Objectives: The objectives of this study are to investigate how many advanced cancer patients became unconscious or non-communicative after pharmacological treatment for delirium, and to explore whether existing delirium assessment tools can successfully evaluate its severity at the end of life.
Methods: This was a secondary analysis of a registry study that examined the efficacy and safety of antipsychotics for advanced cancer patients with delirium. A total of 818 patients were recruited from 39 specialized palliative care services in Japan. The severity of delirium was measured using the Richmond Agitation-Sedation Scale-Palliative care version, the Delirium Rating Scale-Revised-98 (DRS-R-98), and the Nursing Delirium Screening Scale (Nu-DESC) on Day 3. Data from 302 patients with motor anxiety with an Agitation Distress Scale score =2 on Day 0 were analyzed for this study. The patients were categorized into four treatment response groups: complete response (CR: no agitation and fully communicative), partial response (PR: no/mild agitation and partially communicative), unconscious/non-communicative (UC), and no change (NC).
Results: On Day 3, 29 (10%; 95% confidence intervals (CI), 7-13) and 2 (1%; 95% CI, 0-2) patients became unconscious and non-communicative, respectively. Forty-four patients were categorized as CR, 97 as PR, 31 as UC, and 96 as NC. The scores of the DRS-R-98 and Nu-DESC in the UC group were rated higher than patients in the NC group were.
Conclusions: A considerable number of cancer patients with delirium became unconscious or non-communicative. Existing delirium assessment tools may be inappropriate for measuring the severity of delirium in end-of-life.
To the Editor : A woman with a history of obesity, diabetes, cardiovascular disease, and end-stage renal disease was admitted to an overburdened New York hospital with respiratory distress due to coronavirus disease 2019 (COVID-19). At the time of admission, she was unable to speak for herself, and given restrictions on visitation, it took much effort to find her daughter who did not know the patient's medical wishes. Before COVID-19, the daughter had accompanied her wheelchair-bound mother to all of her appointments including visits with an endocrinologist, cardiologist, primary care doctor, and physical therapist in the preceding 3 months, as well as dialysis appointments three times a week. However, advance care planning (ACP) had never been discussed.
Well-designed, rigorously implemented instrumentation studies are essential to develop valid, reliable pain assessment tools in non-communicative (non-self-reporting) palliative care patients. When conducting a pain instrumentation study, a research team identified methodologic challenges surrounding informed consent, eligibility criteria, acute pain operational definitions, patient recruitment, missing data, and study-related training during a run-in phase at the beginning of the project and during the conduct of the study. The team dealt with these challenges through identifying root causes, implementing remedial measures, and collecting data to demonstrate improvement or resolution. Effective strategies included obtaining Institutional Review Board (IRB) approval for a waiver of informed consent, modifying eligibility criteria, ensuring that operational definitions and study procedures were consistent with clinical practice, decreasing time from screening to data collection to improve recruitment, increasing study nurse staffing by re-budgeting grant funds, focusing time and resources on high accruing clinical units, revising processes to minimize missing data, and developing detailed training for users of the instrument. With these multi-pronged solutions, the team exceeded the patient accrual target by 25% within the funding period and reduced missing data. While pain instrumentation studies in non-communicative patients have similar challenges to other palliative care studies, some of the solutions may be unique and several are applicable to other palliative care studies, particularly instrumentation research. The team's experience may also be useful for funders and IRBs.
Work in palliative care is humbling as assumptions are corrected by how a child's life unfolds in unexpected ways. Transitioning to a new job offers time to reflect on this important lesson. I first met Angelica when she was four months old.
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Purpose: To review studies pertaining to the reliability and validity of observational pain assessment tools for use with nonverbal patients at the end-of-life, a field of research not documented by previous systematic reviews.
Methods: Databases (PubMed, Embase, Epistemonikos, the Cochrane Library, and CINAHL) were systematically searched for studies from study inception to February 21, 2016 (update in May 9, 2018). Two independent reviewers screened study titles, abstracts, and full texts according to inclusion and exclusion criteria. Disagreements were resolved through consensus. Reviewers also extracted the psychometrics properties of studies of observational pain assessment instruments dedicated to a noncommunicative population in palliative care or at the end-of-life. A comprehensive quality assessment was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) to derive poor, fair, good or excellent ratings for the psychometric tests reported in each study.
Results: Four studies linked to 4 different tools met the inclusion criteria. Study populations included dementia, palliative care and severe illness in the context of intensive care. All the studies included in this review obtained poor COSMIN ratings overall.
Conclusions: At this point, it is impossible to recommend any of the tools evaluated given the low number and quality of the studies. Other analyses and studies need to be conducted to develop, adapt, or further validate observational pain instruments for the end-of-life population, regardless of the disease.
Donation after cardiac death (DCD) traditionally occurs in two patient populations: (1) those who do not meet neurological death criteria but who have suffered severe neurological damage, and (2) those who are fully alert and awake but are dependent on machines. This case highlights the unique dilemma when a patient falls between these two populations-conscious and cognitively intact, but completely paralyzed except for limited eye movement, afflicted by what the medical community refers to as locked-in syndrome. Prompted by the treatment team's discomfort, an ethics consultant examined whether the team was obligated to discuss a decision to donate with the patient, who was a registered organ donor. This article shows how, in determining whether or not to talk to the patient or family during end-of-life decision making, the weight assigned to the various ethical concerns in the case-the patient's condition, the decision to be made, and the family's agreement or disagreement regarding the patient's wishes-can "swing the pendulum" of ethical analysis in different ways. The comfort of the patient must be accorded the highest priority, as well as the needs of the patient's family. This case study highlights the nuanced contextual factors necessary to guide a treatment team's approach to DCD for a patient with uncertain decision-making capacity.
Cas 8 : Mme A.B., âgée de 74 ans est victime d’une hémiplégie droite par embolie cérébrale. Elle est aphasique type Broca (comprend les paroles, mais ne peut parler). Après une hospitalisation en Unité d’urgences cérébro-vasculaires, puis en rééducation, il est constaté que Mme A.B. ne pourra jamais remarcher ni retrouver la parole. Son mari, âgé de 85 ans, bien que valide et lucide, est incapable de reprendre au domicile son épouse confinée au fauteuil, incapable d’assurer seule ses transferts, incontinente urinaire et fécale et dans l’impossibilité de s’exprimer de façon compréhensible. Les services de Soins et d’aide à domicile du secteur jugent ne pas avoir les moyens de prendre soin de cette malade et l’Hospitalisation à domicile (HAD) refuse une patiente qui exige une présence d’aide humaine quasi permanente.
En conséquence, une demande d’entrée en Établissement d’hébergement pour personnes âgées dépendantes (EHPAD) et en Soins de longue durée (SLD) est faite, ainsi qu’une demande de mise sous tutelle. Pendant ces séjours hospitaliers, son mari est venu la voir tous les jours et a commencé à développer avec elle un début de communication non verbale. L’établissement acceptant cette « résidente » est situé à 30 km du domicile du couple, qui habite une grande ville. Les trois enfants sont dispersés à des distances bien supérieures, travaillent, ont des enfants et ne peuvent s’occuper ni de leur mère handicapée, ni du couple.
Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease, leading to progressive paralysis, dysarthria, dysphagia, and respiratory disabilities. Therapy is mostly focused on palliative interventions. During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired. In this light, communication has been argued to be "the essence of human life" and crucial for patients' quality of life. High-tech augmentative and alternative communication (HT-AAC) technologies such as eyetracking based computer devices and brain-computer-interfaces provide the possibility to maintain caregiver-independent communication and environmental control even in the advanced disease state of ALS. Thus, they enable patients to preserve social participation and to independently communicate end-of-life-decisions. In accordance with these functions of HT-AAC, their use is reported to strengthen self-determination, increase patients' quality of life and reduce caregiver burden. Therefore, HT-AAC should be considered as standard of (palliative) care for people with ALS. On the other hand, the supply with individually tailored HT-AAC technologies is limited by external and patient-inherent variables. This review aims to provide an overview of the possibilities and limitations of HT-AAC technologies and discuss their role in the palliative care for patients with ALS.
Quand je me présente dans la chambre d’un patient laryngectomisé que je vois pour la première fois, il m’est souvent difficile de me situer. Ma présence est-elle acceptée ? Ou dois-je me retirer ? En l’absence d’un refus ou d’une invitation à rester clairement exprimée, j’essaie de capter tous les signes qui vont m’aider à prendre une décision (regard, attitude, ouverture/fermeture…).
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Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
BACKGROUND: In palliative care, administration of opioids is often indispensable for pain treatment. Pain assessment may help recognize pain and guide treatment in non-communicative patients. In the Netherlands the Rotterdam Elderly Pain Observation Scale (REPOS) is recommended to this aim, but not yet validated. Therefore the objective of this study was to validate the REPOS in non-communicative or unconscious end-of-life patients.
METHODS: In this observational study, the primary researcher applied the REPOS, while both the researcher and a nurse applied the Numeric Rating Scale (NRS). If possible, the patient in question applied the NRS as well. The NRS scores were compared with the REPOS scores to determine concurrent validity. REPOS scores obtained before and after a pain-reducing intervention were analysed to establish the scale's sensitivity to change.
RESULTS: A total of 183 REPOS observations in 100 patients were analysed. Almost 90% of patients had an advanced malignancy; observations were done a median of 3 days (IQR 1 to 13) before death. Internal consistency of the REPOS was 0.73. The Pearson product moment correlation coefficient ranged from 0.64 to 0.80 between REPOS and NRS scores. REPOS scores declined with median 2 points (IQR 1 to 4) after a pain-reducing intervention (p < 0.001). Optimal sensitivity (0.81) and specificity (0.62) were found at cut-off score 3.
CONCLUSIONS: This study demonstrates that the REPOS has promising psychometric properties for pain assessment in non-communicative end-of-life patients. Its application may be of additional value to relieve suffering, including pain, in palliative care.
BACKGROUND: In interactions between professional caregivers, patients and family members at the end of life, silence often becomes more prevalent. Silence is acknowledged as integral to interpersonal communication and compassionate care but is also noted as a complex and ambiguous phenomenon. This review seeks interdisciplinary experience to deepen understanding of qualities of silence as an element of care.
AIM: To search for published papers which describe professional caregivers' experience of silence as an element of care, in palliative and other clinical, spiritual and pastoral care settings and to synthesise their findings.
DESIGN: Meta-ethnography: employing a systematic search strategy and line-of-argument synthesis.
PsycINFO and seven other cross-disciplinary databases, supplemented by hand-search, review of reference lists and citation tracking. No date range was imposed. Inclusion criteria focused on reported experience of silence in professional caregiving. Selected papers (n = 18) were appraised; none were rejected on grounds of quality.
RESULTS: International, interdisciplinary research and opinion endorses the value of silence in clinical care. As a multi-functional element of interpersonal relationships, silence operates in partnership with speech to support therapeutic communication. As a caregiving practice, silence is perceived as particularly relevant in spiritual and existential dimensions of care when words may fail.
CONCLUSION: Experience of silence as an element of care was found in palliative and spiritual care, psychotherapy and counselling supporting existing recognition of the value of silence as a skill and practice. Because silence can present challenges for caregivers, greater understanding may offer benefits for clinical practice.
La communication non verbale avec un animal a-t-elle quoi que ce soit de commun avec ce que nous échangeons entre être humains ? L'auteur, de par sa longue expérience de cavalier et de médecin en soins palliatifs, tire une comparaison dont il souligne à tout instant les limites.
Lorsque la communication est gravement entravée, il s'agit d'être là, auprès du malade, face à une présence qui ne se matérialise plus, une présence habitée par l'énigme. Dans cet accompagnement, il importe de repérer les difficultées inhérentes à cette situation. Il faut aussi découvrir les obstacles à surmonter pour devenir réellement présent à autrui lorsque celui-ci est traversé par cette souffrance. La relation repose sur un échange à la fois symbolique et émotionnel.
Deux pièces de théâtre ont cherché à répondre à la question : est-il possible d'examiner comment le chagrin affecte les relations familiales, sans utiliser la parole ? Entretien avec les co-directeurs et directeurs des spectacles.
Ce numéro est consacré au 8ème colloque alpin de soins palliatifs qui s'est déroulé le 8 avril 2016 à Chambéry avec pour titre "La voix des personnes face à la maladie grave". Ce cahier spécial comprend les résumés des ateliers, des plénières et les affiches.
Il existe de nombreux outils d'évaluation des comportements chez les personnes atteintes de démence ou d'autres handicaps cognitifs qui ne peuvent pas parler. Nombreux sont ces derniers servant à évaluer la douleur, mais il existe peu d'outils pour mesurer l'inconfort ou l'anxiété. Les tests se recoupent en grande partie, mais les approches et les formats peuvent différer considérablement entre les différents outils et types d'outils.
La comparaison entre un outil destiné à évaluer la douleur tel que le Pain Assessment in Advanced dementia (PAINAD) et un document sur l'anxiété tel que le Disability Distress Assessment Tool (DisDAT) démontre que les signes et les comportements prêtent à différentes interprétations.
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Cet article reprend le texte d'une communication qui a été présentée le 28 novembre 2002 devant les membres du Congrès de l'Association de Neuro-Oncologie d'Expression Française à la demande du Dr A. Monjour, médecin responsable du secteur de Neuro-Oncologie aux Hospices Civils de Colmar.