Live discharges from hospice may occur because of patient choice or provider choice. However, when discharges occur before death, patients and families may feel abandoned and left to manage care needs previously provided by hospice. The purpose of this systematic review was to better understand the nature of live discharges, including frequency, patient characteristics, and hospice characteristics. Of 44 studies identified for review, 13 met inclusion criteria and were published between 2008 and 2018. Live discharge rates varied from 5% to 23%. Patients’ prehospice characteristics varied widely based on diagnosis, comorbidities, gender, race, and ethnicity. Hospice characteristics indicated that the likelihood of a live discharge was increased for patients enrolled in for-profit hospices and in rural areas. Only 2 studies captured the patient/family perspective of the live discharge experience, finding that the loss of hospice support was fraught with difficulties. A need for further study of the live discharge experience and the practices of hospices with high live discharge rates was identified.
BACKGROUND: Palliative transport is transport home of patients requiring critical care transport support with expectation of imminent death. Many parents prefer their child's death at home; evidence suggests death in the preferred location improves bereavement outcomes. Little is known about the clinical and demographic diversity of patients receiving palliative transport or the perspectives of participating staff.
AIM: The objectives of the present study were to (1) characterize demographic and clinical factors involved in palliative transport, (2) identify challenges encountered, and and (3) ascertain staff perspectives.
DESIGN: Ten-year retrospective chart review and cross-sectional staff survey using study-specific questionnaire.
SETTING/PARTICIPANTS: Twenty-three patients had palliative transport from a tertiary pediatric hospital from 2004 to 2013, of which 12 met inclusion criteria. Survey responses from 22 participating staff were received.
RESULTS: The cohort of 12 patients was 58% female, with a mean (range) age of 5.5 (0.01–22) years; racial composition was not significantly different than the palliative care clinical census over the same time period. Distances under 30 miles accounted for 50% of palliative transports. The majority of patients (75%) died within 2 days of palliative transport. Six unanticipated events are described. Staff reported palliative transport as a positive experience, regarding it as an important job component. However, 63% were dissatisfied or undecided about the plan should the patient die enroute, and 48% experienced some level of dissatisfaction with communication.
CONCLUSION: Palliative transport is a feasible option for some patients. Staff experienced palliative transport as valuable, although process concerns were noted. This study underscores the importance of preparedness, training, and education for palliative transports.
Background: Discharging patients from inpatient palliative care units to the community is aligned with patients' desires to be cared for and die at home. However, there is little research examining patient outcomes after discharge.
Objective: To describe the outcomes of patients discharged from an inpatient palliative care unit.
Design: A single-institution retrospective cohort study using medical record data linked to regional acute care hospital and home care data.
Setting/Participants: Patients (n = 75) discharged to the community over a one-year period from a 31-bed inpatient palliative care unit in an academic continuing care facility.
Measurements: Survival, postdischarge hospitalizations and emergency department visits, and place of death.
Results: Patients discharged to the community had poor prognosis. Over one-third had a discharge Palliative Performance Score <50. The median survival after discharge was 96 days, and 36% of decedent patients died in an acute care hospital. Thirteen percent of patients were hospitalized, and 23% visited an emergency department within 30 days of discharge, often for reasons that could have been managed in the community. Certain groups of patients were at greater risk of acute care use and in-hospital deaths, including younger patients, patients with nonmalignant diseases, and patients discharged home or retirement home, compared to long-term care settings.
Conclusions: Patients discharged from an inpatient palliative care setting are at risk of postdischarge hospitalizations, emergency department visits, and in-hospital deaths, despite having community supports in place. Variations in outcomes can point to groups of patients who may require greater intensity of supports postdischarge.
CONTEXT: Although the literature on transitions from hospital to the community is extensive, little is known about this experience within the context of palliative care (PC).
OBJECTIVE: We conducted a systematic review to investigate the impact of receiving palliative care in hospital on the transition from hospital to the community.
METHODS: We systematically searched MEDLINE, Embase, ProQuest and CINAHL from 1995 until April 10, 2018, and extracted relevant references. Eligible articles were published in English, included adult patients receiving PC as inpatients and explored transitions from hospital to the community.
RESULTS: 1514 studies were identified and 8 met inclusion criteria. Studies were published recently (>2012; n=7, 88%). Specialist PC interventions were delivered by multi-disciplinary care teams as part of inpatient PC triggers, discharge planning programs, and transitional care programs. Common outcomes reported with significant findings consisted of length of stay (n=5), discharge support (n=5), and hospital readmissions (n=6) for those who received inpatient PC. Most studies were at high risk of bias.
CONCLUSION: Heterogeneity of study designs, outcomes, findings, and poor methodological quality render it challenging to draw conclusions regarding PC's impact on the transition from hospital to home. Further research should use standardized outcomes with randomized controlled trial and/or propensity matched cohort designs.
BACKGROUND: The importance of medication reconciliation and the pharmacist's role within the interdisciplinary team at the point of transition to home hospice is understudied. A transitions of care pilot initiative was developed to streamline the transition for patients at end of life from inpatient cancer center care to home hospice. The initiative consisted of using a hospice discharge checklist, pharmacist-led discharge medication reconciliation in consultation with the primary team responsible for inpatient care, review of discharge prescriptions, and facilitation of bedside delivery of discharge medications.
METHODS: This was a single-center, prospective, pilot initiative. The objectives of this study were to characterize pharmacist interventions at the time of transition, to assess changes in hospice organizations' perceptions of discharge readiness, and to evaluate differences in representation rates with the implementation of the pilot discharge process.
RESULTS: Fifteen patients in the preimplementation period and 12 patients in the postimplementation period were included. One hundred eleven pharmacist interventions were captured, an average of 9.3 interventions per patient, with an acceptance rate of 82.9% by providers. There was a statistically significant ( P = .035) improvement in hospice organizations' perceptions of discharge readiness. There was no difference in 30-day representation rates postdischarge ( P = 1).
CONCLUSION: This well-received pilot initiative demonstrated an improvement in local hospice's perception of patient readiness for discharge and a high percentage of accepted pharmacist interventions during discharge medication reconciliation. A larger sample size of patients and longer follow-up period may be needed to demonstrate statistically significant improvements in representation rates postintervention.
Veuve depuis plusieurs années, Fang Xiuying, 68 ans, est née à Huzhou, dans la région du Fujian où elle travaillait comme ouvrière agricole. Elle a souffert les dernières années de sa vie de la maladie d’Alzheimer. Après avoir été hospitalisée en 2015, elle a été renvoyée chez elle pour y mourir, entourée de sa famille. Mais la mort est longue à venir…
Introduction: La sortie de l’hôpital en fin de vie est un processus complexe qui exige une organisation anticipée par les équipes de soins palliatifs. La transition entre l’environnement hospitalier et le domicile est influencée par la culture, l’économie et le système de santé : c’est ce qui relève des observations menées lors d’une recherche dans le milieu des soins palliatifs au Brésil et en France.
Objectif: Analyser le processus de la sortie d’unité de soins palliatifs en direction du domicile, à partir d’expériences de patients et de familles, en confrontant les expériences brésiliennes et françaises.
Matériel et méthode: Une étude de nature ethnographique a été menée durant huit mois auprès de deux équipes de soins palliatifs, à Porto Alegre et à Grenoble, incluant six patients atteints d’un cancer avancé et de quatre de leurs aidants naturels.
Résultats: Dans les deux pays, les principales difficultés liées au retour à domicile sont l’épuisement des aidants et les craintes par rapport au décès. Mais alors qu’en France toute l’organisation se concentre pour privilégier la sortie, en offrant des structures d’appui pour faciliter la prise en charge, au Brésil on observe soit des familles devenues les soignants de leur parent en fin de vie, soit des recours à la justice pour que l’hôpital garde le patient.
Conclusion: En France, même avec la présence d’un réseau professionnel, les familles ont des difficultés pour gérer la fin de vie à la maison et de plus en plus les établissements médicosociaux se substituent au domicile. Au Brésil, il est nécessaire désormais de mieux structurer et développer les services de support au domicile et d’étudier des alternatives appropriées. C’est en prenant en compte les particularités locales, et les besoins des patients et de leurs aidants, en regard des évolutions sociétales qu’il sera possible de promouvoir un accompagnement jusqu’à la mort moins difficile pour tous.
Introduction: Both in the UK and internationally, discharge from an intensive care unit to home for end of life care is a rare and challenging occurrence. These challenges include clinicians' ability to identify appropriate patients in whom it is possible to communicate with about their wishes and preferences, the critical nature of their condition and the interface between hospital and community services.
Method: We present a case report of a patient who had been admitted to hospital with a myocardial infarction and subsequently suffered a cardiac arrest, from which he was successfully resuscitated. Subsequently, he suffered multi-organ failure, but despite treatments, the ceiling of care was reached. With a poor prognosis, medical and nursing staff engaged in advance care planning to determine his wishes and preferences at the end of life and to facilitate his discharge from the intensive care unit to his home.
Conclusion: This case study has highlighted that through good communication amongst patients, families and professionals and collaborative working across boundaries and organisations, appropriate patients in the critical care setting can have a real choice regarding where they wish to be cared for and die at the end of their life.
BACKGROUND: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge.
AIM: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers.
SETTING/PARTICIPANTS: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted.
RESULTS: Current barriers to supporting carers at hospital discharge were an organisational focus on patients' needs, what practitioners perceived as carers' often 'unrealistic expectations' of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition.
CONCLUSION: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.
Purpose: Patients with advanced cancer experience potentially burdensome transitions of care after hospitalizations. We examined predictors of discharge location and assessed the relationship between discharge location and survival in this population.
Methods We conducted a prospective study of 932 patients with advanced cancer who experienced an unplanned hospitalization between September 2014 and March 2016. Upon admission, we assessed patients' physical symptoms (Edmonton Symptom Assessment System) and psychological distress (Patient Health Questionnaire-4). The primary outcome was discharge location (home without hospice, postacute care [PAC], or hospice [any setting]). The secondary outcome was survival.
Results Of 932 patients, 726 (77.9%) were discharged home without hospice, 118 (12.7%) were discharged to PAC, and 88 (9.4%) to hospice. Those discharged to PAC and hospice reported high rates of severe symptoms, including dyspnea, constipation, low appetite, fatigue, depression, and anxiety. Using logistic regression, patients discharged to PAC or hospice versus home without hospice were more likely to be older (odds ratio [OR], 1.03; 95% CI, 1.02 to 1.05; P < .001), live alone (OR, 1.95; 95% CI, 1.25 to 3.02; P < .003), have impaired mobility (OR, 5.08; 95% CI, 3.46 to 7.45; P < .001), longer hospital stays (OR, 1.15; 95% CI, 1.11 to 1.20; P < .001), higher Edmonton Symptom Assessment System physical symptoms (OR, 1.02; 95% CI, 1.003 to 1.032; P < .017), and higher Patient Health Questionnaire-4 depression symptoms (OR, 1.13; 95% CI, 1.01 to 1.25; P < .027). Patients discharged to hospice rather than PAC were more likely to receive palliative care consultation (OR, 4.44; 95% CI, 2.12 to 9.29; P < .001) and have shorter hospital stays (OR, 0.84; 95% CI, 0.77 to 0.91; P < .001). Patients discharged to PAC versus home had lower survival (hazard ratio, 1.53; 95% CI, 1.22 to 1.93; P < .001).
Conclusion: Patients with advanced cancer who were discharged to PAC facilities and hospice had substantial physical and psychological symptom burden, impaired physical function, and inferior survival compared with those discharged to home. These patients may benefit from interventions to enhance their quality of life and care.
The implementation of effective geriatric palliative care (PC) services will be increasingly important as the number of patients ages =65 years continues to grow. However, literature characterizing the utilization of PC services by older adults remains scant. The objective of these analyses was to characterize the nature and outcomes of PC services for older adults. A retrospective analysis of records of inpatient PC consultations provided to patients =65 years at an academic hospital was performed (N = 743). Logistic regressions identified factors associated with goals of care discussions (GOC), end-of-life (EOL) coordination, and hospital readmission. Differences between older adult subgroups (i.e., 65–84 years and 85 years and older) were also examined. Discharge to home was associated with higher odds of readmission and discharge to hospice or having a GOC discussion was associated with lower odds of readmission. Those patients who were 85 years or older were significantly less likely to have cancer or to be referred for pain management, and more likely to be referred for GOC discussions and discharged to hospice. This study revealed dynamic factors associated with PC consultation for older adults. GOC discussions in initial PC consultations for older patients might reduce the odds of hospital readmission. Additionally, the needs of patients ages 85 and older appear distinct from the traditional PC cancer model.
BACKGROUND: Many people would choose to die at home, and this can be an option for intensive care patients. However, there is limited exploration of the impact on the family.
AIM: To gain insight into family members' experiences when an adult intensive care unit patient is taken home to die.
METHODS: Methodology is qualitative description, utilising purposeful sampling, unstructured interviews and thematic analysis. Four participants, from two different families were interviewed. The setting was a tertiary level Intensive Care Unit in New Zealand.
FINDINGS: The experience was described as a kaleidoscope of events with two main themes: 'value' family member's found in the patient going home, and their experience of the 'process'. 'Value' subthemes: going home being the patient's own decision, home as an end-of-life environment, and the patient's positive response to being at home. 'Process' subthemes: care and support received, stress of a family member being in intensive care, feeling that everything happened quickly, and concerns and uncertainties.
CONCLUSION: Going home to die from the intensive care unit can be a positive but challenging experience for the family. Full collaboration between the patient, family and staff is essential, to ensure the family are appropriately supported.
BACKGROUND: there are many people with advanced cancer who are cared for in the community, though little is known about patients' and family members' lived experiences during discharge from hospital to home.
OBJECTIVES: to describe the experiences of the patient-family caregiver dyad during the transition from hospital to home at a National Cancer Institute in Colombia.
METHODS: a descriptive phenomenological approach was taken for this study.
RESULTS: Forty-one nominal codes emerged, comprising seven themes that describe the experience of the individual in palliative care and their family caregiver during the transition from hospital to home care.
CONCLUSIONS: the patient-family caregiver dyad have to deal with symptoms while being confronted with the prognosis and progression of the disease at home. The economic costs in acquiring supplies needed for proper care provision are considerable. In addition there are administrative fees from consultations and accessing the health services. Emotional and spiritual support for the dyad is required.
BACKGROUND: Increasing importance is being placed on the coordination of services at the end of life.
AIM: To describe decision-making processes that influence transitions in care when approaching the end of life.
DESIGN: Qualitative study using field observations and longitudinal semi-structured interviews.
SETTING/PARTICIPANTS: Field observations were undertaken in three sites: a residential care home, a medical assessment unit and a general medical unit in New Zealand. The Supportive and Palliative Care Indicators Tool was used to identify participants with advanced and progressive illness. Patients and family members were interviewed on recruitment and 3-4 months later. Four weeks of fieldwork were conducted in each site. A total of 40 interviews were conducted: 29 initial interviews and 11 follow-up interviews. Thematic analysis was undertaken.
FINDINGS: Managing risk was an important factor that influenced transitions in care. Patients and health care staff held different perspectives on how such risks were managed. At home, patients tolerated increasing risk and used specific support measures to manage often escalating health and social problems. In contrast, decisions about discharge in hospital were driven by hospital staff who were risk-adverse. Availability of community and carer services supported risk management while a perceived need for early discharge decision making in hospital and making 'safe' discharge options informed hospital discharge decisions.
CONCLUSION: While managing risk is an important factor during care transitions, patients should be able to make choices on how to live with risk at the end of life. This requires reconsideration of transitional care and current discharge planning processes at the end of life.
Ce dossier contient les articles suivants : jouer et se recréer en isolement protecteur : un défi à relever ; du loisir aux activités collectives à l'école primaire avec des élèves à besoins éducatifs particuliers ; Squat & Escale : 2 espaces de vie à Gustave Roussy ; Rémi en joëlette ; sur les séjours de répit : l'inattendu ; le jeu est le travail de l'enfant ; avoir le loisir de... ; jouer... à loisir ; à la maison avec l'HAD ; à quoi bon grimper... aux murs, aux arbres, aux rochers ? ; dans les hauteurs du Soin-Etudes.
L'auteure est une infirmière et mène actuellement un service de soins infirmiers en dehors des heures de passage dans le sud-ouest de Londres. Dans cet article, elle expose ses réflexions sur ce qu'un clinicien planifiant le retour à domicile d'un patient en fin de vie doit garder à l'esprit.
Les auteures présentent une étude de cohorte rétrospective qui décrit la taille et les caractéristiques de la population en soins intensifs qui pourrait potentiellement être transférée à domicile pour mourir si elle en exprimait le souhait. L'étude conclut notamment qu'un peu plus de 20 % des patients qui meurent en soins intensifs pourraient être transférés chez eux pour mourir.
Les soins palliatifs à un enfant en période néonatale nécessitent un accompagnement spécifique. L'hospitalisation à domicile pédiatrique peut permettre d'accompagner un retour au domicile du nouveau-né avec un projet personnalisé. L'évaluation, la prévention et le traitement de la douleur ainsi que le soutien apporté aux parents sont essentiels.
A partir de situations concrètes, sont retracées les trente années de réflexion pluridisciplaire, depuis l'avènement du diagnostic anténatal au coeur des maternités. Cet ouvrage apporte des témoignages et des réflexions sur le deuil périnatal. Des professionnels ainsi que des parents touchés par le deuil apportent leur éclairage.
[Adapté du résumé éditeur]