PowerPoint Slides English Text Mandarin Chinese Translation Palliative Care, Part 1. 姑息性护理, 第 1 部分 VideoTranscript

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1 PowerPoint Slides English Text Mandarin Chinese Translation Palliative Care, Part 1 姑息性护理, 第 1 部分 VideoTranscript Professional Oncology Education Palliative Care, Part 1 Time: 26:42 Donna S. Zhukovsky, M.D., F.A.C.P., F.A.A.H.P.M. Professor Palliative Care & Rehabilitation Medicine The University of Texas MD Anderson Cancer Center Hello, my name is Donna Zhukovsky. I am a medical oncologist and palliative care physician at the University of Texas MD Anderson Cancer Center. Today, we ll be discussing the first part in the series of three about palliative care. 视频文本专业人员肿瘤学教学讲座姑息性护理, 第 1 部分时间 : 26:42 德克萨斯大学 MD Anderson 癌症中心姑息性护理和复健医学科教授 Donna S. Zhukovsky, M.D., F.A.C.P., F.A.A.H.P.M. 大家好, 我叫 Donna Zhukovsky, 是德克萨斯大学 MD Anderson 癌症中心的肿瘤科及姑息性护理医生 今天我们将讨论姑息性护理系列三部分讲座的第一部分 Donna S. Zhukovsky, M.D., F.A.C.P., F.A.A.H.P.M. Professor Palliative Care & Rehabilitation Medicine 1

2 Objectives Upon completion of this module, participants will be able to: Provide a definition of palliative care Identify symptoms commonly experienced by patients with advanced cancer and discuss an approach to symptom assessment and management The objectives of this module are that you will become familiar with the definition of palliative care, and also, at the end of this discussion, be able to identify symp --- symptoms commonly experienced by cancer patients, and discuss an approach to symptom assessment and management, so that you ll always have this as a tool kit in your armamentarium. 本单元的目的是让大家熟悉姑息性护理的定义, 而且在本次讨论结束时, 能够识别癌症患者常见的症状, 并讨论症状评估和管理方法, 以便能随时使用这一工具系列 An Overview of Palliative Care Definition Goals of palliative care Common symptoms Domains of symptom assessment Approach to symptom assessment and management Models of palliative care in the U.S. In terms of an overview, we ll be talking about definition; the goals of pal --- palliative care; commonly experienced symptoms; the domains that are pertinent to symptom assessment; an approach to symptom assessment and management. And we ll conclude by discussing various models of palliative care that are available to us in the United States. 总的来说, 我们会讨论定义 ; 姑息性护理的目标 ; 常见症状 ; 与症状评估相关的领域 ; 症状评估和管理方法 然后在总结时, 我们会讨论在美国可以使用的各种姑息性护理模式 2

3 Revised WHO Definition of Palliative Care (May, 2002) Palliative care is an approach which improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Now, first and foremost, the revised definition of palliative care as provided by the World Health Organization, in May 2002, defined palliative care as an approach, which improves the quality of life for patients and their families facing the problems associated with life-threatening illness. So, I want to emphasize here this idea of approach, so that it s not a rigidly applied type of care that needs to be delivered only in one part of the patient s treatment course, but rather it s an approach that can be integrated into their oncologic care or the care of whichever life-threatening illness that the individual has. I would also like to emphasize in this definition that it s for problems associated with life-threatening illness. And the importance of this is that palliative care does not need to be restricted only to individuals who have been identified as dying, but simply can be used by anyone experiencing the problems associated with lifethreatening illness. So, the --- the good news is people can be cured and still be eligible or a candidate for palliative care. Please also note that the definition includes the patient and the family. So, unlike traditional medicine for adults where the focus really is on the individual itself, the care is provided to the patient and the family recognizing that all are important to one another and that illness in --- impacts the family as loosely defined. It depends on early id --- identification and impeccable assisment --- assessment for treatment of pain and other problems. And here again the problems are not restricted to physical problems, but also include the psychosocial and spiritual dimensions. 首先让我们来谈谈世界卫生组织在 2002 年 5 月提供的姑息性护理修订版定义 这一定义将姑息性护理规定为一种患者及家人在面临危及生命疾病相关问题时改善生命质量的方法 我想在这里强调姑息性护理是一种方法的概念 所以它并不是只能在患者疗程某部分中严格应用的治疗类型, 而是纳入患者个人肿瘤护理或任何危及生命疾病护理的方法 我还要强调在这一定义中, 姑息性护理是针对危及生命疾病的相关问题 这其中的重要性在于, 我们无需将姑息性护理的应用局限于临终人士, 而是要将其应用于出现危及生命疾病相关问题的所有人 这样的好处是即使所患疾病可以治愈, 患者仍然有资格或可以接受姑息性护理 还要注意这一定义包括了患者及家人 所以不同于注重患者本人的传统成人医学, 姑息性护理是提供给患者及家人, 认识到患者和家人彼此之间的重要意义, 而且广义来说, 疾病会影响整个家庭 姑息性护理依赖的是对疼痛和其他问题的早期识别和无懈可击的评估 这里的问题也并不局限于身体问题, 而是包括社会心理和心灵方面的问题 3

4 Revised WHO Definition of Palliative Care for Children Active total care of the child s body, mind and spirit, support to the family Begins with diagnosis and continues regardless of whether or not a child receives treatment directed at the disease Requires a broad multidisciplinary approach that includes the family and makes use of available community resources Can be provided wherever the child is located How Can Palliative Care Help Your Patients? Control distressing symptoms Lessen emotional and spiritual distress; help find meaning in life story Help obtain and clarify information about disease process and anticipated course Provide emotional support (patient and family) Facilitate decisions about care choices and advance directives Now, for children, I d like to point out that the same philosophies apply. But this definition has been further defined for children, so that it recognizes active total care of the child s body, mind, and spirit, as well as provision of support to the family, that it begins at the time of diagnosis, and some would even say prior to diagnosis when the diagnostic procedures have been initiated. And it continues whether or not the child is receiving treatment directed at the disease itself. It requires, as for adults, a broad-based multidisciplinary approach that includes the family and makes use of available community resources. And it can be provided wherever the child is located. And when one thinks of children, we need to step back and think that the child lives not only in the home with his or her family, but also in the community at large and, in particular, in school and with their child peers. Now, how can palliative care help you and your patients? Well, first of all, we provide control of distressing symptoms. And here I emphasize that it s control and not elimination, as you will see a little later on, that typically one must balance relief of the symptom with treatmentassociated side effects. Palliative care can help lessen emotional and spiritual distress, and help find meaning in a life story. And that is a big part of what we do, be it for children, adults, or family members. Often palliative care specialists help obtain and clarify information about the disease process and anticipated course. Frequently many people are involved in the person s care and it can become very confusing. So stepping back and helping it --- helping people understand in their own terms what s happening in their bodies or their family members body in terms of the disease and associated treatments, provision of emotional support to patient and family, and facilitating decisions about care choices and advanced directives. So here we don t make the choices for people, 我要指出, 同样的原则也适用于儿童 但是这一定义对儿童做了进一步的规定, 要从获得诊断时开始, 有时甚至在诊断之前启动诊断性程序时, 就开始不仅积极全面地护理患童的身 心 灵, 而且要为家人提供支持 无论患童是否在接受针对疾病本身的治疗, 都要继续姑息性护理 与成人患者一样, 儿童的姑息性 护理也需要包括家人在内, 使用现有社区资源的广泛多学科方法, 无论患童身处何地都可提供姑息性护理 我们在斟酌儿童的情况时, 需要退后一步, 考虑到患童不仅在家中与家人同住, 还生活在社区这一大环境, 尤其是学校和同龄儿童中间 那么姑息性护理可以如何帮助医生及其患者呢? 首先, 姑息性护理可以控制引起困扰的症状 这里我要强调是控制, 而不是消除 大家稍后可以看到, 我们 通常必须在缓解症状与治疗相关副作用之间达到平 衡 姑息性护理可以帮助减少情感和心灵方面的困扰, 帮助找到人生的意义 这是我们工作的重要部分, 儿童 成人或家人都是如此 姑息性护理专家常 常帮助取得和明确有关疾病进展和预期疗程方面的信息 常常会有很多人士参与对患者的护理, 让情况变得难以琢磨 这时就需要后退一步, 帮助人们从他们自己的角度理解他们自己或家人身体在疾病和相关治疗方面发生的变化, 为患者及家人提供支持, 并促进 4

5 How Can Palliative Care Help Your Patients? Assist with decisions and implementation of care choices in the community Assist with talking to children of adult cancer patients and siblings of children with cancer about serious medical illness and death Be a resource but rather provide them with, first of all, the thought that this is --- is something that can happen. It s not something that that people typically think about. But also give them a structure or framework for a decision making, so that they can make meaningful choices for themselves ---, care choices for themselves, based on a good understanding of their disease process and what else is important to them in terms of their overall life. We also help with decisions and implementation of care choices in the community, assist with talking to children of adult cancer patients and siblings of children with cancer about serious medical ill --- illness and death. These are particularly vulnerable populations that are frequently overlooked. And last, but not least, certainly be available as a resource for whatever needs arise. 护理选择和事前指示决定 所以我们并不是代替人们做出决定, 而是首先让他们明白这是可行的 人们通常并不会想到这些 此外还要向他们提供决策结构或框架, 以便他们能在明确理解自己病情和整体生活中其它重要事物的前提下, 做出明智的治疗选择 我们还帮助在社区内决定并执行护理选择, 协助向成年癌症患者的子女以及癌症患童的兄弟姊妹谈论恶疾 与死亡等话题 这些人尤其脆弱但却常常被忽视 最后同样重要的是, 随时在有需要时提供协助 5

6 Prevalence of the Most Common Symptoms in Advanced Cancer (1000 Adults) Symptom % Symptom % Pain 82 Lack of Energy 59 Easy Fatigue 67 Dry Mouth 55 Weakness 64 Constipation 51 Anorexia 64 Dyspnea 51 >10% Wt Loss 60 Early Satiety 50 Donnelly S and Walsh D. Semin Oncol (2 Suppl 3):67 Now moving on to a discussion of symptoms, what I d like you to see --- take away from this table is not the actual frequency of --- of different symptoms. This was taken from a database of 1000 adults with advanced cancer seen by a palliative care service elsewhere, but that symptoms are common. So, for example, if you look and you can see here, pain occurs in about 82% of people in this particular cohort, but fatigue in about two-thirds, weakness in about two-thirds, similarly anorexia in about two-thirds, so pain doesn t come in isolation. Symptoms tend to travel in packs and, if there is one symptom, there is frequently multiple. So it behooves us to assess symptoms systematically, so that we don t overlook a symptom. 我们现在来讨论症状 我希望各位从这张表格了解的并非是不同症状的实际发生频率 这张表格取自其他一处姑息性护理服务机构观察 1000 位晚期成年患者得到的数据库, 但这些症状都较为普遍 例如, 可以 看到这一特定群组中大约 82% 的患者出现疼痛, 疲乏大概是三分之二, 虚弱大概是三分之二, 厌食同样大概是三分之二 所以疼痛并非孤立出现 症状常常是成组出现, 如果出现一种症状, 则常常伴有多项症状 因此我们必须要系统评估症状, 这样就不会遗漏某种症状 Domains of Symptom Assessment Social Medical Symptom Expression Psychological Spiritual As alluded to earlier, symptoms are not just physicallybased or biologically-based, but can be impacted by multiple domains, including the social, the psychological, and spiritual. And to asses a symptom without including assessment of these domains, doesn t result in optimal care and frequently will result in --- in suboptimal symptom control. So, to give you an example, if any of you have ever slammed your finger in the car door accidentally, we all know that that hurts. There is a clear cut physiological reason for the pain. But if you slam your finger in the car day --- door, the day you find out that you passed your boards or you got your --- you got a new job that you had been hoping for, as opposed to a day that you got fired or maybe broke up with your partner or spouse, that pain is going to hurt a lot worse on those days than on the days that you found out something good. So, clearly our minds and what s happening in our environment can impact the pain or whatever symptom that the person is experiencing. So, what we actually see is the patient s symptom report as well as their symptom 我们之前曾提及, 症状不仅是身体上的或生物方面的, 而是受到多方面的影响, 包括社会 心理和心灵方面 评估症状时如果不评估这些方面, 就无法产生最佳护理, 而是常常造成次佳症状控制 举例来说, 如果大家有谁曾经被车门意外夹到手指, 都知道这样 会很痛 这种疼痛有很明确的生理学原因 但是如果夹到手那天你通过了医生资格考试, 或是找到了理想 的工作 相比之下, 如果那天你被解雇, 或者与自己的伴侣或配偶分手, 则感到的疼痛程度要比你得到好 消息的那些天要严重得多 所以很明显, 患者的精神状况和周围环境发生的状况可影响患者发生的疼痛或 任何其他症状 所以我们实际上看到的是患者症状报告及其症状表达 但患者本人可能并不能意识到还有 6

7 expression. And they themselves may not recognize that there are other things contributing, for example, to the pain experience and it s our jobs as clinicians to be able to tease this apart, so that we can appropriately treat the symptom with the right approaches. For example, if somebody is experiencing and reporting a lot of pain, yet the pain is exacerbated by underlying fear of death or perhaps some existential distress as relates to their own sense of personal meaning, simply providing pain medicine will not adequately treat the pain, may result in side effects like delirium, and will leave the underlying issue, i.e. the existential distress or the impaired sense of meaning untreated. So, it behooves us, really I can t emphasize it strongly enough, to attend to all these domains that contribute to symptom experience and symptom expression. 其他因素造成了, 比如疼痛感觉 我们作为临床医生有责任区分这些因素, 以便采取正确方法妥善治疗症状 例如, 如果某位患者出现并报告有很多疼痛, 而且因为对死亡内在的恐惧或与患者自己可能对个人生命意义存在的某些相关困扰使疼痛加剧, 则仅仅提供止痛药不足以治疗疼痛, 而且可能产生诸如谵妄在内的副作用, 同时内在问题, 即存在的困扰或生命意义感, 都没有得到治疗 所以我们必须处理这些造成症状体验和症状表达的所有方面, 这一点怎么强调都不过分 Palliative Care Interdisciplinary Team Patient Care Attendants Physicians APNs and PAs Child Life RNs PT/OT Chaplain Patient Pharmacist Psychiatric Nurse Counselor Dietician Psychologist Speech Therapy ISCs/PSCs Social Worker Okay, so, now you can see why I have emphasized that and why we need such a big team. So, the palliative care interdisciplinary team includes multiple members. It can t rely simply on a physician or a nurse, but it really requires access to individuals from multiple --- professionals from multiple different dimensions. The actual mix may change from one palliative care team to another, but they are all indispensable. And, depending on the context, all may be involved for a given pa --- patient or you may call in others as needed. Now, the other thing I d like you to notice on this slide is that this isn t a palliative care multidisciplinary team, but rather it s an interdisciplinary team. And what that means is that instead of people just coming in and delivering their opinion on the patient, you know, one may come and then the next, and they leave their notes in the chart, it really requires an interdigitation, if you will, of their input. So that people sit down and talk together and understand how each person s contribution influences the impression 这里大家可以看见我为什么强调以及我们为什么需要一支庞大的团队 姑息性护理跨学科团队包括多位成员 不能仅仅依靠某位医生或护士, 而需要接受来自 多个不同层面专业人士的服务 团队的实际组合情况可能因团队而异, 但是所有人员都不可或缺 取决于具体情况, 某位患者可能需要所有人员参与, 或者可能需要招纳其他成员 在这张幻灯片上, 我还希望大 家注意到这并非是姑息性护理的多学科团队, 而是跨学科团队 这意味着, 各专业人士并非单纯前来提出对特定患者的意见, 而是这位来, 然后那位再来, 他 们在病历上留下笔记 我们实际上需要他们融会贯通各自的意见 也就是说, 专业人士坐下来探讨并取长补短, 这样就能针对特定患者和 / 或家人所有相关领 7

8 Symptom Assessment History Physical examination Indicated diagnostic tests Synthesis of diagnosis and treatment plan Reassessment of the others so that we come togeth --- come up together with a cohesive plan that targets all the relevant areas for that particular patient and/or family member. And it may be that, at one time, the physician takes the lead, whereas at another time, it may be the patient care assistant or the chaplain if you will. So lots of different examples about how that can work, but they really--- it s an interdiction -- - [speaker intended to say integration ] --- of care and reliance on one another s expertise to synthesize the optimal treatment plan. Okay. So, symptom assessment is just like any other biomedical assessment in the sense that it relies on a history, physical examination, and any indicated diagnostic tests in order to synthesize a diagnosis and treatment plan. So you come up with your --- your working diagnosis and the relevant treatment plan, but what s a little bit different here or what, at least I need to emphasize here, is the role of reassessment. These are ill individuals, so not only do you want to assess the beneficial impact of your treatment plan and any negative side effects or complications, but you need to repeatedly reassess as new pathology may arise. So, you need to check out how well you re doing, what s helping, what s harming, and then keep monitoring because there may be new reasons for a particular symptom or new symptoms may develop. 域共同达成全面计划 可能这一次是医生起主导作用, 下一次是患者护理助理或牧师起主导作用 所以 进行方式有许多不同的例子, 但是关键在于护理的融 会贯通, 依赖相互的专业经验, 形成理想的治疗计划 在依靠病史 体检和任何提示的诊断性检测形成诊断和治疗计划方面, 症状评估与任何其他生物医学评估并无二致 你制定工作诊断和相关治疗计划, 但略有不同之处, 或者说我至少应该强调的, 是重新评估的作用 这些是患者, 因此不仅要评估治疗计划的有益影响以及任何不良副作用或并发症, 还需要在可能出现新的病理学表现时重复进行重新评估 需要查看护 理效果, 哪些措施有帮助, 哪些有害, 然后持续检测, 因为可能有形成特定症状或新症状的新原因 8

9 Symptom Assessment: History Symptom history Systematic symptom documentation Symptom-specific history Validated measures Oncologic history General medical history Psychosocial history Now, here s where it gets a little more intense in that the symp the history is a little bit more detailed, if you will, than a general medical history. Because in addition to the oncologic and general medical history, you need a symptom specific history as well as the psychosocial history for the reasons that we previously emphasized. In terms of the symptom history, because symptoms tend to come in multiples and because there are many barriers to patients reporting their symptoms to us, which I won t go into here, it s important to do systematic symptom documentation. So, don t just ask randomly if people have pain or dyspnea or maybe nausea, but have a systematic approach; and we will come back to that. And then for the symptoms of particular concern go into a detailed symptom-specific history and to do all this one can take advantage of validated mether --- measures and again I ll be coming back to that. But while ---, for example, we can t as objectively measure serum glucose as you might in a serum diabetic, there are validated tools that we can use to measure the various dimensions of pain or other symptoms, such as intensity or quality. 这一部分的内容较为密集 姑息性护理的病史要比一般病史略微详细一些 因为除了肿瘤学和一般病史, 鉴于之前强调的原因, 你还需要症状特定病史以及社会心理学病史 就症状病史而言, 因为症状一般成组出现, 而有许多因素阻碍患者向我们报告自己的症状 ( 我不会讨论这部分内容 ), 所以系统性症状记录较 为重要 所以不要随意询问患者是否有疼痛 呼吸困难或者恶心, 而是要系统性询问 稍后我们会讨论这部分内容 然后针对特别关注的症状采集详细的症状 特定病史 在进行所有这些工作时可以使用经过验证的措施 我稍后会介绍相关内容 但是, 举个例子, 我们不能像血清糖尿病一样客观测量血清葡萄糖水平 我们可以使用经过验证的工具, 来测量疼痛或其他症状的不同方面, 例如强度或特性 9

10 Now, here you see the depiction of the symptom assessment tool. In our Clinic, we use the Anderson symptom assessment tool, which rates a variety of symptoms on a 0 to 10 scale, 0 being no pain or no intensity of that symptom and 10 being the worst imaginable. Our clinic nurses for patients in the outpatient setting, then gras --- graph them for us and you can see here that this particular individual doesn t have much pain, but does have a lot of fatigue, nausea, depression, anxiety, and drowsiness. And that their overall --- overall sense of well-being is quite impaired at a 10. And the sense of overall well-being is a good proxy measure for quality of life. In addition to systematically assessing symptoms, we also systematically assess cog --- for cognitive impair --- impairment or delirium in that these are common phenomena in people with advanced cancer and the frequency of delirium, which is somewhat distinct from cognitive impairment, increases as people become more ill, as people use more psychoactive medications and when hospitalized. You can screen for cognitive impairment as one component of delirium with the Mini-Mental Status Score. Change in Mini-Mental Status Score might be suggestive of the need to explore more for delirium or there are delirium diagnostic score tools, such as the Memorial Delirium Assessment Scale. We also screen, if you can look at the lower part of this table, for a prior history of alcoholism using the CAGE Questionnaire Score. And this is felt to be more sensitive to current or prior history of substance abuse with alcohol then simply asking for the alcohol intake. Now, the point here is that people with a history of alcohol dependency, be it current or past, may have a greater tendency to chemically cope. So, for example, there may be a higher pain expression. And again, it would be important for us to recognize that, so that rather than simply escalating opioids for pain, we might consider providing other means of support in addition to opioids or the relevant 这里显示的是症状评估工具示例 我们诊所使用的是 Anderson 症状评估工具 这项工具使用一个 0 到 10 的量表, 对各种症状分级 0 是没有疼痛或相关症状没有任何强度, 而 10 是想象之中最严重的程度 然后我们诊所的门诊护士为我们绘制患者图表 大家在这里可以看到, 这位患者疼痛并不明显, 但是有显著 的疲乏 恶心 抑郁 焦虑和嗜睡 而其健康总体感觉受到严重影响, 为 10 分 健康总体感觉是生活质量的良好替代指标 除了系统性评估症状, 我们还要系统性评估认知障碍或谵妄 这些是晚期癌症患者常见的现象 谵妄与认知障碍略有区别, 而且随着患者病情加重, 在住院时会使用更多精神影响药物, 谵妄 的频率会增加 可以采用简易精神状态分数, 作为谵 妄的一个组成部分筛查认知障碍 简易精神状态分数发生变化可能提示需要进一步探查谵妄, 或者可以使用谵妄诊断性分数工具, 例如 Memorial 谵妄评估量表 在这份表格下方可以看到, 我们还会使用 CAGE 问卷分数筛查之前的酗酒史 与简单询问酒精摄入情 况相比, 这种方法被认为对目前或之前酗酒史更为敏感 这里的关键在于无论是现在还是以前有酒精依赖史的人, 都更有可能滥用化学品 例如, 他们的疼痛表达可能更高 我们务必要认识到这一点, 因而不是简单地提高阿片类止痛药物的剂量, 而是可能考虑在 阿片类药物或相关药物的基础上, 提供其他方式的支 10

11 Symptom Assessment Symptom Specific History Intensity Frequency Temporal features (onset, duration, pattern) Relieving/exacerbating features medications. So, it s not a judgmental assessment, if you will. It s not meant to judge, but rather to recognize that these individuals may be at more risk for certain types of behavior and might benefit from different or additional types of support. Now, in terms of the symptom specific history, it s important to ask about intensity, frequency, How often does it happen?, temporal features, as. When did it start, how long has --- have they had it for, what makes it better, what makes it worse? Sometimes people need help with this. They won t necessarily remember that they ve had pain for two days or three meeks --- weeks or six months. So they might be able to tie it back to some life event, like a child --- such as a child s birthday. You can help look at the pattern of pain. For example, people with bone pain often are fairly comfortable at rest, but develop severe pain with movement. So that pattern might be helpful both in terms of diagnosing the pain as well as developing treatment plans. And you want to look at relieving and exacerbating features again in terms of what helps, what hurts, and trying to pin down the --- pin down the --- underlying cause. 持 所以这并非评判性的评估 这样做的目的并不是评判, 而是为了认识到这些患者出现某些行为类型的风险更大, 可能会从不同或其他支持类型受益 就症状特定病史而言, 务必要询问症状的强度 ; 频 率 ; 发生频率如何? ; 时间特征, 例如 何时开始? 持续多久? 什么可以减轻症状? 什么可以加重症状? 有时患者需要帮助 他们并不总能回想起自己 的疼痛持续了两天或三周, 还是六个月 他们可能把症状与生活中的某些事件相关联, 例如子女的生日 你可以帮助查看疼痛模式 例如, 有骨痛的患者常常在休息时感觉不到疼痛, 而会在移动时发生剧痛 所以疼痛模式可以帮助诊断疼痛及制定治疗计划 还可以查看什么可以减轻症状, 什么可以加重症状, 了解症状的缓解和恶化特征, 确定内在病因 11

12 Symptom Assessment Symptom Specific History (continued) Quality/associated clinical characteristics Associated distress Prior treatment modalities and their efficacy Quality and associated clinical characteristics are also important. For example, for pain, which is one of the better described symptoms, which is why I m falling back to this often, we can have sharp pain, which is quite common with some --- pain of somatic ---edi --- pathophysiology. Pain that happens when there s injury to skin or soft tissue tends to be well localized, often can recognize the etiology. In contrast, visceral pain, which happens with stretch or distention of intrathoracic or intraabdominal viscera tends to be less well localized. If you think about a kid with belly pain, the belly hurts, well --- well ---, all over. You can t just put your finger on --- on one point in contrast, for example, to a paper cut. This pain tends to be achy and gnawing and like. Somatic pain responds typically fairly well to the traditional analgesics, such as the non-steroidal anti-inflammatories, or the opiate analgesics. In contrast, neuropathic pain, which happens with injury to nerve history --- nerve tissue when there s nerve damage, tends to be unfamiliar to most of us, often described as a burning pain or the sense that insects are crawling on the skin, formication. Or it might be lancinating and electric shock-like as people see with trigeminal neuralgia. In contrast to somatic and visceral pain, which resolves when the nociceptive stimulus abates, this pain can persist long after the inciting stimulus is gone; and tends to respond somewhat less well to the traditional analgesics and benefits more to a diverse group of drugs --- class of drugs --- called the adjuvant analgesics. So, for example people who have the burning glove and stocking --- hands and glove peripheral neuropathy of diabetes or which is seen with some chemotherapeutic agents might benefit more from drugs, such as gabapentin, which is an anticonvulsant or one of the antidepressants, then they might from an opioid --- or they might benefit most together. So learning the characteristics, the qualitative descriptors of the person s pain helps us sort out this 症状的特性和相关临床特点也很重要 作为描述较为完善的症状, 我常以疼痛为例 可以有身体病理生理 学非常常见的锐痛 皮肤或软组织损伤造成的疼痛通常定位明确, 而且可以确认病因 与之相反, 胸腔或腹腔脏器牵扯或膨胀造成的脏器疼痛通常定位不佳 可以设想一名整个腹部疼痛的儿童 这与纸割伤不同, 无法确定疼痛部位 这种疼痛常常是钝性和咬噬 样疼痛 身体疼痛采用传统镇痛药, 例如非甾体抗炎药或阿片镇痛药治疗的效果通常颇佳 与之相反, 我们中的大多数人通常都不熟悉神经损伤时神经组织受 损引起的神经病变性疼痛 这种疼痛常常被描述为烧灼痛, 或者皮肤上虫子爬行的感觉, 蚁走感 或者可以是见于三叉神经痛的刀刺样和触电样疼痛 身体和 脏器疼痛会在相关伤害性刺激因素减轻时消退 而神经病变性疼痛与之相反, 可以在激发刺激因素消失后长期持续存在 ; 对传统镇痛药物的疗效欠佳, 而使用 名为辅助镇痛药的一类多样化药物时的效果更好 例如糖尿病烧灼性双手和手套样外周神经病变, 或者见于某些化学治疗药剂的神经病变性疼痛, 使用诸如抗惊厥药加巴喷丁的药物或某一阿片类抗抑郁药效果可能会更好, 或者可以合用, 效果最佳 所以了解患者疼痛的特点 定性描述可以帮助我们查明造成特定症状的病因 我们还应检查相关困扰 患者可能不受症状的干扰, 这时处理这些症状就没有那么重要, 最好 12

13 Pain Assessment: Synthesis of Diagnosis Target treatment: Primary therapy Analgesic therapy Other needed areas of intervention Optimize overall function and Quality of Life detective puzzle of, you know, what is causing that particular symptom. We also want to look at associated distress. People may have symptoms but, if they don t bother them, it may not be as important to address those symptoms and perhaps better to prioritize the treatment of other symptoms. Often, patient and stranded --- family distress about a symptom vary and probably the prototype for this one is anorexia. Patients with advanced cancer are often without appetite. And many of them are not disturbed by it, although others are, and it s typically the family member that is much more distressed than the patient. And there often education is an important role in the treatment plan. And so as not to reinvent the wheel or put people through side effects unnecessarily, it s also important to know what s --- what the patient has tried in the past, what has helped them, what hasn t worked so that you can further revine --- refine your --- your treatment plan. Okay. So now you ve amassed all this information and what --- what you re going to do is come up with your symptom diagnosis both in terms of etiology and pathophysiology and what works best, in general, is to use primary therapy. So, treat the underlying cause whenever possible, combine that with analgesic therapy, if it s in the instance of pain or whatever the symptoms specific therapy it --- it is. Target other needed areas of intervention, so that you can optimally treat that symptom, optimize function, and optimize quality of life. So again using pain as an example, if somebody has back pain from spinal cord compression due to malignant lymphoma, often treating the lymphoma with chemotherapy is an integral part of treating that pain syndrome. Just as if with abdominal pain from bowel obstruction can be attenuated by decompression, be it with an NG tube or surgically. Now often primary therapy takes times to take effect. Or there may not be an 优先治疗其他症状 患者与家人的症状困扰通常有所不同, 让我们以厌食为例 晚期癌症患者常常都没有食欲 很多患者本人对此都不在意, 而是家人受到的困扰常常要超过患者 这时, 教育在治疗计划中的作 用就举足轻重 所以为了不必另辟蹊径或者让患者产生不必要的副作用, 还必须要了解患者之前尝试过哪些治疗, 哪些治疗有效果, 哪些无效 这样你就能优化治疗计划 好的 现在已经收集了所有信息 接下来要做出症状的病因学和病理学诊断, 而且一般来说最有效的方法是使用主要疗法 尽可能治疗内在病因 如果有疼痛 的话, 合并使用镇痛治疗, 或者合并使用任何症状特异性疗法 以其他需要干预的部位作为靶的, 这样就能最有效地治疗症状, 获得最佳的机能和生活质量 再以疼痛为例 如果某人因为恶性淋巴瘤造成的脊髓压迫而发生背痛, 则给予淋巴瘤化疗是治疗疼痛综合 征不可或缺的组成部分 就像肠梗阻造成的腹痛可通 过插入鼻胃管或手术解除肠道压力而得到缓解 而主要疗法通常需要时间才能起效 或者可能没有有效的 主要疗法 这就是为什么我们通常需要合并可用的主 13

14 Modalities of Symptom Control Disease-specific Pharmacologic Physiatric Cognitive-behavioral Spiritual Integrative medicine effective means of primary therapy. And that s why we typically need to control --- combine primary therapy, when available, with symptom-directed therapy. So, if we think this time, instead of pain, let s look at dyspnea, opioids actually palliate dyspnea. So it may be appropriate when treating dyspnea due to a pleural effusion or an endobronchial metastasis, while waiting for thoracentesis or endobronchial tumor ablation, to palliate with morphine, for example. And then again all the other needed areas of intervention in order to optimize function and quality of life. Now, we have numerous modalities of symptom control available to us. We ve mentioned disease-specific modalities. There are pharmaco ---- pharmacotherapy is a key part for just about every symptom. Physiatric means of symptom relief, so think about your physical medicine and rehabilitation colleagues. Often pain can be attenuated with physical therapy and with learning proper positions or weightbearing techniques. Use of orthoses and prostheses can help manage pain. For people with phantom limb pain, a prosthesis can be helpful as part of the treatment of pain. For people who have movement-related back pain due to osteoporotic or tumor-related vertebral body collapse, they tend to be pretty comfortable at rest, but develop severe pain with movement and, providing some support to the spine with --- with an orthotic, so that the vertebrae does not move as much when they get from stand --- sitting to standing can be an important part of their treatment regimen. Similarly, for fatigue from advanced cancer or dyspnea from advanced cancer associated with deconditioning, physical therapy can be an important part of muscle strengthening and symptom relief. Cognitive behavioral means of symptom control are very important additions to the primary treatment plan. Most symptoms will require some sort of pharmacotherapy. But because our 要疗法和针对症状的疗法 这次让我们以呼吸困难为例 阿片类药物实际上可以缓解呼吸困难 所以在治疗胸膜积液或支气管内转移引起的呼吸困难时, 在等待胸穿抽液或支气管内肿瘤消融术时, 比如可能有必 要使用吗啡缓解呼吸困难 另外还有所有其他需要干预的部位, 以便获得最佳的机能和生活质量 我们可以使用数种方式来控制症状 我们已经提及了疾病特定方式 几乎对于每种症状来说, 药物疗法都是关键的治疗组成部分 用于缓解症状的物理治疗 因此考虑使用身体医学和复健科同行的服务 通常物理治疗和掌握正确体姿或承重技巧就可以缓解疼痛 使用支具和假体可以帮助管理疼痛 对于治疗幻肢疼痛的患者, 采用假体可能会有帮助 对于骨质疏松或肿瘤相关椎体塌陷引起动作相关背痛的患者而言, 在休息时通常不会感觉疼痛, 但会在移动时产生剧痛 在其疗法中务必使用支具向他们的脊柱提供一定的支持, 这样在从坐姿转到站姿时, 椎体不会过度移动 同样, 就晚期癌症引起的疲乏或与体能失调有关的呼吸困难而言, 物理治疗可以是增强肌肉力量和缓解症状的重要组成部分 除了主要治疗计划, 认知行为症 状控制方法也非常重要 大多数症状需要使用某种形式的药物治疗 但是因为我们的患者通常处于无能为 14

15 patients are typically in a situation in which they have little control over things and may be overwhelmed, providing them with cognitive coping statements, for example, I ve survived this pain before and I ll survive it again is an important way of helping them get control of the situation rather than letting anxiety exacerbate whatever the symptom is until the drug therapy kicks in. Cognitive coping statements, reframing, particularly for people who catastrophize, relaxation therapy, massage, there are many different cognitive behavioral techniques, which could serve as the basis for an entire talk itself. Spiritual intervention, not just for people who are in existential distress, where our chaplaincy colleagues can play a crucial role, but even people who are coping well and use their spiritual resources as means of support. This can be fortified. And then techniques of integrative medicine, which can pertain --- which are integrated, --- with, as implied by the name, integrated with --- with mainstream medical techniques looking at the role of diet, massage, biofeedback and other types of therapy on symptom management. So, there is a whole big list to choose from and while disease-specific modalities whenever available and pharmacologic therapies are often --- often --- an underpinning, these other modalities are often very important parts that can contribute to op optimizing a person s symptom experience. 力的状况, 而且可能感到手足无措, 向他们提供认知应对陈述是帮助他们掌控情况的重要方式, 在药物疗 法起效之前不让症状因为焦虑而恶化 认知应对陈述可以是 我以前战胜过这样的疼痛 这一次我会再次战胜它 认知应对陈述 ; 重构, 特别是对悲观的患者来说 ; 放松治疗 ; 按摩 ; 有许多不同的认知行为技巧可以作为整个谈话的基础 心灵上的干预, 不仅适用于有存在困扰的患者, 而且还适用于应对良好的患者, 针对这些患者, 我们的牧师同事可以发挥至关重要的作用, 通过信仰方面的资源作为支持方式 可以加强 接下来是综合医学 名副其实, 综合医学是整合了主流医学技巧, 并考虑饮食 按摩 生物反馈疗法和其他类型的症状管理疗法 所以可供选择的种类有很多 尽管可以使用的疾病特定治疗方式和药物疗法通常是治疗基础, 但其他治疗方式常常也是非常重要的组成部分, 可以促进优化患者的症状体验 15

16 An Overview of Palliative Care: Summary Palliative care is an approach used to improve quality of life for patients and their families that can be provided with or without disease modifying therapy such as chemotherapy Delivery of palliative care employs an interdisciplinary approach A systematic approach to symptom assessment and management is key to optimal outcomes Okay. So, in summary, I hope I have demonstrated to you that palliative care is an approach, which can be used to improve the quality of life for patients and their family members and that this can take place whether or not they re receiving curative therapy, disease-modifying therapy, or simply supportive therapy. Palliative care relies on an interdisciplinary approach. And that the underpinning of it all is a symptomatic approach to symptom assessment and management in order to achieve optimal outcomes. Well, thank you for spending this time with me today. I hope it s been of some benefit to you. And so that we can better provide you with learning opportunities, we would really appreciate your feedback, so that we can work on making this even better. 好的 总而言之, 我希望向大家说明了姑息性护理是一种方法, 可用来提高患者及其家人的生活质量 无论是否在接受治愈性疗法 疾病调整疗法 或只是在接受支持疗法, 都可以使用姑息性护理 姑息性护理依靠的是跨学科方法 所有这些的基础是系统性的症状评估与管理, 以便取得最佳的转归 谢谢各位今天 花时间参加我的讲座 我希望本次讲座对大家有所帮助 为了向各位提供更好的学习机会, 我们非常希望能获得大家的反馈意见, 以便我们进一步改善我们的讲座 16