Ce rapport avait pour objectif de guider l'action et le questionnement professionnels pour permettre le respect maximal des volontés liées à la fin de vie et un accompagnement le plus humain possible de la personne et des proches. Voici les résultats obtenus par le groupe de travail :
- Anticiper les situations de fin de vie en favorisant les échanges et en s’appuyant au maximum sur les ressources disponibles que ce soit au sein des équipes ou avec les partenaires du territoire.
- Informer et communiquer régulièrement sur les actions mises en œuvre, les adaptations qui s’imposent en période d’épidémie et les évolutions possibles des situations de fin de vie dont le décès.
- Garantir le confort de la personne et respecter les souhaits de chacun tout en prenant des décisions partagées lorsque des arbitrages s’imposent.
- Maintenir le lien avec les proches et l’entourage et leur apporter un soutien lors de la survenue du décès.
- Soutenir l’ensemble des professionnels dont la charge émotionnelle s’est accentuée.
- Préparer le deuil en offrant la possibilité aux personnes accompagnées et aux professionnels de partager un geste un moment, en mémoire de la personne.
Caring for persons at the end of life has dramatically changed in the last 20 years. Improved chronic illness management and aggressive life-sustaining measures for once-fatal illnesses have significantly increased longevity. People with life-limiting illnesses and their families are asked to make complex and difficult decisions about end-of-life, palliative, and hospice care. The purpose of this study was to discover and describe the culture care expressions, patterns, and practices influencing rural Appalachian families making decisions at the end of life. The qualitative, ethnonursing research method was used to analyze data from 25 interviews. The 4 themes discovered provide insights that could help improve this underserved population's access to palliative and hospice care, which in turn could help them experience a dignified death. Recommendations for health care providers could help reduce rural Appalachians' health disparities and promote meaningful, culturally congruent end-of-life care.
Objectives: Facilitating a high quality of death is an important aspect of comfort care for patients in ICUs. The quality of death in ICUs has been rarely reported in Asian countries. Although Korea is currently in the early stage after the implementation of the “well-dying” law, this seems to have a considerable effect on practice. In this study, we aimed to understand the status of quality of death in Korean ICUs as perceived by medical staff, and to elucidate factors affecting patient quality of death.
Design: A multicenter cross-sectional survey study.
Setting: Medical ICUs of two tertiary-care teaching hospitals and two secondary-care hospitals.
Patients: Deceased patients from June 2016 to May 2017.
Interventions: Relevant medical staff were asked to complete a translated Quality of Dying and Death questionnaire within 48 hours after a patient’s death. A higher Quality of Dying and Death score (ranged from 0 to 100) corresponded to a better quality of death.
Measurements and Main Results: A total of 416 completed questionnaires were obtained from 177 medical staff (66 doctors and 111 nurses) of 255 patients. All 20 items of the Quality of Dying and Death received low scores. Quality of death perceived by nurses was better than that perceived by doctors (33.1 ± 18.4 vs 29.7 ± 15.3; p = 0.042). Performing cardiopulmonary resuscitation and using inotropes within 24 hours before death were associated with poorer quality of death, whereas using analgesics was associated with better quality of death.
Conclusions: The quality of death of patients in Korean ICUs was considerably poorer than reported in other countries. Provision of appropriate comfort care, avoidance of unnecessary life-sustaining care, and permission for more frequent visits from patients’ families may correspond to better quality of death in Korean medical ICUs. It is also expected that the new legislation would positively affect the quality of death in Korean ICUs.
The field of critical care nursing is multidimensional and filled with opportunities to bring change to current practice. In the United States, nearly 13% of patients (range, 8%-24%) admitted to an intensive care unit (ICU) die during or after the admission (https://www.dartmouthatlas.org/interactive-apps/end-of-life-care/). Critical care nurses provide care at every stage of acute and chronic illness. Often this includes care of the patient and family at end of life, guided by palliative care principles supported by the national guidelines including the American Association of Critical Care (Dimens Crit Care Nurs 2017;36(2):110-115). While enrolled in the final registered nurse–to–bachelor of science in nursing (RN-to-BSN) course, students are challenged to complete a quality improvement (QI) project. The project leader noted a clinical problem in the ICU. The landmark Dying in America report, as well as published theories on comfort, and the Institute for Healthcare Improvement (IHI) Open School Plan-Do-Study-Act (PDSA) model were used as the theoretical foundation for a clinical practice change. This assignment was the impetus to provide items at the bedside using a comfort cart. Description of this nurse-driven pilot project initiative includes a replicable guide of implementing a comfort care cart, transforming the patient's room into a home-like atmosphere for the families at the bedside.
Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.
Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments.
Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing “other clinical events” was not associated with comfort.
Conclusions: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
Improving the end of life care experience of people dying in acute care has become a priority for our organization since 2016 with the launch of the "Quality Living and Dying Initiative." This initiative has three distinct foci. The first two areas of focus, advance care planning and standardized comfort measures, are well established while the third focus bereavement program remains in its early stages. Bereavement is recognized as an essential component along the continuum of palliative care. Despite this recognition, bereavement care is often lacking in hospital settings. This paper will describe a telephone bereavement initiative spearheaded by the Spiritual Care Team at our organization.
Palliative principles are increasingly within the scope of emergency medicine (EM). In EM, there remain untapped opportunities to improve primary palliative care (PC) and integrate patients earlier into the palliative continuum. However, the emergency department (ED) differs from other practice environments with its unique systemic pressures, priorities, and expectations. To build effective, efficient, and sustainable partnerships, palliative clinicians are best served by understanding the ED's practice priorities. The authors, each EM and Hospice and Palliative Medicine board certified and in active practice, present these 10 high-yield tips to optimize the ED consultation by PC teams.
Context: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting.
Objective: To identify modifiable factors associated with the comfort of dementia patients dying at home and families’ satisfaction with care.
Methods: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin<35g/L, enteral feeding or pneumonia were recruited from a palliative homecare programme. Independent variables included demographics, medical information and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients’ comfort while the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers’ satisfaction two months post-bereavement. Gamma regression identified factors independently associated with comfort and satisfaction.
Results: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß (95% CI) = 1.823 (0.660–2.986), P = 0.002] was positively associated with comfort, whereas opioid prescription (89.6%) [ß (95% CI) = -2.179 (-4.107 to -0.251), P = 0.027] and >1 antibiotic courses used in the last two weeks of life (77.2%) [ß (95% CI) = -1.968 (-3.196 to -0.740), P = 0.002] were negatively associated. Independent factors associated with families' satisfaction with care were comfort [ß (95% CI) = 0.149 (0.012–0.286), P = 0.033] and honoring of medical intervention preferences (96.0%) [ß (95% CI) = 3.969 (1.485–6.453), P = 0.002].
Conclusion: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honouring medical intervention preferences, such as those with palliative intent associated with patients’ comfort determined families’ satisfaction with care.
Some of the most ethically challenging and emotionally demanding aspects of nursing occur in caring for patients and their family at the end of life. The aims of this study were to examine the views of acute care nurses caring for patients during transition to comfort care, to describe the personal impact on nurses, and to identify nurses’ strategies for self-support and development of competence. Using a qualitative descriptive approach, we analyzed data from 26 semistructured interviews.
Nurses experienced moral distress in situations of continuing treatment when a cure was unlikely. In managing symptoms for patients, they struggled to foster an often-tenuous balance of patient comfort and calm without oversedation. They struggled to manage the competing demands of a workload including patients receiving curative care juxtaposed with those focused on comfort care. Nurses reflected on their fears as new nurses caring for end-of-life patients, the inadequacy of their preparation for this role, and their distress when the care provided felt inadequate to them.
Nurses navigated challenges through support from nurse colleagues and effective leaders. They appealed to administrators to attend to care concerns arising from time-intensive nature of care. Mentoring and education facilitated assimilation to comfort-care nursing for novice nurses.
The prevalence of urinary incontinence increases as a person ages, as age-related changes make it more difficult to maintain continence. Long-term conditions and treatments prescribed to treat conditions, such as heart failure, can lead to an urgency to void the bladder. Frailty can make it difficult for an older person to respond this need. At end of life, mobility is often compromised and people can experience extreme fatigue. Caregivers can obtain support to manage an individual's incontinence during the day but often struggle alone at night. Caregivers can become exhausted and a situation can reach breaking point. Working with the older person and caregivers to determine the goals of care and how to meet them can make a huge difference. It can take the pressure off the entire family, meet a person's needs and enable the person to stay at home. This article aims to enable nurses to understand the problems older people may experience and how to work with the older person and caregivers to develop solutions that maintain dignity and enhance quality of life.
CONTEXT: Patients with severe burns may face distressing symptoms with a high risk of mortality as a result of their injury. The role of palliative care in burns management remains unclear.
OBJECTIVE: To appraise the literature on the role of palliative care in burns management.
METHODS: Scoping review with searches in twelve databases from their inception to August 2019. The citation retrieval and retention are reported in a PRISMA statement.
FINDINGS: 39 papers comprising of 30 primary studies (26 from high income and 4 from middle income countries), 4 reviews, 2 editorials, 2 guidelines and 1 expert board review document were retained in the review. Palliative care is used synonymously with comfort and end of life care in burns literature. Comfort care is mostly initiated when active treatment is withheld (early deaths) or withdrawn (late deaths), limiting its overall benefits to burn patients, their families and health care professionals. Futility decisions are usually complex and challenging, particularly for patients in the late death category and it is unclear if these decisions result in timely commencement of comfort care measures. Two comfort care pathways were identified but it remained unclear how these pathways evaluated 'good death' or supported the family which creates the need for the development of other evidence-based guidelines.
CONCLUSION: Palliative care is applicable in burns management but its current role is mostly confined to the end of life period suggesting that it is not been fully integrated in the management process. Evidence-based guidelines are needed to support the integration and delivery of palliative care in the burn patient population.
"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.
Surgeons spend their careers taking care of complex surgical problems with high risk that have the potential to improve patient quality of life. Regrettably, patients do not always do well and the goal of improved quality of life through surgical palliation is not always achieved. Sometimes surgical complications arise, and patients fail to recover, or their disease progresses and the reality of cure changes, necessitating transparent communication. Ideally, surgeons address end-of-life issues as potential-ities over the continuum of care within the framework of the surgeon-patient relation-ship, rather than during a crisis when all treatment options have been exhausted. This article helps surgeons with the components of transitioning to comfort-focused care at the end of life, beginning with preoperative preparation and by encouraging ongoinggoals of care discussions thereafter.
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BACKGROUND: The objective of the study was to assess perinatal grief experienced after continuing pregnancy and comfort care in women diagnosed with lethal fetal condition compared with termination of pregnancy for fetal anomaly (TOPFA).
METHODS: This was a retrospective observational study which included women who chose to continue their pregnancy after the diagnosis of lethal fetal condition with comfort care support at birth at the Prenatal Diagnosis Center of Rennes Hospital from January 2007 to January 2017. Women were matched with controls who underwent TOPFA for the same type of fetal anomaly, gestational age at diagnosis and year. Women were evaluated by a questionnaire including the Perinatal Grief Scale.
RESULTS: There were 28 patients in the continuing pregnancy group matched with 56 patients in the TOPFA group. Interval between fetal loss and completion of questionnaire was 6±3 years. Perinatal grief score was similar at 61±22 vs 58±18 (p = 0.729) in the continuing pregnancy and TOPFA groups, respectively. Women in the TOPFA group expressed more guilt. The cesarean-section rate in the continuing pregnancy group was 25% .
CONCLUSION: Perinatal grief experienced by women opting for continuing pregnancy and comfort care after diagnosis of a potentially lethal fetal anomaly is not more severe than for those choosing TOPFA.
BACKGROUND: In the setting of critical illness, life preservation may come at the expense of limb as increasing concentration of vasopressors causes peripheral ischemia. When goals of care specify comfort measures, clinicians are faced with the difficult task of mitigating already present distal malperfusion while abiding to wishes of patient and patients' families. Physical changes post vasopressor use, such as mottling of appendages or cooling of skin, can limit meaningful physical interactions with grieving family members.
CASE PRESENTATION: We describe a case series of successful utilization of intravenous nitroglycerin to improve postvasopressor digital ischemia for comfort care measures to assist patient's families in the grieving process.
CONCLUSION: Following decision for comfort care measures, management for patient care goes beyond the realm of pain control. Dignified dying is an active process that requires clinicians to navigate care for both patient and patients' families. By reversing the digital ischemia associated with vasopressors, patients' families have the opportunity to give meaningful touch in setting of which it may be needed most.
Background: Antibiotic use may increase hospital length of stay (LOS) among older patients with advanced cancer who are transitioned to comfort measures.
Methods: We studied a cohort of patients with advanced cancer aged =65 years who were transitioned to comfort measures during admission from July 1, 2014, through November 30, 2016. We evaluated the association between antibiotic exposure and LOS using a Poisson regression model adjusted for age, gender, cancer type, comorbidities, infection, and intensive care unit admission.
Results: Among 461 patients with advanced cancer, median age was 74 years (range: 65-99), 49.0% (n = 226) were female, and 20.6% (n = 95) had liquid tumors. Overall, 82.9% (n = 382) received =1 antibiotic and 64.6% (n = 298) had =1 infection diagnosis during hospitalization. Infection diagnoses commonly included sepsis (35%, n = 161/461), pneumonia (25%, n = 117/461), and urinary tract infection (14%, n = 66/461). Among those receiving antibiotics, the most common choices included vancomycin (79%, n = 300/382), cephalosporins (63%, n = 241/382), and penicillins (45%, n = 172/382). In a multivariable Poisson regression model, LOS was 34% longer (count ratio = 1.34, [95% confidence interval: 1.20-1.51]) among those exposed versus unexposed to antibiotics.
Conclusions: Antibiotic use among patients with advanced cancer who are transitioned to comfort measures is associated with longer LOS. These data illustrate the importance of tradeoffs associated with antibiotic use, such as unintended increased LOS, when striving for goal-concordant care near the end of life.
The term nonhospice palliative care was developed to describe and differentiate palliative care that is delivered prior to the end of life. The purpose of this article is to better define and clarify this concept using Rodgers's evolutionary concept analysis method. Attributes of nonhospice palliative care include (a) patient- and family-centered care, (b) holistic care, (c) interdisciplinary team, (d) early intervention, (e) quality of life-enhancing, (f) advanced care planning, (g) any age of the patient, (h) at any stage in illness, (i) care coordination, (j) concurrent curative treatment options, and (k) provided by primary and specialist providers. Nonhospice palliative care antecedents are serious illness, education, and access to services; consequences include benefits for the patient, family, provider, and health care system. Offering a clearly defined concept may allow for changes in health care to improve access to these services.
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.