“I’ve lived with this for 10 years. I’m hoping for another 2, to make it to my 85th birthday so I can have a big party.”

 My patient’s voice was weak, but his goals were clear. He had been transferred to our inpatient palliative care unit overnight for end-of-life care. Having just come on as the attending physician, I was meeting him for the first time.

“Do you ever think about what you might do if time were shorter than you hope?” I asked him.

He looked around the room at the family gathered around his bedside. “We’d all just tell a white lie and pretend I made it. We’d have the party early.”

I left the room relieved and optimistic. We would plan to adjust his medications to control his symptoms and help his family plan one last birthday celebration, complete with cake and perhaps wine (we’d turn a blind eye to hospital policy). My patient would have a “good death,” one of the outcomes that inspired me to choose a career in palliative care.

Over the next week, my patient was surrounded by his large and loving family, who would do anything to support him. They threw him a party, and he had a few bites of cake. Everyone said what they wanted and needed to say to him. Plans for the funeral were ready.

Unfortunately, my patient’s story did not play out according to my script. He had previously undergone an amputation that left him with unrelenting “phantom” pain. Two years earlier, he had had a pump surgically implanted in his back to deliver high doses of painrelieving medications directly into his spinal canal. As a result, his tolerance for opioids was far higher than it would be for our average patient. And the cancer that had spread to his lung was rapidly overgrowing his airway. Although he seemed comfortable in the morning, every night his pain and shortness of breath worsened. He became delirious and agitated, moaning and calling for help. His elderly wife, who had her own health issues, refused to leave his side and barely slept.

We did everything we could to control his symptoms and ease everyone’s distress. We increased the medications in his spinal pump and added high doses of powerful sedatives. For days, none of these were enough. His body had held on for a decade, and it would not go quietly.

We finally made headway and gave my patient and his family a modicum of relief. He died the next day, sweaty and exhausted. His could have been a good death. It wasn’t. Rather than being filled with the mixture of quiet laughter and tears of a loving family saying goodbye to their patriarch, the air in the room had been thick with anxiety and suffering. I had felt powerless to help.

We are at an inflection point for palliative care in American medicine and the public consciousness. In recent years, we have seen best-selling books, Oscar-nominated documentaries, and countless articles in the mainstream media about how to live with serious illness and how to die well. Thought leaders are giving TED-style talks and holding conferences about “disrupting” death. As a palliative care physician in the early years of my career, though, I worry about where we go from here.

Well-intentioned advocates implore the public and our colleagues to rethink how they approach death. The quid pro quo is clear: if people can talk about illness and death earlier, we can help them live and die well. But while most clinicians admit that there is much about dying that’s beyond our control, our rhetoric regarding end-of-life care too often omits this warning. We have grounded our society’s notions of the good death in images of elderly patients peacefully tying up the loose ends of lives well lived. Working at a cancer center, though, I rarely see such patients. The gaping hole that opens in a family facing an unexpected or premature death, such as that of a young parent or a child, cannot be patched by the highest-quality end-of-life care. At best, it can be made less leaky.

And as throughout medicine, the state of our science is imperfect. For some of my patients, death can be difficult to tame. Symptoms may either defy our most powerful medications or force us to give patients doses that prevent them from spending their final hours and days interacting with their loved ones. Just as obstetricians warn expectant parents that birth plans may need to be discarded if labor takes an unexpected turn — and that such twists are not uncommon — we need to add a similar caveat at the end of life.

After my patient died, hisfamily thanked me for everything we had done. But as I left his room for the final time, I couldn’t help but feel disheartened by what he had endured in his last days. His dying process had easily conquered my most effective tools.

Palliative care physicians encourage our colleagues in other specialties, such as oncology and cardiology, to communicate with not only honesty but also humility. We must hold ourselves to the same standard. Whether delivered by generalists or specialists, palliative care improves quality of life and eases suffering for patients with serious illness and their families.1 Our interventions reduce pain, anxiety, and depression and improve people’s ability to cope with a life-altering diagnosis.2,3 In the vast majority of cases, we are successful in mitigating distress. But not always and not completely.

My patient’s case was an outlier, but it was not unique. As clinicians in any field of medicine, and particularly in palliative care, we must keep these cases in mind as we navigate our public discourse about the end of life. We should promise to do everything in our power to ease suffering, bringing all our knowledge, compassion, and medical tools to bear. We also need to acknowledge our limitations. We can often make the dying process better and more physically, psychologically, and spiritually comfortable for our patients and their families. But when we set societal expectations for a good death, we claim a command over nature that we don’t always have.

Identifying details have been changed to protect the family’s privacy. Disclosure forms provided by the author are available at NEJM.org.

From the Department of Psychosocial Oncology and Palliative Care, Dana–Farber Cancer Institute, the Department of Medicine, Brigham and Women’s Hospital, and Harvard Medical School — all in Boston.

This article was published on October 9, 2021, at NEJM.org.

1. Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J Med 2015;373: 747-55.

2. Bernacki R, Paladino J, Neville BA, et al. Effect of the serious illness care program in outpatient oncology: a cluster randomized clinical trial. JAMA Intern Med 2019;179: 751-9.

3. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med 2010;363:733-42.

DOI: 10.1056/NEJMp2107941

Copyright © 2021 Massachusetts Medical Society

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      “我已经这样生活了10年了。我希望再过2岁，到我85岁生日，这样我就可以举办一个盛大的派对。”

      我的病人的声音很弱，但他的目标很明确。他被转到我们的住院姑息治疗病房过夜接受临终护理。我刚成为主治医生，这是我第一次见到他。

     “你有没有想过，如果时间比你希望的要短，你会怎么做？”我问了他。

      他环顾四周的房间，看着聚集在他床边的家人。“我们都会说个白谎，假装我做到了。我们会早点开派对的。”

       我松了一口气，乐观地离开了房间。我们计划调整他的药物来控制他的症状，并帮助他的家人计划最后一次生日庆祝活动，包括蛋糕和葡萄酒（我们会对医院的政策视而不见）。我的病人会有一个“美好的死亡”，这是激励我选择姑息治疗职业的结果之一。

       在接下来的一周里，我的病人被他的大家庭包围着，他们会做任何事情来支持他。他们给他开了个派对，他吃了几口蛋糕。每个人都说了他们想说的和需要对他说的话。葬礼的计划已经准备好了。

       不幸的是，我的病人的故事并没有按照我的剧本上演。他之前接受过截肢，留下了无情的“幽灵”疼痛。两年前，他在背部植入了一个泵，将高剂量的止痛药物直接注入他的椎管。因此，他对阿片类药物的耐受性远远高于我们的平均患者。扩散到他肺部的癌症正在他的气道迅速生长。虽然他在早上看起来很舒服，但每天晚上他的疼痛和呼吸急促都在恶化。他变得精神志错乱、激动，呻吟和呼救。他年迈的妻子有自己的健康问题，她拒绝离开他身边，几乎不睡觉。

       我们尽其所能来控制他的症状，减轻每个人的痛苦。我们增加了他的脊髓泵中的药物，并增加了高剂量的强力镇静剂。好几天来，这些都还不够。他的身体已经支撑了十年，它不会平静地离去。

       我们终于取得了进展，给我的病人和他的家人一点点安慰。第二天，他汗流浃背，筋疲力尽。他本来可以很安详的离去。但它不是。房间里的空气中弥漫着焦虑和痛苦，而不是一个充满爱的家庭向他们的家长告别时安静的欢笑和泪水。我感到无能为力。

       在美国医学和公众意识中，我们正处于缓和医疗的拐点。近年来，我们看到了畅销书，奥斯卡提名纪录片，以及主流媒体上无数关于如何带着严重的疾病生存和如何健康地死去的文章。思想领袖们正在进行ted风格的演讲，并举行关于“扰乱”死亡的会议。在我职业生涯的最初几年里，我是一名姑息治疗医师，但是，我担心我们从这里走向哪里。

       善意的拥护者恳求公众和我们的同事重新思考他们对待死亡的方式。交换条件很明确:如果人们能更早地谈论疾病和死亡，我们就能帮助他们活得更好，死得更好。但是，尽管大多数临床医生承认，关于死亡，有很多事情是我们无法控制的，但我们关于临终关怀的说辞往往忽略了这一警告。我们把社会上关于善终的观念建立在老年病人平静地收拾残破生命残迹的形象上。然而，在癌症中心工作的我很少见到这样的病人。当一个家庭面临意外或过早死亡时，比如年轻父母或孩子的死亡，这个巨大的缺口是无法通过最高质量的临终关怀来弥补的。在最好的情况下，它也只是可以减少渗漏。

       就像整个医学一样，我们的科学还不完善。对我的一些病人来说，死亡很难控制。这些症状要么是对我们最有效的药物无效，要么是迫使我们给患者剂量，阻止他们在生命的最后时刻与所爱的人互动。正如产科医生警告准父母，如果分娩出现意想不到的转折(这种转折并不罕见)，可能需要放弃生育计划一样，我们需要在生命的最后加上一个类似的警告。

       在我的病人死后，他的家人感谢我所做的一切。但当我最后一次离开他的房间时，我忍不住对他最后几天所忍受的一切感到沮丧。他的临终过程很容易就征服了我最有效的工具。

       姑息治疗医生鼓励我们在其他专业的同事，如肿瘤学和心脏病学，以不仅诚实，而且谦逊进行沟通。我们必须坚持同样的标准。无论是由全科医生还是专家提供，姑息治疗都能提高生活质量，并减轻严重疾病患者及其家属的痛苦。我们的干预措施减少了疼痛、焦虑和抑郁，并提高了人们应对改变生活的诊断的能力。在绝大多数情况下，我们都成功地减轻了痛苦。但并不总是这样，也不完全如此。

       我的病人是一个特例，但不是唯一的。作为任何医学领域的临床医生，尤其是姑息治疗领域的临床医生，我们在引导关于生命终结的公共讨论时，都必须牢记这些病例。我们应该承诺尽一切努力减轻痛苦，运用我们所有的知识、同情和医疗工具。我们也需要承认我们的局限性。我们通常可以让病人和他们的家人在死亡过程中感觉更好，在身体上、心理上和精神上都更舒服。但是，当我们为善终设定了社会期望时，我们就对自然拥有了一种我们并不总是拥有的控制力。