Patients are talking - and we'd BETTER listen!

Joseph M Civetta

摘要

In an actual crisis, immediate treatment is necessary, even before the diagnosis is fully understood: a sudden hypotensive episode prompts a fluid bolus, “the patient desatted” and the inspired oxygen concentration is increased. Have we reached a similar crisis in end-of-life decision making? While we have been struggling with the moral and ethical issues involved, defining quality of life and patient’s autonomy and making some progress, has our response with immediate treatment been enough? The medical literature is replete with articles that document our inability to deal with end-of-life decision making so that patients still die with pain. We still have difficulty making decisions in accordance with their wishes and with support from the family. In fact, one of the few improvements over the past few years has been the effectiveness of the hospice movement. The word “hospice” derives from the middle-ages at the time of the crusades. It was a place to rest before preceding on with the rest of one’s journey. While hospice centers and home hospice care are perceived as valuable resources, perhaps the most valuable available to patients and families, oftentimes, the concept must be expressed in a separate building or setting as the acute care setting remains unable to respond to these needs of patients. I believe that we must listen now to some unpleasant and accurate expressions of the agony of patients and families.Christina Campi (1) published a letter on The New York Times Web-Site, January 5, 1998, entitled “When Dying Is as Hard as Birth”. The first sentence: “My sister, mother and husband died within nine months of each other last year. The cause of death: morphine.” We will discuss the principle of double effect but her misinterpretation is striking and noteworthy: “ This process of death by sedation, called “double effect” in the medical profession, is the physician-assisted death that occurs every day, but is largely ignored in the current debate on death and dying in America”. What a tragedy that she not only did not understand the principle of double effect but equated the ethically correct alleviation of suffering, with physician-assisted death, an act with a totally different moral implication. Further, she complains that she got little guidance, that she wasn’t competent to make decisions but that she was “left to drive the engine of death.” Among other quotations that cry out from agony, I find this to be the saddest of all: “Did I kill him? I don’t know. Did I push the morphine pump to warp speed to relieve his suffering or mine? I don’t know.” We failed her. I surmise that her relatives at least received sufficient analgesia as they were dying but our task is to ensure that family members are assisted in understanding end-of-life decision making as well. For whatever reason, it is clear that in this instance, she never understood that intention determines the morality of actions and her relatives were not killed but died from the inexorable progression of disease. In fact, liberal use of analgesics, justified by the principle of double effect, is to be desired among caregivers and it would appear that their effects were praiseworthy; it is hard to know whether they failed to communicate well or she was just unable to understand what they said.Maureen D’Honau published “On Machine: His Doctors avoided the Dying Patient’s Agony” in the San Francisco Examiner. It was subsequently reprinted in Connecticut Medicine (2) in June 1998. She starts by recounting the episode: by specifying the number of words involved, should we infer that this was the extent of the discussion? “The doctor asked the question and waited. Words: I counted them. From the doctor there were six: “Do you want him on machine?” From my husband, Charlie, there had been three: “I can’t breathe.” From me there would be one: “Yes” or “no.” “No” meant watching Charlie suffocate. How could I choose that? What fate had delivered the sentence to me? “Ye

机译：在实际危机中，甚至在尚未完全理解诊断之前，就必须立即进行治疗：突然的低血压发作会提示静脉推注，“患者感到沮丧”，并且吸入的氧气浓度增加。我们在寿命终止决策中是否遇到了类似的危机？尽管我们一直在努力解决所涉及的道德和伦理问题，确定生活质量和病人的自主权并取得一定进展，但我们对立即治疗的反应是否足够？医学文献中充斥着许多文章，这些文章记录了我们无法处理生命周期决策，从而使患者仍然死于痛苦。我们仍然很难根据他们的意愿和家人的支持做出决定。实际上，过去几年来临终关怀运动的有效性是其中几项改进。 “临终关怀”一词起源于十字军东征时的中世纪。在继续旅程之前，这里是一个休息的地方。虽然临终关怀中心和家庭临终关怀护理被认为是宝贵的资源，也许通常是患者和家庭可获得的最有价值的资源，但由于急性护理环境仍然无法满足患者的这些需求，因此必须在单独的建筑物或环境中表达这一概念。我相信，我们现在必须听取患者和家庭痛苦的一些令人不快和准确的表述。克里斯蒂娜·坎皮（Christina Campi）（1）在《纽约时报》网站上于1998年1月5日发表了一封信，标题为“当死亡难时”。作为出生”。第一句话：“我的姐姐，母亲和丈夫去年彼此相隔九个月之内死亡。死亡原因：吗啡。”我们将讨论双重效应的原理，但她的误解令人震惊且值得注意：“这种由镇静作用引起的死亡过程在医学界被称为“双重效应”，是每天由医生协助的死亡，但在很大程度上被忽略。当前关于美国死亡和死亡的辩论”。她不仅不理解双重效力的原则，而且在伦理上正确地减轻痛苦与医师协助的死亡等同于一种完全不同的道德寓意，这真是一场悲剧。此外，她抱怨说自己没有得到指导，没有能力做出决定，但是她“被留下来驱动死亡的引擎”。在其他痛苦的报价中，我发现这是最可悲的：“我杀了他吗？我不知道。我是否将吗啡泵推得更快以减轻他或我的痛苦？我不知道。”我们让她失败了。我推测她的亲戚在临终时至少会获得足够的镇痛作用，但我们的任务是确保家人也能帮助他们理解生命终结的决策。无论出于何种原因，很明显，在这种情况下，她从未理解过意图决定了行动的道德性，她的亲戚没有死，而是死于疾病的无情发展。实际上，在看护者中希望以双重作用的原则来合理使用镇痛药，而且看来其作用值得称赞。很难知道他们是否沟通不好，或者她只是无法理解他们说的话。莫琳·德·霍瑙（Maureen D’Honau）在旧金山考试员中发表了“在机器上：他的医生避免了垂死病人的痛苦”。随后在1998年6月在《康涅狄格医学》（2）中进行了重印。她首先重新叙述了这一集：通过指定涉及的单词数，我们是否应该推断这是讨论的范围？ “医生问了一个问题，然后等待。话：我数了数。从医生那里有六个：“你想让他在机器上吗？”我丈夫查理（Charlie）来了三个：“我无法呼吸。”在我这里会出现一个：“是”或“否”。 “不”意味着看着查理窒息。我该如何选择呢？是什么命运把这句话判给了我？ “是的

Patients are talking - and we'd BETTER listen!

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