BACKGROUND: Family caregivers are crucial in end-of-life care. However, family caregiving may involve a significant burden with various negative health consequences. Although nurses are in a unique position to support family caregivers at home, little is known about which nursing interventions are effective in this context. Therefore, this study aims to provide insight into nursing interventions currently available to support family caregivers in end-of-life care at home and to describe their effects.
METHODS: A systematic search was conducted in Embase, Medline Ovid, Web of Science, Cochrane Central, CINAHL and Google Scholar. This review included quantitative studies published from January 2003 until December 2018 reporting on nursing interventions to support adult family caregivers in end-of-life care at home. Data were extracted on intervention modalities, intervention components, and family caregivers' outcomes. Methodological quality of the studies was assessed with the Cochrane Risk of Bias Tool.
RESULTS: Out of 1531 titles, nine publications were included that reported on eight studies/eight interventions. Of the eight studies, three were randomised controlled trials, one a pilot randomised trial, one a non-randomised trial, and three were single-group prospective studies. Four intervention components were identified: psychoeducation, needs assessment, practical support with caregiving, and peer support. Psychoeducation was the most commonly occurring component. Nursing interventions had a positive effect on the preparedness, competence, rewards, and burden of family caregivers. Multicomponent interventions were the most effective with, potentially, the components 'needs assessment' and 'psychoeducation' being the most effective.
CONCLUSIONS: Although only eight studies are available on nursing interventions to support family caregivers in end-of-life care at home, they show that interventions can have a positive effect on family caregivers' outcomes. Multicomponent interventions proved to be the most successful, implying that nurses should combine different components when supporting family caregivers.
L’approche des soins palliatifs centrée sur la personne malade oblige à établir des partenariats entre cette dernière, les soignants, la famille, les professionnels sociaux et les bénévoles d’accompagnement. La communication qui se décline dans le dialogue, l’écoute, l’instauration d’une relation de confiance, l’observation des comportements et du langage corporel est essentielle face à l’incertitude et à un questionnement existentiel du malade et de ses proches. À domicile, comme en témoigne cette infirmière expérimentée, ces questionnements convoquent les soignants dans leur professionnalisme et leur humanité.
BACKGROUND: Most people in the United States and other countries cite their preferred location of death as their homes. However, intractable symptoms sometimes require hospitalization, especially if significant sedation becomes necessary. For over a decade, Hospice of Central New York has been using compounded phenobarbital suppositories with individuals in whom adequate sedation has not been achieved using sufficient doses of antipsychotics or benzodiazepines but prefer to remain in their homes.
OBJECTIVES: (1) Describe the use of phenobarbital suppositories in homes for the purpose of sedation. (2) Understand patient characteristics of potential users and those in whom suppositories were actually used. (3) Measure time to death after initiating the phenobarbital suppositories.
SETTING: Medicare-certified not-for-profit hospice organization in New York State.
METHOD:: Retrospective case series.
RESULTS: Of 1675 patients enrolled in hospice over an 18-month period, phenobarbital suppositories were placed in the homes of 90 patients for potential use. Suppositories were initiated in 31 of the 90 patients. Agitated delirium was the major symptom for which suppositories were placed and initiated. Both groups had a greater prevalence of cancer diagnoses than the target population. The mean time to death after initiation of phenobarbital suppositories was 38.8 hours. None of the users were hospitalized.
CONCLUSION: The use of compounded phenobarbital suppositories for the purpose of palliative sedation is an alternative for patients and families who desire to remain home despite refractory symptoms.
BACKGROUND: Home-based palliative care is care of the patient in their home, while doctors and other healthcare providers (HCPs) make visits as required. Family involvement naturally cultivates a relationship between HCPs and the family. Once the patient dies and home-based palliative care ends, this relationship is abruptly terminated, which may be challenging to both the family and the HCPs. The objective of this study was to understand the thoughts and opinions of HCPs and families on their encountered loss of relationship at the end of home-based palliative care.
METHODS: Perceptions of 63 participants (32 HCPs and 31 family members) were explored using semi-structured interviews and the qualitative research methodologies of grounded theory. HCPs were interviewed at the Temmy Latner Centre for Palliative Care (TLCPC), a home-based palliative care group of physicians, and 2 hospitals in Toronto, while family members were recruited from TLCPC's records of deceased patients.
RESULTS: Six overarching themes, relating to HCP-family relationship dynamics, the experience of loss of relationship, and potential solutions, were derived from the data: (I) home palliative care is intimate; (II) dissatisfaction is experienced with abrupt relationship ending; (III) families benefit from open communication, especially after patient death; (IV) HCPs recognize the insufficiency in bereavement resources; (V) benefits are recognized for a system to ease loss of relationship, and lastly; (VI) challenges with introducing such a system concern HCP.
CONCLUSIONS: Overall, families and HCPs do not like the loss of relationship post-patient death, and recognize the potential benefits of an approach that would allow for communication going forward.
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming ‘Home’. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could ‘come home’.
La prise en charge d’un patient en fin de vie à son domicile demande une réflexion pluridisciplinaire de tous les intervenants. L’information de la personne et de ses proches ainsi que la prise en compte de tous les aspects de l’accompagnement doivent mener à des prises de décision collégiales. La prise en charge est alors globale autour d’un projet de soins concerté.
PURPOSE: Quality end-of-life care (EoLC) is a key aspect of oncology. Days at home in the last 6 months of life represents a novel, patient-driven quality indicator of EoLC. We measured days at home in a large population of patients with cancer in Ontario, Canada. Trends over time and predictors of more or less time at home were also determined.
METHODS: We conducted a population-based retrospective study using health administrative data linked by unique, encoded identifiers and analyzed at the ICES. Quantile regression was used to determine significant predictors of more or less time at home.
RESULTS: Of 72,987 patients who died of cancer in Ontario, Canada and met our inclusion criteria, the median number of days spent at home in the last 6 months of life was 164 (interquartile range [IQR], 144 to 175 days) of a possible 180 days. Patients with hematologic cancers spent significantly fewer days at home (156; IQR, 134 to 170 days). The strongest predictors of more time at home were male sex (+2.87 days relative to female sex; CI, 2.43 to 3.31 days) and receipt of palliative care before the last 6 months of life (+2.38 days; CI, 1.95 to 2.08 days). Additional predictors included income, age, cancer type, comorbidity burden, and health region. The majority of patients (69.7%) did not die at home.
CONCLUSION: Days at home in the last 6 months of life, obtained from administrative data, can be used as a measure of quality EoLC. Predictors of days at home may prove valuable targets for future policy intervention.
BACKGROUND: Studies have shown that more than half of patients with advanced progressive diseases approaching the end-of-life report pain and that pain relief for these patients is poorest at home compared to other care settings such as acute care facilities and hospice. Although home is the most common preferred place of death, the majority of deaths occur outside the home. Specialist palliative care is associated with improved quality of life, but systematic reviews of RCTs have failed to show a consistent association with better pain relief. The aim of this study was to examine the factors associated with good pain relief at home in the last 3 months of life for people with advanced progressive disease.
METHODS: Data were obtained from the National Bereavement Survey in England, a cross-sectional post-bereavement survey of a stratified random sample of 246,763 deaths which were registered in England from 2011 to 2015. From 110,311 completed surveys (45% response rate), the analysis was based on individual-level data from 43,509 decedents who were cared for at home before death.
RESULTS: Decedents who experienced good pain relief at home before death were significantly more likely to have received specialist palliative care (adjusted OR = 2.67; 95% CI, 2.62 to 2.72) and to have a recorded preferred place of death (adjusted OR = 1.87; 95% CI, 1.84 to 1.90) compared to those who did not. Good pain relief was more likely to be reported by a spouse or partner of the decedents compared to reports from their son or daughter (adjusted OR = 1.50, 95% CI, 1.47 to 1.53).
CONCLUSION: This study indicates that patients at home who are approaching the end-of-life experience substantially better pain relief if they receive specialist palliative care and their preferred place of death is recorded regardless of their disease aetiology.
BACKGROUND: Advance care planning (ACP) is a process where patients express their wishes regarding their future healthcare. Its importance has been increasingly recognised in the past decade. As increasing numbers of elderly people are living in care homes, the aim of this review was to identify the most effective ACP interventions to train/educate all levels of healthcare professionals working in care homes.
DESIGN: A systematic review. Two independent reviewers undertook screening, data extraction and quality assessment.
DATA SOURCES: Searched from inception to June 2018: Ovid Medline, Ovid Medline in process, Ovid Embase, Cochrane Central Register of Controlled Trials, EBSCO Cinahl and Ovid PsycINFO.
RESULTS: Six studies were included: three before and after studies, one cluster randomised controlled trial (RCT), one non-blinded RCT and one qualitative study. Five studies reported on ACP documentation, three on impact on ACP practice and three studies on healthcare-related outcomes. All quantitative studies reported an improvement in outcomes. In the three studies reporting on health-related outcomes, one showed significant reductions in hospitalisation rate, days and healthcare costs; one reported significant reductions in hospital deaths; and the third showed reductions in hospital days and deaths. A meta-analysis could not be performed due to the heterogeneity of the outcome measures. The included qualitative study highlighted perceived challenges to implementing an educational programme in the care home setting.
CONCLUSION: There is limited evidence for the effectiveness of ACP training for care home workers. More well-designed studies are needed.
BACKGROUND: dying in one's preferred place is a quality marker for end-of-life care. Little is known about preferred place of death, or the factors associated with achieving this, for people with dementia.
AIMS: to understand preferences for place of death among people with dementia; to identify factors associated with achieving these preferences.
POPULATION: adults with a diagnosis of dementia who died between December 2015 and March 2017 and who were registered on Coordinate My Care, an Electronic Palliative Care Coordination System.
DESIGN: retrospective cohort study.
ANALYSIS: multivariable logistic regression investigated factors associated with achieving preferred place of death.
RESULTS: we identified 1,047 people who died with dementia; information on preferred and actual place of death was available for 803. Preferred place of death was most commonly care home (58.8%, n = 472) or home (39.0%, n = 313). Overall 83.7% (n = 672) died in their preferred place. Dying in the preferred place was more likely for those most functionally impaired (OR 1.82 95% CI 1.06-3.13), and with a ceiling of treatment of 'symptomatic relief only' (OR 2.65, 95% CI 1.37-5.14). It was less likely for people with a primary diagnosis of cancer (OR 0.52, 95% CI 0.28-0.97), those who were 'for' cardio-pulmonary resuscitation (OR 0.32, 95% CI 0.16-0.62) and those whose record was created longer before death (51-250 days (ref <50 days) OR 0.60, 95% CI 0.38-0.94).
CONCLUSIONS: most people with dementia want to die in a care home or at home. Achieving this is more likely where goals of treatment are symptomatic relief only, indicating the importance of advance care planning.
BACKGROUND: While the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them. Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK.
METHODS: This paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life and wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval.
DISCUSSION: This study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care.
Patients with hematologic malignancies (HMs) often receive aggressive end-of-life care and less frequently use hospice. Comprehensive longitudinal reporting on place of death, a key quality indicator, is lacking. Deidentified death certificate data were obtained via the National Center for Health Statistics for all HM deaths from 1999 to 2015. Multivariate regression analysis (MVA) was used to test for disparities in place of death associated with sociodemographic variables. During the study period, there were 951 435 HM deaths. Hospital deaths decreased from 54.6% in 1999 to 38.2% in 2015, whereas home (25.9% to 32.7%) and hospice facility deaths (0% to 12.1%) increased (all P < .001). On MVA of all cancers, HM patients had the lowest odds of home or hospice facility death (odds ratio [OR], 0.55; 95% confidence interval, 0.54-0.55). Older age (40-64 years: OR, 1.34; =65 years: OR, 1.89), being married (OR, 1.62), and having myeloma (OR, 1.34) were associated with home or hospice facility death, whereas being black or African American (OR, 0.68), Asian (OR, 0.58), or Hispanic (OR, 0.84) or having chronic leukemia (OR, 0.83) had decreased odds of dying at home or hospice (all P < .001). In conclusion, despite hospital deaths decreasing over time, patients with HMs remained more likely to die in the hospital than at home.
La possibilité pour les personnes gravement malades de terminer leur vie à domicile constitue un objectif à atteindre pour le gouvernement français et celui du Québec (plans 2015-2018.fr ; 2015-2020. qc). A cet effet, en 2016, la loi Claeys-Leonetti a été instituée en France (Editeur officiel de la République française, 2016). Au Québec, la loi concernant les soins de fin de vie a été votée en 2014 (Editeur officiel du Québec, 2014). Cette dernière permet aux personnes en fin de vie de demeurer chez elles, si elles le désirent, en disposant de ressources qui améliorent leur qualité de vie tout en réduisant leur vulnérabilité. Toutefois, la réalisation de cet objectif soulève d'importants enjeux comme l'épuisement des proches, la fragilisation du lien social pouvant mener à l'isolement social, et les limites du bénévolat en soins palliatifs. Afin de composer avec ces enjeux, le Québec (Qc) et la France (Fr) sont confrontés à la nécessité de faire évoluer leur modèle de soins palliatifs et d'accompagnement en fin de vie.
OBJECTIFS - Chez les patients en fin de vie ou en soins palliatifs à domicile, la permanence des soins en cas d'urgence reste une difficulté. Encouragées par le plan national pour le développement des soins palliatifs, les fiches SAMU pallia regroupent des informations essentielles concernant le patient et sont transmises au centre 15 de la zone de résidence du patient. Notre étude a pour but d'explorer l'utilisation de la Fiche SAMU pallia en Ille et Vilaine.
MÉTHODE - D'une part, nous avons recueilli et analysé les fiches SAMU pallia ainsi que les appels reçus les concernant au SAMU 35 sur une période de 6 mois. D'autre part, nous avons interrogé par entretiens semi dirigés les acteurs de la fiches SAMU Pallia : régulateurs et médecins rédacteurs.
RÉSULTATS - 173 fiches ont été analysées, permettant une photographie de leur utilisation. 69 appels ont été reçus, et sur 26 appels la fiche SAMU Pallia a participé à la décision du régulateur. Malgré la méconnaissance de l'outil, entraînant un déclenchement souvent tardif, la fiche SAMU pallia est bien acceptée par ses utilisateurs. Elle représente un support de discussion avec les patients et les équipes au sujet de la fin de vie, permettant de rassurer, d'anticiper, d'aider les régulateurs lors des prises de décision. Ces derniers rappellent l'importance de clarifier les propositions de prise en charge en cas d'aggravation.
CONCLUSION - Ces résultats satisfaisants positionnent la fiche SAMU pallia comme un outil supplémentaire dans la permanence des soins chez les patients en soins palliatifs à domicile.
Origine : BDSP. Notice produite par BIUSANTE o98R0xoG. Diffusion soumise à autorisation
INTRODUCTION : L'HAD est l'un des acteurs principaux dans le champ de la prise en charge de patients en fin de vie. Avec plus du quart de son activité consacré aux soins palliatifs, l'HAD est une ressource potentielle pour le domicile, pour les établissements médico-sociaux et sociaux dans le cadre d'un accompagnement de personnes en fin de vie.
MÉTHODES : une étude descriptive rétrospective monocentrique a été effectuée, les dossiers de 130 patients décédés en HAD sur l'année 2016, déclarés en soins palliatifs, ont été analysé.
RÉSULTATS : de la totalité des patients décédés en HAD en 2016,96,3% ont été déclarés en soins palliatifs. La moyenne d'âge est de 78,9 ans, les patients pris en charge pour une pathologie cancéreuse sont plus jeunes avec une moyenne d'âge à 75 ans et les patients décédés dans un contexte de polypathologie sont plus âgé, la moyenne d'âge étant de 89 ans. 23% des séjours sont des séjours très courts.
Origine : BDSP. Notice produite par BIUSANTE pC8AR0xp. Diffusion soumise à autorisation
PURPOSE: Providing specialized palliative care support to elderly patients in rural areas can be challenging. The purpose of this study was to gain a preliminary understanding of the experience of using mobile web-based videoconferencing (WBVC) for conducting in-home palliative care consults with elderly rural patients with life-limiting illness.
METHODS: This was a descriptive, exploratory, proof-of-concept study with a convenience sample of 10 WBVC visits. A palliative care clinical nurse specialist (PC-CNS), in the home with the patient/family and home care nurse (HC-N), used a laptop computer with webcam and speakerphone to connect to a distant palliative care physician consultant (PC-MD) over a secure Internet connection. Data was collected using questionnaires, interviews, and focus groups.
RESULTS: Analysis of qualitative data revealed four themes: communication, logistics, technical issues, and trust. Participants reported they were comfortable discussing concerns by WBVC and felt it was an acceptable and convenient way to address needs. Audiovisual quality was not ideal but was adequate for communication. Use of WBVC improved access and saved time and travel. Fears were expressed about lack of security of information transmitted over the Internet.
CONCLUSIONS: Using WBVC for in-home palliative care consults could be an acceptable, effective, feasible, and efficient way to provide timely support to elderly rural patients and their families. Having a health care provider in the home during the WBVC is beneficial. WBVC visits have advantages over telephone calls, but limitations compared to in-person visits, suggesting they be an alternative but not replacement for in-person consultations.
Background: Although studies suggest that most people prefer to die at home, not enough is known about place of death patterns by cause of death considering sociodemographic factors. The objective of this study was to determine the place of death in the population and to analyze the sociodemographic variables and causes of death associated with home as the place of death.
Methods: Cross-sectional population-based study. All death certificate data on the residents in Spain aged 15 or over who died in Spain between 2012 and 2015 were included. We employed multinomial logistic regression to explore the relation between place of death, sociodemographic variables and cause of death classified according to the International Classification of Diseases, 10th revision, and to conditions needing palliative care.
Results: Over half of all deaths occurred in hospital (57.4%), representing double the frequency of deaths that occurred at home. All the sociodemographic variables (sex, educational level, urbanization level, marital status, age and country of birth) were associated with place of death, although age presented the strongest association. Cause of death was the main predictor with heart disease, neurodegenerative disease, Alzheimer's disease, dementia and senility accounting for the highest percentages of home deaths.
Conclusions: Most people die in hospital. Cause of death presented a stronger association with place of death than sociodemographic variables; of these latter, age, urbanization level and marital status were the main predictors. These results will prove useful in planning end-of-life care that is more closely tailored to people's circumstances and needs.
BACKGROUND: Little is known about the place of death of patients with cancer in Eastern Mediterranean countries including Egypt, where palliative care is underdeveloped. Identifying the preferred place of death (PPoD) is important for the development of appropriate palliative care models in these countries.
OBJECTIVES:: To know the PPoD of Egyptian patients with incurable cancer and their family caregivers (FCGs) and to determine the factors that may impact their preferences.
METHODS:: An observational cross-sectional study that included 301 dyads of patients with incurable cancer and one of their FCGs. A questionnaire was designed to collect data about the characteristics of patients and FCGs as well as their preferences.
RESULTS: The majority of dyads (272/301, 90.4%) answered the PPoD question. Home was the PPoD in 93% of patients and 90.1% of FCGs ( P = .218). The congruence between patients' and FCGs' PPoD was 92.7% (κ = 0.526). In multivariate analysis, poorer performance status (Eastern Cooperative Oncology Group 3 or 4) and full employment of FCGs associated significantly with patients' preference to die in hospital (odds ratio [OR] = 3.015 [95% confidence interval [CI]: 1.004-9.054], P = .049 and OR = 4.402 [95% CI: 1.561-12.417], P = .005, respectively), while poorer performance status and nonreferral to the palliative medicine unit were associated with FCGs' preference of hospital death (OR = 2.705 [95% CI: 1.105-6.626], P = .029 and OR = 2.537 [95% CI: 1.082-5.948], P = .032, respectively).
CONCLUSIONS: The results of the current study suggest that home is the PPoD for the vast majority of Egyptian patients with incurable cancer and their FCGs. Palliative care interventions that promote home death of patients with incurable cancer are needed in Egypt.
In general, most of the final year of life is spent at home, although 90% of patients spend some time in hospital and about 55% of all deaths occur there. The burdens and rewards of caring for people in their last year of life are shared between informal carers (relatives and friends or neighbours) and healthcare professionals working in institutions or in the community.
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Background: Days spent at home has recently been identified as an important patient-centered outcome; yet, relatively little is known about time spent at home at the end of life among community-living older persons.
Methods: The analytic sample included 457 decedents from an ongoing cohort study of 754 community-living persons, aged =70 years. Days spent at home were calculated as 180 days minus the number of days in a hospital, nursing home, or hospice facility. The condition leading to death was determined from death certificates and comprehensive assessments.
Results: The median number of days at home was 159 (interquartile range, 125–174). 138 (30.2%) decedents were at home during the entire 6-month period, while 163 (35.7%) were at home for fewer than 150 days. Days at home did not differ significantly by age (P=.922), sex (P=.238), or race/ethnicity (P=.199), but did differ according to the condition leading to death (P=.001), with the lowest value observed for organ failure (150 [106.5–168.5]), highest values for sudden death (177 [172–179]) and cancer (167 [140–174]), and intermedicate values for advanced dementia (164 [118–174]), frailty (160.5 [130–174]), and other conditions (153 [118–175]).
Conclusions: Among community-living older persons, days spent at home in the last six months of life do not differ by age, sex, or race/ethnicity, but are significantly lower for persons dying from organ failure. Additional efforts may be warranted to optimize time spent at home at the end of life, especially among older persons dying from organ failure.