2020-08-21
How to Be Your Own Advocate as a Cancer Patient
癌症患者为自己发声
By Lynne Eldridge, MD | Reviewed by Richard N. Fogoros, MD
Updated January 21, 2018
How can you be your own advocate when you have cancer? If you've been online or read anything recently about cancer, you've probably heard the lingo. Phrases such as "self-advocacy," "be an empowered patient," and "shared decision making" allude to a shift in the paradigm of the patient-physician relationship.
癌症患者要怎么为自己发声？最近，上网了解癌症信息时，人们大概会碰到“自我倡导”、“做个自我掌控患者”和“共同决策”，这些都指向医患关系的范式转移。
Yet how do you begin? Those of us who were born before the Y generation grew up with a different philosophy regarding the role of patients and healthcare providers in cancer care. There was an unspoken paternalistic relationship in which patients presented with symptoms, the doctor made a diagnosis and recommended treatment, then the patient underwent that treatment.
这要怎么开始？提到医患角色，在Y一代之前出生的人们成长时接触截然不同的理念。这种旧式的医患关系是一种心照不宣的家长式作风，患者说出症状，医生作出诊断并建议治疗，患者进行治疗。
Medicine is changing. The phrase "participatory medicine" refers to a relationship in which, instead of this outdated pattern, patients are actively working alongside their physicians to choose the best course of cancer treatment.
医疗正在改变。参与医疗是指一种有别于既往模式的医患关系，患者积极地与医生合作，以制定最适合的癌症方案。
You might wonder: "How can I make these decisions without going to medical school? How do I begin to advocate for myself? Read on to understand why these questions are important and to discover tips for getting started.
患者不禁想问：“我没上过医学院，怎么进行医疗决策？为自己发声该怎么开始？”请读下去，以了解这些问题之所以重要的原因，还有怎么开始的提示。
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Advocating for yourself as a cancer patient simply means to take an active role in your diagnosis and treatment plan. It means you understand your diagnosis, have considered the risks and benefits of treatment options, and choose a treatment that fits best for you as an individual.
在癌症护理中为自己表达意见的意思是，积极地参与诊断和治疗方案制定，患者要理解诊断结果，考量治疗方案的风险和获益，并选择最适合自身的治疗方案。
Of course, to participate in this decision making, it's important to understand more than the patient of the past. Later on, we'll share ideas on how to do that.
为了参与医疗决策，重点是比既往的患者懂得更多。我们会分享怎么做，详见下文。
If you think of advocacy, you may think of people protesting and fighting for their rights.This couldn't be farther from the truth when it comes to cancer self-advocacy. Being your own advocate does not mean having an adversarial relationship with your doctor. In contrast, it means working together with your doctor as a team to come up with the best treatment plan for you; a treatment plan which is more satisfying for your doctor as well as it will better fit your specific needs for the best care possible.
自我倡导会令人想起争取权利的抗议者。事实上，癌症的自我倡导也是如此。为自己发声并不意味着与医生形成对立关系。相反，这意味着在制定最适合的治疗方案上与医生进行团队合作，这治疗方案不仅会让医生更满意，也会更好地符合患者对最佳护理的需要。
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The concept of "self-advocacy" is not just a passing fad, but can literally make the difference between life and death. Studies tell us that patients (and loved ones of cancer patients) who learn more about their disease and are more actively involved in their medical care, have a better quality of life. Some studies even suggest they may have better outcomes as well.
自我倡导观念不只是一时的流行，还能起死回生。研究显示，患者（和癌症患者亲属）越了解自身疾病，越积极地参与医疗护理，就有越好的生活质量，有些研究甚至表明，这会带来更好的治疗结局。
With advances in cancer treatment, there are more and more options available for people living with cancer. Sometimes there are several choices with regard to treatment, and only you can know the option that is best for you. It is you living with cancer, and only you know how aggressive you wish to be with treatment, and what side effects you are willing to tolerate. Your oncologist, your friends, and even your spouse and children may decide on a different plan if they were faced with cancer. Honoring yourself means not only making the decision that is right for you alone but being able to cope with the opinions of others who may differ in preferences.
癌症治疗发展突飞猛进，与癌共存者面对越来越多选择。有时，有好几种治疗选择，只有患者自己才清楚哪种最适合。只有与癌共存的患者本身才会懂得想要多积极的治疗，能耐受什么副作用。肿瘤科医生、朋友、乃至配偶和子女或许想要另一个治疗方案。尊重自己不仅意味着作出最适合自己的决定，还意味着能应对与自己偏好不同者的意见。
At the same time that research is expanding exponentially, patients now have nearly unlimited access to this information with which to educate themselves. Databases such as PubMed provide abstracts to countless medical journals, and websites for medical conditions abound. A friend of mine recently spoke to an entering class of medical students making this statement: "Due to access of medical information online, combined with motivation, many patients will know more about their diseases than you do!"
同时，研究也日新月异，患者如今几乎有无尽的信息资源，进行自我宣教。PubMed资料库会提供无数医学期刊的摘要，医学科普网站也很多。有人认为：“由于互联网医学信息的可及性，加上患者的积极性，很多患者对自身疾病的了解会多于刚入学的医学生。”
Self-advocacy not only helps you choose your options and discover new treatments, but it reduces the anxiety and fear associated with cancer. It leaves you feeling empowered and in the driver's seat.
自我倡导不仅有助于选择治疗，发现新型治疗，还会减轻癌症相关性焦虑和恐惧，让患者更有掌控感。
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The first step in being your own advocate is to learn as much as you can about your cancer. There are many ways to do this.
第一步是尽可能多地了解自身癌症病情，方法很多：
Ask questions—lots of questions.
多问问题。
Consider getting a second opinion, ideally at a cancer center which treats a large number of people with cancer similar to yours.
考虑征求第二方意见，最好去同类病例诊治量大的大型癌症中心。
Review information provided by your oncologist and other cancer care team members.
认真地阅读肿瘤科医生及其他医疗团队成员提供的信息。
Research your cancer online or in the library.
上网或到图书馆研究自身癌症病情。
Consider joining an online cancer community, cancer organization, or cancer support group.
考虑参加线上癌症患者互助社群、癌症组织或癌症患友互助小组。
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Asking questions is extremely important when talking with your oncologist. While these physicians are accustomed to explaining the ins and outs of cancer to patients, everyone enters a diagnosis of cancer with different experiences. Don't be afraid to repeat questions until you are satisfied that you understand the answers.
到肿瘤科看诊时，问问题非常重要。虽然医生习惯向癌症患者解释癌症的来龙去脉，但每个人对于患癌都有不同的体验。在充分理解答案之前，别害怕重复问题。
Bringing a friend with you to appointments can be very helpful as you later try to remember what your doctor said. Some people find it helpful to take notes or have a friend take notes while talking with their physician. You may also wish to bring to bring along information you have been given by friends or found online.
让朋友陪同看诊也会有帮助，看诊后TA可以提醒患者医生说了什么。有些患者发觉与医生谈论病情时记笔记（或请朋友帮忙记笔记）会有帮助。患者也可带上自己上网找的或朋友发过来的信息。
Don't be afraid that you are taking up too much of your doctor's time. Oncologists recognize the importance of addressing questions. It can also save you time later on—and the headache of phone calls—to make sure you leave the exam room with your questions answered.
别害怕占用医生太多时间。肿瘤科医生会明白解决问题的重要性。将所有问题都搞清楚，会节省以后的时间（也省去打电话的麻烦）。
Keep a notepad around between visits, and if the questions aren't urgent, write them own to ask at your next visit.
准备一本问题笔记本，记下问题，在看诊时问医生。
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You've probably heard the old adage "2 heads are better than 1." In medicine that rings true as well, and it is generally accepted that many people with cancer will ask for a second opinion.
俗话说，两个头脑胜过一个头脑。看医生也是如此。很多癌症患者会寻求第二方意见，这也是被普遍接受的。
It's important to note that one doctor cannot know everything about every type and subtype of every cancer. Combined with this, advances in the treatments of some cancers is skyrocketing, for example, more new drugs for lung cancer treatment were approved during the period from 2011 to 2015 than during the 40 years preceding 2011. In addition to approved treatments, some oncologists may be more familiar with the clinical trials in progress for your cancer—trials which may be specific to the particular molecular profile of your cancer.
重点是一位医生无法知晓每种癌症的方方面面。加上癌症治疗发展突飞猛进，2011年至2015年间获批的肺癌新药多于2011年之前40年间获批的。除了治疗方法，有些肿瘤科医生会更熟悉新靶向药的临床试验。
It has been found that surgical outcomes for cancer may vary depending upon the medical center. For example, high treatment volume (in other words, a large number of surgeries being done) was linked strongly with survival among people with lung cancer. Check out these tips on choosing a cancer treatment center.
研究显示不同癌症中心会有不同的手术结局。例如手术量大的癌症中心与肺癌患者生存的关联性很强。请了解选择癌症治疗中心的提示。
Another factor sometimes overlooked is the personality of your doctor. When it comes to cancer, you may be working with your physician for an extended period of time. It pays to find a doctor who meshes with your personality and leaves you feeling comfortable and confident in your care.
医生的性格有时被忽略了。癌症治疗需与医生长期合作。患者值得找个好相处的医生，让自己感到自在，对治疗有信心。
What some people fail to realize, is that even if your second (or third or fourth) opinion physician recommends the same treatment plan as the first, you will have the reassurance that you haven't left any leaves uncovered as you move forward with your care. Peace of mind can be priceless.
有些人没发现，其实哪怕第二方意见（第三方乃至第四方）与最初的意见相同，这也是受益的，确保治疗方案考虑周全之下，患者会安心接受治疗。
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While there is a plethora of medical information to be found online, there are currently no regulations as to who can publish this information. Consequently, it can be difficult to know whether the information that comes up on a google search is written by a board of physicians or your next door neighbor's 13-year-old son.
虽然网上有海量的医学信息，但目前美国对于谁能发布信息并没有法规规管。因此，网上搜索到的信息由委员会认证医生还是邻居家13岁的儿子撰写就不得而知了。
What should you look for in finding good medical information on the internet?
在网上寻找有用的医学信息应注意什么？
Check the URL. If it ends with .gov, .org, or .edu is may be more reliable than a site ending with .com. There are some excellent .com sites, but check other criteria in judging the information.
检查网址。以.gov, .org, 或 .edu结尾的网站可能比以.com结尾的网站更可靠，后者也有出色的网站，但审视信息时需考虑其他条件。
Who is the writer? Is the person responsible for the article a medical professional?
作者是谁？文章负责人是不是医学专才？
Is the article reviewed by a physician, other health care provider, or medical review board?
文章有没有经过医生、其他医疗保健提供者或医疗评审委员会审查？
Are the sources of the information listed? If so, do these reference quality information such as studies published in peer-reviewed medical journals?
有没有列出信息来源？如果有，这些具参考质量的信息（例如研究）发表于经过同行评审的医学期刊吗？
Can you clearly distinguish the information being discussed from the advertisements?
能不能区分被谈论的信息和广告？
Are there links to further information if you wish to research the subject in greater depth?
如果希望深入了解文章主题，有没有进一步信息的链接？
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As noted earlier, connecting with a cancer support group, online cancer community, or cancer organization can be invaluable in educating yourself about cancer.
如上文所述，参加癌症患友互助小组、线上癌症患友互助社群或癌症组织对癌症患者的自我宣教十分有益。
A caveat is that it's important to keep in mind that information in chat rooms and from individual patients may not pertain to you, or could even be outright wrong. Yet these communities can be an excellent starting point, especially if you aren't sure what questions you should even be asking. For example, why should you ask your doctor about molecular profiling if you have lung cancer?
记得聊天室的信息和来自个人的信息并不适用于他人，甚至可能错得离谱。但这些群体是很好的起点，尤其不清楚该问什么问题。例如，肺癌患者为何应询问医生有关基因检测的事？
Before sending off any personal information, check out these tips on social media safety for cancer patients.
在网上发出任何个人信息之前，请了解癌症患者如何在社交媒体保持安全的提示。
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Once you have asked questions and gathered medical information, how can you make a good medical decision about your care? Unlike in the past when there were few options for cancer treatment, there are now often a multitude of options—both approved and available in clinical trials—for you to choose from.
患者问问题，收集医疗信息后，怎么进行医疗决策？现在不是以前，癌症治疗选择少得可怜，不管是获批的治疗方法还是临床试验的治疗，如今有很多选择。
Like so many decisions we make in our lives, breaking the process down can make it a bit easier, especially when you are coping with the emotions that accompany a cancer diagnosis.
正如生活中的很多决定，一步步地进行决策，就能轻松一点。
Take your time. Decisions about cancer treatment are not usually urgent, that is, you can often take a few days or a few weeks to sit back and analyze your choices.
Talk to others. Pass your choices by your loved ones; discuss them with your healthcare team, and consider talking with others via a cancer support group or online cancer community. Keep in mind that this input can be invaluable, yet the final decision is ultimately up to you. Don't feel pressured into making a decision that is not right for you personally.
Weigh the pros and cons of your choices. In addition to understanding the effectiveness of the treatments, you will want to consider other factors such as the side effects, risks, costs over and above what your insurance covers, and logistical factors such as the need to travel for treatment, child care, and time off of work.
衡量利弊。除了理解治疗疗效，患者应考虑其他因素，例如副作用、风险、费用和后勤（例如奔赴外地治疗的需要、照顾年幼的儿女和请假）。慢慢来。癌症治疗决策通常并不急，患者有数天乃至数周的充裕时间，分析各种选择。与别人谈谈。与亲人、医疗团队或患友谈论治疗选项。记得一点，虽然他们的意见会很宝贵，但最终决定权还是在患者的手上。患者不应受压力影响，作出不适合的决定。
Shared decision making means more than just listening to the advice of your doctor or giving informed consent. This process, in addition to evaluating the benefits and risks of treatment options, takes into account your personal values, goals, and priorities as a foundation for the choices you make.
共同决策不止意味着聆听医生的建议或签同意书。决策过程，加上治疗方案的获益和风险评估，将个人价值观、治疗目标和头等要务包含进去，形成决策基础。
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What if you aren't very assertive and don't like confrontation? What if you tend to be shy and don't particularly like to ask questions? I've heard people say that they want to be a "good patient," or fear that if they ask too many questions, or come on too strong, their doctor won't like them.
不够果敢自信、不喜欢对抗的人怎么办？本身就是害羞，不喜欢问问题的人怎么办？有些患者想当个好患者，或害怕问太多问题，或表现强硬，会令医生不喜欢他们。
Others are afraid that they will appear to be a hypochondriac if they complain of too many symptoms. For example, they may hesitate to bring up pain out of fear that if they later have symptoms which are even worse, they will be dismissed.
有些人害怕如果对过多症状产生抱怨，就表现得象个疑病患者。例如他们可能因恐惧以后症状恶化会被医生打发掉而不敢说自己疼痛。
If you are feeling reluctant to advocate for yourself, consider how you would advocate for a friend in a similar situation. What would you ask? What would you say? If you would speak up for a friend, speak up for yourself.
不敢为自己发声的患者可以想一想朋友面临类似情形自己会怎么做。会问什么？会说什么？如果患者敢为朋友发声，那么为自己发声肯定没问题。
If you are still finding this difficult, one option is to have a friend or loved one advocate alongside you. I have done this personally for friends with cancer. It may be easier for you to have someone else ask difficult questions, or to bring up ways in which you aren't completely satisfied with your care. In this setting, your friend can "play the bad guy" while you play the role of "nice patient."
如果患者依然觉得困难，那就请亲友出头吧。让别人帮忙问不好意思提出来的问题，或提出护理中的不满。让朋友当“坏人”，患者就可以当个好患者了。
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It's not just your health you may need to advocate for, but your pocketbook as well. With the vast variety of insurance plans, most of which have different limits and tiers of treatment, your choices for a treatment plan may go beyond your personal preferences. Perhaps you've heard of an approach to treating your kind of cancer that is only offered at a cancer center which doesn't fall under preferred providers (first tier) in your insurance plan.
不仅是健康，还要为钱袋子发声。医疗保险种类繁多，大多数有不同的限制和治疗等级，治疗方案的选择不止考虑个人偏好。患者可能发现唯一能提供适合自身的治疗的癌症中心并不在保险涵盖的范围内。
Read through your health insurance policy very carefully. Common mistakessuch as not negotiating the cost of out of network care can be very costly but are easily prevented with a little forethought. Talk with your insurance company about any areas which leave you feeling uncertain, and ask for your case to be reviewed if you think you fall under an exception to one of the rules.
认真地阅读保单。只要有先见之明，就能避免令人损失惨重的常见失误，例如在美国没有就网络外护理进行商议。患者可与保险公司谈论不确定之处，如果患者认为自己属于特例，可要求保险公司审视其个案。
If you don't understand your bill or see charges you don't expect, don't just accept it. Make a phone call. Sometimes silly mix-ups can cause an insurance claim denial, even something as simple as having your birth date entered incorrectly on a clinic form. Check out these tips on how to fight an insurance claim denial.
如果患者看不明白账单，或看到预期之外的变动，切勿接受。打个电话吧。有时混乱会导致保险索赔被拒，哪怕只是在医院病历写错出生日期这样的小事。
Some people may wish to consider hiring a medical billing advocate when overwhelmed with the whole insurance process. You may not understand your bills, be swamped with those your insurance is refusing to pay or be so ill that the thought of sorting through those papers is just too draining. You may hesitate to take this approach since this is a paid service—it isn't free—but depending on your situation it may be penny wise dollar foolish to go it alone. Medical bills are, in fact, the leading cause of personal bankruptcy in the United States.
当实在处理不了保险事宜，有些患者会考虑请医疗账单代言人。患者可能不理解自己的账单，因保险拒赔而手足无措，或因病重难以梳理那些文件的头绪。由于请医疗账单代言人是付费服务，患者可能为此踌躇，但取决于具体情况，这笔钱或会花得值。事实上，在美国，医疗账单是个人破产主要的原因。
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Learning to be your own advocate with cancer is like climbing a mountain. Some people, having found their way to the summit, wish to share what they have learned with others who are beginning their journey; a need to give back in some way.
在癌症护理中学会为自己发声象登山。有些人找到了登顶之路，乐于与其他刚开始旅程的人分享他们的所知，当作一种回馈。
Certainly, cancer is exhausting, and not everyone will feel this way. Yet the support and advice of those who "have been there" is a tremendous comfort to others.
癌症无疑会令人精疲力竭，虽然有些患友自己能应付自如，但患友的支持和建议能带来莫大的慰藉。
You don't need to run marathons, or speak internationally to make a difference; you don't even need to leave your home. The use of social media among people with cancer is increasing every day; with many communities including a combination of patients, family caregivers, advocates, researchers, and health care professionals. In fact, one of the greatest recent advances in cancer management has been "patient-driven research"—research and clinical studies that are being conducted as a direct response to suggestions made by people living with the disease.
患者不必跑马拉松比赛，或在国际舞台上讲话，也可以影响他人，甚至不出家门也可以。癌症患者对社交媒体的使用与日俱增，很多社群不乏患者、家庭照顾者、倡导者、研究者和医护人员。事实上，癌症管理近期最大的进展之一就是“患者驱动研究”——研究人员进行研究和临床研究，以直接回应与癌共存者的提议。
Many of the cancer organizations, for example, LUNGevity and Lung Cancer Alliance for lung cancer, or Inspire, have wonderful communities of people at all places in their cancer journey. Some of these organizations also offer matching services (for example the LUNGevity Lifeline,) where someone newly diagnosed can be connected with someone who has been living with the disease for awhile.
很多癌症组织，例如肺癌的LUNGevity和肺癌联盟或Inspire，在各地的患友参与之下，形成了一些很好的群体。有些组织还提供配对服务（例如LUNGevity生命线），让初诊患者能找到与癌共存的患友。
On a final note, no matter where you are in your cancer journey it is good to remain informed. Research is being conducted not only for treatments but for possible ways of lowering the risk that a cancer will come back.
最后，不管抗癌旅程到了哪个阶段，患者宜保持明智。研究不仅是为了治疗，还寻找减少癌症复发风险的方法。
参考文献
American Society of Clinical Oncology. Cancer.net Taking Charge of Your Care. Accessed 07/01/15.
Hagan, T., and J. Donovan. Self-advocacy and cancer: a concept analysis. Journal of Advanced Nursing. 2013. 69(10):2348-59.
Luchtenborg, M. et al. High Procedure Volume is Strongly Associated With Improved Survival After Lung Cancer Surgery. Journal of the National Cancer Institute. 2013. 31(15):3141-3146.
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