End-of-Life Decisions: A Cross-National Study of Treatment Preference Discussions and Surrogate Decision-Maker Appointments

Evans, Natalie; Pasman, H. Roeline W.; Alonso, Tomás Vega; Block, Lieve Van den; Miccinesi, Guido; Casteren, Viviane Van; Donker, G.A.; Bertolissi, Stefano; Zurriaga, Óscar; Deliens, Luc; Onwuteaka‐Philipsen, Bregje D.; EUROIMPACT, on behalf of

doi:10.1371/journal.pone.0057965

Cited by 72 publications

(66 citation statements)

References 42 publications

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“…Therefore, we have to address advance care planning in a different way in this population, including earlier discussions about treatment preferences. 16,17 Furthermore, these issues about receiving treatment inappropriately at the EOL are not limited to people with cancer and pervade many other chronic illness populations such as patients with pulmonary, cardiac, or kidney disease. [18][19][20] This study has shown how much time is spent with patients who subsequently are subject to EOL decisions and LOMT and emphasizes that, although not a widely recognized part of the CCOT/MET role or competencies, 9 dealing with EOL care constitutes a significant aspect of the work of CCOTs.…”

Section: Discussionmentioning

confidence: 99%

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making

Pattison

O’Gara

Wigmore

2015

American Journal of Critical Care

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Background Little research has examined the involvement of critical care outreach teams in end-of-life decision making. Objective To establish how much time critical care outreach teams spend with patients who are subsequently subject to limitation of medical treatment and end-of-life decisions and how much influence the teams have on those decisions. Methods A single-center retrospective review, with qualitative analysis, in a large cancer center. Data from all patients referred emergently for critical care outreach from October 2010 to October 2011 who later had limitation of medical treatment or end-of-life care were retrieved. Findings were analyzed by using SPSS 19 and qualitative free-text analysis. Results Of 890 patients referred for critical care outreach from October 2010 to October 2011, 377 were referred as an emergency; 108 of those had limitation of medical treatment and were included in the review. Thirty-five patients (32.4%) died while hospitalized. As a result of outreach intervention and a decision to limit medical treatment, 56 (51.9%) of the 108 patients received a formal end-of-life care plan (including care pathways, referral to palliative care team, hospice). About a fifth (21.5%) of clinical contact time is being spent on patients who subsequently are subject to limitation of medical treatment. Qualitative document analysis showed 5 emerging themes: difficulty of discussions about not attempting cardiopulmonary resuscitation, complexities in coordinating multiple teams, delays in referral and decision making, decision reversals and opaque decision making, and technical versus ethical imperatives. Conclusion A considerable amount of time is being spent on these emergency referrals, and decisions to limit medical treatment are common. The appropriateness of escalation of levels of care is often not questioned until patients become critically or acutely unwell, and outreach teams subsequently intervene.

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Section: Discussionmentioning

confidence: 99%

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making

Pattison

O’Gara

Wigmore

2015

American Journal of Critical Care

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“…18 This phenomenon is not, however, limited to Italy, as ADs are equally scarce in other European countries. 40 However, in Italy, ADs do not have legal force, and the few ADs that patients have created are simply an expression of wish rather than of will…”

Section: Typology Of Critical Decisionsmentioning

confidence: 99%

“…This may be partly related to the frequent lack of legal representatives (guardians) and advanced directives. 16,18 In these cases, the decision-making power of the NH physician is stronger than the influence of the GP on the family of a patient who is cared for at home; decisions for HC patients are more likely to be made jointly by the GP and the patient's family. In the NHs, most CDs were only communicated with family members after they were made, despite the fact that the large majority of our NH patients received family visits every day or several times a day, and the medical staff was present for many hours of the day and during weekends.…”

Section: Typology Of Critical Decisionsmentioning

confidence: 99%

“…11,12 Little is known about the purposes of this kind of decisions for patients with advanced dementia. However, some papers [13][14][15][16][17] analyzed end-of-life decisions in different countries retrospectively interviewing the physicians who had cared for the deceased person. An exploratory retrospective study 18 suggested that in Italy, clinical decisions in NHs during the last months of life were mostly curative, and palliative care had only a marginal role.…”

Section: Introductionmentioning

confidence: 99%

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Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Toscani¹,

Steen²,

Finetti³

et al. 2015

Journal of the American Medical Directors Association

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Objective. To describe and compare the decisions critical for survival or quality of life (CDs) made for patients with advanced dementia in nursing homes (NHs) and home care (HC) services.Design. Prospective cohort study with a follow-up of 6 months.Setting. Lombardy Region (NHs) and Reggio-Emilia and Modena Districts (HC), Italy.Participants. Patients (496 total; 315 in NHs and 181 in HC) with advanced dementia (Functional Assessment Staging Tool score >7) and expected survival >2 weeks.Measurements. At baseline, the patients' demographic data, date of admission and of dementia diagnosis, type of dementia, main co-morbidities, presence of pressure sores, ongoing treatments, and current prescriptions were abstracted from clinical records. At baseline and every 15 days thereafter, information regarding the patients' general condition and CDs (deemed critical by the doctor or team) was collected via interview with the doctor. For each CD, the physician reported the problem that led to the decision, the decision that was eventually made, the purpose of the decision, whether the decision had been discussed with and/or communicated to the family, who made the final decision, whether the decision was maintained after one week, whether it corresponded to what the doctor would have judged appropriate, and the expected survival of the patient (≤15 days).Results. For 267 of the 496 patients (53.8%; 60.3% in NHs and 42.5% at home), 644 CDs were made; for 95 patients, more than one CD was made. The problems that led to a CD were mainly infections (respiratory tract and other infections; 46.6%, 300/644 CDs); nutritional/hydration problems (20.6%; 133 CDs) and the worsening of a pre-existing disease (9.3%; 60 CDs). The most frequent type of decision concerned the prescription of antibiotics (overall 41.1%, 265/644; among NH patients 44.6%, 218/488; among HC patients, 30.2%, 47/156). The decision to hospitalize the patient was more frequently reported for HC than NH patients (25.5% vs. 3.1%). The most frequent purposes of the CDs in both settings were reducing symptoms or suffering (more so in NHs; 81.1 vs. 57.0% in HC) and prolonging survival (NH 27.5%; HC 23.1%; multiple purposes were possible). For 26 decisions (3.8%), the purpose was to ease death or not to prolong life. Conclusions.Decisions critical for the survival or quality of life of patients with advanced dementia were made for approximately half of the patients during a 6-month time frame, and such decisions were made more frequently in NHs than in HC. HC patients were more frequently hospitalized, and a sizeable minority of these patients were treated with the goal of prolonging survival. Italian patients with advanced dementia may benefit from the implementation of 5 palliative care principles, and HC patients may benefit from the implementation of measures to avoid hospitalizing patients near the end of life.

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“…It is important to stress the difficulty of organizing an AWD, the importance of specifying preferences and/or constraints on life support treatment, and the possibility that vague or inconsistent language can affect implementation (10) . Still, one of the main cautions against the use of these policies in decision-making at the end of life is that people may not be able to understand different treatment options without being properly informed (11) .…”

Section: Introductionmentioning

confidence: 99%

Desafios da implementação das diretivas antecipadas de vontade à prática hospitalar

et al. 2016

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Objective: to understand the diffi culties and limitations in the implementation of advance directives of will in the hospital context. Method: qualitative, exploratory and descriptive study conducted by means of semi-structured interviews with nurses, resident physicians and family caregivers. The data were analyzed by using discursive textual analysis based on the framework of bioethics principles. Results: the following categories emerged: Terminality as an expression of loss and cure as an option for care; concerns about legal implications; advance directives of will demand patient autonomy and proper communication. Conclusion: limitations and diffi culties in practice of advance directives of will from the perspective of the participants show, apart from countless confl icts and dilemmas regarding end-of life matters, that impending death experiences obstruct patients' wishes. Descriptors: Advance Directives; Terminally Ill; Nursing; Personal Autonomy; Caregivers. RESUMO Objetivo: conhecer as difi culdades e limitações relacionadas à implementação das Diretivas Antecipadas de Vontade no contexto hospitalar. Método: estudo qualitativo, do tipo descritivo e exploratório, mediante entrevista semiestruturada com enfermeiros, médicos residentes e cuidadores familiares. Os dados foram analisados por meio da técnica de análise textual discursiva e ancorados no referencial dos princípios da bioética. Resultados: emergiram as categorias: A terminalidade como expressão de derrota e a cura como opção para o cuidado? Receios das implicações legais; Diretivas Antecipadas de Vontade requerem autonomia do paciente e adequada comunicação. Conclusão: as limitações e difi culdades atribuídas à prática das diretivas antecipadas de vontade, na perspectiva dos participantes, indicam, além dos inúmeros confl itos e dilemas relacionados às questões de fi nal de vida, que vivências da iminência da morte não têm possibilitado que os desejos dos pacientes sejam respeitados. Descritores: Diretivas Antecipadas; Doente Terminal; Enfermagem; Autonomia Pessoal; Cuidadores. RESUMEN Objetivo: conocer difi cultades y limitaciones relacionadas a la implementación de las Directivas Anticipadas de Voluntad en el contexto hospitalario. Método: estudio cualitativo, de tipo descriptivo y exploratorio, mediante entrevista semiestructurada con enfermeros, médicos residentes y cuidadores familiares. Los datos fueron analizados por técnica de análisis textual discursivo, y fundamentados en referencial de principios de la bioética. Resultados: surgieron las categorías: ¿La terminalidad como expresión de derrota y la cura como opción para el cuidado? Temores a las implicaciones legales; Las Directivas Anticipadas de Voluntad requieren de autonomía del paciente y de adecuada comunicación. Conclusión: las limitaciones y difi cultades atribuidas a la práctica de las directivas anticipadas de voluntad, en la perspectiva de los participantes, indicaron, además de los numerosos confl ictos y dilemas relacionados al fi nal de la vida, que las vivenci...

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End-of-Life Decisions: A Cross-National Study of Treatment Preference Discussions and Surrogate Decision-Maker Appointments

Cited by 72 publications

References 42 publications

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making

Negotiating Transitions: Involvement of Critical Care Outreach Teams in End-of-Life Decision Making

Critical Decisions for Older People With Advanced Dementia: A Prospective Study in Long-Term Institutions and District Home Care

Desafios da implementação das diretivas antecipadas de vontade à prática hospitalar

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