L’HAD permet de prodiguer au domicile des soins lourds et techniques et/ou requérant une importante coordination pluridisciplinaire, non réalisables par les seuls professionnels de ville, dans des conditions de sécurité et de qualité comparables à celles d’un hébergement en établissement de santé, dès lors que sont remplies des conditions de faisabilité. Elle est nécessairement prescrite par un médecin, en accord avec le patient et son entourage. Considérablement développée depuis 20 ans, elle intervient sur tous les départements de métropole et d’outre-mer (en 2019 : 295 établissements).
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The mortality rate from chronic liver disease in the UK is rising rapidly, and patients with advanced disease have a symptom burden comparable to or higher than that experienced in other life-limiting illnesses. While evidence is limited, there is growing recognition that care of patients with advanced disease needs to improve. Many factors limit widespread provision of good palliative care to these patients, including the unpredictable trajectory of chronic liver disease, the misconception that palliative care and end-of-life care are synonymous, lack of confidence in prescribing and lack of time and resources. Healthcare professionals managing these patients need to develop the skills to ensure effective delivery of core palliative care, with referral to specialist palliative care services reserved for those with complex needs. Core palliative care is best delivered by the hepatology team in parallel with active disease management. This includes ensuring that discussions about disease trajectory and advance care planning occur alongside active management of disease complications. Liver disease is strongly associated with significant social, psychological and financial hardships for patients and their carers; strategies that involve the wider multidisciplinary team at an early stage in the disease trajectory help ensure proactive management of such issues. This review summarises the evidence supporting palliative care for patients with advanced chronic liver disease, presents examples of current best practice and provides pragmatic suggestions for how palliative and disease-modifying care can be run in parallel, such that patients do not miss opportunities for interventions that improve their quality of life.
Death rattle occurs during the last days of life, and relatives of those afflicted frequently report that it is very distressful. However, there is no effective treatment for it. The purpose of this study was to investigate the perceptions of Japanese palliative care physicians in clinical practice in Japan. We conducted a nationwide survey of 268 physicians via an anonymous, self-report questionnaire. We assessed pharmacological and non-pharmacological management and anticholinergic agent choice. One hundred eighty-nine physicians (70.5%) returned the questionnaires. Fifty-five participants (29.1%) treating patients with Type-1 (real death rattle) and 36 participants (19%) treating patients with Type-2 (pseudo-death rattle) death rattle reported that they would frequently administer an anticholinergic agent. One-fourth would administer scopolamine butylbromide or scopolamine hydrobromide. In conclusion, more Japanese palliative care physicians thought that anticholinergic agents might be effective for treating Type-1 death rattle rather than Type-2. Further clinical trials of these agents are needed.
Elles affectent 5 % des patients atteints de cancer et 10 % de ceux à un stade métastatique. Leur pronostic vital est péjoratif, souvent inférieur à 6 mois.Les plaies cancéreuses peuvent résulter d’un processus destructif ou prolifératif. Elles ne cicatrisent pas spontanément et reflètent l’état d’avancée du cancer.
L 'affaire de notre confrère de Normandie mis en cause pour avoir utilisé du midazolam à domicile a agi comme un détonateur. Comme une soudaine prise de conscience du fait que l’on meurt aussi chez soi et que l’on doit pouvoir bénéficier des mêmes soins et accompagnement, quel que soit le lieu.
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PURPOSE: Women who experience out-of-hospital cardiac arrest have similar rates of survival to hospital admission as men; however, women are less likely to survive to hospital discharge. We hypothesized that women would have higher rates of "do not attempt resuscitation" (DNAR) orders and that this order would be associated with lower use of aggressive interventions.
METHODS: We identified adult hospital admissions with a diagnosis of cardiac arrest (ICD-9 427.5) from the 2010 California State Inpatient Dataset. Multivariable logistic regression was used to test the association between patient sex and a DNAR order within the first 24 h of admission, adjusting for patient demographic characteristics and comorbid medical conditions. In secondary analysis, procedures performed after establishment of DNAR order and survival to hospital discharge were compared by sex.
FINDINGS: We analyzed 6562 patients (44% women, 56% men) who experienced out-of-hospital cardiac arrest and survived to hospital admission. In unadjusted analysis, more women than men had establishment of a DNAR order during the first 24 h of admission (23.4% versus 19.3%; P < 0.01). After adjusting for age, race, and comorbid conditions, women remained significantly more likely to have a DNAR order established during the first 24 h of their hospital admission after cardiac arrest compared with men (odds ratio = 1.23; 95% CI, 1.09-1.40). No sex difference was found in procedures used after DNAR order was established.
IMPLICATIONS: Female survivors of cardiac arrest are significantly more likely than men to have a DNAR order established within the first 24 h of in-hospital treatment. The establishment of a DNAR order is associated with patients undergoing fewer procedures than individuals who do not have a DNAR order established. Given that patients who have a DNAR order receive less-aggressive intervention after arrest, it is possible that an early DNAR order may contribute to sex differences in survival to hospital discharge.
Making known one's end-of-life (EOL) care wishes via the processes of advance care planning (ACP) and advance directive (AD) completion is associated with many positive outcomes for patients including lower healthcare costs, greater patient-provider relationship satisfaction, increased quality of life, and more. Despite these benefits, fewer than 30% of patients in the United States engage in ACP or complete ADs. These low numbers are most likely due to several causes, including low self-efficacy and low motivation to engage in the process. Several researchers have examined the persuasive power of using worry to motivate patients to engage in preventive health behaviors. The present study expands upon this body of literature by examining patient intentions to seek information related to ACP and AD after being exposed to stimuli intended to arouse differing levels of worry regarding bad EOL outcomes. Participants (N = 804) were randomly assigned to either the high worry, low worry, or control group and asked to complete a questionnaire examining beliefs and information seeking intentions regarding ACP and AD completion. Additionally, to control for participants' level of trait worry, each participant completed the Penn State Worry Questionnaire, which was treated as a covariate in the final analysis. A repeated measures MANCOVA found a statistically significant increase for the worrying conditions on the participants' intention to seek information about ACP and ADs from time 1 to time 2 for those in the worry experimental conditions. However, those in the control group did not show a statistically significant increase. Additionally, exposure to the high worry condition was predictive of engaging in actual information seeking behavior about EOL care. Results of the experiment indicate worry is associated with greater motivation to engage in information seeking about ACP and AD. This study contributes to the literature on worry as a persuasive mechanism to motivate patients to engage in important preventative health behaviors.
Studio DöBra is a community-based initiative in which children (9 y/o) and older adults (mostly 80+) engaged with topics related to dying, death and loss through shared arts activities (e.g. collage, sculpture, games). In an ageing society, Sweden's end-of-life (EoL) care is increasingly professionalised and specialised, but there is little community involvement. One goal of Studio DöBra was therefore to support community engagement with EoL-related topics. Another goal was to create opportunities for interaction between children and older adults as there are few intergenerational meeting places. Two iterations of Studio DöBra were developed (2016, 2018) in different Swedish cities, utilising a community-based participatory research approach. Project groups comprised first author MK and representatives of community organisations such as meeting places for older adults, after-school centres and artistic organisations. Each iteration engaged eight children and eight older adults in a series of five workshops. This article investigates how children and older adults motivate their participation, their experiences of participating and ways in which they were affected by participation. We also investigate how parents reflect on their child's participation in Studio DöBra. Older adults, children and their parents were interviewed after each Studio DöBra. An inductive qualitative process guided by interpretive description was used to analyse the transcripts. Findings indicate that participants acted as individuals with agency in connecting across generations and in creating spaces for engaging with EoL-topics, not only in Studio DöBra but also in their social networks. Participants reflected on a changing sense of community through new intergenerational connections and social activities, and expressed a desire to maintain these. However, participants indicated sustainability challenges related to lacking agency in maintaining these spaces and sense of intergenerational community, as they rely on support from community organisations.
OBJECTIVES: Delirium is common and distressing in palliative care settings. This survey aims to describe current practice regarding delirium identification in specialist palliative care units (SPCU), such as inpatient hospices, in the UK.
METHODS: An 18-item anonymous online survey was distributed by Hospice UK to their network of clinical leads (n=223), and to their research mailing list (n=228). The survey was also sent to the chair of the Hospice UK executive clinical leads forum for direct dissemination to forum representatives (n=20). Clinical leads and forum representatives were asked to distribute the survey to healthcare staff in their SPCUs.
RESULTS: 220 SPCU staff (48% nurses; 31% doctors; 10% healthcare assistants) completed the survey. Approximately half reported using clinical judgement alone to screen (97/204; 48%) and/or diagnose (124/220; 56%) delirium. Over a third used an assessment tool to screen for delirium (76/204; 37%). The majority (150/220; 68%) reported screening in response to clinical symptoms, while few reported routine on-admission (11/220; 5%) or daily-during-admission (12/220; 6%) screening. Most respondents had received some training on delirium (137/220; 62%). However, 130/220 (59%) said their SPCU did not have a training programme for delirium screening and only 79/220 (36%) reported that their SPCU had delirium clinical guidelines. The main barriers to routine screening included: lack of delirium training, lack of guidelines and complexity of patient's conditions.
CONCLUSION: There is variation in practice for delirium screening and diagnosis in SPCUs. Clinical guidelines for delirium, including consensus on which screening tools to use, are needed for this setting.
Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs.
Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress (“unable to converse for a period of time”), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale.
Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%.
Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.
BACKGROUND: Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults.
OBJECTIVE: Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes.
METHOD: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed.
RESULTS: PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11).
SIGNIFICANCE OF RESULTS: Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.
INTRODUCTION: An electronic resuscitation system, implemented in 2015, within electronic patient records (EPR) at King's College Hospital NHS Foundation Trust was studied, aiming to review and improve decision documentation and communication.
METHOD: The study (January 2018 - June 2018) included all gerontology inpatients with electronic do not attempt cardiopulmonary resuscitation (e-DNACPR) decisions. Cases were identified weekly, followed by retrospective analysis of discharges. Amendments to the electronic system and improvements were implemented between cycles. CYCLE 1: One-hundred and thirty-three patients were included; 85% had an e-DNACPR form; 86% of all forms had senior doctor involvement; 68% evidenced patient/relative discussion; 13% documented multidisciplinary team (MDT) discussion.
INTERVENTIONS: A mandatory 'named nurse' field was added to the form and trust-wide education programme implemented. CYCLE 2: One-hundred and twenty-six patients were included; 100% had an e-DNACPR form; 93% evidenced senior doctor involvement; 71% evidenced patient/relative discussion; 57% documented MDT discussion.
CONCLUSION: Changes to the process and trust-wide education resulted in more robust documentation and communication.
OBJECTIVE: To identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature.
DESIGN: A mixed methods rapid review.
METHODS: PUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned.
OUTCOMES: The impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions.
RESULTS: 18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity.
CONCLUSIONS: This rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.
Le refus de soins interroge les soignants à titre individuel et collectif. Il demande d’être expliqué et compris car il peut s’agir d’une forme d’expression chez certains patients. Ces situations difficiles nécessitent d’avoir une attitude adéquate et notamment de cultiver un travail en équipe pour que soignant et soigné se sentent reconnus et respectés.
Heart failure (HF), a clinical syndrome with variable trajectory has become more common. As people with HF experience functional decline during periods of deterioration in their HF status, or with aging, their needs for palliative care increase. This review considers the palliative aspects of evidence-based HF care, which benefit patients while also addressing the underlying etiology of the HF. We also identify symptoms common to patients with HF and management beyond evidence-based HF care. Prognostic models and tools to identify patients appropriately evaluated by HF specialty experts might help clinicians understand the patient's status. Rather than trying to identify a point at which palliative care should be included in care for a patient with HF, we suggest that identifying specific needs of the patient and family is a better way to target palliative care interventions. We review available publications that have explored integration of palliative care into HF care, and propose an outpatient clinic model that assesses needs and symptoms and directs HF specialist or palliative care based on this assessment.
OBJECTIVES: There is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns.
METHODS: We provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity.
RESULTS: Different models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia.
CONCLUSIONS: ACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.
BACKGROUND: Use of hospice has grown among patients with heart failure; however, gaps remain in the ability of agencies to tailor services to meet their needs.
AIM: This study describes the implementation of a cardiac home hospice program and insights for dissemination to other hospice programs.
DESIGN: We conducted a multimethod analysis structured around the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework.
SETTINGS/PARTICIPANTS: We used electronic medical records for our quantitative data source and interviews with hospice clinicians from a not-for-profit hospice agency (N = 32) for our qualitative data source.
RESULTS: Reach-A total of 1273 participants were enrolled in the cardiac home hospice program, of which 57% were female and 42% were black or Hispanic with a mean age was 86 years. Effectiveness-The cardiac home hospice program increased hospice enrollment among patients with heart failure from 7.9% to 9.5% over 1 year (2016-2017). Adoption-Institutional factors that supported the program included the acute need to support medically complex patients at the end of life and an engaged clinical champion. Implementation-Program implementation was supported by interdisciplinary teams who engaged in care coordination. Maintenance-The program has been maintained for over 3 years.
CONCLUSION: The cardiac home hospice program strengthened hospice clinicians' ability to confidently provide care for patients with heart failure, expanded awareness of their symptoms among clinicians, and was associated with increased enrollment of patients with heart failure over the study period. This RE-AIM evaluation provides lessons learned and strategies for future adoption, implementation, and maintenance of a cardiac home hospice program.
Objectives: Common terminal phase symptoms include pain, dyspnoea, anxiety, terminal restlessness, nausea and noisy breathing. This study identified the proportion of community pharmacies across two Australian states stocking medicines useful in managing terminal phase symptoms, while exploring factors considered predictive of pharmacies carrying these medicines.
Methods: Community pharmacies from across the states of New South Wales (NSW) and South Australia (SA) were concurrently mailed a survey. Respondents were asked questions relating to medicines stocked, expiry date of stock, awareness of people with palliative care needs and demographic characteristics of the pharmacy. A ‘prepared pharmacy’ was defined as a pharmacy that held medicines useful in the management of terminal phase symptoms.
Results: The proportion of prepared pharmacies across NSW and SA was 21.9%. Multiple logistic regression demonstrated eight predictors of prepared pharmacies, of which awareness of people with palliative needs using their service was the strongest.
Conclusions: One-fifth of community pharmacies carry formulations useful in managing terminal phase symptoms. The main factor associated with this was awareness of people with palliative needs using the pharmacy. Strategies that engage with pharmacists in anticipation of the terminal phase are critical, supporting people with palliative needs to remain at home to die, if desired.
OBJECTIVE: This study explored how built space plays out in palliative care, focusing on spatial aspects that could support or hamper patients', relatives' and caregivers' well-being.
METHODS: This study was conducted in a freestanding small-scale hospice combining a residential part for eight guests with a day-care part for groups of about five persons. Observations were combined with semistructured, individual interviews with eight guests (sometimes accompanied by relatives) and three focus-group interviews with staff, volunteers and relatives. All interviews were audio-recorded and transcribed verbatim. Data were analysed based on the Qualitative Analysis Guide of Leuven.
RESULTS: The most important spatial aspects that impact on physical and social well-being in palliative care turned out to be the building scale and physical proximity. The small-scale setting counters the (often negative) association of palliative care with hospital environments. When the medical condition of the guest allows, it makes communal or outdoor spaces reachable, which enhances emotional and social well-being. In worse conditions, it still makes that care and nature are always nearby. The compactness of communal spaces intensifies social contacts.
CONCLUSIONS: The building scale and physical proximity play out in the relationship between the building and its surroundings, between the residential and the day-care parts and among people within the building. Future research could investigate to what extent these spatial aspects are relevant in more conventional palliative care units or even in general hospital wards.