION CRITERIA: All literature that defines an early palliative care approach in adults (aged 18+) with a life-limiting chronic illness will be included in this review.
METHODS: This scoping review will be completed using the JBI scoping review methodology. A comprehensive search of academic and gray literature using MEDLINE (Ovid), CINAHL (EBSCO), Embase (Ovid), PsycINFO (Ovid), Web of Science Core Collection, Ovid Cochrane Library, and ProQuest (Health and Medicine and Sociology Collections) will be utilized. Once screened by two reviewers, results will be extracted using a customized tool and summarized into a final report using a narrative synthesis presented in table form.
Globally, the number of older people requiring appropriate and safe management of medicines is growing. This review aimed to identify the roles and responsibilities of pharmacists supporting older people living in a community setting with their palliative care needs and to synthesise key themes emerging from the data, as well as any gaps in knowledge. The literature search included Medline (Ovid), Scopus, and Cinahl (Ebsco) databases. An English language limit was applied. The search included all international articles and any date of publication. Data were synthesised utilizing a systematic text condensation technique and presented according to Theme, Domain, and Meaning Units. Fourteen studies met the inclusion criteria. Selected papers predominantly focused on care provided by the pharmacists supporting people receiving residential aged care services. Clinical review, supply of medicines, and clinical governance were identified as key pharmacist roles. Pharmacists' communication skills, personal behavioural approach, and positive attitude emerged as supportive characteristics for effective person-centered care. Minimal, or no information, were available related to pharmacists located in general medical practices and in Aboriginal health services sector, respectively. The multifaceted role of pharmacists presents an opportunity to provide comprehensive health care for older populations at the end of their life.
OBJECTIVE: Our aim was to synthesise the available evidence surrounding the structure, processes and outcomes of family meetings in the paediatric palliative care literature.
METHODS: We undertook an integrative literature review informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The protocol was registered with PROSPERO (CRD42019138938). Electronic databases were systematically search using keywords and hand searching of reference articles and grey literature was also completed.
RESULTS: Ten empirical studies and five theoretical articles were included in the synthesis. Empirical studies provided more information about meeting structure, whereas theoretical articles more frequently described a desired process for planning and undertaking meetings. No articles identified how the success of a meeting was defined or made recommendations for doing so. Despite reports that family meetings are commonly occurring, few articles described outcomes from either the family or clinician perspectives.
CONCLUSIONS: Family meetings are essential communication strategies commonly used in paediatric palliative care, yet there is little guidance about how meetings should be organised and conducted, who should participate and when they should occur. The limited data available on the outcomes of family meetings suggest improvements are required to meet the needs of families. We present a framework that synthesises the available evidence. The framework offers an overview of the elements to consider when planning for and undertaking family meetings in paediatric palliative care and may be useful for both clinicians and researchers.
AIM(S): A review of the global literature on the implementation of Advanced Healthcare Directives to date, and of the experiences of the healthcare professionals who must initiate the discussions around advance care planning, as well as support patients' ultimate decisions.
BACKGROUND: Ireland's Assisted Decision-Making (Capacity) Act 2015 legalises Advance Healthcare Directives. It promotes the autonomy of the person and enables them to have treatment in accordance with their will and preferences. However, there is professional uncertainty on how to support and integrate assisted decision-making.
EVALUATION: 16 studies featuring the views of healthcare professionals are included and evaluated using a framework of 'benefits versus challenges'.
KEY ISSUE(S): Four themes clearly emerge during the review process: the concept of capacity and who decides; autonomy vs paternalism - conflict among the healthcare professional/patient/family-carer triad; barriers to advance directives; and timing issues.
CONCLUSION(S): Significant benefits of advance healthcare directives exist for all parties including less stress for patients and families alike, less burden and less residual guilt for surviving relatives, and an over-arching prevention of 'crisis' decision-making.
IMPLICATIONS FOR NURSING MANAGEMENT: This review highlights the central role of the nurse in empowering patients to express their wills and preferences, supporting patients' capacity to make decisions about their own care, initiating end-of-life care discussions and advocating to have advance healthcare directives acknowledged. Moreover, it identifies the challenges ahead for all nurse managers in implementing this new mandate.
Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.
Background: The medical profession increasingly recognizes the growing need to educate nonpalliative physicians in palliative care.
Objective: This study aims to provide a scoping review of the primary palliative care (PPC) education currently available to graduate medical trainees in primary and specialty tracks.
Design: Studies of PPC interventions in U.S. residency or fellowship programs of all subspecialties published in English and listed on MEDLINE, CINAHL, and EMBASE through January 2020 were included. To meet admission criteria, studies had to describe the content, delivery methods, and evaluation instruments of a PPC educational intervention.
Results: Of 233 eligible full texts, 85 studies were included for assessment, of which 66 were novel PPC educational interventions and 19 were standard education. Total number of publications evaluating PPC education increased from 8 (2000-2004) to 36 (2015-2019), across 11 residency and 10 fellowship specialties. Residency specialties representing the majority of publications were emergency medicine, general surgery, internal medicine, and pediatric/medicine-pediatrics. PPC content domains most taught in residencies were communication and symptom management; the primary delivery method was didactics, and the outcome assessed was attitudes. Fellowship specialties representing the majority of publications were pediatric subspecialties, nephrology, and oncology. The PPC content domain most taught in fellowships was communication; the primary delivery method was didactics and the outcome evaluated was attitudes.
Conclusions: While PPC education has increased, it remains varied in content, delivery method, and intervention evaluations. Future studies should include more widespread evaluation of behavioral outcomes, longitudinal persistence of use, and clinical impact.
OBJECTIVES: The purpose of this study is to map the characteristics of the existing medical literature describing the medications, settings, participants and outcomes of medical assistance in dying (MAID) in order to identify knowledge gaps and areas for future research.
DESIGN: Scoping review.
SEARCH STRATEGY: We searched electronic databases (MEDLINE, EMBASE, PsychINFO, CINAHL and CENTRAL), clinical trial registries, conference abstracts and professional guidelines from jurisdictions where MAID is legal, up to February 2020. Eligible report types included technical summaries, institutional policies, practice surveys, practice guidelines and clinical studies that describe MAID provision in adults who have provided informed consent for MAID.
RESULTS: 163 articles published between 1989 and 2020 met eligibility criteria. 75 studies described details for MAID administered by intravenous medications and 50 studies provided data on oral medications. In intravenous protocols, MAID was most commonly administered using a barbiturate (34/163) or propofol (22/163) followed by a neuromuscular blocker. Oral protocols most often used barbiturates alone (37/163) or in conjunction with an opioid medication (7/163) and often recommended using a prokinetic agent prior to lethal drug ingestion. Complications included prolonged duration of the dying process, difficulty in obtaining intravenous access and difficulty in swallowing oral agents. Most commonly, the role of physicians was prescribing (83/163) and administering medications (75/163). Nurses' roles included administering medications (17/163) and supporting the patient (16/163) or family (13/163). The role of families involved providing support to the patient (17/163) and bringing medications from the pharmacy for self-administration (4/163).
CONCLUSIONS: We identified several trends in MAID provision including common medications and doses for oral and parenteral administration, roles of healthcare professionals and families, and complications that may cause patient, family and provider distress. Future research should aim to identify the medications, dosages, and administration techniques and procedures that produce the most predictable outcomes and mitigate distress for those involved.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
OBJECTIVE: to map the available evidence on the main topics investigated in palliative care in primary health care.
METHOD: scoping review type study carried out in five databases, including original articles, based on the descriptors palliative care, palliative care at the end of life, terminal care, terminal state, primary health care and their respective acronyms and synonyms, totaling 18 publications. The extraction of data from primary studies was performed using an instrument produced by the authors and which allowed the construction of the categories presented.
RESULTS: 18 publications were included in this review. Among the most studied themes are the difficulties of the teams regarding the continuity of care in the health network; the importance of in-service education by the multidisciplinary team; professional unpreparedness; bioethics; the validation and application of scales for prognosis and care for some pathologies such as cancer and diabetes; among others.
CONCLUSION: it became evident that palliative care in primary health care has been gradually developed, but it is necessary to consider the organization of primary health care and the social policies that support or weaken it, being considered a complex challenge.
Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use.
Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging.
Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020.
Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included.
Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions.
Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19.
Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.
Background: The use of continuous sedation until death (CSD) has been highly debated for many years. It is unknown how the use of CSD evolves over time. Reports suggest that there is an international increase in the use of CSD for terminally ill patients.
Objective: To gain insight in developments in the use of CSD in various countries and subpopulations.
Design: We performed a search of the literature published between January 2000 and April 2020, in Pubmed, Embase, CINAHL, Psycinfo and the Cochrane Library by using the PRISMA guidelines. The search contained the following terms: continuous sedation, terminal sedation, palliative sedation, deep sedation, end-of-life sedation, sedation practice, and sedation until death.
Results: We found 23 articles on 16 nationwide studies and 38 articles on 37 subpopulation studies. In nationwide studies on deceased persons frequencies of CSD varied from 3% in Denmark in 2001 to 18% in the Netherlands in 2015. Nationwide studies indicate an increase in the use of CSD. Frequencies of CSD in the different subpopulations varied too widely to observe time trends. Over the years more studies reported on the use of CSD for non-physical symptoms including fear, anxiety, and psycho-existential distress. In some studies, there was an increase in requests for sedation of patients and their families.
Conclusions: The frequency of CSD seems to increase over time possibly partly due to an extension of indications for sedation, from mainly physical symptoms to also non-physical symptoms.