PubMed · 16308638
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Y C Chee. 2005. Do no harm: do thyself no harm.. https://pubmed.ncbi.nlm.nih.gov/16308638/
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Comprehensive care of patients with end-stage renal disease (ESRD) requires expertise in advance care planning (ACP), including attention to ethical, psychosocial, and spiritual issues related to starting, continuing, withholding, and stopping dialysis therapy. ACP currently is under evolution from a document-driven decision-focused event. This article describes a new approach to ACP that emphasizes a relational patient-centered process that focuses on broader goals of care for a particular dialysis patient with known medical problems and is designed to serve as a guide to help nephrologists, social workers, and other health care professionals explore ACP discussions with their patients with ESRD. Specifically, we define ACP, highlight goals and key features of this facilitated ACP process, and provide an interview guide with examples of questions that can be used to explore the various aspects of ACP with patients and their families. Outcomes of such an ACP process will not be measured by increasing the number of completed advance directives, but by improving satisfaction with the entire end-of-life experience and having outcomes match patient preferences. It is expected that such a process will enhance shared decision making among patient, surrogate, and health care provider and help build strong and intimate relationships that can only serve to enhance end-of-life care. Throughout this process, patients are not abandoned as they confront the realities of declining health and functional status, but rather are supported through their illness and life on dialysis treatment.
Advance care planning ideally includes communication about values between patients, family members, and care providers. This study examined the utility of health care values assessment tools for older adults with and without dementia. Adults aged 60 and older, with and without dementia, completed three values assessment tools-open-ended, forced-choice, and rating scale questions-and named a preferred surrogate decision maker. Responses to forced-choice items were examined at 9-month retest. Adults with and without dementia appeared equally able to respond meaningfully to questions about values regarding quality of life and health care decisions. People with dementia were generally as able as controls to respond consistently after 9 months. Although values assessment methods show promise, further item and scale development work is needed. Older adults with dementia should be included in clarifying values for advance care planning to the extent that they desire and are able.
OBJECTIVE: Public opinion and professional organisations dominate the euthanasia debate, and there is a need to understand the opinions of people confronted with euthanasia. The aim of this study was to investigate whether patients and their GPs talk about euthanasia, and if so, how they communicate about this. METHODS: Qualitative, semi-structured interviews were held with 20 GPs and 30 of their patients in primary care in the Netherlands, where euthanasia is legalised. The patients had a life expectancy of less than 6 months, and cancer, heart failure or chronic obstructive pulmonary disease as underlying disease. RESULTS: Many patients did not communicate about euthanasia with their GP. Neither the patient nor the GP were clear in formulating their expectations concerning future decision making. CONCLUSION: The initial patient-GP communication consisted of an exchange of opinions about situations in which euthanasia would be desirable. GPs had different opinions about who should initiate communication, and found it difficult to judge the right moment to talk. PRACTICE IMPLICATIONS: It is essential to pay attention to education in communication about dying and euthanasia and to train the GPs to gain insight in the patient's end-of-life preferences, and to direct care at the best possible quality of life.