A consensus-based approach to providing palliative care to patients who lack decision-making capacity. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine.
ABSTRACT Making palliative care decisions for a patient who lacks decision-making capacity presents several challenges. Other people, such as family and caregivers, must choose for the patient. The goals and values of these decision makers may conflict with those of each other and with those of the patient, who now lacks the capacity to participate in the decision. This paper presents a case study of a patient with severe Alzheimer disease who has two common clinical problems: neurogenic dysphagia and aspiration pneumonia. The case study describes a consensus-based decision-making strategy that keeps what is known about the patient's wishes and values in the foreground but also expects guidance from the physician and elicits input from family members and other people who care for and have knowledge about the patient. The steps of this process, including key clinical prompts and potential transition statements, are outlined and described. The overall goal of the case commentary is to demonstrate that physicians can guide a highly emotional and personal process in a structured manner that has meaning for the patient, family, physician, and other caregivers.
SourceAvailable from: Consuelo H Wilkins
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ABSTRACT: Objectives. To explore attitudes to making end-of-life decisions (ELDs) in a group of elderly Chinese with dementia and their carers. Methods. Four hypothetical case vignettes depicting different potentially life-threatening medical conditions in patients with dementia were presented. Subjects were interviewed about their treatment preferences and emotions after decision-making. Results. Most subjects with dementia preferred to follow the 'natural' way. They accepted that it was their fate and felt at ease making ELDs. They had no regrets though a strong feeling of helplessness was observed. The carers had different views on different scenarios. They would consider possibility of saving life as well as the quality of life. Carers had mixed feelings after making ELDs. A sense of guilt and helplessness, as well as uncertainty about the choice, was a common finding. Conclusions. Although the ability to express personal choices about ELD is impaired in people with advanced dementia, choices and feelings should be respected. The emotional burden imposed by the proxy decision carers who are forced to make should be acknowledged. Advance planning with collaborative decisions by people with dementia, their families, and health care professionals is recommended and may help to reduce the adverse emotions felt by relatives after making ELDs.
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ABSTRACT: Abstract Background: Many people with dementia die in long-term care settings. These patients may benefit from a palliative care goal, focused on comfort. Admission may be a good time to revisit or develop care plans. Objective: To describe care goals in nursing home patients with dementia and factors associated with establishing a comfort care goal. Design: We used generalized estimating equation regression analyses for baseline analyses and multinomial logistic regression analyses for longitudinal analyses. Setting: Prospective data collection in 28 Dutch facilities, mostly nursing homes (2007-2010; Dutch End of Life in Dementia study, DEOLD). Results: Eight weeks after admission (baseline), 56.7% of 326 patients had a comfort care goal. At death, 89.5% had a comfort care goal. Adjusted for illness severity, patients with a baseline comfort care goal were more likely to have a religious affiliation, to be less competent to make decisions, and to have a short survival prediction. Their families were less likely to prefer life-prolongation and more likely to be satisfied with family-physician communication. Compared with patients with a comfort care goal established later during their stay, patients with a baseline comfort care goal also more frequently had a more highly educated family member. Conclusions: Initially, over half of the patients had a care goal focused on comfort, increasing to the large majority of the patients at death. Optimizing patient-family-physician communication upon admission may support the early establishing of a comfort care goal. Patient condition and family views play a role, and physicians should be aware that religious affiliation and education may also affect the (timing of) setting a comfort care goal.Journal of Palliative Medicine 09/2014; DOI:10.1089/jpm.2014.0205 · 2.06 Impact Factor