Conceptions of Family-Centered Medical Decisionmaking and Their Difficulties

2003 ◽  
Vol 12 (2) ◽  
pp. 196-200 ◽  
Author(s):  
INSOO HYUN

Over the past decade or so, the predominant patient-centered ethos in American bioethics has come under attack by critics who claim that it is morally deficient in certain respects, particularly when viewed in the context of acute-care decisionmaking. One line of criticism has been that the current ethic of patient autonomy gives an individual competent patient far too much decisional authority over the terms of his own treatment so that the patient is at complete liberty to neglect the ways in which his medical decisions can drastically and negatively affect the lives of other family members. Given that family members must help shoulder the financial, emotional, and rehabilitative burdens involved in the patient's care, it has been argued that they too have a legitimate interest in choosing what sort of medical treatment the patient eventually receives. Another closely related line of criticism is that the prevailing focus on patient autonomy gives short shrift to the moral significance of the family as a genuine community. Echoing a view of the person advanced by most communitarian political theorists, some commentators have argued that the patient comes to the clinic so thoroughly embedded in a complex web of familial relationships and obligations that it does not make sense to identify him as the only person in the family to make decisions about treatment.

Author(s):  
Joanna Sturhahn Stratton ◽  
Katherine Buck ◽  
Allison M. Heru

The patient-centered medical home is a strong model of care that can be improved by harnessing the power of the patient’s family. This chapter highlights a three-step model of family involvement in patient care: (1) family inclusion, (2) family education and support, and (3) family systems therapy. The model is grounded in evidence-based research and incorporates the essential components of integrated care. A clinical case example illustrates how to involve the family in a stepwise progression. This model of family-centered care is applicable in any health care setting.


2021 ◽  
Vol 30 (1) ◽  
pp. 11-20
Author(s):  
Catherine L. Auriemma ◽  
Michael O. Harhay ◽  
Kimberley J. Haines ◽  
Frances K. Barg ◽  
Scott D. Halpern ◽  
...  

Background Despite increased emphasis on providing higher-quality patient- and family-centered care in the intensive care unit (ICU), there are no widely accepted definitions of such care in the ICU. Objectives To determine (1) aspects of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after hospital discharge, and (3) outcomes perceived as equivalent to or worse than death. Methods Semistructured interviews (n = 49) of former patients of an urban, academic medical ICU and their family members. Two investigators reviewed all transcripts line by line to identify key concepts. Codes were created and defined in a codebook with decision rules for their application and were analyzed using qualitative content analysis. Results Salient themes were identified and grouped into 2 major categories: (1) processes of care within the ICU— communication, patient comfort, and a sense that the medical team was “doing everything” (ie, providing exhaustive medical care) and (2) patient and surrogate outcomes after the ICU—survival, quality of life, physical function, and cognitive function. Several outcomes were deemed worse than death: severe cognitive/physical disability, dependence on medical machinery/equipment, and severe/constant pain. Conclusion Although survival was important, most participants qualified this preference. Simple measures of mortality rates may not represent patient- or family-centered outcomes in evaluations of ICU-based interventions, and new measures that incorporate functional outcomes and patients’ and family members’ views of life quality are necessary to promote patient-centered, evidence-based care.


Author(s):  
Ari Damayanti Wahyuningrum

Collaborative action between families and health professionals, in this case nurses, doctors, nutritionists, pharmacies in forming harmonious support is the philosophy of family centered nursing care which aims to involve families as the main focus in care. The aim of this literature review is to identify family-centered family member care: a literatu review. This language method uses literature reviews which are summaries of 10 articles in the publication years of 2020-2021 on search 4 databased electronic searches containing namely Scopus, ProQuest, Pubmed, and Scient Direct. This review used prisms. The eligibility of these studies were from its title, abstract, research methodology, results and discussion. The results of the review were presented in narrative form. The results of a review of 10 articles found that the form family centered care Conclusion: The family is considered a partner in the care of other family members. The concept of family centered care is a philosophy in nursing where the role of the family is very important in caring for family members who are sick.


1993 ◽  
Vol 4 (3) ◽  
pp. 550-557
Author(s):  
Brian E. Mendyka

Critically ill patients belong to larger phenomenologic systems, their families. What affects one member affects other system members. Nursing care requires meticulous observation and assessment of family concerns, understanding of clinical events, and practical experience to achieve positive outcomes even if a death occurs. It seems easy to dismiss the family from the clinical and technical matters of the critical care unit, especially when much nursing energy goes into operating peripheral machinery, performing tasks, and pursuing ever-changing patient-centered goals. The following case study attempts to redefine and redirect the focus of what “patient-centered” means to include the nurse, the patient, and the family in the meaning of the core of family-centered care


2020 ◽  
Vol 26 (4) ◽  
pp. 315-326
Author(s):  
Christopher J. Lin ◽  
Yao I. Cheng ◽  
Patricia A. Garvie ◽  
Lawrence J. D’Angelo ◽  
Jichuan Wang ◽  
...  

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE®) pACP intervention on families’ anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE® ( n = 54 dyads) or control ( n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (β = −4.71, 95% confidence interval [CI] = [−8.20, −1.23], p = .008). Male family members were less anxious than female family members (β = −4.55, 95% CI = [−6.96, −2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (β = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.


2021 ◽  
Vol 20 (4) ◽  
pp. 673-699
Author(s):  
Rosa María Cárdaba García ◽  
Inés Cárdaba García

Objetivo: Explorar los programas orientados a la participación de familiares en situaciones de PCR en adultos en el medio extrahospitalario.Método: Revisión narrativa de la literatura científica, en bases de datos primarias (Scielo, PubMed, Cuiden y Cochrane Plus y CINAHL), con empleo de lenguaje estructurado DeCS y MeSH, de 2005 a 2020, en español e inglés. Se obtienen 23 estudios.Resultados: Los estudios muestran que el duelo de los familiares de una parada cardiorrespiratoria en el medio extrahospitalario es menos traumática si se les permite estar presentes. Permanecer junto a la víctima debe asegurarse salvo que el profesional considere que es perjudicial. Las ventajas de la presencia de familiares son tanto para el familiar como para el equipo asistencial. A pesar de existir una necesidad social y ética de acuerdo con el principio de autonomía del paciente para la implementación de estos programas apenas existen y esto suele ser debido a las resistencias generadas por los propios profesionales o los gestores.Conclusiones: Las principales sociedades científicas internacionales recomiendan en caso de PCR en el adulto en el medio extrahospitalario, la implantación de programas para la presencia de familiares, lo que hace que se convierta en una necesidad. La literatura científica demuestra más ventajas que inconvenientes, fundamentalmente en cuanto a un mejor duelo en familiares y mayor satisfacción y menor posibilidad de demandas jurídicas en los sanitarios, promoción de la humanización de los cuidados que se traduciría en un gasto asistencial menor en prevalencia de duelo patológico. Objective: Explore programs aimed at the participation of family members in situations of CRP in adults in the out-of-hospital setting.Method: Narrative review of the scientific literature, in primary databases (Scielo, PubMed, Cuiden and Cochrane Plus and CINAHL), using DeCS and MeSH structured language, from 2005 to 2020, in Spanish and English. 23 studies are obtained.Results: Studies show that mourning for family members of a cardiorespiratory arrest in the out-of-hospital setting is less traumatic if they are allowed to be present. Staying with the victim must be ensured unless the professional considers that it is harmful. The advantages of the presence of family members are as much for the family member as for the healthcare team. Despite the existence of a social and ethical need in accordance with the principle of patient autonomy for the implementation of these programs, they hardly exist and this is usually due to the resistance generated by the professionals or managers themselves.Conclusions: In the case of cardiorespiratory arrest in adults in the out-of-hospital setting, the main international scientific societies recommend the implementation of programs for the presence of family members, which makes it a necessity. The scientific literature demonstrates more advantages than disadvantages, fundamentally in terms of better grief in family members and greater satisfaction and less possibility of legal claims in health professionals, promoting the humanization of care that would translate into lower healthcare costs in the prevalence of grief pathological. Objetivo: explorar programas voltados à participação de familiares em situação de PCR em adultos no ambiente extra-hospitalar.Método: revisão narrativa da literatura científica, em bases de dados primárias (Scielo, PubMed, Cuiden e Cochrane Plus e CINAHL), utilizando a linguagem estruturada DeCS e MeSH, de 2005 a 2020, em espanhol e inglês. 23 estudos foram obtidos.Resultados: estudos mostram que o luto de familiares por parada cardiorrespiratória em ambiente extra-hospitalar é menos traumático se eles puderem estar presentes. A permanência com a vítima deve ser assegurada, a menos que o profissional considere prejudicial. As vantagens da presença de familiares são tanto para o familiar quanto para a equipe de saúde. Apesar da existência de uma necessidade social e ética de acordo com o princípio da autonomia do paciente para a implantação desses programas, eles quase não existem e isso geralmente se deve às resistências geradas pelos próprios profissionais ou pelos gestores.Conclusões: as principais sociedades científicas internacionais recomendam, no caso da PCR em adultos em ambiente extra-hospitalar, a implantação de programas de presença de familiares, o que a torna uma necessidade. A literatura científica mostra mais vantagens do que desvantagens, fundamentalmente em termos de melhor luto nos familiares e maior satisfação e menor possibilidade de demandas judiciais nos trabalhadores da saúde, promovendo a humanização da assistência que se traduziria em menores gastos com saúde nas prevalências do luto patológico.


Author(s):  
Daniela Leone ◽  
Stefania Anania ◽  
Ivan Fossati ◽  
Claudio Cassardo ◽  
Vittorina Zagonel ◽  
...  

Current literature only partially explored the physician’s experience of being with a cancer patient in pain. The aim of the study was to explore the internal representation of physicians specialized in oncology and pain medicine of a challenging meeting with a cancer patient in pain. Using a written open narrative format, 46 physicians specialized in oncology and pain medicine were asked to tell “the story of a challenging meeting with a patient who was in pain”. The narrations were analysed in accordance to Interpretative Phenomenological Analysis. Three main categories were identified each with sub-themes: (1) “Non-written stories”; (2) “Written stories”; (3) “Family members”. The study showed the difficulty to be patient centered, in a context in which the pain is central, forbidding a relation between human beings. The family members, a third party, could be an interesting medium to consent a possible, and difficult, human relation.


2013 ◽  
Vol 15 (3) ◽  
pp. 130-136 ◽  
Author(s):  
David Rintell ◽  
Richard Melito

This article presents a model for intervening with families that are addressing a new diagnosis of multiple sclerosis (MS) in one member. The model is collaborative, integrative, and family-centered. It involves both working with the family collaboratively and providing strategies to promote greater collaboration within the family. The model integrates elements of crisis intervention theory, psycho-education, and family-centered approaches. The model was developed with families addressing MS, and was piloted with three families. The intervention was found to improve family members' ability to collaborate with each other. Such increased collaboration may enhance the family's ability to manage long-term illness more effectively, help the family address the impact of the illness on all family members, and generally improve the family's quality of life.


2021 ◽  
pp. 723-728
Author(s):  
Douglas S. Rait

The assumption that family relationships play an important role in the care and well-being of the cancer patient may be overlooked simply because it is so universal. At the same time, the elevated role of the family as a primary unit of care in oncology settings is now beginning to receive proper attention in medical and psychiatric circles, and growing evidence supports the efficacy of family interventions for patients with cancer. Family-centered, collaborative models of mental health consultation for patients with cancer are consistent with, and offer an expansion to, current patient-centered models of care in oncology settings. Normative couple and family responses to stages of cancer and its treatment are described, and premises of the family-systems model for assessment and consultation are presented. A case example illustrates how the dimensions of family development, family history, family relationships, and the family’s relationship with providers contribute to a family-centered assessment and consultation.


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