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ETATS-UNIS

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Nurses’ perspectives on family caregiver medication management support and deprescribing

TJIA, Jennifer ; DESANTO-MADEYA, Susan ; MAZOR, Kathleen ; HAN, Paul ; NGUYEN, Bryan ; CURRAN, Tess ; GALLAGHER, Julia
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, /08/2019, vol.21, n°4, p. 312-318

Thème : Soins.

INFIRMIERE ; ROLE ; AIDANT NATUREL ; THERAPEUTIQUE MEDICAMENTEUSE ; ETATS-UNIS

Nurses who care for patients with life-limiting illness operate at the interface of family caregivers (FCGs), patients, and prescribers and are uniquely positioned to guide late-life medication management, including challenging discussions about deprescribing. The study objective was to describe nurses’ perspectives about their role in hospice FCG medication management. Content analysis was used to analyze qualitative interviews with nurses from a parent study exploring views on medication management and deprescribing for advanced cancer patients. Ten home and inpatient hospice nurses, drawn from 3 hospice agencies and their referring hospital systems in New England, were asked to describe current practices of medication management and deprescribing and to evaluate a pilot tool to standardize hospice medication review. Analysis of the 10 interviews revealed that hospice nurses are receptive to a standardized approach for comprehensive medication review upon hospice transition and responded favorably to opportunities to discuss medication discontinuation with FCGs and prescribers. Effective framing for discussions included focus on reducing harmful and nonessential medications and reducing caregiver burden. Results indicate that nurses who care for hospice-eligible and enrolled patients are willing to discuss deprescribing with FCGs and prescribers when conversations are framed around medication harms and their impact on quality of life.

The association of physician orders for life-sustaining treatment with intensity of treatment among patients presenting to the emergency department

VRANAS, Kelly C. ; LIN, Amber L. ; ZIVE, Dana ; TOLLE, Susan W. ; HALPERN, Scott D. ; SLATORE, Christopher G. ; NEWGARD, Craig ; LEE, Robert Y. ; KROSS, Erin K. ; SULLIVAN, Donald R.
Annals of emergency medicine, 24/06/2019, Pagination inconnue

Document en ligne

Thème : Ethique et déontologie.

ETHIQUE SOIN ; SERVICE URGENCES ; ETUDE COHORTE ; ETUDE RETROSPECTIVE ; ETATS-UNIS

STUDY OBJECTIVE: Physician Orders for Life-Sustaining Treatment (POLST) forms are intended to help prevent the provision of unwanted medical interventions among patients with advanced illness or frailty who are approaching the end of life. We seek to evaluate how POLST form completion, treatment limitations, or both influence intensity of treatment among patients who present to the emergency department (ED).
METHODS: This was a retrospective cohort study of adults who presented to the ED at an academic medical center in Oregon between April 2015 and October 2016. POLST form completion and treatment limitations were the main exposures. Primary outcome was hospital admission; secondary outcomes included ICU admission and a composite measure of aggressive treatment.
RESULTS: A total of 26,128 patients were included; 1,769 (6.8%) had completed POLST forms. Among patients with POLST, 52.1% had full treatment orders, and 6.4% had their forms accessed before admission. POLST form completion was not associated with hospital admission (adjusted odds ratio [aOR]=0.97; 95% confidence interval [CI] 0.84 to 1.12), ICU admission (aOR=0.82; 95% CI 0.55 to 1.22), or aggressive treatment (aOR=1.06; 95% CI 0.75 to 1.51). Compared with POLST forms with full treatment orders, those with treatment limitations were not associated with hospital admission (aOR=1.12; 95% CI 0.92 to 1.37) or aggressive treatment (aOR=0.87; 95% CI 0.5 to 1.52), but were associated with lower odds of ICU admission (aOR=0.31; 95% CI 0.16 to 0.61).
CONCLUSION: Among patients presenting to the ED with POLST, the majority of POLST forms had orders for full treatment and were not accessed by emergency providers. These findings may partially explain why we found no association of POLST with treatment intensity. However, treatment limitations on POLST forms were associated with reduced odds of ICU admission. Implementation and accessibility of POLST forms are crucial when considering their effect on the provision of treatment consistent with patients' preferences.

Origine : PubMed

Longer duration of palliative care in patients with COPD is associated with death outside the hospital

KRASKOVSKY, Valeri ; SCHNEIDER, Jaclyn ; MADOR, M. Jeffery ; PROVOST, Karin A.
JOURNAL OF PALLIATIVE CARE, 02/07/2019, Pagination inconnue

Document en ligne

Thème : Médecine.

MALADIE CHRONIQUE ; MALADIE RESPIRATOIRE ; DEMARCHE PALLIATIVE ; LIEU DECES ; ETUDE RETROSPECTIVE ; ETATS-UNIS

BACKGROUND: Patients with advanced chronic obstructive pulmonary disease (COPD) have a significant symptom burden despite maximal medical therapy, yet few are referred for concomitant palliative care.
OBJECTIVE: To evaluate the utilization and impact of palliative care on the location of death and to identify clinical variables associated with palliative care contact.
DESIGN: Retrospective chart review from 2010 to 2016 at the VA Western New York Healthcare System using ICD-9/10 diagnosis of COPD. Palliative care contact was identified by Z51.5 or stop code 353.
RESULTS: Only 0.5% to 2% of living patients received palliative care, increasing abruptly at death (6%). Lower diffusion capacity for carbon monoxide (DLCO) (greater emphysema) was associated with palliative care contact, independent of comorbid disease burden or age. Initial outpatient contact was associated with a longer duration of palliative care (P = .003) and death in a home-like setting. Outpatient palliative care was associated with more severe airflow obstruction (forced expiratory volume in 1 second, percent predicted [FEV1%]), whereas greater disease exacerbation frequency was associated with inpatient contact. COPD patients not referred to palliative care had a greater comorbid disease burden, similar FEV1%, fewer disease exacerbations, and a greater DLCO.
CONCLUSION: Few patients with COPD received palliative care, similar to national trends. Initial outpatient palliative contact had the longest duration of care and death in the preferred home environment. The extent of emphysema (DLCO reduction) and more frequent disease exacerbations identified in patients were more likely to receive palliative care. Our study begins to define the benefits of palliative care in advanced COPD and confirms underutilization in the years before death, where a prolonged impact on the quality of life may be realized.

Origine : PubMed

Comparison of financial support for family caregivers of people at the end of life across six countries - a descriptive study

GARDINER, Clare ; TAYLOR, Beth ; ROBINSON, Jackie ; GOTT, Merryn
PALLIATIVE MEDICINE, 12/07/2019, Pagination inconnue

Document en ligne

Thème : Santé.

AIDANT NATUREL ; FIN VIE ; ALLOCATION JOURNALIERE ACCOMPAGNEMENT PERSONNE FIN VIE ; AUSTRALIE ; CANADA ; IRLANDE ; NOUVELLE-ZELANDE ; ROYAUME UNI ; ETATS-UNIS

BACKGROUND: Family caregivers of people at the end of life can face significant financial burden. While appropriate financial support can reduce the burden for family caregivers, little is known about the range and adequacy of financial support, welfare and benefits for family caregivers across countries with similarly developed health care systems.
AIM: The aim is o identify and compare sources of financial support for family caregivers of people approaching the end of life, across six countries with similarly performing health care systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States).
DESIGN: A survey of financial support, welfare and benefits for end of life family caregivers was completed by 99 palliative care experts from the six countries. Grey literature searches and academic database searches were also conducted. Comparative analyses of all data sources documented financial support within and between each country.
RESULTS: Some form of financial support for family caregivers is available in all six countries; however the type, extent and reach of support vary. Financial support is administered by multiple agencies, eligibility criteria for receiving support are numerous and complex, and there is considerable inequity in the provision of support.
CONCLUSION: Numerous barriers exist to the receipt of financial support, welfare and benefits. We identified several areas of concern, including a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Nonetheless, there is significant potential for policymakers to learn from other countries' experiences, particularly with regard to the scope and operationalisation of financial support.

Origine : PubMed

Attitudes toward advance care planning among persons with dementia and their caregivers

PETTIGREW, Corinne ; BRICHKO, Rostislav ; BLACK, Betty ; O'CONNOR, Maureen K. ; AUSTROM, Mary Guerriero ; ROBINSON, Maisha T. ; LINDAUER, Allison ; SHAH, Raj C. ; PEAVY, Guerry M. ; MEYER, Kayla ; SCHMITT, Frederick A. ; LINGLER, Jennifer H. ; DOMOTO-REILLY, Kimiko ; FARRAR-EDWARDS, Dorothy ; ALBERT, Marilyn
International psychogeriatrics, 16/07/2019, p. 1-15

Document en ligne

Thème : Soins.

ATTITUDE ; PLANIFICATION ; ANTICIPATION ; DEMENCE ; SOIN ; PRISE DECISION ; FACTEUR ; PREFERENCE ; FIN VIE ; MALADIE ALZHEIMER ; ETATS-UNIS ; ETHNICITE

ABSTRACT: Objectives:To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
DESIGN: Cross-sectional survey.
SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States.
PARTICIPANTS: 431 racially diverse caregivers of persons with dementia.
MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia."
RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.

Origine : PubMed

Clustering of 27,525,663 death records from the United States based on health conditions associated with death - an example of big health data exploration

JANSSEN, Daisy J. A. ; RECHBERGER, Simon ; WOUTERS, Emiel F. M. ; SCHOLS, Jos M. G. A. ; JOHNSON, Miriam J. ; CURROW, David ; CURTIS, J. Randall ; SPRUIT, Martijn A.
Journal of clinical medicine, 27/06/2019, vol.8, n°7, p. 1-15

Document en ligne

Thème : Santé. Cote : eD01.05

ETATS-UNIS ; MORTALITE ; CAUSE DECES ; LIEU DECES

BACKGROUND: Insight into health conditions associated with death can inform healthcare policy. We aimed to cluster 27,525,663 deceased people based on the health conditions associated with death to study the associations between the health condition clusters, demographics, the recorded underlying cause and place of death.
METHODS: Data from all deaths in the United States registered between 2006 and 2016 from the National Vital Statistics System of the National Center for Health Statistics were analyzed. A self-organizing map (SOM) was used to create an ordered representation of the mortality data.
RESULTS: 16 clusters based on the health conditions associated with death were found showing significant differences in socio-demographics, place, and cause of death. Most people died at old age (73.1 (18.0) years) and had multiple health conditions. Chronic ischemic heart disease was the main cause of death. Most people died in the hospital or at home.
CONCLUSIONS: The prevalence of multiple health conditions at death requires a shift from disease-oriented towards person-centred palliative care at the end of life, including timely advance care planning. Understanding differences in population-based patterns and clusters of end-of-life experiences is an important step toward developing a strategy for implementing population-based palliative care.

Origine : PubMed

Hospital and health system policies concerning the California End of Life Option Act

CAIN, Cindy L. ; KOENIG, Barbara A. ; STARKS, Helene ; THOMAS, Judy ; FORBES, Lindsay ; MCCLESKEY, Sara ; WENGER, Neil S.
JOURNAL OF PALLIATIVE MEDICINE, 12/07/2019, Pagination inconnue

Document en ligne

Thème : Ethique et déontologie.

LOI ; FIN VIE ; ETATS-UNIS ; SUICIDE MEDICALEMENT ASSISTE ; HOPITAL

Background: The End of Life Option Act (EOLOA) legalized physician aid in dying for competent, terminally ill Californians in 2016. The law allows clinicians, hospitals, and health systems to decide whether to participate. About 4 in 10 California hospitals permit the EOLOA, but little is known about their approaches and concerns.
Objective: Describe hospital EOLOA policies and challenges.
Design and Measurements: Survey study of hospitals in California, administered September 2017 to March 2018. We describe hospital policies concerning the EOLOA and perform thematic analysis of open-ended questions about challenges, including availability of providers, process of implementing EOLOA, experiences of distress by providers and patients, and questions about medications.
Results: Of 315 hospitals surveyed, 270 (86%) responded. Every surveyed hospital had established a position on the EOLOA. Among hospitals permitting EOLOA, 38% required safeguards not required in the law, 87% provided for referral to another provider if the patient's physician did not participate, and 65% counseled staff, if needed. Among hospitals not permitting the EOLOA, nearly all allowed providers to follow patients choosing to pursue the EOLOA elsewhere and most permitted a provider to refer to another provider or system. Most hospitals expressed concerns about implementation of the EOLOA and interest in sharing promising practices.
Conclusions: This survey of California hospitals demonstrates considerable heterogeneity in implementing the EOLOA. For many Californians, access to the EOLOA depends on where one receives medical care. Implementation would be improved by hospitals and health systems sharing promising practices.

Origine : PubMed

Paying for palliative care in medicare - evidence from the four seasons/duke CMMI demonstration

TAYLOR, Donald H. ; KAUFMAN, Brystana G. ; OLSON, Andrew ; HARKER, Matthew ; ANDERSON, David ; CROSS, Sarah H. ; BONSIGNORE, Lindsay ; BULL, Janet
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 27/06/2019, Pagination inconnue

Document en ligne

Thème : Santé.

DEMARCHE PALLIATIVE ; OFFRE SOIN ; ETATS-UNIS ; ORGANISATION SANITAIRE ; FIN VIE ; UNITE SOINS PALLIATIFS ; POLITIQUE SANITAIRE ; TRAJECTOIRE MALADIE

CONTEXT: Palliative care improves patient and family outcomes and may reduce the cost of care, but this service is underutilized among Medicare beneficiaries.
OBJECTIVES: To describe enrollment patterns and outcomes associated with the Center for Medicare and Medicaid Innovation expansion of a multisetting community palliative care program in North and South Carolina.
METHODS: This observational study characterizes the Center for Medicare and Medicaid Innovation cohort's care and cost trajectories after enrollment. Program participants were age-eligible Medicare fee-for-service beneficiaries living in Western North Carolina and South Carolina who enrolled in a palliative care program from September 1, 2014, to August 31, 2017. End-of-life costs were compared between enrolled and nonenrolled decedents. Program administrative data and 100% Medicare claims data were used.
RESULTS: A total of 5243 Medicare beneficiaries enrolled in the program from community (19%), facility (21%), small hospital (27%), or large hospital (33%) settings. Changes in Medicare expenditures in the 30 days after enrollment varied by setting. Adjusted odds of hospice use were 60% higher (OR = 1.60; CI = 1.47, 1.75) for enrolled decedents relative to nonenrolled decedents. Participants discharged to hospice vs. participants not had 17% (OR = 0.83 CI = 0.72, 0.94) lower costs. Among enrolled decedents those enrolled for at least 30 days vs. <30 days had 42% (OR = 0.58, CI = 0.49, 0.69) lower costs in the last 30 days of life.
CONCLUSIONS: Expansion of community palliative care programs into multiple enrollment settings is feasible. It may improve hospice utilization among enrollees. Heterogeneous program participation by program setting pose challenges to a standardizing reimbursement policy.

Origine : PubMed

Are older adults' demographic characteristics social determinants of their perceived importance, desire, and ability to perform end-of-life self-care actions?

TZENG, Huey-Ming ; BARKER, Anne ; KANG, Yu Sunny ; OKPALAUWAEKWE, Udoka ; YIN, Chang-Yi
Nursing forum, 18/07/2019, Pagination inconnue

Document en ligne

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

DEMOGRAPHIE ; PERSONNE AGEE ; FIN VIE ; ETATS-UNIS ; BESOIN ; PLANIFICATION ; ANTICIPATION ; SOIN

BACKGROUND: Demographic characteristics play a role in influencing the decision to make end-of-life (EOL) directives among older adults living in the United States.
AIMS: To examine the associations between older adults' demographic characteristics (age, sex, marital status, residential site, and educational level) and their perceived importance of four self-care actions for EOL planning, as well as their desire and ability to perform these actions.
SETTINGS: A cross-sectional survey study of community-dwelling adults living in the southern United States from 2015 to 2016.
PARTICIPANTS: Community-dwelling adults aged 65 years and older (N = 123).
METHODS: A self-administered tool, the Patient Action Inventory for Self-Care and a demographic questionnaire were used. Multiple logistic regression was performed.
RESULTS: Forty-seven of (38.2%) participants lived in an urban community and 76 (61.8%) in a rural community. Demographic variables that were significant across the predictive models were older adults' residence, education levels, age, and marital status. Four demographic characteristics of living in rural areas, without a high school education, being 75 years or older, and married could be social determinants of EOL planning.
CONCLUSIONS: Older adults may need community-based support to address their end-of-life needs, especially those elders who want to remain independent in their home environment.

Origine : PubMed

Epidemiologic trends of adoption of do-not-resuscitate status after pediatric in-hospital cardiac arrest

GUPTA, Punkaj ; RETTIGANTI, Mallikarjuna ; GOSSETT, Jeffrey M. ; NADKARNI, Vinay M. ; BERG, Robert A. ; RAYMOND, Tia T. ; PARSHURAM, Christopher S. ; AMERICAN HEART ASSOCIATION’S GET WITH THE GUIDELINES-RESUSCITATION INVESTIGATORS
Pediatric critical care medicine, 21/06/2019, Pagination inconnue

Document en ligne

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

EPIDEMIOLOGIE ; TESTAMENT VIE ; PEDIATRIE ; PREVALENCE ; FACTEUR ; ETATS-UNIS

OBJECTIVES: To evaluate the prevalence of do-not-resuscitate status, assess the epidemiologic trends of do-not-resuscitate status, and assess the factors associated with do-not-resuscitate status in children after in-hospital cardiac arrest using large, multi-institutional data.
DESIGN: Generalized estimating equations logistic regression model was used to evaluate the trends of do-not-resuscitate status and evaluate the factors associated with do-not-resuscitate status after cardiac arrest.
SETTING: American Heart Association's Get With the Guidelines-Resuscitation Registry.
PATIENTS: Children (< 18 yr old) with an index in-hospital cardiac arrest and greater than or equal to 1 minute of documented chest compressions were included (2006-2015). Patients with no return of spontaneous circulation after cardiac arrest were excluded.
INTERVENTIONS: None.
MEASUREMENTS AND MAIN RESULTS: In total, 8,062 patients qualified for inclusion. Of these, 1,160 patients (14.4%) adopted do-not-resuscitate status after cardiac arrest. We found low rates of survival to hospital discharge among children with do-not-resuscitate status (do-not-resuscitate vs no do-not-resuscitate: 6.0% vs 69.7%). Our study found that rates of do-not-resuscitate status after cardiac arrest are highest in children with Hispanic ethnicity (16.4%), white race (15.0%), and treatment at institutions with larger PICUs (> 50 PICU beds: 17.8%) and at institutions located in North Central (17.6%) and South Atlantic/Puerto Rico (17.1%) regions of the United States. Do-not-resuscitate status was more common among patients with more preexisting conditions, longer duration of cardiac arrest, greater than 1 cardiac arrest, and among patients requiring extracorporeal cardiopulmonary resuscitation. We also found that trends of do-not-resuscitate status after cardiac arrest in children are decreasing in recent years (2013-2015: 13.8%), compared with previous years (2006-2009: 16.0%).
CONCLUSIONS: Patient-, hospital-, and regional-level factors are associated with do-not-resuscitate status after pediatric cardiac arrest. As cardiac arrest might be a signal of terminal chronic illness, a timely discussion of do-not-resuscitate status after cardiac arrest might help families prioritize quality of end-of-life care.

Origine : PubMed

Psychiatric advance directives - origins, benefits, challenges, and future directions

MURRAY, Heather ; WORTZEL, Hal S.
Journal of psychiatric practice, 07/2019, vol.25, n°4, p. 303-307

Document en ligne

Thème : Soins.

PSYCHIATRIE ; DIRECTIVE ANTICIPEE ; ETATS-UNIS ; HISTORIQUE ; ETHIQUE

Psychiatric advance directives (PADs) are legal documents that allow individuals with psychiatric illness to designate decisions, while competent, about their future psychiatric care were they to lose competency due to psychiatric illness in the future. Among other items, these documents often include preferences regarding a surrogate decision-maker, types of medications, doses and routes of medications, seclusion and restraints, electroconvulsive therapy, and instructions for care of their property while incapacitated. While the concept and legal recognition of PADs has existed in the United States for several decades, use of PADs by patients and familiarity with PADs among mental health providers remain limited. This column reviews the origin of PADs, discusses several commonly considered arguments for and against the use of these documents, and concludes with a discussion of how PADs are currently used in the United States and their potential future role in mental health treatment.

Origine : PubMed

Integrating palliative care into the chronic illness continuum - a conceptual model for minority populations

GAZAWAY, Shena ; STEWART, Merry ; SCHUMACHER, Autumn
Journal of racial and ethnic health disparities, 27/06/2019, p. 1-9

Document en ligne

Thème : Médecine.

DEMARCHE PALLIATIVE ; MALADIE CHRONIQUE ; ACCES SOIN ; ETATS-UNIS ; MODELE ; CULTURE

Although the use of palliative care has increased in recent years, chronically ill Americans within a racial/ethnic minority (non-White) population underutilize this supportive and comfort-giving healthcare service. Consequently, chronically ill minority Americans experience increased pain, symptom burden, and inappropriate use of healthcare resources compared to their white counterparts. A literature review was conducted to compile and synthesize the current state of research pertinent to improving the use of palliative care among chronically ill minority Americans. Selection criteria produced 18 relevant publications, which aided in developing a conceptual model that assimilated early, episodic, and late palliative care phases along the chronic illness continuum. The goal of the conceptual model was to provide a roadmap for healthcare professionals to use when designing, implementing, managing, and/or evaluating palliative care services for chronically ill minority Americans. The literature review demonstrated that minority patients benefitted the most from culturally tailored, systematic interventions (such as advanced care planning education) in all phases of palliative care, which led to increases in advance directive completion, better symptom control, and hospice utilization. The article concludes with a discussion and fictional case study portraying the importance of culturally tailored early palliative care as a catalyst for engaging minority patients in palliative care services.

Origine : PubMed

Temporal aspects of wellbeing in later life - gardening among older African Americans in Detroit

ROBBINS, Jessica C. ; SEIBEL, Kimberly A.
Ageing and society, 18/07/2019, p. 1-21

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

TEMPS ; PERSONNE AGEE ; ETHNICITE ; ETATS-UNIS ; ACTIVITE VIE QUOTIDIENNE ; BIEN ETRE ; ETHNOGRAPHIE

Gardening has well-established physical, social and emotional benefits for older adults in varied circumstances. In Detroit, Michigan (United States of America), as in many cities, policy makers, funders, researchers, community organisations and residents regard gardening as a means of transforming bodies, persons, communities, cities and broader polities. We draw on ethnographic research conducted during one gardening season with 27 older African Americans in Detroit to foreground the social dimensions of wellbeing in later life and thus develop a more robust and nuanced understanding of gardening's benefits for older adults. Based on anthropological understandings of personhood and kinship, this article expands concepts of wellbeing to include social relations across multiple scales (individual, interpersonal, community, state) and temporalities (of the activity itself, experiences of ageing, city life). Even when performed alone, gardening fosters connections with the past, as gardeners are reminded of deceased loved ones through practices and the plants themselves, and with the future, through engagement with youth and community. Elucidating intimate connections and everyday activities of older African American long-term city residents counters anti-black discourses of ‘revitalisation’. An expansive concept of wellbeing has implications for understanding the generative potential of meaningful social relations in later life and the vitality contributed by older adults living in contexts of structural inequality.

Origine : Cambridge Core

Advance care planning in rural Montana - exploring the nurse’s role

CHRISTENSEN, Kara ; WINTERS, Charlene ; LUPARELL, Susan
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 08/2019, vol.21, n°4, p. 264-271

Thème : Soins.

PLANIFICATION ; ANTICIPATION ; SOIN ; MILIEU RURAL ; ETATS-UNIS ; ROLE ; DIRECTIVE ANTICIPEE ; BESOIN FORMATION ; INFIRMIERE

It is recommended that advance care planning take place across the lifespan. Rural populations have a heightened risk for poor quality and high cost of end-of-life care. A doctoral project was completed to assess rural nurses’ knowledge, attitudes, and experiences with advance directives using the Knowledge, Attitudinal, and Experimental Surveys on Advance Directives. Descriptive statistics were used for analysis. Participants were nurses who practice in rural settings (N = 22). The average age was 46.4 years; all were white (n = 22), and the majority were baccalaureate prepared (n = 12). Practice settings were primarily in home care and hospice. Knowledge scores on advance directives were low (57%). Nurses felt confident in counseling and initiating discussions with patients and families. Less than one-half of the nurses reported they feel part of the advance care planning team. The majority reported advance directive resources and mentorship of younger nurses would be beneficial and indicated the need for additional education, training, knowledge, time, and support to better assist with advance care planning. Project results and recommendations were presented to the participating health care organization. Recommendations included workplace education, support, mentorship, resources, and education on cultural sensitivity using the rural nursing theory.

End-of-life decision making and treatment for patients with professional guardians

COHEN, Andrew B. ; BENJAMIN, Andrea Z. ; FRIED, Terri R.
Journal of the American Geriatrics Society, 13/07/2019, Pagination inconnue

Document en ligne

Thème : Soins.

FIN VIE ; ETATS-UNIS ; PRISE DECISION ; ETUDE COHORTE ; ETUDE RETROSPECTIVE ; TRAJECTOIRE MALADIE ; VULNERABILITE ; AIDANT NATUREL

OBJECTIVES: Concerns have repeatedly been raised about end-of-life decision making when a patient with diminished capacity is represented by a professional guardian, a paid official appointed by a judge. Such guardians are said to choose high-intensity treatment even when it is unlikely to be beneficial or to leave pivotal decisions to the court. End-of-life decision making by professional guardians has not been examined systematically, however.
DESIGN: Retrospective cohort study.
SETTING: Inpatient and outpatient facilities in the Department of Veterans Affairs (VA) Connecticut Healthcare System.
PARTICIPANTS: Decedent patients represented by professional guardians who received care at Connecticut VA facilities from 2003 to 2013 and whose care in the last month of life was documented in the VA record.
MEASUREMENTS: Through chart reviews, we collected data about the guardianship appointment, the patient's preferences, the guardian's decision-making process, and treatment outcomes.
RESULTS: There were 33 patients with professional guardians who died and had documentation of their end-of-life care. The guardian sought judicial review for 33%, and there were delays in decision making for 42%. In the last month of life, 29% of patients were admitted to the intensive care unit, intubated, or underwent cardiopulmonary resuscitation; 45% received hospice care. Judicial review and high-intensity treatment were less common when information about the patient's preferences was available.
CONCLUSION: Rates of high-intensity treatment and hospice care were similar to older adults overall. Because high-intensity treatment was less likely when the guardian had information about a patient's preferences, future work should focus on advance care planning for individuals without an appropriate surrogate.

Origine : PubMed

Development and validation of a deep learning algorithm for mortality prediction in selecting patients with dementia for earlier palliative care interventions

WANG, Liqin ; SHA, Long ; LAKIN, Joshua R. ; BYNUM, Julie ; BATES, David W. ; HONG, Pengyu ; ZHOU, Li
JAMA network open, 03/07/2019, vol.2, n°7, p. 1-14

Document en ligne

Thème : Recherche - Evaluation - Méthodologie. Cote : eD15.00.02

MORTALITE ; DEMENCE ; DEMARCHE PALLIATIVE ; OUTIL ; INDICATEUR SANTE ; IDENTIFICATION ; ETUDE COHORTE ; ETUDE RETROSPECTIVE ; ETATS-UNIS

Importance: Early palliative care interventions drive high-value care but currently are underused. Health care professionals face challenges in identifying patients who may benefit from palliative care.
Objective: To develop a deep learning algorithm using longitudinal electronic health records to predict mortality risk as a proxy indicator for identifying patients with dementia who may benefit from palliative care.
Design, Setting, and Participants: In this retrospective cohort study, 6-month, 1-year, and 2-year mortality prediction models with recurrent neural networks used patient demographic information and topics generated from clinical notes within Partners HealthCare System, an integrated health care delivery system in Boston, Massachusetts. This study included 26 921 adult patients with dementia who visited the health care system from January 1, 2011, through December 31, 2017. The models were trained using a data set of 24 229 patients and validated using another data set of 2692 patients. Data were analyzed from September 18, 2018, to May 15, 2019.
Main Outcomes and Measures: The area under the receiver operating characteristic curve (AUC) for 6-month and 1- and 2-year mortality prediction models and the factors contributing to the predictions.
Results: The study cohort included 26 921 patients (16 263 women [60.4%]; mean [SD] age, 74.6 [13.5] years). For the 24 229 patients in the training data set, mean (SD) age was 74.8 (13.2) years and 14 632 (60.4%) were women. For the 2692 patients in the validation data set, mean (SD) age was 75.0 (12.6) years and 1631 (60.6%) were women. The 6-month model reached an AUC of 0.978 (95% CI, 0.977-0.978); the 1-year model, 0.956 (95% CI, 0.955-0.956); and the 2-year model, 0.943 (95% CI, 0.942-0.944). The top-ranked latent topics associated with 6-month and 1- and 2-year mortality in patients with dementia include palliative and end-of-life care, cognitive function, delirium, testing of cholesterol levels, cancer, pain, use of health care services, arthritis, nutritional status, skin care, family meeting, shock, respiratory failure, and swallowing function.
Conclusions and Relevance: A deep learning algorithm based on patient demographic information and longitudinal clinical notes appeared to show promising results in predicting mortality among patients with dementia in different time frames. Further research is necessary to determine the feasibility of applying this algorithm in clinical settings for identifying unmet palliative care needs earlier.

Origine : PubMed

Dignity of the patient--family unit - further understanding in hospice palliative care

GUO, Qiaohong ; ZHENG, Ruishuang ; JACELON, Cynthia S. ; MAC CLEMENT, Susan E. ; THOMPSON, Genevieve ; CHOCHINOV, Harvey Max
BMJ supportive and palliative care, 14/07/2019, Pagination inconnue

Document en ligne

Thème : Soins.

DIGNITE ; UNITE SOINS PALLIATIFS ; FAMILLE ; RECHERCHE QUALITATIVE ; ETATS-UNIS ; CANADA

OBJECTIVES: This study aimed to explore the construct of dignity of the patient-family dyad in hospice palliative care, as well as its influencing factors from the perspective of hospice palliative care staff.
METHODS: A qualitative descriptive study was conducted with 34 staff members from a residential hospice in Amherst, USA, and an inpatient palliative care unit in Winnipeg, Canada, between September 2013 and December 2016. Data were collected through semistructured interviews and were analysed using the thematic analysis approach.
RESULTS: Findings suggested that staff members viewed dignity as something that is reciprocally supported within the patient-family unit. Themes including respect, comfort, privacy, being informed and quality family time were common in the conceptualisation of dignity in patients and families; themes of being human and being self, autonomy and living with dignity were uniquely used to conceptualise patient dignity. Themes solely constituting family dignity included being included in care, being capable and being treated fairly. Cultural considerations, environmental factors, teamwork and patient/family-staff relationship were the factors identified by staff members that affected dignity in hospice palliative care.
CONCLUSION: Findings of this study provide insights into the development of strategies to support the dignity of the patient-family unit in hospice palliative care.

Origine : PubMed

Earlier identification of seriously ill patients - an implementation case series

LAKIN, Joshua R. ; DESAI, Meghna ; ENGELMAN, Kyle ; O'CONNOR, Nina ; TEUTEBERG, Winifred G. ; COACKLEY, Alison ; KILPATRICK, Laurel B. ; GAWANDE, Atul ; FROMME, Erik K.
BMJ supportive and palliative care, 28/06/2019, Pagination inconnue

Document en ligne

Thème : Recherche - Evaluation - Méthodologie.

MALADIE GRAVE ; IDENTIFICATION ; DEMARCHE PALLIATIVE ; ETATS-UNIS ; ANGLETERRE ; COMMUNICATION ; PLANIFICATION ; ANTICIPATION ; METHODE ; SOIN

OBJECTIVE: To describe the strategies used by a collection of healthcare systems to apply different methods of identifying seriously ill patients for a targeted palliative care intervention to improve communication around goals and values.
METHODS: We present an implementation case series describing the experiences, challenges and best practices in applying patient selection strategies across multiple healthcare systems implementing the Serious Illness Care Program (SICP).
RESULTS: Five sites across the USA and England described their individual experiences implementing patient selection as part of the SICP. They employed a combination of clinician screens (such as the 'Surprise Question'), disease-specific criteria, existing registries or algorithms as a starting point. Notably, each describes adaptation and evolution of their patient selection methodology over time, with several sites moving towards using more advanced machine learning-based analytical approaches.
CONCLUSIONS: Involving clinical and programme staff to choose a simple initial method for patient identification is the ideal starting place for selecting patients for palliative care interventions. However, improving and refining methods over time is important and we need ongoing research into better patient selection methodologies that move beyond mortality prediction and instead focus on identifying seriously ill patients-those with poor quality of life, worsening functional status and medical care that is negatively impacting their families.

Origine : PubMed

End-of-life care - redesigning access through leveraging the institute of medicine future of nursing recommendations

ROCHON, Therese ; EMARD, Esther
Home healthcare now, 08/2019, vol.37, n°4, p. 208-212

Document en ligne

Thème : Soins.

RECOMMANDATION ; SOIN INFIRMIER ; FIN VIE ; DIRECTIVE ANTICIPEE ; DEMARCHE PALLIATIVE ; UNITE SOINS PALLIATIFS ; ETATS-UNIS ; ACCES SOIN

In 2010, the Institute of Medicine published the vision for how to transform healthcare to achieve a more seamless patient-centered, high-quality system of care. Among the recommendations were four specifically focused on leveraging nursing which is the largest group of healthcare workers: (1) Ensure that nurses can practice to the full extent of their education and training, (2) Improve nursing education, (3) Provide opportunities for nurses to assume leadership positions and to serve as full partners in healthcare redesign and improvement efforts, and (4) Improve data collection for workforce planning and policy making. At the Care New England Health Care System's Visiting Nurse Association, located in the state of Rhode Island, we redesigned access to end-of-life care by leveraging these recommendations. An experienced palliative care nurse practitioner (NP) leads the program development to improve care delivered by home healthcare nurses and NP specialists. This program was designed to allow patients to remain in their preferred setting of care-their home-until the end of their life. In the 5 years of this program's existence, it has achieved a yearly impact on community-based palliative care and hospice services. The number of documented advance directives increased by 75%, referrals to palliative care and hospice increased by 300% and the length of time on hospice doubled. In addition, NP home visits became an accepted referral source and improvements in both the quality and satisfaction scores for the home healthcare agency were realized.

Origine : PubMed

Engaging a community chaplaincy resource for interprofessional health care provider training in facilitating family decision making for children at end-of-life

WADA, Randal K. ; WONG, Lorrie ; FLOHR, Anke ; KURAHARA, David ; ARNDT, Robin ; DEUTSCH, Melodee J. ; ING, Dana ; RICHARDSON, Karol ; MUNRO, Alexander ; KANESHIGE, Lori ; MULLIS, Mary ; HATAE, Mychal ; ALBRIGHT, Cheryl L.
Hawaï journal of medicine and public health, 06/2019, vol.78, n°6 Suppl 1, p. 37-40

Thème : Formation.

AUMONERIE ; FIN VIE ; INTERDISCIPLINARITE ; PRISE DECISION ; PEDIATRIE ; ETATS-UNIS ; FORMATION PROFESSIONNELLE ; SPIRITUALITE ; PERSONNEL SANTE

Coordinating the care of terminally ill children is difficult for both parents and the health care team. An underutilized resource is spiritual care, such as that provided by Pacific Health Ministry, a community-based nonprofit established to develop hospital ministry training programs in Hawai'i and provide chaplaincy services to local facilities. This paper describes a training exercise, called the Pediatric Interprofessional Program (PIPP), which is modeled after an adult program, the Hawai'i Interprofessional Training for End of Life Communication in the intensive care unit (HITEC-ICU). Both programs were developed to introduce teams of learners consisting of Pacific Health Ministry spiritual care residents, internal medicine or pediatric residents, undergraduate students in nursing, and graduate students in social work to techniques in delivering serious, life-altering information, and the dynamics of working as an interprofessional team through use of progressively unfolding clinical simulations. PIPP facilitators included chaplaincy instructors at Pacific Health Ministry, university faculty, and community practitioners in pediatrics, nursing, and social work. The simulations were conducted at the Translational Health Science Simulation Center (THSSC) of the University of Hawai'i at Manoa (UHM) School of Nursing and Dental Hygiene (SONDH), with simulated patients from the HealthCAST (Collaborative Acting Simulation Training) program, a collaborative agreement between SONDH and the UHM Department of Theatre and Dance. The training is ongoing, but has thus far demonstrated that interprofessional education programs are feasible across community, academic, and clinical lines, and benefit from the engagement of community resources.

Origine : PubMed

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AMERIQUE DU NORD CANCER DEMARCHE PALLIATIVE DEUIL ETATS-UNIS EVALUATION FAMILLE FIN VIE MORT PATIENT PERSONNE AGEE PLANIFICATION RECHERCHE QUALITATIVE SOIN UNITE SOINS PALLIATIFS

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