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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Many critically ill patients in intensive care units (ICUs) are unable to communicate their wishes about goals of care, particularly about the use of life-sustaining treatments. Surrogates and clinicians struggle with medical decisions because of a lack of clarity regarding patients' preferences, leading to prolonged hospitalizations and increased costs. This project focused on the development and implementation of a tool to facilitate a better communication process by (1) assuring the early identification of a surrogate if indicated on admission and (2) clarifying the decision-making standards that the surrogate was to use when participating in decision making. Before introducing the tool into the admissions routine, the staff were educated about its use and value to the decision-making process. PROJECT AND METHODS: The study was to determine if early use of a simple method of identifying a patient's surrogate and treatment preferences might impact length of stay (LOS) and total hospital charges. A pre- and post-intervention study design was used. Nurses completed the surrogacy information tool for all patients upon admission to the neuroscience ICU. Subjects (total N = 203) were critically ill patients who had been on a mechanical ventilator for 96 hours or longer, or in the ICU for seven days or longer.The project included staff education on biomedical ethics, critical communication skills, early identification of families and staff in crisis, and use of a simple tool to document patients' surrogates and previously expressed care wishes. Data on hospital LOS and hospital charges were collected through a retrospective review of medical records for similar four-month time frames pre- and post-implementation of the assessment tool. ⋯ Project findings indicate that the use of a simple admission assessment tool, supported by staff education about its completion, use, and available resources, can decrease LOS and lower total hospital charges. The reasons for the difference between the pre- and post-intervention groups remain unclear. Further research is needed to evaluate if the quality of communications between patients, their legally authorized representatives, and clinicians--as suggested in the literature--may have played a role in decreasing LOS and total hospital charges.
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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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Ethics committees and palliative care consultants can function in a complementary fashion, seamlessly and effectively. Ethics committees can "air" and help resolves issues, and palliative care consultants can use a low-key, longitudinal approach.
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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.