Contexte : si la sédation est une pratique importante dans le contexte des soins palliatifs, elle manque d’une précision terminologique et conceptuelle, au plan international ou francophone.
Introduction : bien que nombreuses et considérées comme des textes de référence, les recommandations francophones relatives à la sédation palliative chez l’adulte n’ont jamais fait l’objet d’une analyse linguistique. Objectifs : l’objectif de notre étude était d’explorer et d’analyser les dénominations de la sédation et leurs significations dans les documents belges, français, québécois et suisses.
Méthodes : les recommandations en vigueur ont été soumises à une analyse de contenu de trois niveaux : textuel, terminologique et conceptuel.
Résultats : dans les recommandations belges, québécoises et suisses, le même terme était utilisé pour nommer la sédation, sans qu’il soit conceptualisé de manière homogène. A contrario, dans les documents français, malgré un foisonnement terminologique, les définitions étaient assez similaires sans pour autant être identiques. Des spécificités culturelles, en lien avec la législation en matière de fin de vie de chacun de ces pays, ont été identifiées comme potentiel facteur causal.
Discussion et conclusion : la diversité des dénominations et des significations renforce inévitablement l’imprécision de la langue médicale, et de la terminologie en particulier. Cette dernière est susceptible d’impacter négativement la communication entre les professionnels de santé, les patients et leurs proches. Des tentatives d’homogénéisation devraient être entreprises.
BACKGROUND/AIMS: Serious adverse event reporting guidelines have largely been developed for pharmaceutical trials. There is evidence that serious adverse events, such as psychological distress, can also occur in non-pharmaceutical trials. Managing serious adverse event reporting and monitoring in palliative care non-pharmaceutical trials can be particularly challenging. This is because patients living with advanced malignant or non-malignant disease have a high risk of hospitalisation and/or death as a result of progression of their disease rather than due to the trial intervention or procedures. This paper presents a number of recommendations for managing serious adverse event reporting that are drawn from two palliative care non-pharmacological trials.
METHODS: The recommendations were iteratively developed across a number of exemplar trials. This included examining national and international safety reporting guidance, reviewing serious adverse event reporting procedures from other pharmacological and non-pharmacological trials, a review of the literature and collaboration between the ACTION study team and Data Safety Monitoring Committee. These two groups included expertise in oncology, palliative care, statistics and medical ethics and this collaboration led to the development of serious adverse event reporting procedures.
RESULTS: The recommendations included; allowing adequate time at the study planning stage to develop serious adverse event reporting procedures, especially in multi-national studies or research naïve settings; reviewing the level of trial oversight required; defining what a serious adverse event is in your trial based on your study population; development and implementation of standard operating procedures and training; refining the reporting procedures during the trial if necessary and publishing serious adverse events in findings papers.
CONCLUSIONS: There is a need for researchers to share their experiences of managing this challenging aspect of trial conduct. This will ensure that the processes for managing serious adverse event reporting are continually refined and improved so optimising patient safety.
TRIAL REGISTRATION: ACTION trial registration number: ISRCTN63110516 (date of registration 03/10/2014). Namaste trial registration number: ISRCTN14948133 (date of registration 04/10/2017).
OBJECTIVES: Development of evidence-based good practice recommendations for clinicians considering the use of antibiotics in patients towards the end of life.
DESIGN: A multiprofessional group of experts in end-of-life care and antimicrobial stewardship was convened. Findings from a scoping review of the literature and a consultation of clinicians were triangulated. Expert discussion was used to generate consensus on how to approach decision-making.
SETTING: Representatives from hospital and a range of community health and care settings.
PARTICIPANTS: Medical, pharmacy and nursing professionals.
MAIN OUTCOME MEASURES: Good practice recommendations based on published evidence and the experience of prescribers in Scotland.
RESULTS: The findings of 88 uncontrolled, observational studies of variable quality were considered alongside a survey of over 200 prescribers. No national or international guidelines were identified. Antibiotic use towards the end of life was common but practice was highly variable. The potential harms associated with giving antibiotics tended to be less well considered than the potential benefits. Antibiotics often extended the length of time to death but this was sometimes at the cost of higher symptom burden. There was strong consensus around the importance of effective communication with patients and their families and making treatment decisions aligned to a patient's goals and priorities.
CONCLUSIONS: Good practice recommendations were agreed with focus on three areas: making shared decisions about future care; agreeing clear goals and limits of therapy; reviewing all antibiotic prescribing decisions regularly. These will be disseminated widely to support optimal care for patients towards the end of life. A patient version of the recommendations has also been produced to support implementation.
Introduction: De nombreuses recommandations de bonnes pratiques professionnelles en matière de sédation palliative ont été émises. Mais, à ce jour, les études portant sur les recommandations en français font défaut, malgré des positionnements spécifiques de certains pays francophones en matière de fin de vie. L’objectif de cette étude était de recenser les recommandations professionnelles relatives à la sédation palliative chez l’adulte dans les pays francophones dans une approche à la fois synchronique et diachronique (recommandations en vigueur et celles devenues caduques).
Méthodes: Les recommandations publiées en français à partir de 2000 ont été recherchées via des bases de données. En complément, des experts en soins palliatifs dans des pays francophones ont été contactés. Toutes les recommandations identifiées ont fait l’objet d’une analyse du contenu.
Résultats: Sur 18 pays francophones inclus, 21 recommandations ont été recensées (dont 14 en vigueur) dans quatre pays : Belgique, Canada (Québec), France et Suisse. Aucune recommandation n’a été identifiée dans les pays du continent africain. Les recommandations sont apparues très hétérogènes tant sur la forme (allant de simples propositions à des recommandations formelles) que sur le fond (différents types de sédation).
Discussion et conclusion: Le nombre et le volume des recommandations, et surtout l’hétérogénéité de la terminologie utilisée, ont rendu très délicate méthodologiquement une analyse du contenu ; une telle analyse doit être réalisée dans une approche synchronique, uniquement, et focalisée sur un élément précis d’un type de sédation.
This study assessed Australian clinical practice guidelines for life-limiting index conditions for the extent to which they acknowledged comorbidities and framed management recommendations within the context of older age and reduced life expectancy. A comprehensive search identified current, evidence-based Australian guidelines for chronic life-limiting conditions directed at general practitioners. Guideline content was analysed qualitatively before comorbidity acknowledgements were quantified using a 17-item checklist. Full guidelines were quality appraised using AGREE-II. Ten documents covering chronic obstructive pulmonary disease, heart failure, cancer pain, dementia and palliative care in aged care were identified. Most guidelines addressed one ‘comorbid’ condition and prompted clinicians to consider patient quality of life and personal preferences. Fewer addressed burden of treatment and half suggested modifying treatments to account for limited life expectancy, age or time horizon to benefit. Half warned of potential adverse drug interactions. Guidelines were of moderate to very high quality. Guidelines naturally prioritised their index condition, directing attention to only the most common comorbidities. However, there may be scope to include more condition-agnostic guidance on multimorbidity management. This might be modelled on the ‘guiding principles’ approach now emerging internationally from organisations such as the American Geriatrics Society in response to increasing multimorbidity prevalence and evidence limitations.
BACKGROUND: Desire to die, understood as a broad phenomenon, is common in patients receiving palliative care. Euthanasia ("termination of life on request", §216 German Criminal Code) is currently forbidden in Germany, the legal restrictions with regard to assisted suicide ("assistance of suicide with intent of repeated conduct", §217 German Criminal Code) has recently been repealed by the national Federal Constitutional Court. This dynamically changing legal situation adds to health professionals reported uncertainty in dealing appropriately with a desire to die.
METHODS: As part of the new extended version of the German Palliative Care Guideline for Patients with Incurable Cancer, evidence and consensus-based statements and recommendations on desire to die were developed by an interdisciplinary and multi-professional working group. The best available evidence was identified through systematic literature searches and by asking experts for further known quantitative as well as qualitative literature. Included publications were assessed as recommended by the Scottish Intercollegiate Guidelines Network (SIGN). Due to the limited availability of high-quality empirical publications related to desire to die, close attention was paid to national clinical expertise to develop recommendations. Consensus for these recommendations was reached at a conference of the guideline group consisting of elected representatives from 61 professional societies and patient associations. Each recommendation was approved by at least 75% of those present.
RESULTS: The expert panel developed and agreed on 21 statements and recommendations on desire to die and related phenomena. A descriptive definition was agreed upon of desire to die as a complex phenomenon with individual causes, manifestations, and consequences. The potential background of desire to die, its meanings, functions and possible interventions are described. The guideline recommends proactively addressing and exploring a potential desire to die as the intervention that should be considered before all others, because evidence from studies on suicidality found no negative effect when asking study participants about suicidality.
CONCLUSIONS: The guideline informs health professionals working within the German statutory framework, how to care for and communicate with patients who are receiving palliative care and who express a desire to die.
Since it was proposed in 1980, the Uniform Determination of Death Act has provided the legal basis for determination of death by neurological criteria. The act contains language that allows for acceptable medical standards to be used to determine death. Since 1995, the American Academy of Neurology has provided guidelines for brain death determination (revised in 2010), but nationwide adherence to these guidelines has been incomplete. This variability could lead to misdiagnosis and erosion of public trust in this important medical practice. Physicians must work together as a profession to push for uniformity and accuracy in death diagnosis.
BACKGROUND/AIM: The study aimed to evaluate practice changes in the time period of the early wave of the COVID-19 pandemic.
PATIENTS AND METHODS: This was a retrospective single institution study. We defined palliative radiotherapy (PRT) initiated before Saturday, March 14th as pre-COVID and PRT initiated later as during-COVID (through June 30th).
RESULTS: National COVID-19 recommendations led to a significant decrease in PRT with 10 or more fractions, while re-irradiation and radiotherapy during the final 30 days of life were equally common before and after these recommendations had been issued in March 2020.
CONCLUSION: Rapid adoption of modified PRT regimens was feasible. However, the challenge of overtreatment in the final phase of the disease, due to inaccurate survival prediction, persisted.
BACKGROUND: Palliative care improves the quality of lives of patients and families affected by advanced illnesses through the prevention and relief of suffering. While palliative care is well established in developed countries, it is inadequate or non-existent in most developing countries. Palliative care is an emerging concept in Bhutan, a tiny Himalayan Kingdom. A small community palliative care service is available in the national referral hospital with three dedicated inpatient palliative care beds. This study explored the needs for palliative care among patients diagnosed with advanced illnesses and is a component of a larger project aimed to inform a suitable palliative care model for the country.
METHODS: This is a cross-sectional descriptive study. A survey, using a structured questionnaire including the EORTC QLQ-C30, was carried out among patients with advanced illness in hospitals, primary care units and communities across the country. Purposeful and snowball sampling strategies were used to recruit study participants.
RESULTS: Seventy (76%), out of 93 eligible patients, agreed to participate in the survey. Participants reported low to moderate scores on physical, role, emotional, cognitive and social functioning, a moderate score for the global health/ quality of life scale and moderately high (worse) scores in symptoms including fatigue, pain, insomnia, loss of appetite and the financial impact from the disease.
CONCLUSIONS: The symptom burden experienced by patients affected by advanced illnesses demonstrates the need for palliative care in Bhutan. These findings will help inform the development of a public health-focused palliative care model, modified to the Bhutanese context, as recommended by the World Health Organization.
General practitioners (GPs) are increasingly expected to provide palliative care as ageing populations put pressure on specialist services. Some GPs, however, cite barriers to providing this care including prognostication challenges and lack of confidence. Palliative care content within clinical practice guidelines might serve as an opportunistic source of informational support to GPs. This review analysed palliative care content within Australian guidelines for life-limiting conditions to determine the extent to which it might satisfy GPs' stated information needs and support them to provide quality end-of-life care. Six databases and guideline repositories were searched (2011-2018). Eligible guidelines were those for a GP audience and explicitly based on an appraisal of all available evidence. Content was mapped against an established palliative care domain framework (PEPSI-COLA) and quality was assessed using AGREE-II. The nine guidelines meeting inclusion criteria were heterogenous in scope and depth of palliative care domain coverage. The 'communication' needs domain was best addressed while patient physical and emotional needs were variably covered. Spiritual, out-of-hours, terminal care and aftercare content was scant. Few guidelines addressed areas GPs are known to find challenging or acknowledged useful decision-support tools. A template covering important domains might reduce content variability across guidelines.
Purpose of review: The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles.
Recent findings: PnPC is a new concept in neonatal intensive care approach. Advancements in perinatal diagnostics and medical technology have changed the landscape of the perinatal world. The threshold of viability continues to decrease, and diagnostic information is available earlier in pregnancy and more rapidly at the bedside; overall outcomes continue to improve. This rapid technological improvement brings ethical debates on the quality of life of patients with life-limiting and life-threatening conditions and the need to involve the family in the decision-making process, according to their wishes and cultural beliefs. Although the Perinatal Hospice concept was developed in the 1980s in the US, the first recommendations on how to develop a PnPC pathway were published in the early 2000s. We considered the most relevant position statements or guidelines on PnPC published in the last two decades. Some of them were more pertinent to pediatrics but still useful for the fundamental concepts and PnPC project's development.
Summary: Health care providers and institutions are encouraged to develop PnPC programs, which have the goal of maximizing the quality of life of infants with non-curable conditions. These may generally include the following: a formal prenatal consultation; development of a coordinated birth plan between obstetrician, newborn care, and family; access to other neonatal and pediatric specialties, as needed; comfort palliative care during the prenatal, birth, and postnatal periods; and psychosocial and spiritual support for families, siblings, and staff.
Hip fractures are common in patients with advanced dementia, and many experts advocate that they be considered a sentinel "palliative" event due to their strong association with reductions in quality of life and one-year survival. Management decisions are often complicated due to the need for quick decisions by surrogates, involving multiple surgical and nonsurgical options, often done in the context of uncertain prognosis. This Fast Fact reviews important considerations and practical recommendations about hip fracture management in patients with advanced dementia.
The following self-analysis contains key experiences of maternal grief over the course of the first 2 years following the death of a child, with specific examples and observations from bereaved mothers shared with the author. The references provide supporting evidence for commonality of the lived experience and observations. Therapeutic responses for clinicians give concrete direction for providing effective comfort. Self-care suggestions for mothers provide specific guidance for the readers. A 14-year retrospective epilogue puts the charged emotional description into a context of healing.
A palliative approach to care focuses on what matters most to patients with life-limiting illness, including chronic kidney disease (CKD). Despite recent publication of related clinical practice guidelines in nephrology, there is limited information about how to practically implement these recommendations. In this Perspective, we describe our experience integrating a palliative approach within routine care of patients with CKD G4-G5 across a provincial kidney care network over the past 15 years. The effort was led by a multidisciplinary group, tasked with building capacity and developing tools and resources for practical integration within a provincial network structure. We used an evidence-based framework that includes recommendations for four pillars of palliative care to guide our work: 1) patient identification, 2) advance care planning, 3) symptom assessment & management, and 4) caring of the dying patient & bereavement. Activities within each pillar have been iteratively implemented across all kidney care programs using existing committees and organizational structures. Key quality indicators were used to guide strategic planning and improvement. We supported culture change through use of multiple strategies simultaneously. Altogether, we established and integrated palliative care activities into routine CKD G4-G5 care, across the continuum from non-dialysis to dialysis populations.
On 2 January 2020, Singapore implemented preventive measures to minimise importation of COVID-19 cases after China reported its first case to the World Health Organisation on 31 December 2019, in what was to become a global pandemic. After confirming its first local case of COVID-19 on 23 January 2020, Singapore has adopted increasingly stringent containment measures, moving into mitigation mode when the number of cases escalated. Local hospitals have also instituted progressively stricter restrictions on visitation hours and the number of visitors. As of 28 May 2020, there were 33,249 confirmed cases of COVID-19, with 14,925 cases under observation, 18,294 cases discharged, 7 patients in critical condition and 23 deaths attributed to COVID-19.
PURPOSE: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era.
PRIMARY PRACTICE SETTING(S): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care.
FINDINGS/CONCLUSIONS: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: .
BACKGROUND: Treatment options for childhood cancer have improved substantially, although in many low- and middle-income countries survival is lagging behind. Integral childhood cancer care involves the whole spectrum from detection and diagnosis to palliative and survivorship care.
METHODS: Based on a literature review and expert opinions, we summarized current practice and recommendations on the following aspects of childhood cancer in Latin America: diagnostic processes and time to diagnosis, stage at diagnosis, treatments and complications, survivorship programs and palliative care and end-of-life services.
RESULTS: Latin America is a huge and heterogeneous continent. Identified barriers show similar problems between countries, both logistically (time and distance to centers, treatment interruptions) and financially (cost of care, cost of absence from work). Governmental actions in several countries improved the survival of children with cancer, but difficulties persist in timely diagnosis and providing adequate treatment to all childhood cancer patients in institutions with complete infrastructure. Treatment abandonment is still common, although the situation is improving. Cancer care in the region has mostly focused on acute treatment of the disease and has not adequately considered palliative and end-of-life care and monitoring of survivors.
CONCLUSIONS: Decentralizing diagnostic activities and centralizing specialized treatment will remain necessary; measures to facilitate logistics and costs of transportation of the child and caretakers should be implemented. Twinning actions with specialized centers in high income countries for help in diagnosis, treatment and education of professionals and family members have been shown to work. Palliative and end-of-life care as well as childhood cancer survivorship plans are needed.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
On March 11, 2020 the World Health Organization classified COVID-19, caused by Sars-CoV-2, as a pandemic. Although not much was known about the new virus, the first outbreaks in China and Italy showed that potentially a large number of people worldwide could fall critically ill in a short period of time. A shortage of ventilators and intensive care resources was expected in many countries, leading to concerns about restrictions of medical care and preventable deaths. In order to be prepared for this challenging situation, national triage guidance has been developed or adapted from former influenza pandemic guidelines in an increasing number of countries over the past few months. In this article, we provide a comparative analysis of triage recommendations from selected national and international professional societies, including Australia/New Zealand, Belgium, Canada, Germany, Great Britain, Italy, Pakistan, South Africa, Switzerland, the United States, and the International Society of Critical Care Medicine. We describe areas of consensus, including the importance of prognosis, patient will, transparency of the decision-making process, and psychosocial support for staff, as well as the role of justice and benefit maximization as core principles. We then probe areas of disagreement, such as the role of survival versus outcome, long-term versus short-term prognosis, the use of age and comorbidities as triage criteria, priority groups and potential tiebreakers such as 'lottery' or 'first come, first served'. Having explored a number of tensions in current guidance, we conclude with a suggestion for framework conditions that are clear, consistent and implementable. This analysis is intended to advance the ongoing debate regarding the fair allocation of limited resources and may be relevant for future policy-making.
The Japan Geriatrics Society has so far announced "The Japan Geriatrics Society Position Statement 2012" and "Guidelines for the Decision-Making Processes in Medical and Long-Term Care for the Elderly - Focusing on the Use of Artificial Hydration and Nutrition" related to end-of-life care for older adults. In 2018, the Ministry of Health, Labor and Welfare revised the "Guidelines for the Decision-Making Processes in Medical and Long-Term Care in the End of Life," recommending the practice of advance care planning (ACP). This was the first time when the Japanese government publicized its stance on ACP. Immediately after the government's announcement, the Japan Medical Association announced its committee report, "The Super-aged Society and the End-of-life Care," which also recommended the practice of ACP. The guidelines were published when the society was experiencing substantial changes related to geriatric care in Japan, and required timely and ethically appropriate decision-making processes. However, because ACP is a concept imported from English-speaking countries, some Japanese people could find it difficult to understand the role and methodology of ACP because of differences in culture and the medical/long-term care system. Therefore, the Japan Geriatrics Society has decided to publish the "Recommendations for the Promotion of Advance Care Planning" for medical and long-term care professionals nationwide with the aim of using the recommendations on a daily basis. The society recognizes ACP as indispensable to improve end-of-life care for individuals, particularly for older adults. We anticipate that the recommendations will provide practical guidance for those strenuously working toward this goal.