Journal of palliative medicine
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Dyspnea is a common symptom experienced by many patients with chronic, life-threatening, and/or life-limiting illnesses. Although it can be defined and measured in several ways, dyspnea is best described directly by patients through regular assessment, as its burdens exert a strong influence on the patient's experience throughout the trajectory of serious illness. Its significance is amplified due to its impact on family and caregivers. ⋯ This article, the first in a two-part series, reviews the identification and assessment of dyspnea, the burden it entails, and the underlying respiratory and nonrespiratory etiologies that may cause or exacerbate it.
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Dying in the preferred place is considered a key requirement for a "good death." The aims of our study were to explore preferred places of death of deceased people and their bereaved relatives in Rhineland-Palatinate (Germany). We further wanted to assess the congruence between preferred and actual place of death. ⋯ Because the availability of a relative was the most important factor to die in the preferred place, relatives of dying people should be supported in providing informal care. The introduction of palliative home care teams should allow more people to die in their preferred place by easing the burden of informal carers.
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Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. ⋯ The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families.
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Pain management disparities exist among patients not receiving palliative care. We examined pain outcomes for disparities among patients receiving palliative care. ⋯ Pain outcomes were similar or better among non-white races than whites. Surgical patients reported more final pain than cancer patients.
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Educational level has repeatedly been identified as an important determinant of access to health care, but little is known about its influence on end-of-life care use. ⋯ Less well-educated people appear to be disadvantaged in terms of access to specialist palliative care services, and GP contacts at the end of life, suggesting a need for empowerment of less well-educated terminally ill people regarding specialist palliative and general end-of-life care use.