BOSTON — David Baldwin wasn't sure how he had come across the other day in group therapy at the hospital, near the co-op apartment where he lives with his rescue cat, Zoey. He struggles with bipolar disorder, severe anxiety and depression. Like so many patients, he secretly wondered what his therapist thought of him.
波士顿——大卫·鲍德温(David Baldwin)和他救助的猫咪佐伊(Zoey)共同居住的合作公寓附近有家医院,不久前的一天,他在那里参加了一次团体治疗,但并不确定自己当时给人留下了怎样的印象。鲍德温一直在与会让人陷入极度焦虑和沮丧之中的躁郁症做斗争。和很多患者一样,他会暗自揣测治疗师对他的看法。
But unlike those patients, Mr. Baldwin, 64, was able to find out, swiftly and privately. Pulling his black leather swivel chair to his desk, he logged onto a hospital website and eagerly perused his therapist's session notes.
但与其他患者不同, 64岁的鲍德温能迅速地、悄悄地找到答案。他把黑色皮转椅拖到自己的书桌前,随后登录到医院的网站,急切地看起了他的治疗师对那次会谈的记录。
The clinical social worker, Stephen O'Neill, wrote that Mr. Baldwin's self-consciousness about his disorder kept him isolated. Because he longed to connect with others, this was particularly self-defeating, Mr. O'Neill observed. But during the session, he had also discussed how he had helped out neighbors in his co-op.
临床社工斯蒂芬·奥尼尔(Stephen O'Neill)写道,鲍德温对他的疾病感到尴尬,这让他处于孤立的状态。奥尼尔注意到,该状态给他带来了强烈的挫败感,因为他渴望与人交往。但在治疗期间,他也曾谈论过自己是如何给合作公寓里的邻居们帮忙的。
"This seems greatly appreciated, and he noted his clear enjoyment in helping others," Mr. O'Neill wrote. "This greatly assists his self-esteem."
“人们似乎非常感谢他,他则明显感到帮助别人时他自己也乐在其中,”奥尼尔写道,“这可以非常有效地帮他建立自尊心。”
A smile animated Mr. Baldwin's broad, amiable features. "I have a tough time recognizing that I've made progress," he said. "So it's nice to read this as a reminder."
鲍德温宽和的脸庞上掠过了一丝微笑。“我很难确认自己已经有所进步,”他说,“阅读这些内容让我得到了提示,真不错。”
Mental health patients do not have the ready access to office visit notes that, increasingly, other patients enjoy. But Mr. Baldwin is among about 700 patients at Beth Israel Deaconess Medical Center who are participating in a novel experiment.
心理疾病患者是无法便捷地查询门诊病历的,尽管罹患其他疾病的患者已经逐渐可以这样做了。但包括鲍德温在内,以色列堂-女执事医疗中心(Beth Israel Deaconess Medical Center)的大约700名患者正在参与一场新奇的实验。
Within days of a session, they can read their therapists' notes on their computers or smartphones. The hope is that this transparency will improve therapeutic trust and communication.
参加完会谈数日后,他们就可以在自己的电脑或者智能手机上阅读治疗师做的记录了。提高信息透明度的目的,是希望加深医患之间的信任和沟通。
"We're creating a revolution," said Dr. Tom Delbanco, a professor of medicine at Harvard and a proponent of giving patients access to notes by therapists as well as by physicians. "Some people are aghast."
“我们正掀起一场革命,”主张允许患者查看治疗师及医生所做记录的哈佛大学(Harvard)医学教授汤姆·德尔班科(Tom Delbanco)表示,“有些人被惊呆了。”
The pilot project has raised questions in the mental health community. Which patients will benefit and which might be harmed? How will the notes alter a therapeutic relationship built on face-to-face exchanges? What will be the impact on confidentiality and privacy?
这一试点项目已经在心理健康群体内引发了争议。哪些患者会从中受益,哪些又会受到伤害?病历将如何改变基于当面交流的医患关系?对保密性和隐私权又会有什么样的影响?
And the project presents difficult choices for those who argue for parity between medical and mental health patients. Should patients with schizophrenia, for example, who may stop taking their medication after reading that they are doing well, have the same access to treatment notes as those with irritable bowel syndrome?
该项目也让主张同等对待内科和心理疾病患者的人面临艰难的抉择。举例来说,精神分裂症患者如果读到关于自己的病情正在好转的内容,或许会停止用药,他们也该和肠易激综合征患者享有同等的查阅诊疗记录的机会吗?
But the lingering underlying question is, do patients really want to know what their therapists think? Dr. Kenneth Duckworth, who is the medical director of the National Alliance on Mental Illness, an advocacy group, said: "I've offered to share my notes with patients and they'll say, 'No, I'm good.' But it's a good concept that should be researched."
在人们脑海中徘徊的根本问题则是,患者真的想知道他们的治疗师是怎么想的吗?倡导组织“全国心理疾病联盟”(National Alliance on Mental Illness)的医务主任肯尼思·达克沃斯(Kenneth Duckworth)博士表示:“我已经表示愿意和病人分享我做的记录,而他们会说'不用了'。但它是一个值得研究的好想法。”
The practice is so new that it is too early for a comprehensive evaluation. The Department of Veterans Affairs, which began making medical and mental health records available online last year, is only just beginning to study the effect on mental health patients.
这种做法非常新颖,对其加以综合性评估还为时尚早。去年着手把内科和心理疾病病历放在网上以便查阅的退伍军人事务部(Department of Veterans Affairs),也不过刚刚开始研究该做法对心理疾病患者的影响。
Older studies from psychiatric wards where patients read charts with doctors found that the patients were confused or offended by the content. But as doctors helped interpret their notes, patients began participating more in their care and trusting their team.
此前有人研究过心理病房的患者与医生共同阅读病历的情形,其结果表明:一些内容会让患者感到困惑和受了冒犯,但在医生帮忙加以解释后,患者开始更多地参与治疗,也更信任他们的治疗团队。
Although Beth Israel therapists report that some patients have no interest in reading their notes, responses from a few have been positive and powerful.
尽管以色列堂-女执事医疗中心的治疗师表示,某些患者没兴趣阅读病历,但还是有患者做出了积极的、强烈的响应。
Stacey Whiteman, 52, a former executive secretary in Needham with multiple sclerosis, faces growing cognitive as well as physical difficulties. The disease has shaken her self-image and relationships; her psychological health affects her willingness to manage the disease. She finds that her medical and mental health notes complement each other.
尼德汉姆(Needham)公司前行政秘书斯泰西·怀特曼(Stacey Whiteman)患有多发性动脉硬化症,面临着身体和认知上的双重问题。这种疾病损害了她的自我形象和人际关系;糟糕的心理健康状况影响了她控制病情的意愿。她发现,内科和心理疾病病历是互为补充的。
"Yes, the therapy notes can be hard to read, and sometimes I wonder, 'Really, I said all of that?' " she said. "But there's no question that reading this stuff just charges you back up to moving forward."
“不错,诊疗记录可能很难读,有时候我会怀疑,'我真的说过这些话吗?'”她说,“但毫无疑问,阅读这些东西可以督促你继续接受治疗。”
While such a program may be feasible in larger systems like Beth Israel, a Harvard hospital, some solo practitioners fear it may require too much time and technological sophistication.
以色列堂-女执事医疗中心是哈佛大学的一所附属医院。在此类规模较大的机构里,这样一个项目或许是可行的。但有些个体从业者担心它太耗费时间,在技术上太过复杂。
But Peggy Kriss, a psychologist in Newton, is an early adopter. For over a year she has maintained a website with private pages for patients on which she posts session notes, as well as articles, videos and meditations.
不过,牛顿市的心理学家佩吉·克里斯(Peggy Kriss)是一位先行者。一年多来,她一直在维护一个由服务于患者的私人网页构成的网站。除了会谈记录,她还会在上边发布文章、视频以及自己的一些思考。
Toward the end of each session, she and the patient begin the note together defining the key points that have been raised.
每次治疗结束前,她会和病人一起着手整理会谈记录的内容,厘清此前提到的重点问题。
Dr. Kriss said that for most of her patients, online notes have become the new normal. One described them to her as a security blanket between appointments.
克里斯医生称,对她的大多数患者而言,线上记录已经成了一种新的常态。一位病人将其形容为两次会谈间隙的慰藉。
Some write replies. "An O.C.D. patient told me I was spelling things wrong," Dr. Kriss said. "So I said, 'I'm just modeling anti-perfectionism for you.' "
有些患者会回帖。“一位强迫症患者告诉我,我犯了些拼写错误,”克里斯医生说,“于是我回应道,'我只是在为你示范什么叫反完美主义。'”
The Beth Israel project grew out of OpenNotes, a program by Dr. Delbanco and his colleagues that made physicians' notes accessible to 22,000 patients at three institutions. A 2011 study showed that patients responded positively and became more involved in their care.
以色列堂-女执事医疗中心的项目脱胎于由德尔班科博士及其同事发起的“公开病历”(OpenNotes)计划。该计划让三家医疗机构的2.2万名患者得以查阅医生做的记录。2011年的一份调查报告显示,患者们做出了积极的响应,开始对治疗更为投入。
More systems are adopting the model. At least three million patients now have swift access to office visit notes, including observations and recommendations.
更多的医疗机构正在采用这种模式。眼下,至少有300万名患者可以便捷地查阅包括医生意见和建议在内的门诊病历。
But even those institutions have hesitated to share mental health notes. Critics have raised concerns about whether reading notes could prompt anxiety and even rejection of treatment. What will happen if the patient posts the notes on Facebook, inviting comment?
但即便是这些机构,也不愿贸然与心理疾病患者分享病历。批评者担心的是,阅读病历是否有可能让患者感到焦虑,进而抗拒治疗。要是患者把病历放在Facebook上,请人发表看法,又会发生什么事呢?
Proponents of access point out that such notes, which include extensive diagnostic reports, are already available to other doctors and to insurers.
主张允许心理疾病患者查询病历——包括大量诊断报告在内——的人士指出,这类病历已经对其他医生以及保险商开放了。
Although patients have long had the right to their records, the process to obtain copies can be protracted. If a doctor thinks that reading notes would be harmful to the patient or others, they can be withheld.
尽管长期以来患者一直有权获得病历的复印件,但相关程序可能拖拖拉拉。如果医生认为阅读病历会对患者或其他人造成伤害,则可能拒绝提供病历。
Mindful of such pitfalls, the Beth Israel psychiatrists have offered notes initially to only 10 percent of patients. Clinical social workers are making notes more widely available, though some therapists have temporarily opted out. Nina Douglass, a social worker in the ob-gyn clinic, worries about patients with abusive partners. If the abuser insisted on reading the notes, the patient could be in danger.
考虑到此类潜在的困难,以色列堂-女执事医疗中心的心理医生初步只向10%的患者提供了病历。临床社工们正把病历提供给更多患者,但一些治疗师暂时选择了退出。妇科门诊部的社工尼娜·道格拉斯(Nina Douglass)担心,有些患者的伴侣言语恶毒。如果这样的人坚持要阅读病历,可能会将患者置于险境。
"I can imagine that our work can be deepened and enhanced through people reading their notes," Ms. Douglass said. "But one size doesn't fit all."
“可以想见,通过让病人阅读他们的病历,我们的工作能得到深化和加强,”道格拉斯说,“但不能搞'一刀切'。”
Mental health notes have very different readers: the therapist, who may use them as a memory prompt; other doctors treating the patient; insurers; and now the patient. Writing a note with necessary information for all can be daunting.
心理疾病病历有各种各样的读者:把病历当成记事本来用的治疗师;治疗该病人的其他医生;保险商;现在又多出了患者本人。书写一份包含各方所需信息的病历可能是一项艰巨的任务。
Mr. O'Neill, the social work manager, is pressing therapists to use straightforward descriptions. "I used 'affect dysregulation,' and a patient said, 'What on earth is that? Are you saying I'm totally crazy?' " he said. "It just means they can get upset. So why not use the word 'upset'?"
身为社会工作管理者的奥尼尔一直在敦促治疗师们使用简单易懂的措辞。“有一次我用了'情绪失调',一个病人问道:'这究竟是什么东西?你的意思是我完全疯掉了?'”他说,“其实它只不过意味着患者可能会感到沮丧。那么何不就用'沮丧'这个词呢?”
Some psychiatrists disagree.
一些心理医生对此各持己见。
"Diagnostic language is used among doctors to describe features of a mental illness," said Dr. Brian K. Clinton, an assistant professor at Columbia University Medical Center who has written about sharing records. "I would be willing to discuss with a patient what I think. It's a better way to communicate than a note I wrote for other doctors."
“诊断用语是医生群体用来描述心理疾病特征的工具。”以病历分享为题写过文章的哥伦比亚大学医学中心(Columbia University Medical Center)助理教授布莱恩·K·克林顿(Brian K. Clinton)博士表示,“我愿意和患者讨论我的想法。比起让患者阅读我写给其他医生看的病历,这种交流方式更好一些。”
But Dr. Michael W. Kahn, an assistant professor of psychiatry at Harvard Medical School who wrote about the project in JAMA, said that if the therapist explained the diagnosis, some patients might feel relieved, knowing their behavior fits a pattern that others also experience.
但在美国医学会杂志(JAMA)上撰文探讨过该项目的哈佛大学医学院(Harvard Medical School )心理学助理教授迈克尔·W·卡恩(Michael W. Kahn)博士说,如果治疗师对诊断加以解释,一些患者或许会感到如释重负,因为了解到其他一些人有着跟他们雷同的行为模式。
Dr. Glen O. Gabbard, a psychiatrist and professor at Baylor College of Medicine, said that opening notes to patients might have a chilling effect on doctors.
贝勒医学院(Baylor College of Medicine)的心理医生及教授格伦·O· 加巴德(Glen O. Gabbard)博士称,向患者公开病历,可能会让医生不愿表达看法。
"A psychiatrist would be less likely to put down anything he is musing about as diagnostic possibilities or write about what he feels the patient is leaving out," he said.
他说,“心理医生不太可能像从前那样,写下他所考虑到的一切诊断可能性,或者写下他觉得患者并未和盘托出的一些事情。”
Mr. Baldwin's longtime friends know about his harrowing battles with mental illness: The hospitalizations. The manic episodes. The depression. The anxiety so crippling that two years ago, at a Costco parking lot, he couldn't get out of the car.
鲍德温的老朋友们都知道他和心理疾病作战的惨痛经历:住院治疗;躁狂发作;抑郁;以及极具破坏力的焦虑——两年前,他甚至在好市多(Costco)的停车场里无法下车。
As he withdrew into his apartment, pints of ice cream, Zoey, and the telephone became his constant companions. During the worst sieges of anxiety, he would call a few friends three, four times a day.
他曾蜷缩在公寓里,成天与冰淇淋、佐伊和电话为伴。压力最大的那些日子,他每天要给少数几个朋友打三四个电话。
That is the man they recall, he recounted in his freshly tidied apartment. Its décor is hopeful: a multicolored rug, violet curtains, a jaunty lime-green wall.
这就是他们记忆中的那个男人——他在刚刚整理过的公寓里讲述着自己的经历。公寓内部的装潢给人以充满希望之感:地毯五彩缤纷,窗帘是紫色的,墙壁是生机勃勃的浅绿色。
And so is Mr. Baldwin. He is trying to lose weight, maybe someday have a new man in his life.
鲍德温本人也是如此。他正努力减肥,期盼着有一天或许会在生活中迎来一个崭新的自己。
He clicked open another therapy note.
他点开了另一份诊疗记录。
Mr. Baldwin "is continuing to try to push himself to get out more and to be more socially connected even while his emotions tell him to do the opposite," Mr. O'Neill wrote, adding that his patient is "clearly making good, and even courageous, efforts on a number of fronts."
“鲍德温仍在竭力敦促自己更多地走出去,更多地跟他人交往,尽管从情感上来说,他更愿意反其道而行之,”奥尼尔如此写道。他还说,他的病人“显然正虔诚地,甚至可以说是勇敢地做着多方面的努力。”
Mr. Baldwin, who celebrated his birthday recently with a museum lecture, movie and dinner, flushed with pride.
不久前刚以去博物馆听讲座、看电影、吃大餐的方式庆祝了的生日鲍德温,因为自豪而涨红了脸颊。
"I'm going to email this to my friends," he said.
“我要把这些话用邮件发给朋友们,”他说。