Palliative medicine
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Palliative medicine · Sep 2013
End-of-life decisions for people with intellectual disabilities, an interview study with patient representatives.
Not much is known about the process of end-of-life decision-making for people with intellectual disabilities. ⋯ From the perspective of the patient representatives, the process of end-of-life decision-making can be improved by ensuring clear roles and an explicit description of the tasks and responsibilities of all participants. Regular discussion between everyone involved including people with intellectual disabilities themselves can improve knowledge about each other's motives for end-of-decisions and can clarify expectations towards each other.
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Palliative medicine · Sep 2013
The experiences of patients with ascites secondary to cancer: a qualitative study.
Ascites secondary to cancer has a dramatic effect on all aspects of patients' lives. Healthcare professional surveys have shown that there is considerable variation in the management of ascites. ⋯ Patients' experiences of ascites management are variable and could be improved. These experiences can inform healthcare professionals. They have views on when semi-permanent drains should be offered and future research.
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Palliative medicine · Sep 2013
The 'dis-ease' of dying: challenges in nursing care of the dying in the acute hospital setting. A qualitative observational study.
Changes in health care and an ageing population have meant that more people are dying in the acute hospital setting. While palliative care principles have resulted in quality care for the dying, many patients die in an acute care, still receiving aggressive/resuscitative care. ⋯ When patients are terminally ill, acknowledgement of dying is essential in providing appropriate care. It should not be assumed that all nurses are adequately prepared to provide dying care. Further work is necessary to investigate how the attitudes of nurses towards caring for dying patients in the acute hospital setting may impact care of the dying patient.
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Palliative medicine · Sep 2013
Disconnect between emergency contacts and surrogate decision-makers in the absence of advance directives.
The role played by emergency contacts can be extensive particularly for chronically seriously ill patients. If the patient's condition suddenly deteriorates, the emergency contact may be asked to make decisions that should instead fall to a designated surrogate decision-maker. ⋯ In roughly one-third of instances, the selected surrogate was not the same person listed in official medical records as the emergency contact, which may pose potential problems in medical decision-making in the absence of advance directives.
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Palliative medicine · Sep 2013
A question prompt list for patients with advanced cancer in the final year of life: development and cross-cultural evaluation.
Clinicians and patients find prognosis and end-of-life care discussions challenging. Misunderstanding one's prognosis can contribute to poor decision-making and end-of-life quality of life. A question prompt list (booklet of questions patients can ask clinicians) targeting these issues may help overcome communication barriers. None exists for end-of-life discussions outside the palliative care setting. ⋯ Participants endorsed the question prompt list as acceptable and useful. Feedback resulted in two distinct versions of the question prompt list, accommodating differences between Australian and US approaches to end-of-life discussions, highlighting the appropriateness of tailoring communication aides to individual populations.