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癌症病人的夺命疼痛

Poor Pain Control for Cancer Patients
癌症病人的夺命疼痛

Recounting her father's struggle with cancer was difficult for the young woman, even several years after his death. He'd endured first surgery and then chemotherapy and radiation, she told me, and the cancer had gone into remission. He was thrilled, but the aggressive treatment left him with chronic, debilitating pain. Once active, he struggled to get around in his own home.

虽然父亲去世已有好几年光景,但这个年轻的女人在回想起他与癌症苦苦抗争的历程时,还是很难过。她告诉我,父亲接受了第一次手术,随后做了化疗和放疗,癌症进入了缓解期。他异常兴奋,但积极治疗给他留下了挥之不去的疼痛,令他衰弱不力。在尚有活动能力时,他甚至连在自己家中走一圈都很难办到。

"It wasn't the cancer that got him," the daughter said. "It was the pain."

“夺走他的不是癌症,而是疼痛,”这位女士说。
 

Her father had turned to all of his doctors, with little relief. His surgeon had looked at his operative wounds, pronounced them well healed, then stated that they were in no way responsible for his disability. Both his cancer doctor and his radiation doctor congratulated him on being in remission but then declined to prescribe pain medications since they were no longer treating him and couldn't provide ongoing follow-up and dosing guidance. His primary care doctor listened intently to his descriptions of his limitations, but then prescribed only small amounts of pain meds that offered fleeting relief at best.

她的父亲曾经求助各个医生,但疼痛并未减轻多少。他的外科医生查看了手术伤口,表示他的伤口愈合得很好,然后断定他这么不舒服,跟手术没关系。而他的肿瘤科医生和放射科医生先是恭贺他的癌症已进入缓解期,然后拒绝为他开止痛药,因为现在他们已不再是他的主治医生,不应再提供跟进的随访同时指导他使用止痛剂了。他的社区医生仔细聆听他描述种种不适,但最后只给他开了小剂量的止痛药,这些药顶多只能让他暂时好受点。

"I'll never forget what my father had to go through," she said, weeping. "I wouldn't wish this on anyone."

她哭着对我说:“我永远都忘不了爸爸遭了多大的罪,我希望谁都不要摊到这种事。”

I wish I could have reassured her that her father's case was unusual. Sadly, according to a new study in The Journal of Clinical Oncology, a significant percentage of cancer patients continue to suffer from pain as her father did.

我真希望自己能向她担保,发生在她父亲身上的情况极为罕见。遗憾的是,根据《临床肿瘤学杂志》(The Journal of Clinical Oncology)刊登的一份最新研究报告介绍,仍然有大量癌症病人在遭受着像她父亲那样的剧痛。

Researchers who surveyed more than 3,000 cancer patients found that nearly two-thirds said they were in pain or receiving pain medications. Roughly a third felt they needed more painkillers to fully treat their symptoms.

研究者调查了超过3000名癌症病人,结果有将近三分之二的被访者说他们处在疼痛中,或正在接受疼痛治疗。大致有三分之一的病人说,自己需要接受更大剂量的止痛剂来达到彻底消除症状的目的。

A month after the patients saw their oncologists, the researchers again asked the patients about their pain. Instead of showing improvement, the percentage of patients who continued to be in pain remained unchanged.

在这些病人看了各自的肿瘤科医生一个月后,研究者再次请病人们描述自己的疼痛状况。结果发现并未出现多少改善,持续处在疼痛中的病人比例保持不变。

Their pain, in other words, had not been treated.

换句话说,他们的疼痛并未得到医治。

The findings are a sobering echo of research from nearly two decades ago that revealed that more than 40 percent of cancer patients did not receive adequate treatment for their pain. While patients were reluctant to ask for relief or to take prescribed pain medications, the researchers found that physicians were just as unwilling to prescribe the needed medications. Nearly a third of cancer specialists waited until the patient was only months away from death before offering maximum pain control.

这一发现,与近20年前的一项研究互相呼应,令人深省,当时的研究称,有超过40%的癌症病人并未得到充足的止痛治疗。一方面,病人不愿意要求开止痛剂,或者不想服用医生开的止痛药,另一方面,研究者发现反过来,医生也不情愿给病人开必要的镇痛药物。有近三分之一的癌症专科医生是等到病人只有几个月的生命时,才开始将镇痛药物的剂量加到上限。

These results were eye-opening for the oncology community and helped fuel a firestorm of initiatives in the late 1990s and early 2000s aimed at improving how doctors address pain in general. State medical boards began to mandate that all doctors take pain management courses before renewing their licenses to practice. In a move presaging today's checklists, pain was declared a patient's "fifth vital sign," a body function to be assessed after temperature, heart rate, respiration rate and blood pressure. And hospital systems, regulatory agencies and entire medical specialty organizations, confident that better education and more explicit efforts were all that was needed, heralded the various proposals as the new norm.

当时的研究结果令肿瘤学界大吃一惊,在20世纪90年代晚期到21世纪初,它推动了一系列活动,旨在提高医生对于疼痛的认识。美国联邦医药协会(State medical boards)开始强制所有医生在更换行医执照前,首先要上疼痛管理课程。其中一项活动要求医生们按清单列表来依次检查病人,它认为疼痛是病人的“第五大重要体征”,在检查完病人的体温、心率、呼吸数和血压后,就需要检查病人的这项生理功能。整个医院体系、监管机构和医学专业组织都自信满满,相信更好的教育和更详尽的努力就已经足够,并将各种提案设定为新的准则。

Unfortunately, that new norm turned out to be not so different from the old.

不幸的是,新准则看来与旧的那一套,也并没多大的区别。

"It was a 'Groundhog Day' moment, certainly not a feel-good one," said Dr. Michael J. Fisch, lead author of the recent study and professor and chairman of the department of general oncology at the University of Texas M.D. Anderson Cancer Center. While there had been a slight improvement in the number of patients whose pain was controlled, nearly a third of patients were still inadequately treated.

“这对我真是个‘土拨鼠日’的时刻(Groundhog Day,电影名,主人公菲尔发现每天醒来都是同一天,昨天的一切都要照常上演——译注),当然,这感觉很糟糕,”最近这项研究的主要作者迈克尔·J·菲什(Michael J. Fisch)医生说。他同时也是德克萨斯大学(University of Texas)M·D安德森肿瘤中心普通肿瘤学系的主任和教授。尽管目前疼痛得到控制的病人数量略有增加,但仍有近三分之一的病人疼痛并未得到充分治疗。

Some of the disappointing results may have been owed to physician and patient fears of narcotic addiction or concerns over side effects. But the main reason, Dr. Fisch and his colleagues believe, is that early initiatives simply underestimated the complexity of good pain management.

如此让人失望的结果,部分原因可能跟医生和病人害怕对麻醉剂上瘾,或者产生副作用有关。不过菲什医生和他的同事们相信最主要的原因在于,最初的方案没有充分认识到,好的疼痛管理方案必定是极为复杂的。

To optimize pain treatment, physicians need to carefully navigate the exam-room interaction, ask open-ended questions and empathize with patients who, in some of the most challenging cases, come from backgrounds very different from their own and describe pain and its effects on their lives in unique ways. A patient from China, for example, might describe her leg as feeling "sour" rather than painful. A man from a community that values stoicism might mention that he is now confined to his bedroom but not volunteer a description of sharp, 8-out-of-10 knifelike pain that he now suffers from intermittently.

医生想要优化疼痛管理,就必须在诊室里悉心引导与病人间的交流,要提出开放式的问题,并能与病人产生共鸣,在某些极具挑战性的情况下,病人的背景与医生的截然不同,他们会以极为特别的方式来形容自己的疼痛以及对生活带来的影响。比方说,一位来自中国的病人可能不会说自己的腿痛,而是说觉得腿“酸”。而一位自小就被要求打掉牙往肚里咽的病人,可能会跟医生说自己目前卧床不起,但仍然不会主动跟医生形容自己正间歇性地经受着刀割般的剧痛,这种疼痛级别如果到顶是10分的话,目前感觉已经到了8分。

Not surprisingly, minority patients in the study tended to have more difficulty getting adequate pain control.

不出意料的是,研究表明,少数族裔的病人往往更难以获得充足的止痛药物。

Cancer patients who were living with the disease were also less likely to have their pain adequately controlled, compared with others. The current reimbursement insurance system offers little incentive to any single provider to take on responsibility for all of their complex needs. Oncologists may no longer be interested in seeing or caring for them because they have finished their cancer treatment and are doing relatively "well." Primary care providers may not be comfortable taking on the intricate follow-up schedules required to detect recurrent cancer.

相比其他病人,目前病情并未痊愈的癌症患者,其疼痛也更不可能得到充分控制。现在的医保报销制度几乎全然没有激励医疗机构和医生承担责任,满足病人各种千头万绪的需求。肿瘤专科医生可能已经对诊治或照顾这类病人没什么兴趣了,因为他们的癌症治疗已经结束,而且目前的病情相对还“不错”。社区医疗机构可能也会认为,为病人安排复杂的随访日程,以期及早发现癌症复发,对他们来说并非易事。

And many doctors may simply hesitate to take on the heavy responsibility of monitoring a patient's ongoing narcotic use, the complicated challenge of figuring out whether the dosage is sufficient while worrying about the potentially lethal complications of prescribing too much, or creating an opportunity for abuse.

此外,许多医生在面对监控病人持续使用麻醉药的沉重责任时,可能会感觉非常犹豫,眼前是个让人为难的挑战:他们一方面需要了解现有的剂量是否足够镇痛,另一方面又需要担心剂量过大可能会带来的致命的并发症,或者开出的药物为病人滥用药物带来可乘之机。

"A doctor can't help but wonder, 'Am I going to be the one responsible for refilling these prescriptions until the end of this patient's life?'" Dr. Fisch said.

“医生不可避免地会问自己,‘我是不是就要责无旁贷,给这个病人开止痛药一直到他离世的那一天?’”菲什医生说。

While this study offers important follow-up data to work conducted two decades earlier, it also represents a growing interest among researchers in the symptoms of cancer, particularly for the growing number of people who are living longer than patients from even a decade ago. Thanks to advances in cancer treatment, more than half of all cancer patients now live five years or more past their initial cancer diagnosis. "We need to be better prepared for this best-case scenario," Dr. Fisch said, because it's one that can include not only more years of life but also persistent fatigue, arthritis, hot flashes, depression, sleep problems and chronic pain.

这项研究为20年前展开的工作提供了重要的后续数据,同时也反映出研究者对癌症症状的兴趣与日俱增,毕竟现在癌症病人的生存期较之十年前,又已经出现了新的增长。由于癌症治疗手段越来越先进,现在有超过半数病人在接受了最初的癌症诊断后,生存期达到或超过了五年。“对于这种最理想的情况,我们需要做出更充分的准备,”菲什医生说。因为这样一来,病人存活的时间长了,但与此同时要解决的新问题也增加了,其中包括了持续的疲劳、关节炎、潮热、抑郁、睡眠问题和慢性疼痛。

In the case of chronic pain, one thing is clear: Adding assessments to a checklist of vital signs and mandating more physician education aren't enough.

说到慢性疼痛,有件事很明了:光是在检查病人重要体征的清单上加上疼痛这一项,强制医生接受更多相关培训,这些还不够。

"Pain is all about the doctor-patient relationship and taking the whole person into account," Dr. Fisch said. "Those things are not quick fixes."

“(病人的)疼痛衡量的是医患关系,是要把病人当作完完整整的人来看待,”菲什说:“这些问题一时半会儿解决不了。”
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