Journal of palliative medicine
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Cystic fibrosis (CF) is a life-limiting congenital disease, with most patients dying at a young age of progressive lung disease. Lung transplantation offers hope for many but may not occur. There is little to guide the provision of palliative care to this young population who maintain hope in the possibility of lung transplantation. ⋯ We conclude that the circumstances surrounding the death of patients with CF holds challenges for their effective palliative care. CF patients continue life prolonging and preventative treatments until the last hours of life. There is an urgent need to examine palliative care approaches that may usefully coexist with maintaining transplantation options in the end-of-life care of this population.
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The importance of communication in close, personal relationships has been well-documented. At the end of life, communication, social relationships, and spirituality seem to have greater importance. Some studies suggest that the quality of life at the end of life (QOLEOL) involves these components. ⋯ The knowledge gained through this investigation laid the groundwork for future studies in identifying the importance of explicitly assessing relationships and supporting patients and families in their communication. In order to learn more about this phenomenon and establish a foundation for intervention, confirmation is required regarding the connections between the spiritual and social domains, the relationships between the specific communicative acts and the QOLEOL, as well as establishment of valid measurement approaches.
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To evaluate the FATE (Family Assessment of Treatment at End of Life) Survey for use as a nationwide quality measure in the VA health care system. ⋯ The FATE survey offers an important source of quality data that can be used to improve the end-of-life care of all veterans, regardless of the type of care they receive or their site of death.
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Most referrals to palliative care and hospice occur late in the trajectory of the disease although an earlier intervention could decrease patients' symptom distress. The purpose of this study was to determine the interval between first palliative care consult (PC1) and death (D) in patients diagnosed with advanced cancer (aCA) at our comprehensive cancer center and if such interval has increased over time. ⋯ The first palliative care consultation to death interval has decreased over time at our center. Education is needed among our referring physicians for earlier access to palliative care. Prospective studies are needed to establish the appropriate timing of the first palliative care consultation.
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The purpose of this study was to establish the reliability and construct validity of a new behavioral instrument to measure the presence and intensity of respiratory distress for patients who are unable to self-report about dyspnea. Patient reports about dyspnea were compared to displayed behaviors in three groups of 70 patients (n = 210). Pulmonary rehabilitation patients were assessed with the respiratory distress observation scale (RDOS) after controlled exercise while hypoxemic and subsequently asked to report current dyspnea on a dyspnea visual analog scale (DVAS). ⋯ Significant differences were found when RDOS scores were compared between groups indicating discriminant validity. The instrument is reliable and has convergent and discriminant validity. There are clinical and research applications for this scale for assessment of patients who are unable to self-report about distress from dyspnea.