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Family caregivers, patients and physicians: ethical guidance to optimize relationships.

ABSTRACT: Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health care professionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient-physician-caregiver relationships.

SUBMITTER: Mitnick S

PROVIDER: S-EPMC2839338 | biostudies-literature | 2010 Mar

REPOSITORIES: biostudies-literature

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Family caregivers, patients and physicians: ethical guidance to optimize relationships.

Mitnick Sheryl S Leffler Cathy C Hood Virginia L VL

Journal of general internal medicine 20100301 3

Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health care professionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals i ...[more]

PMID: 20063128

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Project description:BACKGROUND:Cancer is a growing concern in Ethiopia. Though communication is essential for the treatment process, few studies have looked at communication in Ethiopian cancer care. Due to the large number of patients and scarcity of resources, it is vital to understand how to manage consultations in order to effectively help as many patients as possible in this challenging work environment. Thus, research is needed to analyze and understand the communicative challenges experienced by physicians, patients, and family caregivers, in order to successfully handle patient care in practice. OBJECTIVE:We explore communication in Ethiopian cancer care and present the main challenges faced by physicians, patients, and family caregivers. METHODS:This explorative qualitative study was conducted at the Oncology Department of the Tikur Anbessa (Black Lion) Specialized Teaching Hospital (TASH) in Addis Ababa, Ethiopia. A triangulation of data collection methods was used: 91 audio-recorded, semi-structured interviews and 21 video-recordings of authentic interactions during hospital rounds. The aim was to obtain as complete a picture as possible of communication from the perspectives of physicians, patients, and family caregivers. The interviews were analyzed using thematic content analysis and the identified themes were supported by excerpts from the transcribed recordings. RESULTS:Eight themes emerged from the data. Workload and time pressure, in combination with restricted space for privacy, limited the possibilities for physicians to deliver detailed information and provide emotional support. Furthermore, patient literacy levels, in combination with no or little cancer awareness, financial problems, reliance on traditional and religious treatments, the stigma of cancer, and a fatalistic attitude, resulted in delays in patients seeking care and participating in positive health behaviors, and, subsequently, often resulted in an unwillingness to openly discuss problems with physicians and adhere to treatment. The study also illustrates the paramount role of family in physician-patient communication in Ethiopia. Though family caregivers provide a valuable interpreting support when patients have limited language skills, they can also prevent patients from sharing information with physicians. Another important finding is that family caregivers were often responsible for making decisions about treatment and avoided telling patients about a poor prognosis, believing that conveying bad news may upset them. All of these themes have important implications for the role of ethically acceptable communication in patient-centered care. CONCLUSIONS:This study has identified a number of serious challenges for successful and ethically acceptable health communication in Ethiopian cancer care. The study contributes to our understanding of the complexity around the role of family, combined with patients' dependency on family members for communication, support, and access to care, which creates particular ethical dilemmas for the medical staff. The questions raised by this study concern how to organize consultations to achieve patient-centered health communication, while maintaining a constructive alliance with the family and not jeopardizing the patient's continued access to care. The integration of communication training for medical students in Ethiopia, with a focus on ethical guidelines for family-centered patient consultation suitable for these circumstances, would be an essential step.

Project description:Background General practitioners are considered to be well suited when it comes to addressing the information and care needs of family caregivers. The aim of the present study is to examine how general practitioners assess their possibilities to support caregivers, what priorities they set and to what extent they experience challenges.Methods and participants In the course of an online survey with a postal cover letter, a total of 3,556 GPs in in Baden-Württemberg, Hesse and Rhineland-Palatinate were interviewed between February and June 2021. Due to the exploratory approach of the study, only a descriptive data analysis was carried out.Results 68 % of the GPs surveyed often deal with family caregivers in everyday practice; 77 % consider the GP's office to be well suited as the primary point of contact for family caregivers and care coordination. Often it is caregiving relatives who ask the GP about the issue of care (89 %). Frequent contents concern a deterioration in the care situation (75 %) and a change in the need for care (84 %); consultations in the initial phase of care are less common (40 %). There are differences between urban and rural doctors in the perception of the needs of caregivers and the setting of priorities. Rural doctors give more weight to proactive and psychosocial care, whereas doctors in urban regions rely on the specialist and support network. GPs experience various challenges while supporting caregivers, including the timely organization of suitable relief offers (87 %), the referral to suitable offers of help (79 %) or the early identification of informal caregivers (59 %).Discussion GPs can play a central role in supporting family caregivers. A crucial prerequisite for this is that family caregivers are recognized and involved at an early stage. Consistent references to offers of help make it easier for family caregivers to organize care and to receive (psychosocial) support. In addition, it is important that GPs take into account the needs, desires and stresses of both caregivers and those being cared for.

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Family caregivers, patients and physicians: ethical guidance to optimize relationships.

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Family caregivers, patients and physicians: ethical guidance to optimize relationships.

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