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<b>Purpose and Methods</b>: Based on the medical records of 56 cases of death from hematologic malignancy, we investigated who decided end-of-life care in the terminal phase and at the end of life, what factor discourages patients from making self-decisions and whether an advance directive about end-of-life care is present. We then extracted the story of the family in decision-making for end-of-life care. <b>Results</b>: In 45 cases, the patient decided end-of-life care at the terminal phase. In 11 cases, the family made the decision on behalf of the patient. In the terminal phase, the factor that most discouraged patients from making a self-decision was dementia, but at the end of life the factor was symptomatic worsening in all cases. In 49 cases, the family decided end-of-life care at the end of life on behalf of the patient. Regarding end-of-life care policy, 49 cases hoped for "do not attempt resuscitation (DNAR)" and 7 cases hoped for life-support treatment. Advance directives were confirmed in 7 cases. Mental conflict about end-of-life care policy was perceived from the family's story. Despite small number of cases, it was suggested that an advance directive reduced psychological burden on the family. <b>Conclusion</b>: It is difficult for the patient to make self-decisions about end-of-care life at the end of life as compared to end-of-care life in the terminal phase. Further studies are required to assess the efficacy of an advance directive.
RESUMO
<b>Purpose</b>: The aim of this qualitative research was to identify the components of the changes in perception experienced by the physicians and nurses concerning the medical care they provide for Hematology Ward patients in the terminal phase. <b>Methods</b>: We performed semi-structured interviews with three physicians and five nurses concerning case conferences about patients in the terminal phase and both qualitatively and descriptively analyzed the data from those interviews. <b>Results</b>: We extracted the category of ‘consciousness of terminal phase’ from subcategories “consciousness about the period of terminal phase” and “change in care where patients’ remaining time is considered.” We also extracted the category ‘team approach’ from subcategories “know the importance of information sharing within the medical care team,” “nurses can play a coordinating role” and “opportunity to know the will of patientsand families.” <b>Conclusion</b>: The study showed that the case conferences made physicians and nurses conscious of the terminal phase on the medical ward where patients with various symptoms are mixed. We found that case conferences provided an opportunity for physicians and nurses to become conscious of the needs of the terminally ill, become aware of the importance of information sharing, and perceive the importance of the team approach. Furthermore the case conferences caused the nurses to become more aware of their role in the care of patients in the terminal phase. Palliat Care Res 2011; 6(2): 227-232
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Se presentan los conceptos generales sobre la fase terminal de las enfermedades en los niños, el abordaje terapéutico que se realiza en una institución de tercer nivel de atención, la forma en que se proporcionan las malas noticias a los padres y niños, los aspectos bioéticos y el apoyo médico, emocional y espiritual que se requiere en esta compleja situación.
This paper presents the general concepts regarding the terminal phase of a child's illness and the therapeutic approach undertaken at a third-level care institution. We discuss how this information is transmitted to parents and children along with the bioethical aspects and the medical, emotional and spiritual support required during this complex situation.