你的心理治療師是怎麼描述你的?

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.

波士頓——大衛·鮑德溫(David Baldwin)和他救助的貓咪佐伊(Zoey)共同居住的合作公寓附近有家醫院，不久前的一天，他在那裏參加了一次團體治療，但並不確定自己當時給人留下了怎樣的印象。鮑德溫一直在與會讓人陷入極度焦慮和沮喪之中的躁鬱症做鬥爭。和很多患者一樣，他會暗自揣測治療師對他的看法。

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.

但與其他患者不同， 64歲的鮑德溫能迅速地、悄悄地找到答案。他把黑色皮轉椅拖到自己的書桌前，隨後登錄到醫院的網站，急切地看起了他的治療師對那次會談的記錄。

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.

臨牀社工斯蒂芬·奧尼爾(Stephen O'Neill)寫道，鮑德溫對他的疾病感到尷尬，這讓他處於孤立的狀態。奧尼爾注意到，該狀態給他帶來了強烈的挫敗感，因爲他渴望與人交往。但在治療期間，他也曾談論過自己是如何給合作公寓裏的鄰居們幫忙的。

"This seems greatly appreciated, and he noted his clear enjoyment in helping others," Mr. O'Neill wrote. "This greatly assists his self-esteem."

“人們似乎非常感謝他，他則明顯感到幫助別人時他自己也樂在其中，”奧尼爾寫道，“這可以非常有效地幫他建立自尊心。”

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."

鮑德溫寬和的臉龐上掠過了一絲微笑。“我很難確認自己已經有所進步，”他說，“閱讀這些內容讓我得到了提示，真不錯。”

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.

心理疾病患者是無法便捷地查詢門診病歷的，儘管罹患其他疾病的患者已經逐漸可以這樣做了。但包括鮑德溫在內，以色列堂-女執事醫療中心(Beth Israel Deaconess Medical Center)的大約700名患者正在參與一場新奇的實驗。

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.

參加完會談數日後，他們就可以在自己的電腦或者智能手機上閱讀治療師做的記錄了。提高信息透明度的目的，是希望加深醫患之間的信任和溝通。

"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."

“我們正掀起一場革命，”主張允許患者查看治療師及醫生所做記錄的哈佛大學(Harvard)醫學教授湯姆·德爾班科(Tom Delbanco)表示，“有些人被驚呆了。”

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?

這一試點項目已經在心理健康羣體內引發了爭議。哪些患者會從中受益，哪些又會受到傷害？病歷將如何改變基於當面交流的醫患關係？對保密性和隱私權又會有什麼樣的影響？

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?

該項目也讓主張同等對待內科和心理疾病患者的人面臨艱難的抉擇。舉例來說，精神分裂症患者如果讀到關於自己的病情正在好轉的內容，或許會停止用藥，他們也該和腸易激綜合徵患者享有同等的查閱診療記錄的機會嗎？

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."

在人們腦海中徘徊的根本問題則是，患者真的想知道他們的治療師是怎麼想的嗎？倡導組織“全國心理疾病聯盟”(National Alliance on Mental Illness)的醫務主任肯尼思·達克沃斯(Kenneth Duckworth)博士表示：“我已經表示願意和病人分享我做的記錄，而他們會說'不用了'。但它是一個值得研究的好想法。”

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.

這種做法非常新穎，對其加以綜合性評估還爲時尚早。去年着手把內科和心理疾病病歷放在網上以便查閱的退伍軍人事務部(Department of Veterans Affairs)，也不過剛剛開始研究該做法對心理疾病患者的影響。

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.

此前有人研究過心理病房的患者與醫生共同閱讀病歷的情形，其結果表明：一些內容會讓患者感到困惑和受了冒犯，但在醫生幫忙加以解釋後，患者開始更多地參與治療，也更信任他們的治療團隊。

Although Beth Israel therapists report that some patients have no interest in reading their notes, responses from a few have been positive and powerful.

儘管以色列堂-女執事醫療中心的治療師表示，某些患者沒興趣閱讀病歷，但還是有患者做出了積極的、強烈的響應。

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.

尼德漢姆(Needham)公司前行政祕書斯泰西·懷特曼(Stacey Whiteman)患有多發性動脈硬化症，面臨着身體和認知上的雙重問題。這種疾病損害了她的自我形象和人際關係；糟糕的心理健康狀況影響了她控制病情的意願。她發現，內科和心理疾病病歷是互爲補充的。

"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."

“不錯，診療記錄可能很難讀，有時候我會懷疑，'我真的說過這些話嗎？'”她說，“但毫無疑問，閱讀這些東西可以督促你繼續接受治療。”

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-女執事醫療中心是哈佛大學的一所附屬醫院。在此類規模較大的機構裏，這樣一個項目或許是可行的。但有些個體從業者擔心它太耗費時間，在技術上太過複雜。

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.

不過，牛頓市的心理學家佩吉·克里斯(Peggy Kriss)是一位先行者。一年多來，她一直在維護一個由服務於患者的私人網頁構成的網站。除了會談記錄，她還會在上邊發佈文章、視頻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.

每次治療結束前，她會和病人一起着手整理會談記錄的內容，釐清此前提到的重點問題。

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.

克里斯醫生稱，對她的大多數患者而言，線上記錄已經成了一種新的常態。一位病人將其形容爲兩次會談間隙的慰藉。

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.' "

有些患者會回帖。“一位強迫症患者告訴我，我犯了些拼寫錯誤，”克里斯醫生說，“於是我回應道，'我只是在爲你示範什麼叫反完美主義。'”

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-女執事醫療中心的項目脫胎於由德爾班科博士及其同事發起的“公開病歷”(OpenNotes)計劃。該計劃讓三家醫療機構的2.2萬名患者得以查閱醫生做的記錄。2011年的一份調查報告顯示，患者們做出了積極的響應，開始對治療更爲投入。

More systems are adopting the model. At least three million patients now have swift access to office visit notes, including observations and recommendations.

更多的醫療機構正在採用這種模式。眼下，至少有300萬名患者可以便捷地查閱包括醫生意見和建議在內的門診病歷。

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?

但即便是這些機構，也不願貿然與心理疾病患者分享病歷。批評者擔心的是，閱讀病歷是否有可能讓患者感到焦慮，進而抗拒治療。要是患者把病歷放在Facebook上，請人發表看法，又會發生什麼事呢？

Proponents of access point out that such notes, which include extensive diagnostic reports, are already available to other doctors and to insurers.

主張允許心理疾病患者查詢病歷——包括大量診斷報告在內——的人士指出，這類病歷已經對其他醫生以及保險商開放了。

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.

儘管長期以來患者一直有權獲得病歷的複印件，但相關程序可能拖拖拉拉。如果醫生認爲閱讀病歷會對患者或其他人造成傷害，則可能拒絕提供病歷。

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.

考慮到此類潛在的困難，以色列堂-女執事醫療中心的心理醫生初步只向10%的患者提供了病歷。臨牀社工們正把病歷提供給更多患者，但一些治療師暫時選擇了退出。婦科門診部的社工尼娜·道格拉斯(Nina Douglass)擔心，有些患者的伴侶言語惡毒。如果這樣的人堅持要閱讀病歷，可能會將患者置於險境。

"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."

“可以想見，通過讓病人閱讀他們的病歷，我們的工作能得到深化和加強，”道格拉斯說，“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.

心理疾病病歷有各種各樣的讀者：把病歷當成記事本來用的治療師；治療該病人的其他醫生；保險商；現在又多出了患者本人。書寫一份包含各方所需信息的病歷可能是一項艱鉅的任務。

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'?"

身爲社會工作管理者的奧尼爾一直在敦促治療師們使用簡單易懂的措辭。“有一次我用了'情緒失調'，一個病人問道：'這究竟是什麼東西？你的意思是我完全瘋掉了？'”他說，“其實它只不過意味着患者可能會感到沮喪。那麼何不就用'沮喪'這個詞呢？”

Some psychiatrists disagree.

一些心理醫生對此各持己見。

"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."

“診斷用語是醫生羣體用來描述心理疾病特徵的工具。”以病歷分享爲題寫過文章的哥倫比亞大學醫學中心(Columbia University Medical Center)助理教授布萊恩·K·克林頓(Brian K. Clinton)博士表示，“我願意和患者討論我的想法。比起讓患者閱讀我寫給其他醫生看的病歷，這種交流方式更好一些。”

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.

但在美國醫學會雜誌(JAMA)上撰文探討過該項目的哈佛大學醫學院(Harvard Medical School )心理學助理教授邁克爾·W·卡恩(Michael W. Kahn)博士說，如果治療師對診斷加以解釋，一些患者或許會感到如釋重負，因爲了解到其他一些人有着跟他們雷同的行爲模式。

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.

貝勒醫學院(Baylor College of Medicine)的心理醫生及教授格倫·O· 加巴德(Glen O. Gabbard)博士稱，向患者公開病歷，可能會讓醫生不願表達看法。

"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.

他說，“心理醫生不太可能像從前那樣，寫下他所考慮到的一切診斷可能性，或者寫下他覺得患者並未和盤托出的一些事情。”

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.

鮑德溫的老朋友們都知道他和心理疾病作戰的慘痛經歷：住院治療；躁狂發作；抑鬱；以及極具破壞力的焦慮——兩年前，他甚至在好市多(Costco)的停車場裏無法下車。

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.

他曾蜷縮在公寓裏，成天與冰淇淋、佐伊和電話爲伴。壓力最大的那些日子，他每天要給少數幾個朋友打三四個電話。

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.

這就是他們記憶中的那個男人——他在剛剛整理過的公寓裏講述着自己的經歷。公寓內部的裝潢給人以充滿希望之感：地毯五彩繽紛，窗簾是紫色的，牆壁是生機勃勃的淺綠色。

And so is Mr. Baldwin. He is trying to lose weight, maybe someday have a new man in his life.

鮑德溫本人也是如此。他正努力減肥，期盼着有一天或許會在生活中迎來一個嶄新的自己。

He clicked open another therapy note.

他點開了另一份診療記錄。

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."

“鮑德溫仍在竭力敦促自己更多地走出去，更多地跟他人交往，儘管從情感上來說，他更願意反其道而行之，”奧尼爾如此寫道。他還說，他的病人“顯然正虔誠地，甚至可以說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.

不久前剛以去博物館聽講座、看電影、吃大餐的方式慶祝了的生日鮑德溫，因爲自豪而漲紅了臉頰。

"I'm going to email this to my friends," he said.

“我要把這些話用郵件發給朋友們，”他說。