PubMed · 8324710
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P G Winkelaar. 1993-07-15. Let me decide.. https://pubmed.ncbi.nlm.nih.gov/8324710/
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OBJECTIVE: To understand how elderly patients think about and approach future illness and the end of life. DESIGN: Qualitative study conducted 1997-9. SETTING: Physician housecall programme affiliated to US university. PARTICIPANTS: 20 chronically ill housebound patients aged over 75 years who could participate in an interview. Participants identified through purposive and random sampling. MAIN OUTCOME MEASURES: In-depth semistructured interviews lasting one to two hours. RESULTS: Sixteen people said that they did not think about the future or did not in general plan for the future. Nineteen were particularly reluctant to think about, discuss, or plan for serious future illness. Instead they described a "one day at a time," "what is to be will be" approach to life, preferring to "cross that bridge" when they got to it. Participants considered end of life matters to be in the hands of God, though 13 participants had made wills and 19 had funeral plans. Although some had completed advance directives, these were not well understood and were intended for use only when death was near and certain. CONCLUSIONS: The elderly people interviewed for this study were resistant to planning in advance for the hypothetical future, particularly for serious illness when death is possible but not certain.
Most people in developed countries will live with a serious, eventually fatal, chronic condition for months or years before dying; yet, the delivery of health care services has only just recently begun adapting to this reality. Quality improvement methods have been effective in helping clinical services to make substantial changes quickly. Quality improvement requires stating an aim, measuring success, and testing possible improvements. The testing of changes requires a clinical team to Plan, Do, Study, and Act on new insights (the "PDSA cycle"). Repeated PDSA cycles generate deep understanding of complex systems and make sustainable improvements rapidly. This paper discusses a composite case study in a nursing home setting, which builds on experience with multisite collaborative efforts and introduces quality improvement methods in the context of end-of-life care.
Studies of dying patients have shown that about half would like the option of physician-assisted suicide (PAS) to be available for possible future use. Those percentages decrease significantly with each step patients take toward action. Studies show that although about 10% of patients seriously consider PAS, only 1% of dying patients specifically request it, and 1 in 10 of those patients actually receive and take a lethal prescription. However, most patients' desires for PAS diminish as their underlying concerns are identified and addressed directly. To help identify concerns motivating a patient's request for PAS, physicians should talk with patients about their expectations and fears, options for end-of-life care, goals, family concerns and burdens, suffering or physical symptoms, sense of meaning and quality of life, and symptoms of depression. A patient with advanced amyotrophic lateral sclerosis (ALS) who requested PAS illustrates how a hasty response may adversely affect patient care and the health care team. Although physicians should remain mindful of their personal, moral, and legal concerns, these concerns should not override their willingness to explore what motivates a patient to make this request. When this approach is taken, suffering can be optimally alleviated and, in almost all cases, the patient's wishes can be met without PAS.