RESUMEN
Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals (HPs). Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs' perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs from different positions and experience, including doctors and nurses in four different departments (intensive care, oncology, palliative care, rehabilitation), were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient's timing and sharing the patient's wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs' emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation.
RESUMEN
In critical care when unconscious patients are assisted by machines, humanity is mainly ensured by respect for autonomy, realised through advance directives or, mostly, reconstructed by cooperation with relatives. Whereas patient-centred approaches are widely discussed and fostered, managing communication in complex, especially end-of-life, situations in open intensive care units is still a point of debate and a possible source of conflict and moral distress. In particular, healthcare teams are often sceptical about the growing role of families in shared decision-making and their ability to represent patients' preferences. New perspectives on substituted relational autonomy are needed for overcoming this climate of suspicion and are discussed through recent literature in the field of medical ethics.
Asunto(s)
Toma de Decisiones , Familia/psicología , Autonomía Personal , Conducta de Elección , Cuidados Críticos/métodos , Cuidados Críticos/tendencias , Humanos , Unidades de Cuidados Intensivos/organización & administración , Atención Dirigida al Paciente/métodos , Relaciones Médico-PacienteRESUMEN
PURPOSE: Opening intensive care units (ICUs) is particularly relevant because of a new Swiss law granting the relatives of patients without decision-making capability a central role in medical decisions. The main objectives of the study were to assess how the presence of relatives is viewed by patients, health care providers, and relatives themselves and to evaluate the perception of the level of intrusiveness into the personal sphere during admission. MATERIAL AND METHODS: In a longitudinal and prospective design, qualitative questionnaires were submitted concomitantly to patients, relatives, and health care providers consecutively over a 6-month period. The study was conducted in the 4 ICUs of the public hospitals of Canton Ticino (Switzerland). RESULTS: The questionnaires collected from patients, relatives, and health care providers were 176, 173, and 134, respectively. The analysis of the answers of 120 patient-relative pairs showed consistent results (P < .0001), whereas those of health care providers were significantly different (P < .0001), regarding both the usefulness of opening ICUs to patient relatives and what was stressful during admission. CONCLUSIONS: Relatives in these "open" ICUs share a great deal of intimacy with the patients. Their presence and the deriving benefits were seen as very positive by patients and relatives themselves. Skepticism, instead, prevailed among health care providers.
Asunto(s)
Familia/psicología , Unidades de Cuidados Intensivos/organización & administración , Visitas a Pacientes/psicología , Actitud del Personal de Salud , Actitud Frente a la Salud , Toma de Decisiones Clínicas , Revelación , Femenino , Humanos , Unidades de Cuidados Intensivos/ética , Unidades de Cuidados Intensivos/estadística & datos numéricos , Relaciones Interpersonales , Estudios Longitudinales , Masculino , Política Organizacional , Percepción , Estudios Prospectivos , Calidad de la Atención de Salud , Encuestas y Cuestionarios , Suiza , Consentimiento por TercerosRESUMEN
The Medical Humanities go beyond bioethics, cross over multiple disciplines and represent a new way of perceiving, seeing and thinking about illness. They represent a different view that gives value to the human side of treatment, that recognizes in self-narration an authentic and living foundation. Today, the technical aspects of medicine need more than ever to be accompanied by content derived from the arts and social or human sciences that focus on other, but not less important, aspects of being sick or in health. Everyday clinical practice in a "Medical Humanities style" can change the encounter with patients and their families, as well as the relationship with one's self and with colleagues. Adopting this wider perspective allows us to go further than contemporary biomedicine and continue to explore a unique understanding of mankind.