Callahan C M, Haag K M, Buchanan N N, Nisi R
Indiana University Center for Aging Research, Regenstrief Institute for Health Care, Indianapolis 46202-2859, USA.
J Am Geriatr Soc. 1999 Sep;47(9):1105-9. doi: 10.1111/j.1532-5415.1999.tb05235.x.
To describe clinical decision-making for percutaneous endoscopic gastrostomy from the perspective of patients, caregivers, and physicians.
A prospective cohort study.
All patients aged 60 and older receiving percutaneous endoscopic gastrostomies in a defined community over a 16-month period.
Either patients or their surrogate decision-makers completed a semistructured face-to-face interview to map out the information gathering process, expectations, and discussants involved in the decision to proceed with gastrostomy feeding. Physicians completed a written questionnaire to determine their likelihood of recommending percutaneous endoscopic gastrostomy, their involvement in the decision-making and recommendation process, and sources of perceived pressure in the decision-making.
We identified 100 patients who received percutaneous endoscopic gastrostomy during the study window and 82 primary care physicians who provided care in the defined community. The most common reasons for the procedure were stroke, neurologic disease, and cancer. Patients or their surrogate decision-makers reported multiple discussants, incomplete information, and considerable distress in arriving at the decision to proceed with artificial feeding. This distress was usually in the context of an acute and debilitating illness that often overshadowed the decision about artificial feeding. The decision for gastrostomy often appeared to be a "non-decision" in the sense that decision-makers perceived few alternatives. Physicians also reported considerable distress in arriving at recommendations to proceed with percutaneous endoscopic gastrostomy, including perceived pressures from families or other healthcare professionals. Physicians have clear patterns of triage for percutaneous endoscopic gastrostomy, but the assumptions underlying these patterns are not well supported by the medical literature.
Patients, caregivers, and physicians are often compelled to make decisions about long-term enteral feeding under tragic circumstances and with incomplete information. Decision-makers typically do not perceive any acceptable alternatives. Because data on these patients' long-term functional outcomes are lacking, decision-makers appear to focus primarily on the short-term safety of the procedure and the potential for improved nutrition.
从患者、护理人员和医生的角度描述经皮内镜下胃造口术的临床决策过程。
一项前瞻性队列研究。
在16个月期间，特定社区内所有60岁及以上接受经皮内镜下胃造口术的患者。
患者或其替代决策者完成了一次半结构化的面对面访谈，以梳理信息收集过程、期望以及参与决定进行胃造口术喂养的讨论者。医生完成了一份书面问卷，以确定他们推荐经皮内镜下胃造口术的可能性、他们在决策和推荐过程中的参与情况以及决策过程中感受到的压力来源。
我们确定了在研究期间接受经皮内镜下胃造口术的100名患者以及在特定社区提供护理的82名初级保健医生。该手术最常见的原因是中风、神经系统疾病和癌症。患者或其替代决策者报告称，有多个讨论者、信息不完整，并且在决定进行人工喂养时感到相当痛苦。这种痛苦通常发生在急性和使人衰弱疾病的背景下，这往往使关于人工喂养的决定黯然失色。胃造口术的决定在某种意义上似乎是一个“非决定”，因为决策者认为几乎没有其他选择。医生在做出进行经皮内镜下胃造口术的建议时也报告了相当大的痛苦，包括感受到来自家庭或其他医疗专业人员的压力。医生对经皮内镜下胃造口术有明确的分诊模式，但这些模式背后的假设并未得到医学文献的充分支持。
患者、护理人员和医生常常被迫在悲惨的情况下且信息不完整时做出关于长期肠内喂养的决定。决策者通常认为没有任何可接受的替代方案。由于缺乏这些患者长期功能结局的数据，决策者似乎主要关注手术的短期安全性和营养改善的可能性。
