Journal of palliative medicine
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Clinical guidelines are systematically developed statements that influence medical practice, education, and funding. Guidelines represent the consensus of leaders, often based on systematic reviews of the literature, regarding the "state of the art." ⋯ Current national guidelines on nine chronic, life-limiting illnesses offer little guidance in end-of-life care issues despite a recent increase in attention to this aspect of medical care.
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Medical care of patients with life limiting illness remains fraught with serious deficiencies, including inadequate advance care planning, delayed hospice referral, and continued delivery of aggressive treatment that is overtly counter to patients' preferences. ⋯ We argue that these barriers must be overcome before deficiencies in end-of-life care can be fully ameliorated.
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In reviewing the literature, there are few articles describing the role of the speech-language pathologist in hospice. Communication impairments can impact upon the hospice team's ability to provide symptom control and supportive psychosocial care, and diminish the patient's ability to guide the decision making process and maintain social closeness with family. ⋯ Four primary roles of the speech-language pathologist in hospice can be described. (1) To provide consultation to patients, families, and members of the hospice team in the areas of communication, cognition, and swallowing function; (2) To develop strategies in the area of communication skills in order to support the patient's role in decision making, to maintain social closeness, and to assist the client in fulfillment of end-of-life goals; (3) To assist in optimizing function related to dysphagia symptoms in order to improve patient comfort and eating satisfaction, and promote positive feeding interactions for family members and (4) To communicate with members of the interdisciplinary hospice team, to provide and receive input related to overall patient care. Further development of the speech-language pathologist as a participating member of the hospice interdisciplinary team would support the overall goal of providing quality care for patients and families served by hospice.
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Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. ⋯ For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.
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Cultural mistrust is a prominent barrier to the involvement of African Americans in hospice care. While disavowing the theory that cultural mistrust has its origin in any single factor or event, it is argued that there needs only to exist the cultural construct of community for cultural mistrust to perpetuate itself among any ethnic group. ⋯ From a perspective that accepts the existence of the phenomenon of cultural mistrust, suggestions for structuring training for cultural competence are discussed. These suggestions are relevant for workers in institutions that serve the African American community in critical health care areas in general, and administrators and staff of hospices in particular.