This issue of Medical Clinics, guest edited by Dr. Eric Widera, is devoted to Palliative Care. Articles in this important issue include: Hospice and palliative care: an overview; Goals of care conversations in palliative care: A practical guide; The art and science of prognostication in palliative care; Recognizing and managing polypharmacy in advanced illness; Pain management in those with serious illness; Management of grief, depression, and suicidal thoughts in those with serious illness; Management of respiratory symptoms in those with serious illness; Management of gastrointestinal symptoms inadvanced illness; Management of urgent medical conditions at the end of life; Delirium at the end of life; Options of last resort: palliative sedation, Physician aid in dying and voluntary cessation of eating and drinking; Cannabis for symptom management; and Self-care of physicians caring for patients with serious illness.
OBJECTIVES: To describe the clinical management of palliative sedation and the characteristics of sedated patients in 11 Catalan hospital emergency departments.
MATERIAL AND METHODS: Prospective descriptive study of a cohort of patients given palliative sedation between April and July 2018. We registered patient demographic and disease data, the Charlson comorbidity index (CCI), patient's point of origin before emergency department arrival, times related to emergency care, and medications used.
RESULTS: We included 323 patients (48.9% men) with a mean (SD) age of 84 (12) years. The CCIs were significantly higher in patients attended in level-I hospitals. Palliative sedation was the first option in 27% and was initiated within 18 (28) hours of arrival on average, an interval that was significantly shorter in level-II hospitals. Most patients (74.2%) died in the emergency department.
CONCLUSION: Patients treated with palliative sedation in hospital emergency departments are older and have serious concomitant conditions. Most patients are first treated with intention to cure. Time until the start of palliative sedation differs significantly according to hospital level.
CONTEXT: Palliative sedation is used to relieve end-of-life refractory symptoms.
OBJECTIVE: The objective of this study was to describe the use of palliative sedation in patients who die in internal medicine departments.
METHODS: An observational, cross-sectional, retrospective, and multicenter clinical audit study was conducted in 145 hospitals in Spain and Argentina. Each hospital included the first 10 patients who died in the internal medicine department, starting on December 1, 2015.
RESULTS: We included 1447 patients, and palliative sedation was administered to 701 patients (48.4%). Having a terminal illness (odds ratio [OR] 2.469, 95% CI 1.971-3.093, P < 0.001) and the length of hospital stay (OR 1.011, 95% CI 1.002-1.021, P = 0.017) were independently associated with the use of palliative sedation. Consent was granted by the families of 582 (83%) patients. The most common refractory symptom was dyspnea, and the most commonly used drugs for sedation were midazolam (77%) and morphine (89.7%). An induction dose was administered in 25.7% of the patients. Rescue doses were scheduled for 70% of the patients, and hydration was maintained in 49.5%. Pain was more common in patients with cancer, whereas dyspnea was more common in those without cancer. Rescue doses were used more often for the patients with cancer (77.8% vs. 67.7%, P = 0.015). Monitoring the palliative sedation with a scale was more frequent in the patients with cancer (23.7% vs. 14.3%, P = 0.008).
CONCLUSIONS: Palliative sedation is used more often for terminal patients. There are differences in the administration of palliative sedation between patients with and without cancer.
As patients approach the end of life, they often experience a range of distressing symptoms and concerns such as pain, delirium, and breathlessness. Although most symptoms and concerns are amendable to pharmacological and/or nonpharmacological interventions, there may be some symptoms that are very difficult or impossible to treat or where available treatment options fail. These are called refractory symptoms because treatment (1) does not work, (2) the effects take too long to happen, or (3) the side effects are not acceptable to the patient. Refractory symptoms are not restricted to physical symptoms and, therefore, a multidimensional approach is needed to fully assess and manage the patient's condition. For example, existential suffering may be adding to the patient's physical suffering but can be particularly difficult to assess and manage. For this reason, the term intractable suffering is sometimes used. When conventional treatment options are no longer available and symptoms are considered refractory, the option of palliative sedation comes to the fore.
Ces recommandations de la Haute Autorité de Santé ont pour objectifs de mieux définir les modalités d'utilisation des traitements médicamenteux, en particulier hors AMM, en situation palliative et phase terminale chez l'adulte :
- pour l'antalgie des douleurs rebelles ou la prévention des douleurs rebelles provoquées ;
- pour la sédation, qu'elle soit proportionnée ou profonde et continue maintenue jusqu'au décès ;
- y compris, le cas échéant, les modalités spécifiques au domicile.
[Extrait du document]
PURPOSE: There have been few studies on the limitation of Life Supporting Care (LSC) and Withdrawal of LSC in Intermediate Care Units (IMCUs). We report the prevalence of LSC limited patients in a medico-surgical IMCU over a six-month period, examining the description, outcomes, and patterns of LSC Limitations and Withdrawal of LSC.
METHODS: Single center, retrospective observational study in an IMCU of a 500-bed general hospital.
RESULTS: Our study of 404 patients, reported 79 (19.5%, 95%CI: [16.0-23.7]%) being admitted with LSC limitations in the IMCU. This group of LSC limited patients presented with higher chronic and acute severity scores. The most common admission diagnosis of LSC limited patients was acute respiratory failure (51%). Non-invasive ventilation (NIV) was frequently used within this population (39%). Hospital mortality for LSC limited patients was high (53%) and associated with age (OR = 1.07, 95%CI: [1.01-1.13)]), SOFA score (OR 1.29, 95%CI: [1.01-1.64]), and hypoxemic respiratory failure (OR 7.2, 95%CI: [1.27-40.9]). Withdrawal of LSC occurred in 19.5% of cases, often accompanied with terminal sedation with or without NIV removal (43.8%).
CONCLUSIONS: Patients with limitation of LSC are frequently admitted into IMCU. Hospital mortality rate was high and associated with age, acute organ failures, and hypoxemic respiratory failure. Life support withdrawal includes palliative sedation with or without NIV discontinuation.
Medical assistance in dying (MAiD) and palliative sedation (PS) are both legal options in Canada that may be considered by patients experiencing intolerable and unmanageable suffering. A contentious, lively debate has been ongoing in the literature regarding the similarities and differences between MAiD and PS. The aim of this paper is to explore the propositions that MAiD and PS are essentially similar and conversely that MAiD and PS are distinctly different. The relevance of such a debate is apparent for clinicians and patients alike. Understanding the complex and multi-faceted nuances between PS and MAiD allows patients and caregivers to make more informed decisions pertaining to end-of-life care. It is hoped that this paper will also serve to foster further debate and consideration of the issues associated with PS and MAiD with a view to improve patient care and the quality of both living and dying in Canada.
OBJECTIVES: Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument.
METHODS: Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016.
RESULTS: Of 264 hits, 13 guidelines-Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended 'pre-emptive discussion of the potential role of sedation in end-of-life care'; 9 recommended 'nutrition/hydration while performing sedation' and 8 acknowledged the need to 'care for the medical team'. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations.
CONCLUSIONS: Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains 'scope and purpose' and 'editorial independence' ranked highest and lowest, respectively-underscoring the importance of good reportage at the developmental stage.
My essay 'Weakening the ethical distinction between euthanasia, palliative opioid use and palliative sedation' has recently generated some critique which I will attempt to address in this response. Regarding the empirical question of whether palliative opioid and sedative use shorten survival time, Schofield et al raise the three concerns that my literature review contains a cherry-picking bias through focusing solely on the palliative care population, that continuous deep palliative sedation falls beyond the scope of routine palliative care, and that my research may contribute to opiophobia and be harmful to palliative care provision globally. Materstvedt argues that euthanasia 'ends' rather than 'relieves' suffering and is not a treatment, and that the arguments in my essay are therefore predicated on a 'category mistake' and are a non-starter. Symons and Giebel both raise the concern that my Kantian and Millian interpretation of the Doctrine of Double Effect is anachronistic, and that when interpreted from the contemporaneous perspective of Aquinas it is a sound ethical principle. Giebel also argues that palliative opioid and sedative use do meet the Doctrine of Double Effect's four criteria on this Thomistic account, and that it does not contradict the Doctrine of the Sanctity of Human Life. In this response I will explore and defend against most of these claims, in doing so clarifying my original argument that the empirical and ethical differences between palliative opioid/sedative use and euthanasia may not be as significant as often believed, thereby advancing the case for euthanasia.
BACKGROUND: In the last two decades, nursing authors have published ethical analyses of palliative sedation-an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care.
RESEARCH AIM: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses' moral identities are portrayed within this literature.
RESEARCH DESIGN: We reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher's Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors' portrayal of the nursing role.
FINDINGS: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses' proximity to patients and families in end-of-life care.
DISCUSSION AND CONCLUSION: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples' moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation.
Palliative sedation is the intentional use of sedatives to manage refractory symptom(s), such as pain and/or terminal restlessness. This case report describes the successful use of propofol, an ultra-fast-acting anaesthetic agent commonly used for anaesthesia induction and maintenance to manage refractory agitated delirium in an acute inpatient palliative medicine setting.
Introduction : au plan international, le concept de sédation palliative n’est pas défini de façon uniforme. En Suisse, il est encadré par les recommandations émises en 2005.
Contexte : la conceptualisation de la sédation palliative est susceptible d’être hétérogène chez les infirmiers , en raison de la diversité des protocoles développés localement, mais aussi, des expériences vécues, posant ainsi des difficultés épistémologiques et pratiques. Cette problématique, bien qu’indispensable pour bien circonscrire l’objet de futures recherches en la matière en Suisse, n’a pas été explorée dans la partie francophone de ce pays.
Objectifs : découvrir et décrire la conceptualisation de la sédation palliative par les infirmiers d’une unité de soins palliatifs en Suisse romande.
Méthode : recherche qualitative exploratoire avec entretiens compréhensifs individuels.
Résultats : la sédation palliative est considérée comme un traitement de dernier recours face à un/des symptôme(s) réfractaire(s). La recherche d’une dose minimale efficace et le caractère au moins initialement temporaire de la sédation sont les principaux éléments mis en avant par les infirmiers.
Discussion et conclusion : la conceptualisation de la sédation palliative est conforme aux recommandations suisses. Ces résultats constituent une base afin de développer une étude nationale en la matière.
BACKGROUND: Palliative sedation for existential suffering (PS-ES) is a controversial clinical intervention. Empirical studies about physicians' perceptions do not converge in a clear position and current clinical practice guidelines do not agree either regarding this kind of intervention.
AIM: To gain deeper insight into physicians' perceptions of PS-ES, the factors influencing it, the conditions for implementing it and the alternatives to it.
DESIGN: Systematic review of qualitative, quantitative and mixed-methods studies following the Peer Review Electronic Search Strategies and Preferred Reporting Items for Systematic Reviews and Meta-analyses protocols; quality appraisal and thematic synthesis methodology.
DATA SOURCES: Seven electronic databases (PubMed, CINAHL, Embase, Scopus, Web of Science, PsycINFO, PsycARTICLES) were exhaustively searched from inception through March 2019. Two reviewers screened paper titles, abstracts and full texts. We included only peer-reviewed journal articles published in English, French, German, Dutch, Spanish, Italian or Portuguese that focused on physicians' perceptions of PS-ES.
RESULTS: The search yielded 17 publications published between 2002 and 2017. Physicians do not hold clear views or agree if and when PS-ES is appropriate. Case-related and individual-related factors that influenced physicians' perceptions were identified. There is still no consensus regarding criteria to distinguish between necessary and sufficient conditions for invoking PS-ES. Some alternatives to PS-ES were identified.
CONCLUSIONS: To date, there is still no consensus on physicians' perceptions of PS-ES. Further research is necessary to understand factors that influence physicians' perceptions and philosophical-ethical presuppositions underlying this perceptions.
"When death knocks at the door of our ward, we do not easily open the door", an intensivist once said. In the intensive care unit (ICU) and emergency department, care is strongly focused on cure and resuscitation. Notwithstanding the technological progress made in intensive and emergency medecine, a substantial number of the partients admitted to the ICU cannot be saved.
Delirium is a common problem in terminally ill patients that is associated with significant distress and, hence, considered a palliative care emergency. The three subtypes of delirium are hyperactive, hypoactive, and mixed, depending on the level of psychomotor activity and arousal disturbance. When agitated delirium becomes refractory in the setting of imminent dying, the agitation may be so severe that palliative sedation (PS) is required. Palliative sedation involves the administration of sedative medications with the purpose of reducing level of consciousness for patients with refractory suffering in the setting of a terminal illness. Propofol is a sedative that has a short duration of action and a very rapid onset. These characteristics make it relatively easy to titrate. Reported doses range from 50 to 70 mg per hour. The authors present a case of antipsychotic-resistant agitated delirium treated with a propofol intravenous infusion.
In developing their policy on paediatric medical assistance in dying (MAID), DeMichelis, Shaul and Rapoport decide to treat euthanasia and physician-assisted suicide as ethically and practically equivalent to other end-of-life interventions, particularly palliative sedation and withdrawal of care (WOC). We highlight several flaws in the authors' reasoning. Their argument depends on too cursory a dismissal of intention, which remains fundamental to medical ethics and law. Furthermore, they have not fairly presented the ethical analyses justifying other end-of-life decisions, analyses and decisions that were generally accepted long before MAID was legal or considered ethical. Forgetting or misunderstanding the analyses would naturally lead one to think MAID and other end-of-life decisions are morally equivalent. Yet as we recall these well-developed analyses, it becomes clear that approving of some forms of sedation and WOC does not commit one to MAID. Paediatric patients and their families can rationally and coherently reject MAID while choosing palliative care and WOC. Finally, the authors do not substantiate their claim that MAID is like palliative care in that it alleviates suffering. It is thus unreasonable to use this supposition as a warrant for their proposed policy.
Background:Little is known about palliative sedation in terminally ill heart failure (HF) patients.
Methods and Results:We retrospectively reviewed terminally ill HF patients who received palliative sedation from September 2013 to August 2018. Among 95 terminally ill HF patients, 25 were prescribed dexmedetomidine and 12 were prescribed midazolam at the end of life. Richmond Agitation-Sedation Scale was significantly reduced (P<0.01), but blood pressure and heart rate were unaltered after treatment in both the dexmedetomidine and midazolam groups.
Conclusions:Prescription of dexmedetomidine and/or midazolam might be feasible in selected terminally ill HF patients.
BACKGROUND: Existential distress is a term used when patients who are coming towards the end of their lives exhibit profound suffering, related particularly to their thoughts on life and existence. The clinical expression of this phenomenon has not been widely researched, and so specialist palliative care nurses were asked how they identify and manage this patient cohort.
AIMS: To explore how palliative-care nurses identify patients with existential distress and manage their needs.
METHODS: A qualitative descriptive design with thematic content analysis of transcribed interviews.
FINDINGS: Behavioural changes, agitation, social withdrawal and communication difficulties are identified as indicators of possible existential distress. Susceptible patient groups are identified. Nurses acknowledged that caring for patients with existential distress can be emotionally demanding. Being present and building relationships with patients are identified as enabling meaning-making. Sedation for refractory distress is seen as a last resort.
CONCLUSION: Early identification of existential distress by carers could enable timely intervention (counselling, psychotherapy and or spiritual guidance) to improve the patients' quality of life in the terminal phase of their illness and avoid intractable or refractory existential distress that may necessitate palliative sedation.
Patients with terminal cancer experience refractory symptoms in the last days of life. Although palliative sedation (PS) is recommended for patients suffering unbearable symptoms with imminent death, it requires clear communication between physicians and patients/caregivers. Understanding the demands and perceptions of patients and caregivers in the end-of-life phase are needed for effective communication. To explore patient experiences regarding end-of-life status and PS. The study was performed between October and December, 2013 with eligible terminal cancer patients and their families in a non-religious, tertiary healthcare facility in Korea. Eligibility criteria were a hospitalized cancer patient with a life expectancy of less than three months and who had never experienced PS. Data were collected via face-to-face in-depth interviews and analyzed using the constant comparative method of qualitative analysis. Saturation was achieved after conducting interviews with 13 patients or care-giving family members. Enrolled patients raised the following issues: 1) simultaneously harboring the hope of prolonging life and wishing for a peaceful death, 2) experiencing difficulties in having honest conversations with caregivers regarding death, 3) possessing insufficient knowledge and information regarding PS, and 4) hoping for the decision on PS to be made before suffering becomes too great. Terminally ill cancer patients and their caregivers expressed conflicting desires in hoping to prolong life and simultaneously wishing to experience a peaceful death. Improvements in the communications that occur among physicians, patients, and caregivers on the issues of prognosis and PS are needed.