Les notions fondamentales des soins palliatifs sont présentées en fiches synthétiques, avec des cas concrets et des situations cliniques. L'ouvrage aborde la douleur, les symptômes, le soin de confort, la souffrance psychique, la sédation ou encore l'éthique.
CONTEXT: Providing nonbeneficial care at the end of life and delays in initiating comfort care have been associated with provider and nurse moral distress.
OBJECTIVE: Evaluate provider and nurse moral distress when using a comfort care order set and attitudes about timing of initiating comfort care for hospitalized patients.
METHODS: Cross-sectional survey of providers (physicians, nurse practitioners, and physician assistants) and nurses at 2 large academic hospitals in 2015. Providers and nurses were surveyed about their experiences providing comfort care in an inpatient setting.
RESULTS: Two hundred five nurse and 124 provider surveys were analyzed. A greater proportion of nurses compared to providers reported experiencing moral distress "some, most, or all of the time" when using the comfort care order set (40.5% and 19.4%, respectively, P = .002). Over 60% of nurses and providers reported comfort care was generally started too late in a patient's course, with physician trainees (81.4%), as well as providers (80.9%) and nurses (84.0%) < 5 years from graduating professional school most likely to report that comfort care is generally started too late.
CONCLUSIONS: The majority of providers and nurses reported that comfort care was started too late in a patient's course. Nurses experienced higher levels of moral distress than providers when caring for patients using a comfort care order set. Further research is needed to determine what is driving this moral distress in order to tailor interventions for nurses and providers.
Despite the frequency, complexity, and intensity of communication that occurs between nurses, patients, and families, palliative care nurses often struggle with end-of-life communication. The primary goal of this quality improvement project was to increase nurse confidence and satisfaction engaging in end-of-life communication following the implementation of the COMFORT model; the secondary goal was to improve patient-family satisfaction with care provided in the palliative care unit. Fourteen palliative care nurses attended a 4-hour course to learn the tenets of the COMFORT model and practice through role-play exercises. A repeated-measures design was used to measure nurse confidence and satisfaction precourse, postcourse, and 3 months postcourse. A between-subjects pre-post design was used to compare family satisfaction survey scores in the 3-month period before versus the 3 months after implementation. Analysis revealed a statistically significant increase in all measures of nurse confidence and satisfaction from precourse to postcourse and from precourse to 3 months postcourse. There was no statistical difference between the family satisfaction survey scores before versus after training, although survey results were generally high at baseline and most respondents rated palliative services with the best possible response. This project demonstrates that COMFORT model training increased confidence and satisfaction of palliative care nurses engaged in end-of-life communication and demonstrates potential for use in other clinical areas that do not specialize in end-of-life nursing (eg, critical care) but find themselves in need of the communications skills to address end-of-life care.
What is known about the topic? A novel program was implemented to enhance the care provided by paramedics to patients with palliative goals of care. What did this study ask? This study asked about patient experience with the program and the comfort and confidence of paramedics to deliver this care. What did this study find? Patients praised the compassion of paramedics and staying home, and paramedics strongly agreed palliative care should be in their practice. Why does this study matter to clinicians? Knowledge of this program will support similar initiatives and increase access to care and death outside of the hospital setting.
Background: Approximately 25â€“30% of Americans die within hospitals. An increasingly geriatric and chronically ill population arrive at emergency departments (EDs) for their terminal presentation. Many patients will not choose, nor are EDs obligated to deliver, futile care. Instead, aggressive comfort care may alleviate patient, family, and clinician distress.
Objectives: To discuss best practice through a systematic approach to comfort care transitions for the dying ED patient.
Methods: Authors utilized a structured literature search conducted via PubMed (MEDLINE), Embase, and CINAHL databases, including studies from 1998 onward focusing on symptom palliation and coordination of care for acutely dying patients.
Discussion: Comfort care begins with the language used to introduce the transition. Frame choices to avoid creating feelings of familial abandonment. Prognostication in the dying process helps guide treatment planning and stewarding families. Symptom management in the actively dying patient involves diligent titration of medications as well as thoughtful ordering in de-escalation of life-support modalities. Compassionate extubation necessitates anticipation of postextubation dyspnea or airway loss, and therefore may require step-wise weaning of pulmonary support. Suffering at the end of life for patients and families is multidimensional, and is best approached with an interdisciplinary effort involving clinicians, social work, and chaplaincy.
Conclusion: Comfort care deaths are a daily occurrence in the ED. A systematic approach to these transitions ensures optimal care for patients in their final hours and familiesâ€™ experience of these events.
Communication is a key component of palliative and end-of-life care. Little is known about comfort with palliative and end-of-life communication among nurses working in rural and urban settings. We assessed this comparison using the 28-item (including 2 ranked items) Comfort with Communication in Palliative and End-of-Life Care instrument. Descriptive analyses of the sample (N = 252) identified statistically significant results differences for age and experience; rural nurses were older and more experienced. Urban nurses reported less comfort than did rural nurses based on composite score analysis (P = .03) and reported less comfort than did rural nurses in talking with patients and families about â€œend-of-life decisionsâ€ (P < .05). Overall, years of experience were significant for more comfort with end-of-life communication. Our instrument could be used within academic settings to establish baseline awareness of comfort with palliative and end-of-life communication and in institutional settings to provide a continuing education bridge from prelicensure through licensure. Moreover, experienced nurses are integral in mentoring new graduates in initiating and sustaining difficult conversations.
Le risque dâ€™altération de la bouche est majoré en phase palliative dâ€™une maladie du fait de lâ€™assèchement de la muqueuse buccale par les thérapeutiques. Affaibli, le patient boit et sâ€™alimente peu, voire plus. Sa perte dâ€™autonomie amène les soignants à prendre le relais des soins dâ€™hygiène et de confort. Le soin de bouche préventif, dâ€™hydratation et de confort, associé au soin de bouche dâ€™hygiène devient indispensable.
CONTEXT: In most resource-rich countries, a large and growing proportion of older adults with complex needs will die while in a Residential Aged Care (RAC) facility.
OBJECTIVES: This study describes the impact of facility size (small/large), ownership model (profit/non-profit) and provider (independent/chain) on resident comfort and symptom management as reported by RAC staff.
METHODS: This retrospective 'after-death' study collected data decedent resident data from a subsample of 51 hospital-level residential aged care facilities in New Zealand. Symptom Management and Comfort Assessment in Dying at End of life with Dementia (SM-EOLD and CAD-EOLD) scales were administered post-mortem to Residential Aged Care staff most closely associated with 217 deceased residents. Data collection occurred from January 2016 to February 2017.
RESULTS: Results indicated that residents of large, non-profit facilities experienced greater comfort at the end of life (CAD-EOLD) as indicated by a higher mean score of 37.21 (SD = 4.85, 95%CI 34.4, 40.0 compared with residents of small for-profit facilities who recorded a lower mean score 31.56 (SD = 6.20 95% CI 29.6, 33.4). There was also evidence of better symptom management for residents of chain facilities, with a higher mean score for Symptom management score (SM-EOLD total score) recorded for residents of chain facilities (mean = 28.07, SD = 7.64, CI 26.47), 29.66) was higher in comparison to the mean score for independent facilities (mean = 23.93, SD = 8.72, 95% CI 21.65, 26.20).
CONCLUSION: Findings suggest that there are differences in the quality of end-of-life care given in Residential Aged Care based on size, ownership model, and chain affiliation.
CONTEXT: An unresponsive patient's need and their response to breakthrough medication is determined by clinical assessment and/or observational measures. How closely these methods match the patient's experience is unknown.
OBJECTIVES: Determine the efficacy and effectiveness of breakthrough medication in unresponsive patients and the perception of patient comfort made by nurses and family.
METHODS: A prospective study of breakthrough medication in unresponsive patients. The Richmond Agitation-Sedation Scale (RASS) and Patient Comfort Score (PCS) were compared with time-matched Bispectral Index (BIS) scores. The effects of opioid versus opioid + benzodiazepine breakthroughs and the relation between synchronous nurse and family measurements of the PCS were evaluated. ANOVA and paired t-tests were used for BIS analyses and non-parametric Mann Whitney tests for RASS and PCS.
RESULTS: Significant reductions at 30 and 60 minutes following breakthrough medication were noted for BIS (p<0.0004), RASS (p=0.043 and 0.004 respectively) and PCS (p<0.0004). A direct comparison of the effect of opioid breakthrough medication versus opioid plus benzodiazepine revealed no significant difference (BIS, p=0.512; RASS, p=0.195; PCS, p=0.119). Of the 157 synchronous nurse and family measures of patient comfort, families rated patient discomfort significantly higher than nurses (p<0.0004).
CONCLUSION: This study provides additional evidence for the efficacy and effectiveness of breakthrough medication and the merit of observational measures in determining a patient's response. The onset of action is evident at 30 minutes following injection. Family assessment of patient comfort may be more nuanced than that of nurses and they not uncommonly rate patient discomfort higher than nurses.
We stand quietly at the foot of the bed and watch. The patient lies semisupine in the mechanical bed, intermittently breathing slowly and deeply before longer apneic pauses. Despite the soft groan of the bilevel positive airway pressure machine and the occasional chirps from 4 continuous intravenous drips, he seems settled, arms open, hands unfolded to the fluorescent overhead lighting. Even in this state of unconsciousness, he seems to be preparing to die.
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Costs of end of life care for patients who have advanced heart failure (HF) are increasing. There is a perception that many of these patients receive aggressive treatments near the end of life. However, actual patterns of care are unclear. In this article we describe the use of life-sustaining treatments and the timing of goals of care discussions during patients' terminal admission for HF. We conducted a single-centre retrospective cohort study of patients aged 18 years or older with a most responsible discharge diagnosis of HF who died between April 2012 and December 2013. We identified 133 eligible decedents of whom 67 (50%) received some form of life-sustaining treatment, although only 14 (11%) received cardiopulmonary resuscitation (CPR). The first documented orders for scope of treatment were: CPR for 39 (29%), active medical treatment with no CPR for 81 (61%), and comfort care with no CPR for 11 (8%) patients. The last documented orders were for comfort care in 85 (64%) patients. There were 28 (21%) patients who received palliative care consultation. Median time between palliative care consultation and death was 6 days and between orders for comfort care and death was 24 hours. In contrast to the high mortality risk of our study cohort, palliative care consultation was often absent or in the final days of life, with orders for comfort-oriented care being written only 24 hours before death, suggesting there remain opportunities for earlier integration of palliative and goal-directed approaches to therapy for patients who have advanced HF.
Caring for a child in hospital who is approaching death, in the terminal phase, requires a focus on caring for the physical, emotional, and spiritual needs of the child and family. Health professionals caring for these children and families may need to shift their focus from a treatment-focused approach aimed at cure or maintaining life to a comfort-focused approach. The Comfort Care Case (CCC) is a collection of resources designed for use in hospital to ease suffering and facilitate comfort within a pediatric end-of-life (EOL) context. The resources are intended to support the child, the family, and the health professionals involved in EOL care. This article describes the development, implementation, and education associated with the CCC in a tertiary pediatric hospital.
Guided imagery (GI) is a nonpharmacological intervention that is increasingly implemented in different clinical contexts. However, there have been no studies on the effect of GI on the comfort of inpatients of palliative care (PC) units. Therefore, the aim of this study was to evaluate the effects of GI on the comfort of patients in PC. A 1-group, pretest-posttest, pre-experimental design was used to measure differences in heart rate, respiratory rate, pain, and comfort in patients (n = 26) before and after a 2-session GI program. The intervention featuring GI increased comfort, measured by an Abbreviated Holistic Comfort Scale and the visual analog comfort scale (P < .001), and decreased heart rate (P < .001), respiratory rate (P < .001), and pain, as measured by the (numerical) visual analog pain scale (P < .001). This study demonstrates that the use of an intervention featuring GI increases the comfort of oncology patients admitted to a PC unit. The use of GI by nurses is inexpensive, straightforward to implement, and readily available and may result in the provision of comfort care.
This article describes the author's program of clinical research focused on assessment and treatment of respiratory distress among critically ill patients at the end of life. Dyspnea is a subjective experience of breathing discomfort that occurs in the presence of cardiopulmonary and neuromuscular diseases. Dyspnea is one of the most common and most distressing symptoms experienced by critically ill patients. Many critically ill patients, particularly those not expected to survive, become cognitively impaired or unconscious and lose the ability to report symptoms, although dyspnea can be known only from a patient's report. When self-reporting ability is lost, the critical care nurse must rely on signs indicative of a patient's respiratory distress. The critically ill patient unable to self-report is vulnerable to under-recognition of symptom distress and subsequent over-treatment or undertreatment. When the patient is dying, there is only 1 chance to optimize the assessment and treatment of symptoms.
AIMS AND OBJECTIVES: To investigate challenges nurses face when providing care for oncology patients transitioning from curative to palliative care and to identify educational and support opportunities for nurses.
BACKGROUND: Communicating with oncology patients/families transitioning from curative treatments to care focused on comfort can be problematic for a variety of reasons. Research suggests discrepancies exist between physicians' and patients' perceptions of probable length of life. These disconnects can deepen suffering. Oncology and palliative care nurses are well positioned to facilitate this transition. However, they receive little formal instruction regarding these complex scenarios beyond what occurs through on-the-job training.
METHODS: Twenty-eight nurses working in oncology (n = 14) and palliative care (n = 14) settings participated. The constant comparative method was used to analyse the data.
RESULTS: Four themes emerged that characterise oncology and palliative care nurses' experiences: (a) coping with interprofessional communication errors during the transition, (b) responding to patient/family reactions to miscommunication about the goals of care, (c) navigating emotional connection to patients, and (d) adapting to sociocultural factors that influence information exchange.
CONCLUSIONS: This study supports previous research regarding challenges related to patient reactions, family relationships and emotional burden during end-of-life care. However, it adds to the literature by a providing a more in-depth explication of interprofessional and patient-physician communication barriers that negatively impact care.
RELEVANCE TO CLINICAL PRACTICE: Misunderstandings between patients, physicians and nurses have the potential to distress complicate nurses' efforts to support patients and families. Nurses reported a problematic power dynamic that impedes their ability to facilitate communication between patient and physician or to offer insights that could enhance patient care. Medical education and continuing education initiatives are needed to build understanding across professional roles and specialties and to improve comfort discussing worsening prognosis and end-of-life issues.
INTRODUCTION: Transition to comfort measures only (CMO) is common in the neurocritical care unit, and close communication between interdisciplinary health-care teams is vital to a smooth transition. We developed and implemented a CMO huddle in an effort to reduce inconsistencies during the process of CMO transition.
METHODS: The CMO huddle was a multiphase quality improvement project in a neurocritical care unit of a level-1 trauma and comprehensive stroke center. Interdisciplinary critical care clinicians engaged in a huddle during CMO processes and participated in a pre- and postimplementation survey to examine the impact of CMO huddle on communication, missed opportunities, and improvement in knowledge.
RESULTS: Since the CMO implementation, a total of 131 patients underwent CMO transitions. After implementation of an interdisciplinary CMO huddle, 64.3% of neurocritical care nurses reported that they felt included and involved in CMO process compared to 28% before implementation ( P = .003); 87.9% of all neurocritical care clinicians reported that they felt comfortable participating in CMO discussions compared to 69.8% before ( P < .001); 57.4% of all neurocritical care clinicians reported that the CMO huddle improved communication among neurocritical care clinicians, 51.9% reported reduction in missed opportunities during CMO process, and 21.7% reported witnessing less-than-ideal CMO process compared to 80% before ( P < .001).
CONCLUSIONS: Implementation of a multidisciplinary huddle in the neuro-intensive care unit before transition to CMO may improve clinician's experience of the end-of-life process through enhanced nursing inclusion and involvement and organized communication with the neurocritical care team.
OBJECTIVE: To verify the association between the level of comfort of the caregiver and socio-demographic variables related to caregiving, and the patient's functional status and symptoms.
METHOD: Cross-sectional study with non-probabilistic intentional sample. The instruments Palliative Performance Scale (score 0 to 100%), Edmonton Symptom Assessment Scale (symptom scores from zero to ten) and Holistic Comfort Questionnaire (total score ranging from 49 to 294 and mean score from 1 to 6) were used. The relationship between comfort scores and independent variables was calculated by multiple linear regression.
RESULTS: Fifty informal caregivers participated in the study - 80% were female, 32% were 60 years old or older, 36% were children of the patient, 58% had paid work and 60% did not have help in the care. The mean overall comfort was 4.52 points. A better functional status of the patients was associated with higher levels of comfort of the caregivers. Older caregivers who received helped in the care activities presented higher comfort scores.
CONCLUSION: The level of comfort of caregivers of cancer patients receiving palliative care was associated with socio-demographic variables and patients' functional status and symptoms.
Status epilepticus is a common and under-recognized cause of unconsciousness among hospitalized patients. It can clinically mimic delirium and other causes of acute mental status change, especially when clinically relevant seizure activity is not appreciated on physical examination. While the successful treatment of status epilepticus may require anesthetic dosing of antiepileptics such as barbiturates, these seemingly drastic therapeutic measures are justified when goals of care are life prolonging as they may allow a patient to regain consciousness and meaningfully interact with loved ones. However, medical burden from electroencephalogram (EEG) monitoring and other care associated with its diagnosis and treatment can contribute to distress for patients who may be dying from a comorbid illness. Furthermore, when goals of care transition to comfort, care challenges can result regarding the ongoing management of barbiturates or other sedatives, previously prescribed to treat the status epilepticus. In this case study, the lack of clinically significant seizure activity led us to conclude that the discontinuation of a barbiturate infusion and the EEG monitoring was the clinically appropriate approach for a dying patient with comfort goals of care and nonconvulsive status epilepticus.