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Article

Preferences around the disclosure of dying - a vision from Portuguese society

HILÁRIO, Ana Patrícia
Palliative and supportive care, 29/05/2019, p. 1-6

Thème : Mort.

PORTUGAL ; PREFERENCE ; ETHNOGRAPHIE ; UNITE SOINS PALLIATIFS ; ETAPE MOURIR ; CONSCIENCE

OBJECTIVE: This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.
METHOD: An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.
RESULTS: The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script.
SIGNIFICANCE OF RESULTS: The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.

Origine : PubMed

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Article

'It all depends!' - a qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers

GERBER, Katrin ; HAYES, Barbara ; BRYANT, Christina
PALLIATIVE MEDICINE, 03/05/2019, Pagination inconnue

Thème : Soins.

RECHERCHE QUALITATIVE ; PREFERENCE ; LIEU ACCUEIL ; LIEU DECES ; PHASE TERMINALE ; PRISE DECISION ; AIDANT NATUREL ; PATIENT ; AUSTRALIE

BACKGROUND: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life.
AIM: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death.
DESIGN: Semi-structured interviews with patients and family caregivers, which were analysed thematically using qualitative description.
SETTING/PARTICIPANTS: A total of 17 participants (8 patients and 9 caregivers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia.
RESULTS: The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services. Patients and caregivers dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, patients and caregivers expressed their choices as contextual, personal, relational, conditional and flexible preferences.
CONCLUSIONS: These findings suggest that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

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Article

End-of-life cancer care redesign - patient and caregiver experiences in a lay health worker-led intervention

PATEL, Manali I. ; MOORE, David ; COKER, Tumaini R.
The American journal of hospice and palliative care, 02/05/2019, Pagination inconnue

Thème : Soins.

CANCER ; FIN VIE ; ACCOMPAGNEMENT ; ACTEUR SOIN ; COMMUNICATION ; PREFERENCE ; RELATION INTERPERSONNELLE ; PATIENT

IMPORTANCE: The Engagement of Patients with Advanced Cancer (EPAC), comprised of a lay health worker (LHW) who assists patients with advance care planning, is an effective intervention for improving patient experiences and reducing acute care use and total health-care costs. The objective of this study was to assess patients' and caregivers' experiences with the intervention.
METHODS: We invited all patients enrolled in EPAC and their caregivers to complete an 8-item survey at the end of the intervention and a random 35% sample to participate in a qualitative interview to assess their experiences. At 15-month follow-up, we invited all caregivers of patients who died during the study to participate in a qualitative interview. We analyzed survey responses using bivariate methods and recorded, transcribed, and analyzed interviews using qualitative content analysis.
RESULTS: Sixty-nine patients were alive at completion of the intervention and all 30 identified caregivers completed the survey. All viewed the intervention as a critical part of cancer care and recommended the intervention for other patients. In qualitative interviews, among 30 patients, all reported improved comfort in discussing their end-of-life care preferences. In qualitative interviews with 24 bereaved caregivers, all viewed the intervention as critical in ensuring that their loved ones' wishes were adhered to at the end of life.
CONCLUSIONS AND RELEVANCE: Incorporating an LHW into end-of-life cancer care is an approach supported and viewed as highly effective in improving care by patients and caregivers. The LHW-led EPAC intervention is one solution that can significantly impact patient and caregiver experiences.

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Article

End-of-life care preferences for people with advanced cancer and their families in intensive care units - a systematic review

ALYAMI, Hanan M. ; CHAN, Raymond Javan ; NEW, Karen
Supportive care in cancer, 17/05/2019, p. 1-12

Thème : Soins.

PREFERENCE ; FIN VIE ; CANCER ; SOIN INTENSIF ; REVUE LITTERATURE ; PATIENT ; FAMILLE

BACKGROUND: Advanced cancer patients' end-of-life care preferences in oncology units, medical-surgical units, nursing homes and palliative care services have been established. However, less is known about end-of-life care preferences of patients with advanced cancer in intensive care units and their families.
AIM: To explore end-of-life care preferences of patients with advanced cancer and their families in intensive care units and if these align with essential elements for end-of-life care.
DESIGN: Electronic databases were searched up to February 2018. Reference lists of retrieved articles were screened for potential studies.
RESULTS: A total of 112 full text articles were retrieved. Of these, 12 articles reporting outcomes from 10 studies were eligible for inclusion. The majority were retrospective chart reviews (n = 7) and conducted in developed countries (n = 9). Care preferences change over time with deteriorating physical condition. Ongoing patient-centred communication and shared decision-making are critical as is teamwork and involvement of a palliative care team. Marital status, gender and ethnicity appear to influence care preferences. Of those studies examining patient preferences and/or the receiving of their preferences, these could be aligned with approximately half of the Australian essential elements for end-of-life care.
CONCLUSIONS: Providing end-of-life care for patients with advanced cancer in intensive care units is challenging. No studies have investigated prospectively the end-of-life care preferences of patients and their families in this acute setting. Further research is required to determine the elements of care preferences for patients with advanced cancer and their families in intensive care units in developing countries.

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Article

Parents' acceptance and regret about end of life care for children who died due to malignancy

DAS, Kunal ; KHANNA, Tanvi ; ARORA, Anshika ; AGRAWAL, Nitika
Supportive care in cancer, 01/05/2019, p. 1-6

Thème : Soins.

PEDIATRIE ; FIN VIE ; CANCEROLOGIE ; RECHERCHE QUALITATIVE ; PREFERENCE ; PARENT

PURPOSE: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers.
METHOD: This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed.
RESULT: Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons).
CONCLUSION: Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India.

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Article

Prediction of life-story narrative for end-of-life surrogate's decision-making is inadequate - a Q-methodology study

HAMMAMI, Muhammad M. ; ABUHDEEB, Kafa ; HAMMAMI, Muhammad B. ; DE PADUA, Sophia J. S. ; AL-BALKHI, Areej
BMC medical ethics, 03/05/2019, vol.20, n°1, p. 1-17

Thème : Soins. Cote : eD02.03.03

PERSONNE CONFIANCE ; RECIT VIE ; PRISE DECISION ; PREFERENCE ; FIN VIE ; METHODE

Background: Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better.
Methods: Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view (respondent-personal) and predicted pair’s view (respondent-surrogate). They also scored their confidence in surrogate’s decision-making (0 to 4 = maximum) and familiarity with pair’s healthcare-preferences (1 to 4 = maximum). Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity.
Results: Mean (SD) age was 35.4 (10.3) years, 69% were females, and 73 and 80% reported = very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 (0.58) and 75% were = familiar with pair’s healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67–0.69), 0.42 (0.40–0.44), and 0.26 (0.24–0.28), respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score (rho = 0.18, p = 0.01). There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002).
Conclusions: Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background.

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Article

Preferences for place of care and place of death - what, how, when and who to ask?

GERBER, Katrin ; HAYES, Barbara ; BRYANT, Christina
PROGRESS IN PALLIATIVE CARE, 05/05/2019, p. 1-5

Thème : Soins.

PREFERENCE ; LIEU ACCUEIL ; LIEU DECES ; RELATION PERSONNEL SOIGNANT PATIENT ; PATIENT

As healthcare systems worldwide are confronted with increasing numbers of aging patients and those living with life-limiting illnesses, the topic of where people want to spend their last days has received considerable attention. However, the strategies that researchers and clinicians use to capture these end-of-life views vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. We will argue that how researchers and clinicians choose to answer these questions directly influences their findings. Based on these considerations, we will highlight ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments. Only when we are able to accurately identify where people want to spend their last days, can we begin to meet the needs of patients as they approach the final stage of their lives.

Origine : Taylor and Francis+NEJM

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Article

Planning ahead for end-of-life healthcare among Iranian-American older adults - attitudes and communication of healthcare wishes

RAHEMI, Zahra
Journal of cross-cultural gerontology, 09/05/2019, Pagination inconnue

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

FIN VIE ; PERSONNE AGEE ; IRAN ; ATTITUDE ; COMMUNICATION ; ETATS-UNIS ; PLANIFICATION ; MIGRANT ; PREFERENCE ; CULTURE ; SPIRITUALITE ; ACCOMPAGNEMENT SOCIAL ; PATIENT

The purpose of this study was to examine relationships between attitudes toward planning for end-of-life (EOL) care and social supports, spirituality, distrust of the US healthcare system, and acculturation; and to investigate a relationship between attitudes and communication of EOL wishes in Iranian-American older adults. A descriptive, cross-sectional study was used. Older adults (N = 135) were surveyed using Qualtrics online software. The participants were new immigrants to the U.S., highly educated, and insured with a generally positive self-reported health status. Of this sample, 47.4% reported that they communicated their EOL wishes orally or through written documentation. Favorable attitudes toward planning were associated with acculturation and healthcare system distrust, and, inversely, were negatively associated with spirituality. No significant association was found between attitudes and social support. Favorable attitudes predicted participants’ communication of wishes. The findings can inform the provision of effective interventions to enhance culturally competent EOL care.

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Article

Preferences regarding end-of-life care among adolescents and young adults with cancer - results from a comprehensive multicenter survey in Japan

HIRANO, Hidekazu ; SHIMIZU, Chikako ; KAWACHI, Asuka ; OZAWA, Miwa ; HIGUCHI, Akiko ; YOSHIDA, Saran ; SHIMIZU, Ken ; TATARA, Ryohei ; HORIBE, Keizo
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 08/05/2019, Pagination inconnue

Thème : Soins.

PREFERENCE ; FIN VIE ; ADOLESCENT ; JEUNE ADULTE ; CANCER ; JAPON ; PATIENT ; CHIMIOTHERAPIE

CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear.
OBJECTIVES: The objective of the study was to evaluate preferences regarding EOL care among AYA cancer population.
METHODS: We evaluated preferences regarding EOL care as a part of a comprehensive multicenter questionnaire study investigating the experience and needs of Japanese AYA cancer population.
RESULTS: A total of 349 AYA cancer population (213 AYA cancer patients and 136 AYA cancer survivors) were evaluated. Eighteen six percent (296/344), 53% (180/338), 88% (301/341) and 61% (207/342) of participants with valid response preferred to have prognostic disclosure, receive palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity, actively use palliative care and stay home at EOL, respectively. In multivariate analysis, the preference regarding prognostic disclosure was associated positively with no child status (OR = 3.05, p = 0.003) and negatively with history of chemotherapy (OR = 0.23, p = 0.009), the preference regarding palliative chemotherapy for incurable cancer with limited efficacy at the expense of considerable toxicity was associated positively with status under active cancer treatment (OR = 1.74, p = 0.03) and the preference of staying home at EOL was positively associated with anxiety (OR = 1.72, p = 0.04).
CONCLUSION: This study elucidated preferences regarding EOL care among Japanese AYA cancer population. These findings may help health care practitioners to have better understanding of preferences regarding EOL care among this population.

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Article

Advance care planning improves psychological symptoms but not quality of life and preferred end-of-life care of patients with cancer

TANG, Siew Tzuh ; CHEN, Jen-Shi ; WEN, Fur-Hsing ; CHOU, Wen-Chi ; CHANG, John Wen-Cheng ; HSIEH, Chia-Hsun ; CHEN, Chen Hsiu
Journal of the national comprehensive cancer network, 01/04/2019, vol.17, n°4, p. 311-320

Thème : Soins. Cote : eD02.03.00

PLANIFICATION ; ANTICIPATION ; SOIN ; QUALITE VIE ; ETAT PSYCHOLOGIQUE ; FIN VIE ; CANCER ; CONTROLE SYMPTOME ; PREFERENCE ; PHASE TERMINALE ; TAIWAN ; PRISE DECISION

BACKGROUND: This study was conducted to examine whether a longitudinal advance care planning (ACP) intervention facilitates concordance between the preferred and received life-sustaining treatments (LSTs) of terminally ill patients with cancer and improves quality of life (QoL), anxiety symptoms, and depressive symptoms during the dying process.
PATIENTS AND METHODS: Of 795 terminally ill patients with cancer from a medical center in Taiwan, 460 were recruited and randomly assigned 1:1 to the experimental and control arms. The experimental arm received an interactive ACP intervention tailored to participants' readiness to engage in this process. The control arm received symptom management education. Group allocation was concealed, data collectors were blinded, and treatment fidelity was monitored. Outcome measures included 6 preferred and received LSTs, QoL, anxiety symptoms, and depressive symptoms. Intervention effectiveness was evaluated by intention-to-treat analysis.
RESULTS: Participants providing data had died through December 2017. The 2 study arms did not differ significantly in concordance between the 6 preferred and received LSTs examined (odds ratios, 0.966 [95% CI, 0.653-1.428] and 1.107 [95% CI, 0.690-1.775]). Participants who received the ACP intervention had significantly fewer anxiety symptoms (β, -0.583; 95% CI, -0.977 to -0.189; P= .004) and depressive symptoms (ß, -0.533; 95% CI, -1.036 to -0.030; P= .038) compared with those in the control arm, but QoL did not differ.
CONCLUSIONS: Our ACP intervention facilitated participants' psychological adjustment to the end-of-life (EoL) care decision-making process, but neither improved QoL nor facilitated EoL care honoring their wishes. The inability of our intervention to improve concordance may have been due to the family power to override patients' wishes in deeply Confucian doctrine-influenced societies such as Taiwan. Nevertheless, our findings reassure healthcare professionals that such an ACP intervention does not harm but improves the psychological well-being of terminally ill patients with cancer, thereby encouraging physicians to discuss EoL care preferences with patients and involve family caregivers in EoL care decision-making to eventually lead to patient value-concordant EoL cancer care.

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Article

Latino ethnicity, immigrant status, and preference for end-of-life cancer care

TERGAS, Ana I. ; PRIGERSON, Holly G. ; SHEN, Megan J. ; BATES, Lisa M. ; NEUGUT, Alfred I. ; WRIGHT, Jason D. ; MACIEJEWSKI, Paul K.
JOURNAL OF PALLIATIVE MEDICINE, 11/04/2019, Pagination inconnue

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

ETHNICITE ; MIGRANT ; PREFERENCE ; FIN VIE ; CANCER ; ETATS-UNIS

Background: Little is known about how immigration status influences preference for life-extending care (LEC) at the end of life (EoL).
Objective: The purpose was to determine how preference for LEC at the EoL for advanced cancer patients varied by Latino ethnicity and immigrant status, and over time between two large cohorts.
Methods: Data were derived from two sequential multi-institutional, longitudinal cohort studies of advanced cancer patients, recruited from 2002 to 2008 (coping with cancer I [CwC-1]) and 2010 to 2015 (coping with cancer II [CwC-2]). Self-reported U.S.-born whites (whites) (N = 253), U.S.-born Latinos (US-L) (N = 34), and Latino immigrants (LI) (N = 65) with a poor-prognosis cancer were included. The primary independent variables were immigrant status, Latino ethnicity, and CwC cohort. The primary dependent variable was preference for LEC.
Results: Within CwC-2, LI were 9.4 times more likely to prefer LEC over comfort care versus US-L (adjusted odds ratio [AOR] = 9.4; 95% confidence interval [CI]: 1.2–72.4), and US-L were 0.3 times less likely to prefer LEC versus whites (AOR = 0.3; 95% CI: 0.1–1.0). LI from CwC-2 were 11.4 times more likely to prefer LEC versus LI from CwC-1 (AOR = 11.4; 95% CI: 2.7–48.4). Within CwC-1, there was no difference in LEC preference between LI and US-L, nor between US-L and whites.
Conclusions: Immigrant status had a strong effect on preference for LEC at the EoL among the more recent cohort of Latino cancer patients. Preference for LEC appears to have increased significantly over time for LI but remained unchanged for US-L. LI may increasingly want LEC near death.

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Article

Understanding underuse of advance care planning among a cohort of African American patients with advanced cancer - formative research that examines gaps in intent to discuss options for care

RHODES, Ramona L. ; UKOHA, Nkemdirim C. E. ; WILLIAMS, Kimberly A. ; ELWOOD, Bryan ; KNOX-RICE, Tori ; LEE, Simon C. ; TIRO, Jasmin A. ; SKINNER, Celette Sugg ; HALM, Ethan A.
The American journal of hospice and palliative care, 21/04/2019, Pagination inconnue

Thème : Soins.

PLANIFICATION ; ANTICIPATION ; ETUDE COHORTE ; ETHNICITE ; ETATS-UNIS ; CANCER ; DEMARCHE PALLIATIVE ; UNITE SOINS PALLIATIFS ; SOIN ; PREFERENCE ; COMMUNICATION ; PATIENT

BACKGROUND: Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans (AAs). This study assessed the impact of stage of intent to discuss ACP options as key potential barriers.
METHODS: We examined intent to discuss completion of ACP, PC, and hospice among 22 AA patients with cancer admitted to a local safety net hospital. Participants were asked about intent to discuss an advanced directive or living will (AD/LW), medical power of attorney (MPOA), PC, and hospice with their doctors. Intent to discuss these ACP components was based on the transtheoretical model. Electronic health records were reviewed at various intervals to assess completion of ACP behaviors and survival.
RESULTS: Participants had colorectal (33%), breast (44%), and lung (23%) cancer, and 82% had stage III/IV disease. Low percentages of patients were in the precontemplation stage for AD/LW completion (4.6%), MPOA completion (13.6%), and PC discussions (27.2%), but 77.2% were in the precontemplation stage for hospice discussions. At 1 year, only 5% completed an AD/LW, 36.4% appointed an MPOA, 42.9% were referred to PC, and 12.5% were referred to hospice. More than half (54.6%) were deceased by the study's conclusion. Most (81%) of these died within 6 months of their baseline study assessment.
CONCLUSIONS: Despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low. This formative research is needed to develop education and counseling interventions for this high-risk, vulnerable population.

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Preferences for a good death - a cross-sectional survey in advanced cancer patients

HOU, Xiaoting ; LU, Yuhan ; YANG, Hong ; GUO, Renxiu ; WANG, Yun ; WEN, Lihong ; ZHANG, Yaru ; SUN, Hongyu
BMJ supportive and palliative care, 03/04/2019, Pagination inconnue

Thème : Santé.

UNITE SOINS PALLIATIFS ; CANCER ; PHASE TERMINALE ; MORT ; PATIENT ; PREFERENCE ; LIEU DECES ; CHINE

OBJECTIVE: The aim of this study was to describe preferences for a good death among Chinese patients with advanced cancer and then to explore factors contributing to their preferences including patient demographics and disease variables.
METHODS: A convenience sample of 275 patients with advanced cancer was recruited from a tertiary cancer hospital in Beijing, China, between February and December 2017. A Chinese version of the Good Death Inventory (GDI) was used to measure patients' preferences for dying and death. Besides, data were collected using a multi-itemed questionnaire focusing on demographic and disease characteristics of patients.
RESULTS: Of the 275 questionnaires returned, 248 responses were analysed (effective response rate 90.2%). According to the total scores for each of the 20 domains, the five most important domains of a good death were: good relationship with family (19.80±2.39), independence (19.66±2.56), maintaining hope and pleasure (19.56±2.55), good relationship with medical staff (18.92±3.73), not being a burden to others (18.89±3.30). Patients' characteristics including age, educational status, religious belief, medical payment types, family economic status, past experiences of the death of others, the period since cancer diagnosis, past experiences of hospitalisation and subjective physical condition influenced their preferences for a good death (all p<0.05).
CONCLUSIONS: We had an in-depth knowledge and understanding of their preferences for good death among Chinese patients with advanced cancer. Meanwhile, we found some patients' factors contributed to different preferences for a good death. These findings have the potential to guide hospice care services aimed at achieving a good death for patients with advanced cancer.

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Advance care planning and place of death, hospitalisation and actual place of death in lung, heart and cancer disease - a randomised controlled trial

SKORSTENGAARD, Marianne Hjorth ; JENSEN, Anders Bonde ; ANDREASSEN, Pernille ; BROGAARD, Trine ; BRENDSTRUP, Elisabeth ; LOKKE, Anders ; AAGAARD, Susanne ; WIGGERS, Henrik ; NEERGAARD, Mette Asbjoern
BMJ supportive and palliative care, 11/04/2019, Pagination inconnue

Thème : Santé.

CANCER ; DANEMARK ; INSUFFISANCE CARDIAQUE ; PLANIFICATION ; PREFERENCE ; FIN VIE ; MALADIE RESPIRATOIRE ; ESSAI CONTROLE RANDOMISE

OBJECTIVES: Advance care planning (ACP) can be a way to meet patients' end-of-life preferences and enhance awareness of end-of-life care. Thereby it may affect actual place of death (APOD) and decrease the rate of hospitalisations. The aim was to investigate if ACP among terminally ill patients with lung, heart and cancer diseases effects fulfilment of preferred place of death (PPOD), amount of time spent in hospital and APOD.
METHODS: The study was designed as a randomised controlled trial. Patients were assessed using general and disease-specific criteria and randomised into groups: one received usual care and one received usual care plus ACP. The intervention consisted of a discussion between a healthcare professional, the patient and their relatives about preferences for end-of-life care. The discussion was documented in the hospital file.
RESULTS: In total, 205 patients were randomised, of which 111 died during follow-up. No significant differences in fulfilment of PPOD (35% vs 52%, p=0.221) or in amount of time spent in hospital among deceased patients (49% vs 23%, p=0.074) were found between groups. A significant difference in APOD was found favouring home death in the intervention group (17% vs 40%, p=0.013).
CONCLUSION: Concerning the primary outcome, fulfilment of PPOD, and the secondary outcome, time spent in hospital, no differences were found. A significant difference concerning APOD was found, as more patients in the intervention group died at home, compared with the usual care group.

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Monographie

Pour que le jour de votre mort soit le plus beau de votre vie

ABBO, Lionel
04/2019, 04/2019 , 169 p.

Thème : Littérature adulte.

CROQUE MORT ; MORT ; TEMPS ; PREFERENCE ; LITTERATURE

De Paris à Hollywood, ce roman suit les aventures d'Adolphe Goldstein, croque-mort opportuniste. Ce dernier a décidé de faire de la mort un commerce et de proposer à ses clients d'organiser leur fin en choisissant le moment de leur mort et la façon dont ils quitteront la Terre. Porté par cette mission qu'il juge d'utilité publique, Adolphe est prêt à tout pour convaincre le monde.
[©Electre 2019]

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The pattern and timing of changes in preferred place of death for patients admitted to a community specialist palliative care service

WIN, Min Min ; FISCHER, Amanda ; GOOD, Phillip
PROGRESS IN PALLIATIVE CARE, 23/03/2019, p. 1-6

Thème : Soins.

DEMARCHE PALLIATIVE ; PREFERENCE ; LIEU DECES ; TEMPS ; ETUDE RETROSPECTIVE

For patients receiving palliative care, expressing a preferred place of death (PPD) reduces anxiety and depression and increases the likelihood of achieving their preference. However, during the course of a life-limiting illness, patients commonly change their PPD at least once prior to death. The aim of this study was to identify the pattern and timing of how patients (and families) receiving specialist palliative care change their PPD over time. A retrospective chart audit was conducted of patients who died over a 7-month period whilst in the care of a metropolitan-based Community Specialist Palliative Care Service where PPD is routinely recorded every time a discussion on the topic occurs. These discussions are triggered by various factors which highlight the need to re-assess or confirm PPD. Results showed that 80% of patients achieved their PPD. There was no change to PPD in 64% of patients after the initial assessment, while 36% changed preferences once (27%), twice (8%) or three times (1%). Symptom management (10%) and family requests (30%) were cited as reasons for changing PPD. This study highlights that providers should revisit end-of-life discussions with patients along the disease trajectory and facilitate the consideration of all possible places for a good and safe death and the different scenarios that may influence patient decisions.

Origine : Taylor and Francis+NEJM

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What matters at the end of life - a qualitative study of older peoples perspectives in Southern Denmark

HANSON, Stine ; BRABRAND, Mikkel ; LASSEN, Annmarie T. ; RYG, Jesper ; NIELSEN, Dorthe S.
Gerontology and geriatric medicine, 12/2019, vol.5, p. 1-11

Thème : Age de la vie, situations spécifiques liées à la fin de vie. Cote : eD05.04

FIN VIE ; RECHERCHE QUALITATIVE ; PERSONNE AGEE ; DANEMARK ; PRISE DECISION ; PREFERENCE

What matters at the end of life (EOL) among the older population in Denmark is poorly investigated. We used focus groups and in-depth interviews, to identify perspectives within the EOL, along with what influences resuscitation, decision making, and other treatment preferences. We included eligible participants aged =65 years in the Region of Southern Denmark. Five focus groups and nine in-depth interviews were conducted, in total 31 participants. We found a general willingness to discuss EOL, and experiences of the process of dying were present among all participants. Three themes emerged during the analysis: (a) Being independent is crucial for the future, (b) Handling and talking about the EOL, and (c) Conditions in Everyday Life are Significant. Life experiences seemed to affect the degree of reflection of EOL and the decision-making process. Knowing your population of interest is crucial, when developing an approach or using an advance care plan from another setting.

Origine : PubMed

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Correlates of advance directive treatment preferences among community-dwelling older people with chronic diseases

KIM, JinShil ; HEO, Seongkum ; HONG, Sun Woo ; SHIM, JaeLan ; LEE, Jung-Ah
International journal of older people nursing, 01/03/2019, Pagination inconnue

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

DIRECTIVE ANTICIPEE ; PERSONNE AGEE ; MALADIE CHRONIQUE ; COREE ; CONNAISSANCE ; ATTITUDE ; PREFERENCE

BACKGROUND: Concerns over the creation of advance directives (ADs) and the factors associated with treatment directive decisions among Korean community-dwelling older people with chronic diseases have rarely been addressed.
OBJECTIVES: This study aimed to examine knowledge, attitudes and barriers/benefits regarding ADs and their associations with AD treatment preferences among chronically ill, low-income, community-dwelling older people.
METHODS: Using a descriptive, correlational design, older people who were recipients of home visiting service for chronic disease management participated in this study. Home visiting nurses collected data on knowledge, attitudes and perceived barriers/benefits and treatment directives using questionnaires during home visits.
RESULTS: Older people (N = 112, mean age = 74.9 years, women = 83.9%) who had chronic diseases such as hypertension (56.3%), diabetes mellitus (40.2%) and cardiovascular disease/stroke (22.3%) participated. Approximately half of the participants preferred hospice care (54.5%), while a few of them preferred aggressive treatments: cardiopulmonary resuscitation (CPR) (14.3%), ventilation support (9.8%) and haemodialysis (8.9%). Being married was associated with the likelihood of preferring CPR (odds ratio [OR] = 11.79) and ventilation support (OR = 9.99), higher education with CPR (OR = 1.23) and haemodialysis (OR = 1.16), and having a cardiovascular disease (CVD)/stroke with CPR (OR = 6.46) and hospice care (OR = 3.06). Among the modifiable factors, greater perceived barriers increased the likelihood of CPR preference (OR = 1.12) but decreased the likelihood of hospice care preference (OR = 0.96). Greater perceived benefits decreased the likelihood of CPR preference (OR = 0.81) and ventilation support (OR = 0.89), and AD knowledge decreased the likelihood of haemodialysis preference (OR = 0.23).
CONCLUSION: The multidimensional factors were differently associated with each of the AD treatment preferences. Modifiable factors, including perceived barriers and benefits and knowledge, should be improved to help low-income, community-dwelling older people select adequate AD treatment preferences.
IMPLICATIONS FOR PRACTICE: Additional information regarding AD treatments and some modifiable and non-modifiable correlates can be integrated into primary and palliative/supportive care in public health. The current home visitation service may also benefit from incorporating AD discussions while extending the service to embrace AD issues in addition to disease management.

Origine : PubMed

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Experiences of symptoms and health service preferences among older people living with chronic diseases during the last year of life

PUNGCHOMPOO, Wanicha ; SUWAN, Panudda ; KUNAPUN, Sukonta ; PUNGCHOMPO, Sirirat ; TUNGPUNKOM, Patraporn
International Journal of Palliative Nursing, 02/03/2019, vol.25, n°3, p. 129-141

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

SYMPTOME ; PREFERENCE ; PERSONNE AGEE ; MALADIE CHRONIQUE ; FIN VIE ; THAILANDE ; QUALITE VIE ; ACCES SOIN ; DEMARCHE PALLIATIVE ; BESOIN

BACKGROUND: There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences.
AIMS: To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers.
METHODS: The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17.
FINDINGS: The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home.
CONCLUSION: The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.

Origine : PubMed

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The effects of adding reassurance statements - cancer patients' preferences for phrases in end-of-life discussions

MORI, Masanori ; FUJIMORI, Maiko ; ISHIKI, Hiroto ; NISHI, Tomohiro ; HAMANO, Jun ; OTANI, Hiroyuki ; UNENO, Yu ; OBA, Akira ; MORITA, Tatsuya ; UCHITOMI, Yosuke
JOURNAL OF PAIN AND SYMPTOM MANAGEMENT, 25/02/2019, Pagination inconnue

Thème : Soins.

PREFERENCE ; CANCER ; PATIENT ; FIN VIE ; COMMUNICATION

CONTEXT: When discussing end-of-life issues with cancer patients, the addition of reassurance statements is considered helpful. However, patients' preferences for such statements have not been systematically demonstrated.
OBJECTIVES: The objectives of this study were to clarify if phrases with additional reassurance statements would be more preferable to phrases without them and explore variables associated with patients' preferences.
METHODS: In a cross-sectional survey, 412 cancer patients assessed their own preferences for phrases with/without additional statements using a six-point scale (1 = not at all preferable; 6 = very preferable). These included the statements of "hope for the best and prepare for the worst" ("hope/prepare") when discussing prognosis; symptom palliation when discussing code status; and specific goals, continuity of care, and nonabandonment when discussing hospice referral. We evaluated demographic data and the coping style and conducted multivariate regression analysis.
RESULTS: Compared with the phrase of life expectancy (i.e., median + typical range) alone [mean (SD), 3.5 (1.2); 95% CI, 3.4-3.6], the phrase with the additional "hope/prepare" statement was more preferable [3.8 (1.4); 3.7-3.9]. Compared with the phrase of do-not-resuscitate alone (3.1(1.3); 3.0-3.3), the phrase with the additional statement of symptom palliation was more preferable [3.9 (1.3); 3.7-4.0]. Compared with the phrase of hospice referral alone [3.4 (1.2); 3.3-3.5], phrases with the addition of a specific goal [3.9 (1.0); 3.8-4.0], specific goal and continuity (4.4(1.0); 4.3-4.5), and specific goal, continuity, and nonabandonment [4.8 (1.2); 4.7-4.9] were more preferable. In multivariate analyses, task-oriented coping was significantly correlated with preferences for phrases including additional reassurance statements.
CONCLUSION: Cancer patients systematically preferred reassurance statements. In end-of-life discussions, especially with patients with task-oriented coping, clinicians may provide additional reassurance statements.

Origine : PubMed

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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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