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2019年4月9日，《美国医学会杂志》正刊发表哈佛大学医学院讲师、达纳法伯癌症研究中心肿瘤心理与临终关怀科资深主治医师凯特·拉里博士的患者心声：我鼓励其他人与我交谈。这位双侧乳腺癌患者讲述了她与丈夫的生命终点交流，回顾了她的生活重心如何被改变，以及她如何根据自己的体会与自己的癌症患者进行交流。 即使经验丰富的医生，当自己成为患者，当谈话地点从办公室变成自家厨房，也会感到为难。 作为主要从事女性肿瘤临终关怀的医生，我帮助患者明确什么对于她们及其爱人而言至关重要，并且据此帮助她们了解将面临的无数医疗决策，包括为某些人的生命终点做好准备和计划。很多时候，医生殚精竭虑地致力于开展这些重要而又费解的谈话。 对我而言，这些谈话始于我和我丈夫还是医学生的时候，第一次目睹了各种危急重症和救治措施。当时的我还年轻、没孩子、健康，如果成功机会很小，我就告诉他放弃气管切开、插喂养管或其他创伤性手术。多年以后，当一位亲戚中风并且她的家人同意插喂食管时，我与父母谈过，我问：如果这发生在你们身上，你们想要的吗？ 后来，2017年12月，我被诊断出双侧乳腺癌。当时我42岁，我的孩子分别是8岁和4岁。我接受了4次手术，接着放疗，一直每天服用他莫昔芬。 突然，我与许多患者一样需要处理同样的疾病。我面临同样的震惊、恐惧和困惑。我自己与丈夫的谈话反映了我患者的痛苦经历。 随着我们生活环境的改变，我们的谈话已经发生了变化。当我们的孩子出生时，我告诉我丈夫，我能忍受更多的治疗，因为与我们儿女相处的机会越来越少。 在我确诊之后，我明白了在这种癌症情况下进行这些对话（以及如何改变选择）有多困难。现在，我要求我丈夫做他认为必要的事情，为我争取更多与他和我们的孩子在一起的时间。不过，如果我病得太重，需要去医院，他们就很难和我在一起，那么我希望他让我走。就像我的许多患者一样，我不想成为家庭的负担。像她们许多人一样，我不知道我丈夫是否真的能够满足我的愿望。 当我打算重返工作岗位时，我不知道我能否继续从事女性肿瘤临床工作，或者我的感受和惶恐会不会影响我的工作。如果我可以继续工作，我的癌症诊断又将如何影响我的工作？ 病假期间，我一直在回顾患者的病历，并且不可避免地将她们与我进行比较：什么阶段发现乳腺癌？接受了什么治疗？现在过得好吗？我担心当我再次开始看病时无法自拔。我回来时最初看到的患者之一就是伴有病变转移的女性，我很害怕。我不知道我是否会过于情绪激动而不得不离开诊室。我很快得到了答案，我能够专注于她和她的需求。病历只是纸上文字，而非坐在我面前的女性。 其实，一种新的共鸣，而非同情，现在贯穿渗透进入我的工作，并且促进了我与患者之间的关系。我也注意到我的临床工作和教学有明显变化。在我经历逃避现实之后，我开始适应这种自我保护作用。我在教学时较多谈及逃避现实。当我感到患者在逃避现实掩饰自己时，我似乎更愿意期待进行一次困难的交谈。 我仍在努力研究如何、何时以及是否与患者分享我的癌症经历。我不想把焦点转移到我身上，但是我也知道这些信息可能对某些患者有用。对于另一位女性，她发现我也是癌症患者后，促进了我们的沟通。当时我们都在等待放疗，我遇到了她。下次我在诊所见到她时，我回答了有关我的诊断和治疗问题。当讨论她的临终关怀愿望时，我有意识地推迟了谈话。再次如约就诊时，我说：“我还没有跟你谈论这个问题，因为这对我很难，但是那样对你不公平。我非常了解你对于即将发生的事情需要知道什么”。说到这里，我们都情不自禁地潸然泪下。每当我想到将要面对癌症复发，我就回忆起她以及其他患者的的通情达理和坚强。 自从我被诊断出癌症以来，我与丈夫的生死探讨就一直难以脱离纯学术讨论，我认为如果从健康话题开始讨论，有助于我们进行更艰难的谈话。我认为，对于患者与临床医生而言，像我们一样开诚布公地交谈有多么重要。在我诊断出乳腺癌一年后和末次放疗8个月后，我对癌症的恐惧逐渐缓解，但愿几十年后，我丈夫和我将有机会一起讨论如何对待老年病的问题。 JAMA. 2019 Apr 9;321(14):1353. A Piece of My Mind: Having the Conversation I Encourage Others to Have. Kate Lally. Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts. In this narrative medicine essay, a palliative care physician with breast cancer talks about the end-of-life conversations she and her husband have, recalling how her priorities have changed through life stages and how she uses her experiences to inform her interactions with her own cancer patients. Even experienced physicians can be jolted when they become a patient, when difficult conversations move from the office to their kitchen table. As a palliative care physician focusing on women's oncology, I help patients articulate what is important to them and their loved ones. Guided by these priorities, I help them navigate the myriad medical decisions they will face, including, for some, preparation and planning for the end of life. Too often, physicians struggle to engage in these important, but understandably difficult, conversations. For me, these conversations started when my husband and I were medical students, witnessing medical crises and intensive interventions for the first time. Young, childless, and healthy, I told him to forgo the tracheotomy or feeding tube or other invasive procedure for me if there were only a small chance of success. Years later, when a relative suffered a stroke and her family okayed a feeding tube, I talked with my parents. If this happened to you, I asked, is that what you would want? Then, in December 2017, I was diagnosed with cancer in both breasts. I was 42. My children were 8 and 4. I underwent 4 surgeries, followed by radiation therapy. I take tamoxifen daily. Suddenly, I was dealing with the same disease as many of my patients. I faced the same shock, terror, and confusion. My own conversations with my husband painfully mirrored my patients' experiences. Our conversations had already changed as the circumstances of our lives changed. When our children were born, I told my husband I would endure more treatment for a smaller chance of additional time with our son and daughter. After my diagnosis, I learned just how hard it is to have these conversations (and how preferences can change) in the context of cancer. I now told my husband to do whatever he deemed necessary to buy me more time with him and our children. However, if I become so sick that I need to be in a facility and it becomes difficult for them to be with me, then I want him to let me go. Like many of my patients, I don't want to be a burden to my family. Like many of them, I don't know if my husband could actually follow my wishes. As I contemplated returning to work, I wondered if I would be able to continue practicing in women's oncology or if I would carry my experience and fears so close to the surface that I could not. If I could continue, how would my cancer diagnosis affect how I do my job? While on medical leave, I kept up by reviewing patients' charts and, inevitably, compared their cases to mine. At what stage was her breast cancer discovered? What treatments did she receive? How is she doing? I feared this obsession would unravel me when I started seeing patients again. One of the first patients I saw on my return was a woman with metastatic disease. I was terrified. I didn't know whether I would get overly emotional and have to leave the room. I soon got my answer. I was able to focus on her and her needs. The charts were words on paper, not the woman sitting across from me. Indeed, a newfound empathy, rather than sympathy, now informs my work and strengthens my connection with patients. I have also noticed one concrete change in my practice and teaching. Having experienced my share of denial, I am attuned to its protective power. I talk about denial more while teaching. I'm more likely to wait to move ahead with a difficult conversation when I sense a patient cloaking herself in denial. I still struggle with how, when, and whether to share my cancer diagnosis with patients. I don't want to shift the focus to me, but I also know the information could be useful to some patients. For one, another woman, finding out about my cancer helped us communicate. I ran into her while we were both waiting for radiation therapy. Next time I saw her in clinic, I answered questions about my diagnosis and treatment. When the time had come to discuss her end-of-life care wishes, I realized I had been putting off the conversation. At our next appointment, I said, "I haven't talked to you about this because it's hard for me, but that isn't fair to you. I know you well enough to know you would want a voice in what happens." We were both tearful. I recall her grace and strength, along with the grace and strength of other patients when I think about what it would mean to face a recurrence of my cancer. As difficult as it has been for my husband and me to move our life-and-death conversations away from the purely theoretical since my cancer diagnosis, I know that our discussions from healthier days help us with these harder talks. I know how important it is, for patients and clinicians alike, to engage in conversations that evolve as our lives evolve. A year after my diagnosis and 8 months after my final radiation treatment, I temper my fear of cancer with the hope that, decades from now, my husband and I will be discussing how we want to handle the infirmities of old age. PMID: 30964532 DOI: 10.1001/jama.2019.3166 |
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