如果你的亲人患了痴呆症…（双语）

译者：我父母都去世了。但是，他们依然常常出现在我的脑海中，每天、每个小时。我一直想写一点关于父母的事；但是，感觉很难下笔，尤其是关于他们生命的最后的几年。

下面这篇文章涉及的，是我思考过的问题之一。

我父亲曾经说，如果他患有痴呆症，他就不想活了。 后来，他真的得了。

Jauhar 医生是一位心脏病专家，经常撰写有关医疗保健和公共卫生的文章。 他是《我父亲的大脑：阿尔茨海默病阴影下的生活》一书的作者。

两年前，当我的父亲因痴呆症濒临死亡时，我和我的兄弟姐妹面临着一个可怕的困境：我们应该尊重谁对他的（最后）治疗的愿望？ 是我父亲还是一位健康、高效的遗传学家时立下的那些愿望？ 或者是我父亲变得更加简单、软弱的老人后表现出来的那些愿望？

这种困境让我重新思考我对临终关怀预先指示”（advance directives for end-of-life care）的看法。

当时，我父亲的健康状况已经持续恶化了几个月。 他的食欲一直在持续下降，体重也在下降，而且他经常不得不穿尿不湿，因为他总是不能及时去卫生间。 现在，在一周内，他的情况迅速恶化，不再进食和说话。

我哥哥和我都是医生；认为父亲可能脱水了，我们开始在家通过静脉注射给他输液。 但是，这并没有帮助。 我们面临着是否停止静脉注射、救生医疗的可怕选择。

几年前，也就是 2004 年，我父亲写了一封信给我哥哥，说如果他或我母亲得了“重病”，他们都不会希望采取非常措施来维持生命。 “只有过上有意义的生活，我们才想活下去，”他写道。 为了与我父亲“心智健全”时制定的指示保持一致，我哥哥说我们应该停止静脉输液，让我父亲平静地死去。

我心存疑虑。 确实，对于 2004 年的父亲来说，痴呆症状态下的生活似乎没有任何意义。他作为科学家，不会想要没有智力存在的生活。

尽管父亲身体虚弱，但他似乎并没有不高兴。 在他生病的过程中，他从未表达过对死亡的真诚愿望。对我父亲来说，在2004 年认为有意义的事情（当时他依然健康）与过去几个月对他来说有意义的事情非常不同。在最后几个月，看电视、与照顾者和孩子们共度时光，甚至只是吃一勺冰淇淋，显然都给了他真正的乐趣。

可以将这些快乐视为简单的、孩子气的、不值得我父亲活下去。 可眼前的这个人不也是我的父亲吗？ 我想，为什么不继续静脉输液，或者尝试给他一些抗生素呢？

这是许多家庭都以某种形式面临的难题。 在我工作的医院系统，去年进行的约 600 次伦理咨询中，几乎有一半是针对预先指示的各种分歧。 “这种事每天都会发生，”我们生物伦理学服务部门的负责人蕾妮·麦克劳德-索尔詹 (Renee McLeod-Sordjan) 告诉我。

我和我的兄弟姐妹面临的这类问题只会随着人口老龄化而增加。 目前，估计患有阿尔茨海默氏症或相关形式痴呆症的美国人数量超过 600 万；预计在 25 年内，这个人数将增加一倍。 许多年长的美国人都会有像我父亲一样做预先医疗指示。 在许多情况下，这些指令似乎与他们当前的（临终前的）愿望相矛盾。

法院普遍裁定，当一个人是独立和理性的，并且有时间和冷静地思考他想要什么时，他做出的预先医疗指示应优先作为其意愿的表达。 然而，这难道不是一种可能会降低患者日后道德地位的偏见吗？ 一个人当前的愿望，即使是在认知障碍的状态下形成的，也必须被考虑。 （However, isn’t that also a kind of bias that risks lowering the moral standing of the patient in later years? A person’s current wishes, even if formed in a state of cognitive impairment, must count for something. ）作为一个儿子，你如何拒绝向你的精神错乱的父亲提供救生治疗，因为他通过手势和言语似乎表达了求生的愿望？

我哥哥经常说我父亲过着“正、负”的生活、他的意思是这种日子加起来基本上为零。 在我感觉最黑暗的时刻，我也相信这一点。 但也许我们比父亲的病情更痛苦。他的世界缩小了，但他的欲望、他的观点、他对有价值的存在的期望也同样缩小了。 这个最渴望得到认可和尊重的男人似乎不再关心那些变化无常的奖励。

对于我的哥哥来说，我们的父亲不再是以前的那个人了。 对我来说，他还是同一个人，只是变成了另外一个人。

最后，经过多次辩论，我的哥哥与临终关怀护士一起做出了最后决定，尊重我父亲的预先指示，这就是临终治疗的目标。 我们停止了静脉输液，也没有使用抗生素。几天后，我们的父亲在家中去世。

我仍然在思考护理人员在这种情况下应该做什么的问题。 如果预先指示明确规定不应该理会“未来的自己”的相反愿望，也许像我们这样的家庭纠纷可以避免，尽管这仍然无法解决道德困境。

尽管法院可能不同意，但我不再认为在每种情况下都应该严格遵守预先指示。 它们往往措辞含糊，可能很难预测未来的态度和感受。 对我来说，似乎必须认真对待同时期的生存欲望，即使是患有痴呆症的人，无论那个人之前可能写过什么。 我们认识到，思想在发展，人们在人类生活的各个领域都在变化。

家人和护理人员在决定什么最符合无行为能力患者的最大利益时，应权衡过去和现在的愿望。 这最好由一位符合患者意愿和其发展方式的代理人来完成——在大多数情况下，代理人是患者提前选择的亲人。 理想情况下，社会规范有一天会反映出这一点。

正如我在父亲患病的过程中了解到的那样，对生活的满足感可能与认知功能障碍并存——以及改变一个人对生命终结时想要的护理的想法的特权。

My Father Didn’t Want to Live if He Had Dementia. But Then He Had It.

Oct. 23, 2023

https://www.nytimes.com/2023/10/23/opinion/alzheimers-dementia-advance-directives.html?smid=nytcore-ios-share&referringSource=articleShare

By Sandeep Jauhar

Dr. Jauhar is a cardiologist who writes frequently about medical care and public health. He is the author of “My Father’s Brain: Life in the Shadow of Alzheimer’s.”

Some years back, in 2004, my father had written a letter to my brother saying that if he or my mother were to get “very sick,” neither would want extraordinary measures taken to keep them alive. “We want to live only if we have a meaningful life,” he wrote. In keeping with my father’s directive, formulated when he was “of sound mind,” my brother said we should stop the IV fluids and let my father die peacefully.

I had misgivings. It was true that life in a state of dementia would not have seemed meaningful to my father in 2004. The scientist in him would not have wanted to live without an intellectual existence.

But despite his weakened state, my father didn’t seem unhappy. Over the course of his illness, he’d never expressed a sincere wish to die. What was meaningful to my father in 2004 was very different from what had become meaningful to him in the past few months, when watching TV, spending time with his caregiver and children, and even just eating a spoonful of ice cream had clearly given him genuine pleasure.

It was possible to view those pleasures as simple, childlike, somehow beneath my father. But wasn’t this man before me also my father? Why not continue the IV fluids, I thought, and maybe try giving him some antibiotics?

This is a conundrum that in one form or another many families are facing. At the hospital system where I work, almost half of the 600 or so ethics consultations performed last year dealt with various disagreements over advance directives. “It is a daily occurrence,” Renee McLeod-Sordjan, the head of our bioethics service, told me.

The sort of problem my siblings and I faced will only increase as the population ages. The number of Americans estimated to have Alzheimer’s or related forms of dementia is more than six million today and is projected to double in about 25 years. Many older Americans will have advance directives like my father’s. And in many cases those directives will seem to contradict their current desires.

Courts have generally ruled that an advance directive should be prioritized as an expression of the will of a person when he is presumably independent and rational and has the time and the presence of mind to reflect on what he wants. However, isn’t that also a kind of bias that risks lowering the moral standing of the patient in later years? A person’s current wishes, even if formed in a state of cognitive impairment, must count for something. As a son, how do you withhold lifesaving treatment from your demented father who, through gestures and utterances, seemingly expresses a desire to live?

My brother often said that my father was living a life of “plus-minus,” by which he meant that it basically added up to zero. In my darkest moments, I believed this too. But perhaps we were suffering over our father’s condition more than he was. His world had shrunk, but so too had his desires, his perspective, his expectations of what constituted a worthwhile existence. The man who’d craved recognition and respect more than anything else no longer seemed to care about those fickle rewards.

To my brother, our father was no longer the person he once was. To me, he was still the same person, just a changed one.

In the end, after much debate, my brother, in conjunction with a hospice nurse, made the final call to honor my father’s advance directive, which is the goal in palliative care. We stopped the IV fluids and did not start antibiotics. Our father died at home a few days later.

I continue to struggle with the question of what caregivers should do in this situation. Perhaps a family dispute such as ours might be avoided if an advance directive were to explicitly state that the contrary wishes of a “future self” should not be heeded, though this still would not resolve the ethical dilemma.

Though courts may disagree, I no longer believe that advance directives should strictly be followed in every situation. They are often vaguely worded and may poorly predict future attitudes and feelings. To me, it seems that a contemporaneous desire to live, even in a person with dementia, must be taken seriously, despite what that person might have previously written. We recognize that minds evolve and people change in every sphere of human life.

Families and caregivers should weigh both past and present wishes in deciding what is in an incapacitated patient’s best interests. This would be best accomplished by a surrogate in tune with the patient’s wishes and how he has evolved — in most cases, a loved one chosen by the patient in advance. Ideally social norms will one day reflect this.

As I learned on the journey through my father’s illness, contentment with life can be compatible with cognitive dysfunction — along with the prerogative to change one’s mind about the care one wants at life’s end.

Sandeep Jauhar (@sjauhar) is a doctor at Northwell Health in New York and the author, most recently, of “My Father’s Brain: Life in the Shadow of Alzheimer’s.”

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