VigiPallia : Résultats

Recherches dans le fonds documentaire/
Toutes les bibliographies thématiques/
R/
Rapports de l'ONFV

##titre_notice##

##grp1_nom##

- ##grp2_nom## : ##grp2_synthese_detail##

##reservable_synthese##

##detail_synthese##

MALADIE NEUROLOGIQUE

0 sélectionnée(s) / 162 réponse(s)

(1) 2 3 4 ... 9 > »

End-of-life measures in Huntington disease - HDQLIFE meaning and purpose, concern with death and dying, and end of life planning

CARLOZZI, Noelle E. ; BOILEAU, Nicholas R. ; PAULSEN, Jane S. ; PERLMUTTER, Joel S. ; LAI, Jin-Shei ; HAHN, Elizabeth A. ; MCCORMACK, Michael K. ; NANCE, Martha A. ; CELLA, David ; BARTON, Stacey K. ; DOWNING, Nancy R.
Journal of neurology, 12/06/2019, p. 1-17

Document en ligne

Thème : Médecine.

FIN VIE ; MALADIE NEUROLOGIQUE ; PRISE EN CHARGE ; ECHELLE MESURE ; EVALUATION ; SOIN ; PLANIFICATION

BACKGROUND AND PURPOSE: Huntington disease (HD) is a progressive neurodegenerative disorder. There are no HD-specific measures to assess for end-of-life (EOL) preferences that have been validated for clinical use. The purpose of this study is to demonstrate reliability and validity of three HD-specific EOL measures for use in and clinical research settings.
METHODS: We examined internal reliability, test-retest reliability, floor and ceiling effects, convergent and discriminant validity, known groups' validity, measurement error, and change over time to systematically examine reliability and validity of the HDQLIFE EOL measures.
RESULTS: Internal consistency and test-retest reliability were >0.70. The measures were generally free of floor and ceiling effects and measurement error was minimal. Convergent and discriminant validity were consistent with well-known constructs in the field. Hypotheses for known groups validity were partially supported (there were generally group differences for the EOL planning measures, but not for meaning and purpose or concern with death and dying). Measurement error was acceptable and there were minimal changes over time across the EOL measures.
CONCLUSIONS: Results support the clinical utility of the HDQLIFE EOL measures in persons with HD.

Origine : PubMed

Palliative care triggers in progressive neurodegenerative conditions - an evaluation using a multi-centre retrospective case record review and principal component analysis

HUSSAIN, Jamilla ; ALLGAR, Victoria ; OLIVER, David
PALLIATIVE MEDICINE, 04/2018, vol.32, n°4, p. 716-725

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

IDENTIFICATION ; MALADIE NEUROLOGIQUE ; DEMARCHE PALLIATIVE ; ROYAUME UNI ; FIN VIE ; FACTEUR ; ETUDE RETROSPECTIVE

Background: The use of specific triggers has been suggested to help identify patients with progressive neurological disease who would benefit from palliative care.
Aim: This study aimed to improve the evidence base for the use of triggers for patients with progressive neurological disease.
Design: An evaluation of palliative care services was undertaken using a retrospective case note review of the timing and presence of triggers in the last 2 years of life.
Setting/participants: A total of 12 specialist palliative care units across the United Kingdom provided data from 300 patients: mean patient age 70 years, 50% male, diagnoses included motor neurone disease 58%, Parkinson’s disease 17% and Parkinson’s Plus syndromes 12%.
Results: There was a high burden of triggers – 17 in the last 2 years of life and 10 in the last 6 months of life. The most frequent triggers were deteriorating physical function, complex symptoms and dysphagia. Four factors were found to explain 64% of the total variance:
Factor 1 – Deterioration in physical function, dysphagia, significant complex symptoms and pain;
Factor 2 – Weight loss and respiratory symptoms;
Factor 3 – Recurrent infections and cognitive decline;
Factor 4 – Aspiration pneumonia.
Cox regression analyses found different triggers were associated with survival from diagnosis versus survival from referral to palliative care. Different triggers were also associated with survival for different neurological conditions.
Conclusion: This study demonstrates that there is a high burden of triggers in the last months and years of life and that these could potentially be reduced to fewer components. Prospective studies assessing which triggers are useful for different conditions are now required.

Origine : PubMed

Advance care plan and factors related to disease progression in patients with spinocerebellar ataxia type 1 - a cross-sectional study in Thailand

GOMUTBUTRA, Patama ; BRANDELAND, Megan
The American journal of hospice and palliative care, 14/05/2019, Pagination inconnue

Document en ligne

Thème : Soins.

THAILANDE ; PLANIFICATION ; SOIN ; MALADIE NEUROLOGIQUE ; ANTICIPATION ; QUALITE VIE

BACKGROUND: Spinocerebellar ataxia type 1 (SCA1) is an autosomal dominant progressive neurodegenerative disease. Few studies have been conducted regarding advance care planning in this population.
OBJECTIVE: This study explores advance care planning preferences of patients with SCA1 and their association with disease progression and quality of life.
METHODS: The study examined 12 Thai patients with SCA1 from 2 families living in Thailand. The advance care plan followed a Gold Standards Framework. The 12 patients were interviewed and recorded in video. The research team evaluated neurocognitive functions as measured by the following tests; Scale for the Assessment and Rating of Ataxia (SARA), Berg Balance Score, Mini-Mental Status Examination, and Digit Span and Category Fluency. The quality of life was measured by a Short-Form Health Survey-36 (SF-36).
RESULTS: Seven of 12 patients with SCA1 rated communication ability as most important for their quality of life. Patients identified becoming a burden on their family members and ventilator dependence as the most undesirable situations. Half of the patients preferred a hospital as their last place of care. Comparing patients prefer hospital to home has significantly high median SARA (23 vs 11.5; P = .03) and low SF-36 (41.4 vs 72.4; P = .02).
CONCLUSIONS: Those patients preferring a hospital for end-of-life care exhibited more physical disability and lower quality of life than those who preferred home care. Making assisted living health-care services in the home more readily available and affordable may alleviate concerns of patients facing more severe physical challenges.

Origine : PubMed

Palliative care for patients with motor neurone disease and their bereaved carers - a qualitative study

MC VEIGH, Clare ; DONAGHY, Colette ; MC LAUGHLIN, Briege ; DICK, Alison ; KAUR, Kiran ; MC CONVILLE, John ; WATSON, Max
BMC palliative care, 26/04/2019, vol.18, n°1, p. 1-8

Document en ligne

Thème : Médecine. Cote : eD03.03.04

DEMARCHE PALLIATIVE ; MALADIE NEUROLOGIQUE ; RECHERCHE QUALITATIVE ; FIN VIE ; IRLANDE DU NORD ; MEDECINE GENERALE ; PATIENT ; PERSONNE ENDEUILLEE

BACKGROUND: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care.
METHODS: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3-24 months previously with a diagnosis of MND. Data were analysed using thematic analysis.
RESULTS: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient.
CONCLUSIONS: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.

Origine : PubMed

Management of prolonged epileptic seizures and status epilepticus in palliative care patients

KÄLVIÄINEN, Reetta ; REINIKAINEN, Matti
Epilepsy and behavior, 24/05/2019, Pagination inconnue

Document en ligne

Thème : Médecine.

DEMARCHE PALLIATIVE ; MALADIE NEUROLOGIQUE ; THERAPEUTIQUE MEDICAMENTEUSE ; PRISE EN CHARGE

Prolonged seizures and status epilepticus (SE) are relevant problems in palliative care. Timely recognition and effective early treatment with first- and second-line antiepileptic drugs (AEDs) may prevent unnecessary hospitalizations. Seizures should be recognized and addressed like any other symptom that causes discomfort or reduces quality of life. Use of alternative AED administration routes (buccal, intranasal, or subcutaneous) may offer possibilities for effective and individualized AED therapy, even during the last days of life. In hospice or home care, however, also intravenous treatment is possible via vascular access devices for long-term use. Aggressive unlimited intensive care unit (ICU) treatment of refractory SE in palliative patients is mostly not indicated. At worst, intensive care can be futile and possibly harmful: death in the ICU is often preceded by long and aggressive treatments. Metastatic cancer, old age, high severity of acute illness, overall frailty, poor functional status before hospital admission, and the presence of severe comorbidities all increase the probability of poor outcome of intensive care. When several of these factors are present, consideration of withholding intensive care may be in the patient's best interests. Anticipated outcomes influence patients' preferences. A majority of patients with a limited life expectancy because of an incurable disease would not want aggressive treatment, if the anticipated outcome was survival but with severe functional impairment. Doctors' perceptions about their patients' wishes are often incorrect, and therefore, advance care planning including seizure management should be done early in the course of the disease. This article is part of the Special Issue "Proceedings of the 7th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures".

Origine : PubMed

Attending to total pain in juvenile Huntington disease - a case report informed by narrative review of the literature

KENDRICK, Lindsey M. ; HUDGELL, Denise ; HELLMAN, Amy ; WEAVER, Meaghann S.
JOURNAL OF PALLIATIVE CARE, 05/04/2019, Pagination inconnue

Document en ligne

Thème : Age de la vie, situations spécifiques liées à la fin de vie.

MALADIE NEUROLOGIQUE ; PEDIATRIE ; DEMARCHE PALLIATIVE ; ETUDE CAS ; SOUFFRANCE GLOBALE

OBJECTIVES: To consider the impact of juvenile Huntington disease (JHD) from a biomedical, symptom burden, and total pain palliative care perspective.
METHODS: This case report was informed by a narrative review of the literature with inclusion of expert opinion from pediatric palliative care, an adult and pediatric neurologist, and a child psychiatrist. Audio-recorded qualitative interview and coauthorship with the pediatric patient's primary caregiver (his mother).
RESULTS: The JHD impacts all domains of child and family function.
SIGNIFICANCE OF RESULTS: Application of the concept of total pain to JHD informs and guides care for this complex, challenging condition.

Origine : PubMed

Requested withdrawal of mechanical ventilation in six patients with motor neuron disease

MESSER, Ben ; ARMSTRONG, Alison ; DORIS, Thomas ; WILLIAMS, Tim
BMJ supportive and palliative care, 03/04/2019, Pagination inconnue

Document en ligne

Thème : Ethique et déontologie.

FIN VIE ; SOIN ; ETHIQUE ; MALADIE NEUROLOGIQUE ; MALADIE RESPIRATOIRE ; ROYAUME UNI ; ARRET THERAPEUTIQUE ; VENTILATION ARTIFICIELLE

OBJECTIVES: Mechanical ventilation (MV) has been shown to improve survival and quality of life in motor neuron disease (MND). However, during the progression of MND, there may come a point when MV is no longer felt appropriate. Association of Palliative Medicine Guidelines have been recently published to help clinicians withdraw MV at the request of patients with MND in a safe and compassionate manner to ensure that symptoms of distress and dyspnoea are minimised.
METHODS: In this report, we discuss the palliative and ventilatory management of six ventilator-dependent patients with MND who had requested the withdrawal of MV as part of their end-of-life care.
RESULTS: We have withdrawn MV from six patients with MND at their request and our practice has been influenced by the Association of Palliative Medicine Guidelines.
CONCLUSION: Withdrawal of MV in MND at a patient's request is challenging but is also a fundamental responsibility of healthcare teams. We discuss the lessons we have learnt which will influence our practice and help other teams in the future.

Origine : PubMed

Inpatients with neurologic disease referred for palliative care consultation

TAYLOR, Breana L. ; O'RIORDAN, David L. ; PANTILAT, Steven Z. ; CREUTZFELDT, Claire J.
Neurology, 23/04/2019, vol.92, n°17, p. e1975-e1981

Document en ligne

Thème : Médecine.

HOSPITALISATION ; MALADIE NEUROLOGIQUE ; DEMARCHE PALLIATIVE ; CONSULTATION ; ETATS-UNIS

OBJECTIVES: To compare characteristics and needs of inpatients with neurologic disease to those with cancer referred for palliative care (PC) consultation.
METHODS: This prospective cohort study used data collected by the Palliative Care Quality Network from January 2013 until December 2016. We compared demographics, reasons for consultation, discharge disposition, Palliative Performance Scale (PPS) score, and outcomes of care among patients with a primary diagnosis of neurologic disease vs cancer.
RESULTS: The most common reason for PC consultation in all patients was assistance with goals of care and advanced care planning. PC consultation was less often requested for pain and symptom management in patients with neurologic disease compared to patients with cancer (13.7% vs 43%, odds ratio 0.3) and more often for assistance with transition to comfort measures only and withdrawal of life-sustaining treatment (19.1% vs 7.1%, odds ratio 1.3). Patients with cancer had higher PPS scores (42.1% vs 23.4%) and were more likely to be discharged home from the hospital, while patients with neurologic disease were more likely to die in hospital.
CONCLUSIONS: Patients with neurologic disease as a reason for PC consultation are more in need of end-of-life care planning and more likely to die in the hospital than those with cancer, suggesting that targeted approaches may best address the needs of each patient population. Our results can direct further research and education in neuropalliative care.

Origine : PubMed

Dans mon coeur vit une étoile

CHAMBAUDE, Mélissa ; SERRE, Noémie ; MARQUES, Sergio
Association ECLAS , 2018 , 53 p.

Thème : Littérature de jeunesse. Cote : 16.01CHA

MALADIE NEUROLOGIQUE ; MORT ; DEUIL ; FRATRIE ; MILIEU SCOLAIRE ; NOURRISSON

Sam, 9 ans, fait sa rentrée dans une nouvelle école et doit affronter de nouveaux copains avec la tristesse d'un petit garçon qui vient de perdre sa petite soeur d'une maladie neurodégénérative.
Nous le suivons dans sa nouvelle vie avec toutes ses questions, ses doutes, ses chagrins, les rencontres qui le consolent, les premières fois sans... Et les sentiments qui l'assaillent à la naissance d'une autre petite soeur.

Palliative care in motor neurone disease - where are we now?

OLIVER, David J.
Palliative care, 2019, vol.12, p. 1-14

Document en ligne

Thème : Médecine. Cote : eD03.02

MALADIE NEUROLOGIQUE ; DEMARCHE PALLIATIVE ; FIN VIE ; PRISE EN CHARGE ; INTERDISCIPLINARITE ; RECOMMANDATION ; PRISE EN CHARGE GLOBALE

Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.

Origine : PubMed

Assisted dying - terminally ill man urges UK law change after police investigate his plans

MAYOR, Susan
BMJ (Clinical research ed.), 07/02/2019, vol.364, p. l631

Document en ligne

Thème : Soins.

PHASE TERMINALE ; MALADIE NEUROLOGIQUE ; ROYAUME UNI ; SUICIDE MEDICALEMENT ASSISTE ; SUISSE

A terminally ill man with motor neurone disease has urged MPs to change the law to allow assisted dying in the UK in an open letter sent on the day of his assisted death in Switzerland, in which he recounted the distress caused to him and his family during a police investigation.
Geoffrey Whaley, 80, was given a diagnosis of motor neurone disease in 2016. With no legal option of assisted dying in the UK, he decided to travel to Dignitas in Switzerland to end his life.
[Début de l'article]

Origine : PubMed

Top ten tips palliative care clinicians should know about caring for patients with neurologic illnesses

MENDLIK, Matthew T. ; MCFARLIN, Jessica ; KLUGER, Benzi M. ; VAUGHAN, Christina L. ; PHILLIPS, Joel N. ; JONES, Christopher A.
JOURNAL OF PALLIATIVE MEDICINE, 02/2019, vol.22, n°2, p. 193-198

Document en ligne

Thème : Médecine. Cote : 00.07JOU

MALADIE NEUROLOGIQUE ; MALADIE PARKINSON ; SCLEROSE LATERALE AMYOTROPHIQUE ; MALADIE ALZHEIMER ; PRISE EN CHARGE

Patients with neurologic illnesses are commonly encountered by palliative care (PC) clinicians though many clinicians feel uncomfortable caring for these patients. Understanding how to diagnose, treat, communicate with, and prognosticate for neurology patients will improve the confidence and competence of PC providers in the neurology setting. This article offers PC providers 10 useful tips that neurologists with PC training think all PC providers should know to improve care for patients with neurologic illness.

Origine : PubMed

The role of palliative care in chronic progressive neurological diseases - a survey amongst neurologists in the Netherlands

WALTER, Hannah A. W. ; SEEBER, Antje A. ; WILLEMS, Dick L. ; DE VISSER, Marianne
Frontiers in neurology, 2018, vol.9, p. 1-10

Document en ligne

Thème : Soins. Cote : eD02.03.02.00

DEMARCHE PALLIATIVE ; MALADIE NEUROLOGIQUE ; MALADIE CHRONIQUE ; PAYS-BAS ; PLANIFICATION ; ANTICIPATION ; SOIN ; MEDECIN ; MALADIE PARKINSON ; RELATION MEDECIN PATIENT ; COMMUNICATION ; SCLÉROSE EN PLAQUES ; SCLEROSE LATERALE AMYOTROPHIQUE ; NEUROLOGIE

Background: Chronic progressive neurological diseases like high grade glioma (HGG), Parkinson's disease (PD), and multiple sclerosis (MS) are incurable, and associated with increasing disability including cognitive impairment, and reduced life expectancy. Patients with these diseases have complex care needs. Therefore, timely advance care planning (ACP) is required. Our aim was to investigate timing and content of discussions on treatment restrictions, i.e., to initiate, withhold, or withdraw treatment in patients with HGG, PD, and MS, from the neurologists' perspective. Methods: We performed a national online survey amongst consultants in neurology and residents in The Netherlands. The questionnaire focused on their daily practice concerning timing and content of discussions on treatment restrictions with patients suffering from HGG, PD or MS. We also inquired about education and training in discussing these issues. Results: A total of 125 respondents [89 neurologists (71%), 62% male, with a median age of 44 years, and 36 residents (29%), 31% male with a median age of 29 years] responded. Initial discussions on treatment restrictions were said to take place during the first year after diagnosis in 28% of patients with HGG, and commonly no earlier than in the terminal phase in patients with PD and MS. In all conditions, significant cognitive decline was the most important trigger to advance discussions, followed by physical decline, and initiation of the terminal phase. Most discussed issues included ventilation, resuscitation, and admission to the intensive care unit. More than half of the consultants in neurology and residents felt that they needed (more) education and training in having discussions on treatment restrictions.
Conclusion: In patients with HGG discussions on treatment restrictions are initiated earlier than in patients with PD or MS. However, in all three diseases these discussions usually take place when significant physical and cognitive decline has become apparent and commonly mark the initiation of end-of-life care. More than half of the responding consultants in neurology and residents feel the need for improvement of their skills in performing these discussions.

Origine : PubMed

Assisted ventilation in motor neurone disease during inpatient palliative care - barriers and utilisation

GLEESON, Aoife ; JOHNSON, Faye
BMJ supportive and palliative care, 02/02/2019, Pagination inconnue

Document en ligne

Thème : Soins.

MALADIE NEUROLOGIQUE ; ROYAUME UNI ; IRLANDE ; VENTILATION ARTIFICIELLE ; QUESTIONNAIRE ; UNITE SOINS PALLIATIFS

OBJECTIVES: An increasing number of patients with motor neuron disease (MND) in the UK and Ireland use assisted ventilation, and a small proportion of these use long-term tracheostomy ventilation (TV).1 2 NICE guidelines recommend that patients with MND should routinely receive specialist palliative care input. The aim was to establish the extent to which hospices and specialist palliative care units (SPCUs) in the UK and Ireland currently manage patients with MND using assisted ventilation especially TV and to identify any associated barriers.
METHODS: A 25-item questionnaire was developed in Survey Monkey. A link to the questionnaire was emailed to every medical director (n=185) of inpatient hospices/SPCUs in the UK and Ireland.
RESULTS: The response rate was 42.4% (n=78). 97.4% of units admit patients with MND on non-invasive ventilation (NIV), but only 28.2% admit those using TV. 80.8% of units have adequate expertise in the management of NIV, compared with 7.7% for managing TV. 35.9% and 2.6% of units have a policy for managing patients using NIV and TV, respectively. 14.1% respondents had been involved in the care of patients with MND using TV, in the specialist palliative care setting in the last 5 years.
CONCLUSIONS: A minority of UK and Irish hospices/SPUs provide support to TV MND patients and few units currently have management or admission policies for this cohort of patients. Respondents indicated a lack of appropriate expertise and experience. Further exploration of these barriers is required to establish how to optimise care for TV MND patients in this setting.

Origine : PubMed

Fin de vie dans le contexte d'une maladie neurodégénérative

VILA, Céline
DROIT DEONTOLOGIE SOIN, 09/2018, vol.18, n°3, p. 337-341

FIN VIE ; MALADIE NEUROLOGIQUE ; REANIMATION ; ARRET THERAPEUTIQUE ; TEXTE OFFICIEL

Dans le cadre de la fin de vie d'une maladie neurodégénérative, les praticiens n'ont pas engagé leur responsabilité en refusant de mettre en oeuvre une réanimation active, qui aurait été scientifiquement inadaptée. La règle du consentement aux soins ne dérive pas vers un libre choix du traitement (CAA de Lyon, 14 mai 2018, n° 16LY02121).

Origine : BDSP. Notice produite par APHPDOC R0xFIH77. Diffusion soumise à autorisation

Les soins de confort en fin de vie dans la maladie d'Alzheimer et les autres maladies dégénératives du cerveau - un guide pour les proches

ARCAND, Marcel ; CARON, Chantal ; Institut universitaire de gériatrie de Sherbrooke
CSSS. Institut universitaire de gériatrie de Sherbrooke , 2016 , vol.2 vol., 28 p.

CERVEAU ; MALADIE ; MALADIE ALZHEIMER ; QUEBEC ; SOIN CONFORT ; FIN VIE ; MALADIE NEUROLOGIQUE ; GUIDE

Résumé non transmis par le producteur.

Origine : BDSP. Notice produite par SANTECOM lR0xl9nE. Diffusion soumise à autorisation

Palliative care triggers in progressive neurodegenerative conditions - an evaluation using a multi-centre retrospective case record review and principal component analysis

HUSSAIN, Jamilla ; ALLGAR, Victoria ; OLIVER, David
PALLIATIVE MEDICINE, 04/2018, vol.32, n°4, p. 716-725

Thème : Soins. Cote : 00.07PAL

ROYAUME UNI ; DEMARCHE PALLIATIVE ; MALADIE NEUROLOGIQUE ; MALADIE PARKINSON ; ETUDE RETROSPECTIVE

Background: The use of specific triggers has been suggested to help identify patients with progressive neurological disease who would benefit from palliative care.
Aim: This study aimed to improve the evidence base for the use of triggers for patients with progressive neurological disease.
Design: An evaluation of palliative care services was undertaken using a retrospective case note review of the timing and presence of triggers in the last 2 years of life.
Setting/Participants: A total of 12 specialist palliative care units across the United Kingdom provided data from 300 patients: mean patient age 70 years, 50% male, diagnoses included motor neurone disease 58%, Parkinson's disease 17% and Parkinson's Plus syndromes 12%.
Results: There was a high burden of triggers - 17 in the last 2 years of life and 10 in the last 6 months of life. The most frequent triggers were deteriorating physical function, complex symptoms and dysphagia. Four factors were found to explain 64% of the total variance: Factor 1 - Deterioration in physical function, dysphagia, significant complex symptoms and pain; Factor 2 - Weight loss and respiratory symptoms; Factor 3 - Recurrent infections and cognitive decline; Factor 4 - Aspiration pneumonia. Cox regression analyses found different triggers were associated with survival from diagnosis versus survival from referral to palliative care. Different triggers were also associated with survival for different neurological conditions.
Conclusion: This study demonstrates that there is a high burden of triggers in the last months and years of life and that these could potentially be reduced to fewer components. Prospective studies assessing which triggers are useful for different conditions are now required.

The effect of a comprehensive dementia care management program on end-of-life care

JENNINGS, Lee A. ; TURNER, Maurice ; KEEBLER, Chandra ; BURTON, Carl H. ; ROMERO, Tahmineh ; WENGER, Neil S. ; REUBEN, David B.
Journal of the American Geriatrics Society, 24/01/2019, Pagination inconnue

Document en ligne

Thème : Soins.

PREFERENCE ; FIN VIE ; SERVICE SOIN AIGU ; UNITE SOINS PALLIATIFS ; MALADIE NEUROLOGIQUE ; ETUDE COHORTE ; MILIEU URBAIN ; ETUDE RETROSPECTIVE ; DEMENCE ; PLANIFICATION ; ANTICIPATION ; SOIN

BACKGROUND/OBJECTIVES: Although Alzheimer disease and other dementias are life limiting, only a minority of these patients or their proxy decision makers participate in advance care planning. We describe end-of-life care preferences and acute care and hospice use in the last 6 months of life for persons enrolled in a comprehensive dementia care management program.
DESIGN: Observational, retrospective cohort.
SETTING: Urban, academic medical center.
PARTICIPANTS: A total of 322 persons enrolled in dementia care management after July 1, 2012, who died before July 1, 2016.
INTERVENTION: Dementia care comanagement model using nurse practitioners partnered with primary care providers and community organizations to provide comprehensive dementia care, including advance care planning.
MEASUREMENTS: Advance care preferences, use of Physician Orders for Life Sustaining Treatment (POLST), hospice enrollment, and hospitalizations and emergency department (ED) visits in the last 6 months of life obtained from electronic health record data.
RESULTS: Nearly all decedents (99.7%, N = 321) had a goals-of-care conversation documented (median = 3 conversations; interquartile range = 2-4 conversations), and 64% had advance care preferences recorded. Among those with recorded preferences, 88% indicated do not resuscitate, 48% limited medical interventions, and 35% chose comfort-focused care. Most patients (89%) specified limited artificial nutrition, including withholding feeding tubes. Over half (54%) had no hospitalizations or ED visits in the last 6 months of life, and intensive care unit stays were rare (5% of decedents). Overall, 69% died on hospice. Decedents who had completed a POLST were more likely to die in hospice care (74% vs 62%; P = .03) and die at home (70% vs 59%; P = .04).
CONCLUSIONS: Enrollees in a comprehensive dementia care comanagement program had high engagement in advance care planning, high rates of hospice use, and low acute care utilization near the end of life. Wider implementation of such programs may improve end-of-life care for persons with dementia.

Origine : PubMed

Wishes to die at the end of life and subjective experience of four different typical dying trajectories - a qualitative interview study

OHNSORGE, Kathrin ; REHMANN-SUTTER, Christoph ; STREECK, Nina ; GUDAT, Heike
Plos one, 2019, vol.14, n°1, p. 1-26

Document en ligne

Thème : Soins. Cote : eD02.03.00

RECHERCHE QUALITATIVE ; DESIR MOURIR ; DEMARCHE PALLIATIVE ; CANCER ; MALADIE NEUROLOGIQUE ; VULNERABILITE ; PHENOMENOLOGIE ; TRAJECTOIRE MALADIE ; THEORIE

RESEARCH AIMS: The motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer.
STUDY POPULATION: 62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews).
STUDY DESIGN AND METHODS: Qualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory.
RESULTS: In addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups.
INTERPRETATION: WTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients' WTD, and the underlying motivations and protective factors.

Origine : PubMed

Gaspard entre terre et ciel

CLERMONT, Marie-Axelle ; CLERMONT, Benoît
Points , 2019 , 208 p.

Thème : Littérature adulte.

FAMILLE ; MALADIE LETALE ; ENFANT ; TEMOIGNAGE ; MALADIE NEUROLOGIQUE ; FRATRIE

À l'âge de treize mois, Gaspard est diagnostiqué de la maladie de Sandhoff, maladie neuro-dégénérative rare, incurable.
Dans un témoignage aussi émouvant que salutaire, écrit à quatre mains, ils racontent leur cheminement et la façon dont la maladie a radicalement changé leur regard sur la vie.

(1) 2 3 4 ... 9 > »

Confirmer la suppression du commentaire

Actions

Voir la sélection

Déplier les références

Replier les références

Envoyer par Mail

Imprimer la sélection

Imprimer les premières

Sauvegarder les premières

Envoyer les premières par mail

Affiner votre recherche

ACCOMPAGNEMENT DEMARCHE PALLIATIVE ENFANT ETHIQUE FAMILLE FIN VIE MALADIE NEUROLOGIQUE NEUROLOGIE PATIENT PEDIATRIE PRISE EN CHARGE QUALITE VIE SCLEROSE LATERALE AMYOTROPHIQUE SOIN UNITE SOINS PALLIATIFS

Type de document

Article

120

Brochure

Contribution congrès

Extrait ouvrage

Mémoire ou Thèse

Monographie

N special periodique

Rapport