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PREFERENCE

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Implementing the serious illness care program in primary care

MASSMANN, Jill A. ; REVIER, Sara S. ; PONTO, Julie
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 08/2019, vol.21, n°4, p. 291-299

Document en ligne

Thème : Soins.

MALADIE GRAVE ; COMMUNICATION ; PREFERENCE ; PATIENT ; FORMATION PROFESSIONNELLE

Inadequate communication about serious illness care preferences affects patients, families, health care providers, and health care systems. Many patient and system barriers prevent comprehensive serious illness communication. The purpose of this evidence-based practice project was to provide a structure within a primary care clinic to facilitate conversations with seriously ill individuals about their care preferences that (a) was adaptable to clinic workflow, (b) improved providers’ perception of the care conversation experience, (c) improved documentation of care preferences, and (d) provided a comfortable and helpful experience. The Johns Hopkins Nursing Evidence-Based Practice model and Serious Illness Care Program were used to address provider and system barriers to conversations about care preferences. Program interventions included training providers and staff; identifying patients at risk for high symptom burden and mortality; integrating system interventions; and evaluating outcomes. Providers completed training, after which a 5-week pilot practice change was conducted. Provider perceptions of conversations after implementation were positive. During the pilot, 3 serious illness care conversations were initiated with additional patients prepared for future conversations using an information sheet and introduction to the conversation.

Origine : journals.lww.com

Parents’ wishes for what they had or had not done and their coping after their infant’s or child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death

CAICEDO, Carmen ; BROOTEN, Dorothy ; YOUNGBLUT, JoAnne M. ; DANKANICH, Julia
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 08/2019, vol.21, n°4, p. 333-343

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Thème : Soins.

RECHERCHE QUALITATIVE ; PARENT ; MORT ; ENFANT ; PREFERENCE ; TEMPS ; FIN VIE ; COPING

This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant’s/child’s neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child’s surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers’ coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents’ need for time with their infant/child before and after death and to receive information on child’s treatments at levels and in languages they understand.

Origine : journals.lww.com

Associations of advance directive knowledge, attitudes, and barriers/benefits with preferences for advance treatment directives among patients with heart failure and their caregivers

KIM, JinShil ; SHIN, Mi-Seung ; PARK, YAE MIN ; LEE, HYANG-NANG ; HEO, Seongkum ; OUNPRASEUTH, SONGTHIP
Journal of cardiac failure, 22/07/2019, Pagination inconnue

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Thème : Soins.

CONNAISSANCE ; DIRECTIVE ANTICIPEE ; CONNAISSANCE ; ATTITUDE ; PREFERENCE ; INSUFFISANCE CARDIAQUE ; PATIENT ; AIDANT

Background: Patients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers.
Methods and Results: Seventy-one patient (mean age: 68 years)–caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087–0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care.
Conclusion: The dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.

Origine : ScienceDirect

An observational study on quality of life and preferences to sustain life in locked-in state

KUZMA-KOZAKIEWICZ, Magdalena ; ANDERSEN, Peter M. ; CIECWIERSKA, Katarzyna ; VAZQUEZ, Cynthia ; HELCZYK, Olga ; LOOSE, Markus ; UTTNER, Ingo ; LUDOLPH, Albert C. ; LULE, Dorothée
Neurology, 09/2019, vol.93, n°10, p. 938-945

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

QUALITE VIE ; PREFERENCE ; LOCKED IN SYNDROME ; SCLEROSE LATERALE AMYOTROPHIQUE ; EVALUATION ; ECHELLE MESURE ; QUESTIONNAIRE

OBJECTIVE: This is an observational study on well-being and end-of-life preferences in patients with amyotrophic lateral sclerosis (ALS) in the locked-in state (LIS) in a Polish sample within the EU Joint Programme-Neurodegenerative Disease Research study NEEDSinALS (NEEDSinALS.com).
METHODS: In this cross-sectional study, patients with ALS in LIS (n = 19) were interviewed on well-being (quality of life, depression) as a measure of psychosocial adaptation, coping mechanisms, and preferences towards life-sustaining treatments (ventilation, percutaneous endoscopic gastroscopy) and hastened death. Also, clinical data were recorded (ALS Functional Rating Scale-revised version). Standardized questionnaires (Anamnestic Comparative Self-Assessment [ACSA], Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), ALS Depression Inventory-12 items [ADI-12], schedule of attitudes toward hastened death [SAHD], Motor Neuron Disease Coping Scale) were used, which were digitally transcribed; answers were provided via eye-tracking control. In addition, caregivers were asked to judge patients' well-being.
RESULTS: The majority of patients had an ACSA score >0 and a SEIQoL score >50% (indicating positive quality of life) and ADI-12 <29 (indicating no clinically relevant depression). Physical function did not reflect subjective well-being; even more, those with no residual physical function had a positive well-being. All patients would again choose the life-sustaining techniques they currently used and their wish for hastened death was low (SAHD <10). Caregivers significantly underestimated patient's well-being.
INTERPRETATION: Some patients with ALS in LIS maintain a high sense of well-being despite severe physical restrictions. They are content with their life-sustaining treatments and have a strong will to live, which both may be underestimated by their families and public opinion.

Origine : PubMed

Living wills - GPs should do more to support patients, says charity

IACOBUCCI, Gareth
BMJ, 07/08/2019, vol.366, p. l5065

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Thème : Soins.

PREFERENCE ; PATIENT ; RELATION MEDECIN PATIENT ; MEDECIN GENERALISTE ; COMMUNICATION ; RAPPORT ; DIRECTIVE ANTICIPEE

GPs should do more to help patients plan for their care and treatment because of a lack of awareness about advance decisions, says a report from the charity Compassion in Dying.
Advance decisions are documents that allow people to state in what circumstances they would want to refuse future treatment if they become seriously ill and cannot make or convey such decisions. Formerly known as “living wills,” advance decisions gained legal status in 2005.

Origine : PubMed

Older adults' preferred and perceived roles in decision-making about palliative chemotherapy, decision priorities and information preferences

MOTH, Erin B. ; KIELY, Belinda E. ; MARTIN, Andrew ; NAGANATHAN, Vasi ; DELLA-FIORENTINA, Stephen ; HONEYBALL, Florian ; ZIELINSKI, Rob ; STEER, Christopher ; MANDALIYA, Hiren ; RAGUNATHAN, Abiramy ; BLINMAN, Prunella
Journal of geriatric oncology, 19/08/2019, Pagination inconnue

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Thème : Soins.

PERSONNE AGEE ; PRISE DECISION ; CHIMIOTHERAPIE ; PREFERENCE ; PATIENT ; CANCER

Aim: Patients with cancer have varied preferences for involvement in decision-making. We sought older adults' preferred and perceived roles in decision-making about palliative chemotherapy; priorities; and information received and desired.
Methods: Patients =65y who had made a decision about palliative chemotherapy with an oncologist completed a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale. Wilcoxon rank-sum tests evaluated associations with preferred role. Factors important in decision-making were rated and ranked, and receipt of, and desire for information was described.
Results: Characteristics of the 179 respondents: median age 74y, male (64%), having chemotherapy (83%), vulnerable (Vulnerable Elders Survey-13 score = 3) (52%). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36% and matched the preferred role for 63% of patients. Associated with preference for an active role: being single/widowed (p = .004, OR = 1.49), having declined chemotherapy (p = .02, OR = 2.00). Ranked most important (n = 159) were “doing everything possible” (30%), “my doctor's recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy. Fewer had received quantitative prognostic information (49%) than desired this information (67%).
Conclusion: Older adults exhibited a range of preferences for involvement in decision-making about palliative chemotherapy. Oncologists should seek patients' decision-making preferences, priorities, and information needs when discussing palliative chemotherapy.

Origine : PubMed

Engaging multidisciplinary stakeholders to drive shared decision-making in oncology

ROCQUE, Gabrielle ; MILLER-SONNET, Ellen ; BALCH, Alan ; STRICKER, Carrie ; SEIDMAN, Josh ; STILES, Susan ; RUGGERIO, John ; PAYNTER, Nancy ; LEWIS, Mark ; KAMAL, Arif
JOURNAL OF PALLIATIVE CARE, 01/2019, vol.34, n°1, p. 29-31

Thème : Soins. Cote : 00.07JPC

PRISE DECISION ; CANCEROLOGIE ; PREFERENCE ; PATIENT ; INTERDISCIPLINARITE

Although recognized as best practice, regular integration of shared decision-making (SDM) approaches between patients and oncologists remains an elusive goal. It is clear that usable, feasible, and practical tools are needed to drive increased SDM in oncology. To address this goal, we convened a multidisciplinary collaborative inclusive of experts across the health-care delivery ecosystem to identify key principles in designing and testing processes to promote SDM in routine oncology practice. In this commentary, we describe 3 best practices for addressing challenges associated with implementing SDM that emerged from a multidisciplinary collaborative: (1) engagement of diverse stakeholders who have interest in SDM, (2) development of the necessary roadmap and consideration of the infrastructure needed for engendring patient engagement in decision-making. We believe these 3 principles are critical to the success of creating SDM tools to be utilized both within and outside of clinical practice. We are optimistic that shared use across settings will support adoption of this tool and overcome barriers to implementing SDM within busy clinical workflows. Ultimately, we hope that this work will offer new perspectives on what is important to patients and provide an important impetus for leveraging patient preferences and values in decision-making.

"A vos souhaits", un jeu pour faciliter la parole...

PEYRARD, Colette
ASP LIAISONS, 11/2018, n°57, p. 16-17

Thème : Soins. Cote : 00.07ASP

OUTIL ; MEDIATION ; JUSQU'A LA MORT ACCOMPAGNER LA VIE ; PREFERENCE ; COMMUNICATION ; FIN VIE

La rédaction des directives anticipées est perçue difficilement car elle donne l'impression de "graver dans le marbre" une situation inconnue au moment de l'écriture. Comme cela a été souvent souligné, ce que l'on craint pour cette période va de l'abandon à l'obstination déraisonnable, avec toute une échelle de sentiments entre ces deux bornes.
L'association américaine CODA-ALLIANCE (San José) a proposé sous forme d'un jeu de cartes, une liste de souhaits.
[Début de l'article]

Implementing the serious illness care program in primary care

MASSMANN, Jill ; REVIER, Sara
JOURNAL OF HOSPICE AND PALLIATIVE NURSING, 08/2019, vol.21, n°4, p. 291-299

Thème : Soins.

COMMUNICATION ; MALADIE GRAVE ; PREFERENCE ; RELATION PERSONNEL SOIGNANT PATIENT ; PATIENT

Disentangling public preferences for health gains at end-of-life - further evidence of no support of an end-of-life premium

HANSEN, Lise Desiree ; KJAER, Trine
Social science and medicine, 21/06/2019, vol.236, Pagination inconnue

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Thème : Santé.

FIN VIE ; ECONOMIE SANTE ; PREFERENCE ; OPINION PUBLIQUE ; QUALITE VIE

In many countries, it has been publicly debated whether health gains for patients at end-of-life (EoL) should be valued higher than health gains for other patients. This has led to a range of stated preference studies examining the justification for an EoL premium on the basis of public preferences - so far with mixed findings. In the present study, we seek to extend this literature. We apply a simple stated preference approach with illustrative binary choices to elicit both individual and social preferences for several types of health gains. More specifically, we investigate whether health gains at EoL, resulting from either an improvement in quality of life (QoL) or life expectancy (LE) are valued differently from similarly sized health gains from preventive treatment and treatment of a temporary disease. Furthermore, we examine whether social preferences are affected by the age of beneficiaries. A web-based survey was conducted in 2015 using a random sample of 1047 members of the general public in Denmark. Overall, we do not find evidence to support an EoL premium compared to other health gains, neither when preferences are elicited from a social nor an individual perspective. Furthermore, our results demonstrate that the type of the health gain received matters to preferences for treatment at EoL with more weight given to gains in QoL than gains in LE. Finally, we find heterogeneity in preferences according to respondent characteristics, perspectives and age of beneficiaries.

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

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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

Improving end-of-life care in the intensive care unit - clinician's experiences with the 3 wishes project

NEVILLE, Thanh H. ; AGARWAL, Neha ; SWINTON, Marilyn ; PHUNG, Peter ; XU, Xueqing ; KAO, Yuhan ; SEO, Jiyeon ; GRANONE, Maria C. ; HJELMHAUG, Kristen ; HAINJE, Jessica ; PAVLISH, Carol ; CLARKE, France ; COOK, Deborah J.
JOURNAL OF PALLIATIVE MEDICINE, 08/07/2019, p. 1-7

Document en ligne

Thème : Soins. Cote : e00.07JOU

FIN VIE ; SOIN INTENSIF ; PROJET SOIN ; PREFERENCE ; PATIENT

Background: End-of-life (EOL) care is an important aspect of practice in the intensive care unit (ICU), where approximately one of every five patients may die.
Objective: The objective of this study was to describe clinicians' experiences with the 3 Wishes Project (3WP) and understand the influence of the project on care in the ICU.
Design: The 3WP is a palliative care intervention in which clinicians elicit and implement final wishes for patients dying in the ICU; it had been implemented for seven months at the time of this study. This mixed-methods study includes quantitative data from clinician surveys and qualitative data from clinician focus groups.
Setting: A 24-bed medical ICU in a tertiary academic center.
Subjects: Perspectives of 97 clinicians working in the ICU during the study period were obtained by self-administered surveys. Five focus groups with 25 nurses and 5 physicians were held, digitally recorded, transcribed, and analyzed.
Measurements and Results: During the 7-month period, 67 decedents and their families participated in the 3WP. The overarching concept identified through analysis of the survey and focus group data is that the 3WP improves EOL care in the ICU, which was supported by three main themes: (1) The 3WP facilitates meaningful EOL care; (2) The 3WP has a positive impact on nurses and physicians; and (3) clinicians observe a positive influence of the 3WP on families.
Conclusions: This patient-centered and family-partnered intervention facilitates meaningful EOL care, favorably impacting the ICU team and positively influencing family members.

Origine : PubMed

Factors relating to caregivers' preference for advance care planning of patients in Japan - a cross-sectional study

SHAKU, Fumio ; TSUTSUMI, Madoka ; NAKAMURA, Asumi ; TAKAGI, Hiroshi ; OTSUKA, Takahiro ; MARUOKA, Shuichiro
The American journal of hospice and palliative care, 08/2019, vol.36, n°8, p. 727-733

Document en ligne

Thème : Soins. Cote : 00.07AME

FACTEUR ; PREFERENCE ; AIDANT NATUREL ; PLANIFICATION ; ANTICIPATION ; SOIN ; JAPON

OBJECTIVES: The aim of this study was to examine the preferences of home caregivers on patient advance care planning (ACP), including life-sustaining treatment (LST) and the factors relating to these preferences.
BACKGROUND: Personalized ACP aims to respect the autonomy and choices of terminally ill patients regarding end-of-life care. However, there have been cases wherein doctors must instead discuss ACP with surrogates (including caregivers) for various reasons such as dementia, intractable neurologic diseases, and cerebrovascular accident.
METHODS: In this cross-sectional study, self-written questionnaires (filled by individuals themselves) were distributed to 506 in-home caregivers in 6 Japanese prefectures; the questionnaires contained items on caregiver and patient demographics, number of people living together in a caregiver's home (aside from patients), care duration, comprehension level of doctors' explanations regarding their patient's condition, patient diseases, whether caregivers have or have not told patients about their disease, level of nursing care, and caregiver LST preference (preferred or not preferred). The questionnaire package also contained the Burden Index of Caregiver-11, Patient Health Questionnaire-9, and Short Form-8 Health Survey.
RESULTS: Valid responses were obtained from 309 caregivers. More than half of them were not sure of their patient's LST preference. Sex, number of people living together in a care home, comprehension level of doctors' explanations, and care duration were found to be the significant factors relating to caregivers' LST preference (P < .05).
CONCLUSION: Health providers should be cognizant of the background factors relating to caregiver ACP preference when deciding on LST for terminal patients.

Origine : PubMed

Advance directive preferences among terminally ill older patients and its facilitators and barriers in China - a scoping review

LIAO, Jing ; WU, Bei ; NI, Ping ; MAO, Jing
Journal of the American Medical Directors Association, 04/07/2019, Pagination inconnue

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

DIRECTIVE ANTICIPEE ; PERSONNE AGEE ; PHASE TERMINALE ; CHINE ; PREFERENCE

OBJECTIVES: To explore advance directive (AD) preferences and the facilitators and barriers of promoting ADs among terminally ill older patients in China.
DESIGN: A scoping review was used to identify key themes in ADs.
SETTING AND PARTICIPANTS: Studies from 2007 to 2017 were identified from the MEDLINE and Cochrane libraries. Articles concerning important components of ADs in terminally ill older patients were selected.
MEASURES: Eligible articles concerning important components of ADs in terminally ill older patients were thematically synthesized. Later, implementation evidence was identified from core components.
RESULTS: We used 13 articles and identified key components in ADs: (1) Chinese cultural characteristics; (2) policy support; (3) advance care planning (ACP); (4) hospice-palliative care (HPC); (5) prognosis disclosure and life-sustaining treatment preference; (6) knowledge about ADs for patients and their families; (7) the prevalence of ADs; (8) implementation of ADs; (9) staff experience and training; and (10) effective communication between patients, their families, and health care professionals. Facilitators in implementing ADs included previous comfort-oriented end-of-life care experience of patients or their families, and the enactment of relevant policy. Barriers included traditional Chinese cultural beliefs; lack of policy; lack of knowledge of ADs, ACP, and HPC; and poor communication between physicians, patients, and family members.
CONCLUSIONS/IMPLICATIONS: Chinese patients still showed positive preferences toward ADs. The implementation of ADs could be promoted through public education about ADs, the learning of ACP and HPC, and relevant policy development in China.

Origine : PubMed

A review of the literature on family decision-making at end of life precipitating hospital admission

PROCTER, Susan ; OOI, MuiKeow ; HOPKINS, Charlotte ; MOORE, Geraldine
British journal of nursing, 11/07/2019, vol.28, n°13, p. 878-884

Document en ligne

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

PRISE DECISION ; FAMILLE ; FIN VIE ; ADMISSION ; HOPITAL ; FACTEUR ; PREFERENCE ; LIEU DECES ; DOMICILE ; UNITE SOINS PALLIATIFS

Around 70% of people would prefer to die at home, yet around 50% die in hospital, according to Dying Matters. In collaboration with a local hospice, a literature review was undertaken to address the question: 'what factors precipitate admission to hospital in the last few days of a person's life for those who had expressed a preference to die at home?' Four electronic databases were searched, with a date range of 2008 to 2018. After 80 articles were screened, 13 were included in the review. The findings identified a number of barriers experienced by people with non-cancer conditions nearing the end of life and their family carers, which inhibit the transition to end-of-life care. The findings suggest that hospice support for non-cancer patients with a deteriorating health trajectory needs to precede patient and family recognition that end-of-life care is needed.

Origine : PubMed

Does ethnicity matter-cultural factors underlying older adults' end-of-life care preferences - a systematic review

RAHEMI, Zahra ; WILLIAMS, Christine Lisa
Geriatric nursing, 15/07/2019, Pagination inconnue

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

ETHNICITE ; PERSONNE AGEE ; PREFERENCE ; FIN VIE ; PLANIFICATION ; ANTICIPATION ; SOIN

Due to low levels of planned care, older adults of underrepresented communities tend to experience higher rates of unwanted treatments at end of life (EOL). The purpose of this review was to identify factors that may explain differences in EOL care preferences and planning between older adults from the general population and ethnically diverse populations. We hypothesized that culture-specific factors may be fundamental. To describe similarities and differences, we conducted a comprehensive literature search using keywords and subject headings. Findings from 14 studies were critically examined, grouped, and compared across studies and populations. While studies on general populations showed the significance of health and sociodemographic factors, studies on underrepresented groups frequently cited the importance of spirituality, belief systems, acculturation, healthcare system distrust, and social networks.

Origine : PubMed

End-of-life activities among community-dwelling older adults in Japan

TANAKA, Miho ; TAKAHASHI, Masami ; KAWASHIMA, Daisuke
OMEGA JOURNAL OF DEATH AND DYING, 26/06/2019, Pagination inconnue

Document en ligne

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

FIN VIE ; PERSONNE AGEE ; JAPON ; ACTIVITE VIE QUOTIDIENNE ; REPRESENTATION MORT ; PREFERENCE ; PLANIFICATION

This study explored end-of-life (EOL) activities among community-dwelling Japanese older adults and the relationships between EOL activities and related variables. One hundred twenty-three older adults (38 men, 87 women; mean age = 72.54 years) who attended EOL seminars were surveyed regarding EOL activities, attitudes toward death, and mental health status. Cluster analysis of EOL activities revealed three clusters: Planning (e.g., had planned own funeral arrangements), Preference (e.g., had talked about EOL care with their family), and Preparation (e.g., already written their will). The number of EOL-related events attended was positively correlated with Preparation, while fear of death was negatively associated with Preference. Older adults with bereavement experience had higher Planning and Preparation scores than those without such experience.

Origine : PubMed

Toward understanding the relationship between prioritized values and preferences for cardiopulmonary resuscitation among seriously ill adults

MODES, Matthew E. ; ENGELBERG, Ruth A. ; DOWNEY, Lois ; NIELSEN, Elizabeth L. ; LEE, Robert Y. ; CURTIS, J. Randall ; KROSS, Erin K.
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 19/06/2019, Pagination inconnue

Document en ligne

Thème : Ethique et déontologie.

DEMARCHE PALLIATIVE ; FIN VIE ; PREFERENCE ; PLANIFICATION ; VALEUR ; REANIMATION

Context: Prioritizing amongst potentially conflicting end-of-life values may help patients discriminate amongst treatments and allow clinicians to align treatments with values.
Objectives: To investigate end-of-life values that patients prioritize when facing explicit trade-offs and identify predictors of patients whose values and treatment preferences seem inconsistent.
Methods: Analysis of surveys from a multi-center cluster-randomized trial of patients with serious illness. Respondents prioritized end-of-life values and identified cardiopulmonary resuscitation (CPR) preferences in two health states.
Results: Of 535 patients, 60% prioritized relief of discomfort over extending life, 17% prioritized extending life over relief of discomfort, and 23% were unsure. Patients prioritizing extending life were most likely to prefer CPR, with 93% preferring CPR in current health and 67% preferring CPR if dependent on others, compared to 69% and 21% respectively for patients prioritizing relief of discomfort, and 78% and 33% respectively for patients unsure of their prioritized value (p<0.001 for all comparisons). Among patients prioritizing relief of discomfort, preference for CPR in current health was less likely among older patients (OR 0.958 per year; 95%CI 0.935,0.981) and more likely with better self-perceived health (OR 1.402 per level of health; 95%CI 1.090,1.804).
Conclusion: Clinicians face challenges as they clarify patient values and align treatments with values. Patients' values predicted CPR preferences, but a substantial proportion of patients expressed CPR preferences that appeared potentially inconsistent with their primary value. Clinicians should question assumptions about relationships between values and CPR preferences. Further research is needed to identify ways to use values to guide treatment decisions.

Origine : PubMed

Choice of and comfort with health care proxy among older adults - hierarchical compensation and perceived similarity in values

BARNETT, Michael D. ; CANTU, Christina
DEATH STUDIES, 13/06/2019, p. 1-7

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

PERSONNE AGEE ; PREFERENCE ; FIN VIE ; PERSONNE CONFIANCE ; DIRECTIVE ANTICIPEE ; PLANIFICATION ; ANTICIPATION ; SOIN ; VALEUR

The purpose of this study was to investigate choice of and comfort with health care proxy among older adults (N = 240). Results indicated that choice of proxy follows a hierarchical compensation model. Perceived similarity regarding end-of-life preferences and political views were not associated with comfort with proxy; however, perceived similarity with regards to religious values was associated with comfort with proxy. Attempts to promote advance care planning and advance directives may benefit from emphasizing individuals’ choice and autonomy but also their opportunity to designate a health care proxy who they feel represents their religious values.

Origine : Taylor and Francis+NEJM

Facilitating the choice of dying at home or in residential care with the implementation of a palliative care rapid response team in a cancer centre and general hospital

LE, Brian H. ; MARSTON, Celia ; KERLEY, Christopher ; EASTMAN, Peter
PALLIATIVE MEDICINE, 04/2019, vol.33, n°4, p. 475-476

Document en ligne

Thème : Soins.

LIEU DECES ; PREFERENCE ; DOMICILE ; MAISON RETRAITE ; DEMARCHE PALLIATIVE ; CANCEROLOGIE ; HOPITAL ; AUSTRALIE

Population-based surveys suggest that up to 70% of Australians wish to receive care at home when faced with advanced terminal illness; however, only 14% achieve this goal. This is a comparatively low rate compared to other developed countries and due to a myriad of factors, including care fragmentation, lack of advance care planning, inadequate symptom control and limited availability of community-based palliative care services.
[Début de l'article]

Origine : SAGE Journals

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ANTICIPATION CANCER COMMUNICATION DEMARCHE PALLIATIVE DIRECTIVE ANTICIPEE ETATS-UNIS FAMILLE FIN VIE PATIENT PERSONNE AGEE PLANIFICATION PREFERENCE PRISE DECISION RECHERCHE QUALITATIVE SOIN

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295

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