The Journal of clinical ethics
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This issue's "Legal Briefing" column covers 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 define the problem of medical decision making for the unbefriended. The remaining 12 categories describe different solutions to the problem. The first six of these solutions are discussed in this article (Part 1). The last eight solutions will be covered in the Summer 2012 issue of JCE (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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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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Central to ethically justified clinical trial design is the need for an informed consent process responsive to how potential subjects actually comprehend study participation, especially study goals, risks, and potential benefits. This will be particularly challenging when studying deep brain stimulation and whether it impedes symptom progression in Parkinson's disease, since potential subjects will be Parkinson's patients for whom deep brain stimulation will likely have therapeutic value in the future as their disease progresses. ⋯ This combination of responses highlights two issues to which investigators need to pay close attention in future trial designs: (1) how, and in what ways, informed consent processes reinforce potential subjects' preconceived understandings of benefit, and (2) that potential subjects see themselves as part of a community of Parkinson's sufferers with responsibilities extending beyond self-interest. More importantly, it invites speculation that a different paradigm for informed consent may be needed.
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This issue's "Legal Briefing" column covers recent legal developments involving POLST (physician orders for life-sustaining treatment.) POLST has been the subject of recent articles in JCE. It has been the subject of major policy reports and a recent New York Times editorial. And POLST has been the subject of significant legislative, regulatory, and policy attention over the past several months. ⋯ What is the role of the federal government? 13. International adoption. 14. Court cases.