The Journal of clinical ethics
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With the improvements in medical care and resultant increase in life expectancy of the intellectually disabled, it will become more common for healthcare providers to be confronted by ethical dilemmas in the care of this patient population. Many of the dilemmas will focus on what is in the best interest of patients who have never been able to express their wishes with regard to medical and end-of-life care and who should be empowered to exercise surrogate medical decision-making authority on their behalf. A case is presented that exemplifies the ethical and legal tensions surrounding surrogate medical decision making for acutely ill, never-competent, profoundly intellectually disabled patients.
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This case raises issues regarding the anesthesia and surgical components of preoperative informed consent and the differing views of anesthesiologists and surgeons with regards to informed consent, in the context of conversion to open surgery from a minimally invasive approach.
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This issue's "Legal Briefing" column continues coverage of recent legal developments involving medical decision making for unbefriended patients. These patients have neither decision-making capacity nor a reasonably available surrogate to make healthcare decisions on their behalf. This topic has been the subject of recent articles in JCE. It has been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the "single greatest category of problems" encountered in bioethics consultation. Moreover, the scope of the problem continues to expand, especially with rapid growth in the elderly population and with an increased prevalence of dementia. Unfortunately, most U.S.jurisdictions have failed to adopt effective healthcare decision-making systems or procedures for the unbefriended. "Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform." Most providers are "muddling through on an ad hoc basis." Still, over the past several months, a number of state legislatures have finally addressed the issue. These developments and a survey of the current landscape are grouped into the following 14 categories. The first two categories define the problem of medical decision making for the unbefriended.The remaining 12 describe different solutions to the problem. The first six categories were covered in Part 1 of this article; the last eight categories are covered in this issue (Part 2). 1. Who are the unbefriended? 2. Risks and problems of the unbefriended. 3. ⋯ advance care planning, diligent searching, and careful capacity assessment. 4. Decision-making mechanisms and standards. 5. Emergency exception to informed consent. 6. Expanded default surrogate lists: close friends. 7. Private guardians. 8. Volunteer guardians. 9. Public guardians. 10. Temporary and emergency guardians. 11. Attending physicians. 12. Other clinicians, individuals, and entities. 13. Institutional committees. 14. External committees.
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The AMA Council on Ethical and Judicial Affairs (CEJA) has initiated an important discussion on medical professionalism and the use of social media by issuing thoughtful and practical guidance for physicians and medical students. The implications of online activities for trust in the profession, as well as for trust between patient and doctor, however, will need further exploration as digital life expands and evolves.
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Multicenter Study
Advance care directives: realities and challenges in Central California.
To discover where patients with advance directives (ADs) obtain them and to learn what patients' understanding is of how ADs function. ⋯ Few study participants had advance directives, and attorneys provided and discussed ADs with study participants more than physicians did. Because many patients with ADs seem not to fully understand them, new approaches to advance planning education must be developed.