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AN NCCS BI-MONTHLY PUBLICATION March / April 2011 ...HELPING READERS TO ACHIEVE GOOD HEALTH Salubris is a Latin word which means healthy, in good condition (body) and wholesome. Issue No. 15 • MICA (P) 061/10/2010 WHY DO PEOPLE DONATE?

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Salubris is a bi-monthly publication by the National Cancer Centre Singapore (NCCS).

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Page 1: Salubris - Mar / Apr 2011

AN NCCS BI-MONTHLY PUBLICATION March / April 2011

...HELPING READERS TO ACHIEVE GOOD HEALTHSalubris is a Latin word which means healthy, in good condition (body) and wholesome.

Issue No. 15 • MICA (P) 061/10/2010

WHY DO PEOPLE

DONATE?

Page 2: Salubris - Mar / Apr 2011

SALUBRISMarch / April 2011

SALUBRISMarch / April 2011

PAGE A3PAGE A2

In Other Words In Other WordsTARGETED DEEP SEQUENCING FAST-TRACKS RESEARCH IN GASTRIC CANCER

Assoc Prof Patrick Tan shares with VERONICA LEE how a new technology has led to discoveries in gastric cancer in a short span of time and may accelerate the quest for customised treatment.

Technology may well be the platform for mankind’s breakthrough into finding a cure for cancer. Indeed thus

far, technology has already been showing its contribution by quickening the pace for scientific breakthroughs. Conventionally it was only possible to screen one or a few genes at a time in order to examine genetic changes in gastric cancers. Today, novel technologies such as ‘Targeted Deep Sequencing’ enable the screening of numerous genes simultaneously. This had led to the discovery of genes that have bearing on gastric cancer in a shorter time frame.

For the past two years, Assoc Prof Tan has worked together with Prof Teh Bin Tean to establish a targeted deep sequencing facility at NCCS, supported by a grant from the Lee Foundation.In a first application of this technology, Assoc Prof Tan tapped on this new-found technology to screen over 500 kinase genes in a panel of gastric cancers.

Within a short time frame of two weeks, Assoc Prof Tan and his team were able to identify 300 novel kinase single nucleotide variants (SNVs) and singled out genes that were frequently altered in gastric cancers. The conventional method would have taken the team about a year to complete the same task.

It is the first time that targeted deep sequencing has been used in any study of gastric cancers. Developed two years ago by Illumina, a company in USA that creates cutting-edge solutions for scientific research, the technology is suitable for rapidly profiling specific genome regions in multiple individuals and also can provide insights into other levels of variation in addition to SNVs such as structural and copy number variants.

A paper on these discoveries was submitted and published in the journal Cancer Research under the title ‘Genetic and Structural Variation in the Gastric Cancer Kinome Revealed through Targeted Deep Sequencing’ in its Jan 2011 issue.

Now that comprehensive data on molecular variants and how they contribute to disease susceptibility, tumour growth and drug response have been generated, Assoc Prof Tan feels that the findings will significantly improved clinical outcomes for patients. “Our research is focused on the goal of providing clinicians the best information to treat their gastric cancer patients. The information that we hope to elucidate was whether patients will likely have an aggressive or indolent disease, what therapies they will respond to.”

Just barely getting his research published, Assoc Prof Tan is already planning his next steps. “We envisage an age where every single cancer patient will have their individual genomes analysed using these types of deep sequencing approaches and based on the unique repertoire of mutations uncovered in that patient, we can then begin to devise customised treatments and diagnostics from one-size-fits-all to customisation,” He will be working alongside Prof Teh Bin Tean, Director and Principal Investigator, NCCS-VARI Translational Cancer Research Laboratory, and A/Prof Steve Rozen of the Duke-NUS Graduate Medical School to study all genes in the gastric cancer genome.

However, it will be a long time from now before the dawn of a cancer cure. “Even today, we have not eradicated infectious diseases. More research needs to be done to understand the root causes of cancer and why some individuals develop the condition while others do not. But it is apparent that the gap between discovery and clinical impact is narrowing. That is a hugely exciting time for translational research,” he said.

“The results demonstrate that targeted deep sequencing can fast-track our research and this approach may improve diagnosis and treatment efficacy for cancer as well as congenital disorders,” he said.

On how the genes were selected, Assoc Prof Tan said it all boils down to cost effectiveness. “It is still very expensive to sequence a complete human genome and it is for this reason that we chose to focus on a high-priority subset of genes.”

He sees further technology advancement benefiting his field of research even further. “We are currently witnessing a very exciting surge of technology development that is continually pushing down the cost of genome sequencing. I would not be surprised if we will be able to sequence a complete human genome for S$2,000 in the next two years.”

Assoc Prof Tan decided to focus on gastric cancer research as it is among the top cancers in Asia. Though it was the second leading cause of cancer deaths worldwide, more work has been done on ‘western’ cancers such as prostate and melanoma. Unperturbed, he pushed ahead. “Singapore has access to clinical resources and technological platforms. It was a good place to make a significant contribution to the field of gastric cancer.”

Indeed, never settling for less has been his adage. At 16, while doing his O levels, he read about the structures of various organs though this was beyond his exam requirements. It spurred his interest in scientific research which saw him researching at the Institute of Molecular and Cell Biology, Harvard and Stanford universities. “My desire to engage in translational research reflects my synthesis of my various research experiences at these places,” he added.

Assoc Prof Tan decided to focus on gastric cancer research as it is among the top cancers in Asia. Though it was the second leading cause of cancer deaths worldwide, more work has been done on ‘western’ cancers such as prostate and melanoma.

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SALUBRISMarch / April 2011

SALUBRISMarch / April 2011

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Looking ForwardIn Focus HOW INFORMED IS YOUR CONSENT?On Conception, Constraints, and Components of the Informed Consent

RADIATION SKIN CANCER RADIATION CURE!

Before I get a letter from a dermatologist or three, allow me to clarify. The usage of radiation for treating skin lesions has been dated as far back as 1896. Barely 12 months after Roentgen discovered X-Rays, a certain

Mr Leopold Freund used it on a 5-year-old girl with a 36cm “hairy naevus”. The lesion disappeared of course and she lived to a ripe old age of 75 before she died, free of any side effects. Radium was discovered a couple of years later, and quite accidentally found to produce the famous “radium burns” after Francis Becquerel left it in his jacket pocket accidentally. In 1903, Goldberg and London was the first to document the use of radium irradiation for two patients with histologically proven basal cell carcinoma of the face.

Since then, thankfully, scientists have discovered the side effects of excessive radiation as well. Ingested radium, once thought to be a health elixir, was found to be absorbed in bones causing aplastic anaemia, fractures and “radium jaw” (osteonecrosis). “Teletherapy”, also known as external beam radiotherapy, has since gained favour and is still the most widely used form of radiation today for the treatment of cancer.

Deep X-Ray Therapy (DXT) is classical name that everyone uses, with the exception of the radiation oncologists. But it is exactly that which is so effective in treatment of superficial lesions such as skin cancer. Before the days of the linear accelerator, X-Rays of varying energy were used in the treatment of cancer. Thinner, more superficial skin cancers were treated with low energy X-Rays and thicker or deeper lesions treated with higher energy ones.

What was practised 40-50 years ago using DXT for the treatment of skin cancer is still effective today. Essentially, the radiation oncologist marks out the skin cancer with a small margin and then creates a mould or mask depending on the anatomical location of the lesion. With this mould or mask, he is able to shape the beam so that it treats the cancer homogenously whilst sparing as much surrounding normal tissue as possible.

CONCEPTION

Obtaining consent has been a doctor’s ethical obligation for centuries. One is remiss to mention doctors, obligations, and centuries-old ethics without paying tribute to the “father of (Western) medicine”, Hippocrates. Surpassing time and terrain, his ethically legendary Hippocratic oath and primum non nocere – first do no harm – touched a wide-reaching audience. These teachings came with a caveat, however: to do no harm, doctors would not portray patients’ illnesses in an entirely truthful picture. The truth? “You can’t handle the truth.” *

For centuries, such paternalistic air of “trust me, I’m a doctor” permeated medical circles. This practice, even if well-meaning, overlooked individuals’ right to deliberate on their own well-being. Gradually, to keep doctors straight, the law stepped in. Keep in mind that consent for medical research is beyond the scope of this discussion. As a legal document, there is evidence of surgical consent dating back to the late 1700s. This was not “informed” consent. Although patients were “informed” of whatever procedure was to be performed, decisions were made for them, not by them. On the positive side, this at least removed the oddness of cutting someone open without having exchanged a few words in advance.

In the twentieth century, a different pattern unraveled. In 1914, a woman underwent an operation and a tumor discovered intraoperatively was removed. It turns out she had agreed to an examination under anaesthesia for diagnosis only. To make matters worse, she suffered severe postoperative complications. Legal action ensued, and the opinion rendered by US Justice Cardozo made consent history:

“Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault, … except in cases of emergency, where the patient is unconscious, and where it is necessary to operate before consent can be obtained.”

It only took another 43 years before “informed consent” was christened as such. A man brought forth legal action because he became paralysed after a new, invasive procedure. Sadly, he had not been told of paralysis as a potential complication. This was no longer about lack of consent per se, but an informed one. The following ruling featured the term informed consent:

“A physician violates his duty … if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient…”

“…in discussing the element of risk a certain amount of discretion must be employed consistent with the full disclosure of facts necessary to an informed consent.”

What comprised a proper informed consent had loopholes. In defining “full disclosure”, for example, some “discretion” was allowed. Regardless, this ruling brought forth the reasonable person standard of disclosure. This supposes that any reasonable person needs a certain amount of information to make a meaningful decision. Patients were now privy to that information, granting them the privilege of participating in their own care. At last!

Not surprisingly, doctor-patient communication lapses persisted. In 1960, a woman suffering from radiation injury for breast cancer treatment sought legal action for not having been informed of possible complications. The ruling stated that the average practitioner would have indeed discussed potential ill-effects of such therapy. The professional standard of disclosure thus came about, mandating disclosure of information that any practicing community physician deemed relevant.

The professional standard was later rejected by another court, as it relied heavily on the physician volunteering the information. So began a yoyo pattern of consent-related conflicts. None was beyond reproach, and no gold standard materialised. Centuries on, the paternalistic “doctor knows best” has now mostly, but not uniformly, given way to a shared decision-making process of “let’s openly discuss and arrive at a decision together”.

* Quote not by Hippocrates, but from 1992 movie A Few Good Men

Continued on page B2.

Here’s a (not so) little known fact: Radiation can cure skin cancer.

Sure, everyone knows that excessive ultraviolet rays may predispose you to having skin cancer. And yes, the common skin cancers Basal cell carcinoma and Squamous cell carcinoma can be easily treated with surgical excision. But did you know that radiotherapy could just as well be used to treat these skin cancers easily?

Our department still continues to see skin cancers. By and large, these are the patients that have refused to have surgery or have been deemed “irresectable”. Still, we see them, reassure them and tell them that there is hope and radiation can be used to cure them. “But doesn’t radiation cause cancer in the first place?” Here we go again…

By Dr Richard Yeo Consultant Department of Radiation Oncology NCCS

Treatment of skin cancer varies from as quickly as one week to as long as six weeks. This varies in accordance to the radiation oncologist's assessment of numerous factors including the size, anatomical location, age of patient and accessibility to treatment. The result from treatment of skin cancer using radiation is excellent and many patients have achieved a complete cure with little or no morbidity and excellent cosmesis.

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SALUBRISMarch / April 2011

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PAGE B3PAGE B2

Looking Forward

Continued from page B1.

Tender Care

Continued on page B4.

HOW INFORMED IS YOUR CONSENT?On Conception, Constraints, and Components of the Informed Consent

CONSTRAINTSDoctors are bound by moral and legal duty not to simply obtain consent, but one that is appropriately informed. Many factors undermine the integrity of this process. Examples include lack of physician and/or patient understanding, unreliability of consent forms, coercing, manipulating, or persuading patients, and shortchanging any component discussed next.

COMPONENTSObtaining consent is not about securing a signature. For anyone as a patient, the fundamental tenets of informed consent are to uphold your rights and protect you from harm. With high-stakes decisions on the line, such responsibility is best not delegated to an anguished house-officer who may consider it a task amongst a million others, perhaps lacking time or even knowledge to cover the following essential elements:

1 DISCUSSION AND DISCLOSURE: Consent without an adequate exchange of

information is simply not informed consent. As discussed above, a perfect solution to the adequacy of information has not materialised.

In the clinical setting, at a minimum, the physician must discuss the following aspects of treatment:

• diagnosis;• prognosis;• nature and purpose of proposed

intervention;• alternatives (if any); and, • risks and benefits of: proposed treatment; alternative options; and, foregoing of treatment altogether.

Conveying medical facts during stressful times is fraught with potential pitfalls. Some doctors paint only a partial picture, worried they may scare off patients with information overload. This notion, known as “therapeutic privilege”, supports medical paternalism, contradicts respect for patient autonomy, and is no longer justified. The converse is also unacceptable; to unjustifiably paint a grim picture in case an “I told you so” complication ensues. An open discussion can only strengthen the doctor-patient relationship, making it all the more therapeutic. Win-Win.

2 COMPREHENSION AND COMPETENCE: Taxing

medical lingo overwhelms even the most seasoned of physicians, let alone the rest of us. To comprehend information, we need basic knowledge with which to weigh our choices and awareness of our personal values. For example, perceiving our uncertainty as grounds for losing face or wasting doctors’ time, or masking our willingness to engage in decision-making hinders adequate exchange of information. Not so win-win.

Comprehension assumes the requisite ability to process the information presented. In absence of competence, a family member or legal guardian steps in. Ideally, this is someone who knows the patient well enough to determine what the latter would have thought best for him/herself. If unable to do so, the less optimal alternative is for the family member to represent what he/she thinks (as opposed to what the patient would think) is in the patient’s best interest and act accordingly.

MAKING DECISIONS ABOUT CANCER TREATMENT

I t helps reduce the inevitable anxiety by taking control and being proactive about gaining insight into your illness. Try to obtain as much basic information as possible about your cancer diagnosis. You will be best served if you seek

help with an informed, yet open mind. Discussions about treatment should not be unidirectional. Gone are the days when the doctor would dictate what is to be done without any input from the patient. Instead, make your preferences known to your doctor (or team of doctors/nurses), allow the doctor to objectively discuss all available information with you, and reach a decision together.

It is not always straightforward to find someone with experience and expertise to whom you can entrust your care. For any number of reasons, you may feel the need for a second opinion from another specialist. Be it for confirmation of your condition as it is never easy to receive such news, or to assure the best treatment plan for yourself, it may be valuable to seek advice from a second source. This is to ensure that all of your questions are answered adequately, assuring you of the most appropriate medical care and allowing you to make an informed decision. Keep in mind that it is generally unproductive to seek a second opinion with the goal of having the doctor say something different than the first one or to “buy time”.

Your role as a patient is to be well informed about your condition and treatment options available. By gathering information and asking questions, you will improve your chances of making good decisions about your treatment. You should be comfortable with your choice of physicians and treatment options.

Cancer can be a confusing and frightening diagnosis, and it is hard to make decisions about possible treatment options that seem to be continually expanding. It can be quite challenging to decide on the right treatment, especially when faced by a fast pace of events and a huge volume of information coming at you.

QUESTIONS YOU CAN ASK YOUR DOCTOR

Before you see the doctor, it may be helpful to write down the questions you wish to ask. You are encouraged to have a family member or friend to go with you to take part in the discussion, take notes or support you by listening or simply being present. Following are types of questions you may want to ask your doctor.

ABOUT YOUR ILLNESS

❏ What kind of cancer do I have?

❏ Where is the cancer?

❏ Has it spread?

❏ Can my cancer be treated?

❏ What is the chance that my cancer can be cured?

ABOUT THE TESTS

❏ What are these tests for?

❏ How much will these tests cost?

3 REFLECTION AND READINESS: A cancer patient grapples with

a colossal number of challenges, especially if newly diagnosed. Absorbing medical facts and figures is simply overwhelming. Faced with major decisions, why not consider a follow-up visit, if feasible? This allows time to seek support from family/friends, reflect on facts, generate more questions, and ultimately verify understanding and clarify misgivings.

4 PERMISSION OR REFUSAL: Only with the above components

completed, one can decide to either grant or deny consent. Either way, one should remember that unrealistic expectations in all walks of life have an uncanny way of ending in disappointment. Definitely lose-lose. There is no turning back the clock, so why not take ownership of our decisions, fully measuring them first? After all, informed consent fundamentally exists to support our rights and to protect us from harm.

REFERENCES:

Klove CA, DiBoise SJ, Pang B, Yarbrough WC. Informed consent: Ethical and legal aspects. Thorac Surg Clin. 2005; 15: 213-219.

Jones JW, McCullough LB, Richman BW. A comprehensive primer of surgical informed consent. Surg Clin N Am. 2007; 87: 903-918.

Jefford M, Moore R. Improvement of informed consent and the quality of consent documents. Lancet Oncol. 2008; 9: 485-93.

By Dr Shiva Sarraf-Yazdi Associate Consultant Department of Surgical Oncology NCCS

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Tender Care

Continued from page B3.

往前看您对知情同意是否充分知情?关于知情同意的概念、局限和组成部分

20世纪出现了另一种不同的模式。1914年,医生为一名妇女进行手术的过程中发

现肿瘤,并随即将肿瘤切除。然而,这名妇女当初只同意在麻醉的情况下接受检验

以作诊断。更糟的是,她在手术后出现严重的并发症,于是诉诸法律。当时美国法官

卡多佐提出的观点勾画出征求病人同意的基本精神,成为历史依据:

“每一个心智健全的成年人都有权利决定如何处理自己的身

体;外科医生若未经病人同意便为他动手术,即是犯下了人

身伤害,…除非是紧急情况,病人处于无意识状态,并且有必

要在取得病人同意之前进行手术。”

“知情同意”(informed consent) 一词于43年后开始使用。一名男子因为在接受一

种侵入式的新治疗方法后瘫痪而提出法律诉讼。遗憾的是,他事先并不知道接受

该治疗会有导致瘫痪的风险。这已经同未得到病人同意无关,而是病人是否在知情

的情况下给予同意。以下判词提到了“知情同意”的概念:

“医生如果隐瞒任何病人所需作出明智同意的必要实情,便是

违背了自己的义务…”

“…讨论风险因素时得有一定的灵活性,但须符合为病人提供其作知情决定所需的完整信息的原则。”

“正当的知情同意”实际上存在着漏洞。例如在“充分披露”的定义中,某种程度的“

酌情处理”是被允许的。无论如何,这项裁决带出了“合理之人的披露标准”。这里

假设任何一个合理的人都需要得到一定的信息量,才能作出有意义的决定。如今

病患总算可以在得到这些信息后,有权参与自己护理的决策。

然而,医生与病人之间的沟通不

畅依旧持续存在,这并不足为

奇。1960年,一名妇女在接受乳癌

治疗时受到辐射伤害后采取法律

行动,声称自己并没有被告知有关

治疗的可能并发症。法官的判词指

出,一般医护人员应该已同病人讨

论了有关治疗的可能副作用。于是

由此产生“披露的专业标准”,强

制执业社区医生披露一切他认为

是相关的信息。

该专业标准后来被另一个

法院驳回,因为它过于依赖

医生主动提供信息。后来又

出现了一连串和“病人同意”

相关的纠纷。这些虽然都无

可厚非,但也没有由此产生

任何黄金标准。几个世纪下

来,那种“医生最懂”的家

长式作风,如今已大致上被

“采取开放式讨论以达成共识”

的“共同决策过程”取代。

*此句非出自希波克拉底,而是引用自1992年

电影“义海雄风”

概念

取得病患同意是一名医生亘古如斯的道德义务。但在谈到医生、义务及古老的医德时,人们却经常忘了向

被称为“西方医学之父”的希波克拉底 (Hippocrates) 致敬。他写下的传奇性医学道德誓言——“首先,

不造成伤害”,超越了时空和地域,对世人产生深远的影响。然而,这里隐含了一个前提:为了不造成伤

害,医生不会完全坦白告知病人有关其病情的所有实情。实情?“你无法承受实情”*。

数百年来,这种“相信我,我是医生”的家长式观念长期存在于医学界。这种风气,尽管是善意的,却忽视了病人为自己健康斟酌和

作决定的权利。渐渐地,为确保医生遵循职业操守,相关法律规则才开始出现。值得一提的是,有关医药研究的同意书不在本文的讨

论范围内。作为一份法律文件,关于外科手术同意的依据可以追溯到1700年末期。但这不是“知情”的同意。病人虽“得知”自己将

接受什么手术程序,但这是别人替他作的决定,而非他本人为自己作的决定。然而从正面去想,至少当时的医生并不是同病人缺乏沟

通,甚至在事先毫无交谈的情况下,便将他给剖开。

Regardless of all the preparation, at times, you may feel that others do not understand what you are experiencing. And you’re right, most of the time. It may help to talk to those who have been through similar challenges. Other cancer patients may share their insight into what to expect during treatment. You may consider speaking to someone you know with a similar condition or connect with support groups. To get information on the latter, you may ask your doctor or call the cancer helpline at your treating hospital. Alternatively, you can contact the Cancer Helpline at the National Cancer Centre Singapore, at telephone number 6225 5655 or email [email protected] for information on support groups.

Knowing as much as possible about your illness and its treatments gives you control in making decisions for yourself. When you understand what is happening, you are less likely to be confused, anxious or even mislead by old wives’ tales.

ABOUT TREATMENT

❏ What is the treatment available for my type of cancer?

❏ Are there any other forms of treatment available?

❏ Is this the best treatment available for my diagnosis?

❏ How long will the treatment be?

❏ Do I need to be hospitalised during treatment?

❏ How does the treatment work and how is it given?

❏ Will I be cured after the treatment?

❏ What can I do to prevent my cancer from recurring/spreading?

❏ If the disease has spread, what are my options?

ABOUT THE SIDE EFFECTS OF TREATMENT

❏ What are the possible side effects of this treatment?

❏ Can these side effects be prevented or controlled?

❏ Are the side effects permanent?

❏ Can I go back to work while I am on treatment?

❏ Can I take any herbal medicine or supplements during my treatment?

❏ How will the treatment affect my activities of daily living?

ABOUT THE RISKS OF TREATMENT

❏ What are the risks associated with the recommended treatment? (e.g. complications, quality of life, mortality)

❏ What are the pros and cons associated with this treatment?

❏ What will happen if I choose to wait or not receive any treatment?

If surgery is required, ask your surgeon for a simplified explanation of the type of operation, technique used and reasons it should be performed. Here are some questions to consider.

❏ What exactly is the purpose of the procedure? For example, is it to relieve pain, diagnose a condition, remove a tumour or correct a deformity etc?

❏ What are the expected or possible benefits of doing the procedure? And potential complications?

❏ What are the nonsurgical or medical treatments available?

❏ Must the procedure be performed immediately?

❏ If the operation is not done at this time, can it be done later?

❏ What are the consequences if the procedure is postponed? What if it is not done at all?

❏ Is a general anaesthesia necessary? What are the risks?

❏ How long does a similar procedure typically take?

❏ How long is the recovery period?

❏ Will pain control medications be necessary?

MAKING DECISIONS ABOUT CANCER TREATMENT

It may help to talk to those who

have been through similar challenges.

Other cancer patients may share their insight into what to expect during treatment. You may consider speaking

to someone you know with a similar condition or connect

with support groups.

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PAGE B7PAGE B6

往前看 温柔呵护

1 讨论和披露:在未有充分的信息

交流下取得的同意,不能算是知

情同意。如以上所言,至今仍未找出

能确保信息充分性的完美解决方案。

在临床环境里,医生至少得讨论下列

关于治疗的几个方面:

• 诊断

• 对病情的预测

• 所 提议的治疗方法的性质和作用

• 其他方案(如有);以及

• 关于所提议的治疗方法、其他替

代选择和完全放弃治疗等选择的

利弊

医生在这个充满压力的时刻传达

医疗资料必然遇到许多困难。一些

医生选择陈述部分事实,担心若

信息太多会让病人产生恐惧。这个

称为“治疗特权”的概念符合医疗

家长主义,却与尊重病人自主权相

抵触,因此不再被接受。相反的做

法也同样不被接受;即不合理地描

绘一幅灰暗的情景,以免发生“我

早告诉过你”的纠纷。只有开放地

讨论才能强化医生与病人之间的关

系,从而达到更好的治疗效果。这

才是双赢。

局限医生必须履行的道德和法律义务,是确保病人在得到足够的信息下作出决定。这个程序的完整性有可能因为许多因素而

遭削弱。例如,医生与病人之间缺乏了解、同意书不可靠、病人受威迫、操纵或被说服,或是在下列要讨论的任何一个组

成部分中有所欺骗。

组成部分取得病人同意并不在于得到他们的签名。对任何一名病人来说,知情同意的基本原则是:1)维护您的权益 2)保护您免受

伤害。这是个高风险的决定,因此这个责任应避免交托给庸碌的见习医生。他们可能会把此责任当成是他们必须完成的

众多繁琐工作的其中一个,又或者,他们可能缺乏时间或足够知识,以涵盖下列的基本要素:

您对知情同意是否充分知情?关于知情同意的概念、局限和组成部分

如何决定癌症的治疗方式

2 理解与能力:即使是经验丰富

的医生也受不了晦涩的医疗术

语,更何况是普通的病人。要理解信

息,我们需要:1)能帮助我们权衡选

择的基本知识;2)对个人的价值观

和信念有所认识。例如,因自己犹豫

不决而认为是丢脸或 在浪费医生的

时间,或掩饰我们参与决定过程的

意愿,导致信息无法充分交流。这

不能算是双赢。

理解的前提是有能力处理所得到的

信息。如果病人缺乏此能力,便由家

人或合法监护人代劳。这个理想人选

应该对病人有足够了解,知道病人会

为自己作出怎样的决定。否则就得由

家人代表病人判断最符合病人的利

益(而不是病人本身怎么想),继而

采取相应行动。

3 反思与准备:癌症病人 – 尤其

是一名刚被诊断患癌者 – 必须

努力应付许多巨大挑战。铺天盖地的

医疗信息和数据确实让人一时难以

承受。面对如此重大的决定,如果可

行,为何不考虑安排病人下次复诊?

这将让他有更多时间向家人/朋友求

助、反思、提出更多问题,最终确认

自己理解以及厘清任何疑虑。

4 准许或拒绝:只有在完成上述

组成部分后,病人才能决定

是否准许或拒绝给予同意。不论

哪种情况,人们都应该切记,人生

中若抱有不切实际的期望,事情

总会不可思议地以失望告终。这

肯定是双输的局面。时间无法逆

转,既然如此,为何不事先充分衡

量所有选项,并为自己的决定负

责?毕竟,知情同意存在的根本意

义在于维护我们的权利,同时保护

我们免受伤害。

参考文献:

Klove CA, DiBoise SJ, Pang B, Yarbrough WC 《知情同意:道德与法律层面》Thorac Surg Clin. 2005; 15: 213-219.

Jones JW, McCullough LB, Richman BW. 《关于手术知情同意的完整入门》Surg Clin N Am. 2007; 87: 903-918.

Jefford M, Moore R. 《知情同意的改进及同意文件的质量》Lancet Oncol. 2008; 9: 485-93.

任何人在刚被诊断患上癌症时,都可能感到害怕和难以接受;要在各种可行的、似乎不断在更新的治疗方案之中作出决定,并非易事。在面对事态快速变化及大量信息持续涌现的情况下,如何决定正确的治疗方法,对您可能是个艰巨的挑战。

积极面对并主动研读有关自己病情的相

关资料能有助于缓解心中的焦虑。您应

该尽可能取得更多有关您癌症病况的基

本信息,若能抱着开放的态度寻求援助,

对您会更有益处。治疗方法的讨论不应

该是单向的。今时不同往日,医生不再是

绝对的主宰,病人也不再处于被动的状

态。相反的,您应该把自己的想法告知

主治医生(或医疗小组/护士),允许医生

客观地同您讨论和分享各种的信息,然

后一起达成共识。

要找到具有经验和专业知识,同时又是

自己能够信任的医生,并不简单。您可能

觉得有必要向其他专家征求第二意见。

无论是想确定难以接受的病情,或是为

了确保自己将得到最佳的治疗方案,您

或许会发现,寻求第二意见将对您有所

帮助。这将确保您所有的疑问都获得充

分解答,确定自己得到最妥善的医疗照

顾,并且协助您在知情的情况下作决定。

但请切记,如果您寻求第二意见的目的

是希望第二名医生会得出和之前不一样

的结论,或是想“拖延时间”,那将是徒

然之举。

作为病人,您的责任是充分了解自己的

病情以及现有可行的治疗方式。通过收

集资料及提问,您便能更好地决定适合

自己的治疗选择。您也应该对自己所选

择的医生和治疗方式感到自在。

向医生询问的问题

您在看医生之前,可先列出一些自

己关心的问题。最好能有家人或朋

友相伴,共同参与讨论的过程、做

笔记,或是陪在您身边给予精神上

的支持。以下是一些您可以向医生

询问的问题。

有关癌症病情的问题

❏ 我患上什么癌症?

❏ 癌症在哪个部位?

❏ 癌症是否已经扩散?

❏ 我的 癌症可否医治?

❏ 我的癌症治愈率有多高?

有关检测的问题

❏ 这些检测有什么作用?

❏ 这些检测的费用是多少?

有关治疗的问题

❏ 我的癌症有哪些治疗方法?

❏ 有没有其他治疗方法可以选择?

❏ 这是否是针对我的病情的最佳

治疗方法?

❏ 整个疗程需要多久?

❏ 我在接受治疗时需要住院吗?

❏ 这个疗程如何进行,如何发挥作用?

❏ 我在接受治疗后能否治愈?

❏ 我该如何防止癌症复发/扩散?

❏ 如果病症已经扩散,我有什么选择?

有关副作用的问题

❏ 这项治疗有哪些可能出现那些

副作用?

❏ 这些副作用可以预防或控制吗?

❏ 这些副作用是永久性的副作用?

❏ 我在治疗期间可否继续工作?

❏ 我在治疗期间可否服用任何

草药或保健品?

❏ 这项治疗会如何影响我的日

常生活?

有关治疗的风险

❏ 您建议的治疗方法存有什么风险?

(例如并发症、生活素质、死亡率)

❏ 这项治疗方法有哪些利弊?

❏ 如果我选择等待或不接受任何治疗,

会有什么后果?

如果要动手术,请要求外科医生向 简单地解释手术的类型、所使用的技 术、以及动手术的原因。以下是您 考虑提出的问题。

❏ 动手术的目的是什么?例如,是否为了减轻

疼痛、确定病症、割除肿瘤或是纠正畸形?

❏ 手术会有什么预期的益处?有哪些潜在的并

发症?

❏ 目前有哪些非手术的治疗方法?

❏ 是否得立刻进行手术?

❏ 如果不马上动手术,日后是否还可以选择动

手术?

❏ 延迟动手术会有什么后果?如果完全不动

手术,又有什么后果?

❏ 是否须要全身麻醉?有什么风险?

❏ 类似的手术一般需要多长时间?

❏ 复原时间需要多久?

❏ 是否需要服用止痛药物?

不论有多少准备,您有时还是会觉得别人无法

了解您所经历的一切。您有这种感受是可以

理解的。因此,如果能与有过类似经历的人交

谈,对您或许有帮助。其他癌症病患也可分享

有关治疗的过程,让您有心理准备。您也可考

虑找一个和您有相似病症的人谈谈,或是和一

些支援小组联系。若想取得有关支援小组的资

料,您可向您的主治医生询问,或拨打您所属

医院的癌症热线。此外,您也可拨电新加坡国

立癌症中心的癌症援助热线6225 5655或电

邮至[email protected]询问

更多有关支援小组的详情。

尽可能多了解自己的病情及现有的治疗方

法,才能让您有自主权,能够为自己作决

定。当您了解和掌握情况,心中的困惑和焦

虑感便会减少,也不会轻易被一些无稽之

谈所误导。

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Outreach Community

The altruistic nature of the staff in NCCS has received many accolades from patients throughout

the years. To commemorate this spirit, awards were presented to them for their positive working attitude and good customer service during the annual Staff Appreciation Day.

One of the recipients for the special awards was the team from the Ambulatory Treatment Unit (ATU).

“The award came as a surprise as this is the first time this award was presented to a team rather than an individual,” said Mag Tan, Nurse Manager of ATU.

To the ATU nurses, service is no longer just about smiles and delivering correct treatment and information to patients. They have gone further into the technicality of providing quality service through a protocol revamp. Through the years, the nurses at ATU have implemented a system to follow-up on new patients undergoing chemotherapy treatment.

A gentle smile and a

simple thank you are two

of the fundamental traits

in a service-oriented

industry. Likewise, at the

National Cancer Centre

Singapore (NCCS), staff

have consistently delivered

quality service beyond

expectations to patients.

MARK KO tells you more.

The Cancer Education and Information Service (CEIS), a department of the National Cancer Centre Singapore, is for cancer patients or anyone seeking to find out more about cancer related issues.

SERVICES INCLUDE:

Cancer Helpline Tel: 6225 5655

A private, confidential and anonymous one-to-one information and counselling service manned by specially trained nurse counsellors, the Helpline provides up-to-date information on symptoms, prevention, early detection, treatment and management of side effects. It also includes counselling, as well as emotional and psychological support in coping with cancer. Cancer patients can also be connected to health, welfare and cancer support services available in Singapore.

The Helpline is open from Monday to Friday, 8.30am to 5.30pm. Alternatively, drop an email to [email protected] for assistance.

Cancer Publications

Free publications on various aspects of cancer are available in NCCS. For a complimentary copy of Salubris to be mailed to your home or office, please call the Cancer Helpline. These publications are also available online: www.nccs.com.sg/pbcation/index.htm.

Educational Programme

The CEIS also conducts regular educational programmes on prevention and early detection of cancer through workshops, forums, health talks and campaigns.

For details of upcoming activities, please visit the National Cancer Centre Singapore website: www.nccs.com.sg.

CANCER HELPLINECANCER PUBLICATIONS

EDUCATIONAL PROGRAMME

CANCER EDUCATION AND INFORMATION SERVICE

SERVICE AT THE HEART OF WHAT WE DO

This provides a support system for patients to better manage side effects of chemotherapy at home, staff to determine patient’s clinical status following outpatient chemotherapy, give personalised advice related to patient symptoms and needs and to strengthen the ongoing nurse-patient relationship.

Further to this, the ATU and nurse clinicians have also developed the chemotherapy protocol to educate patients on their chemotherapy protocol regime with specific instruction at ATU and many more.

When asked on what keeps the team going, Mag said, “It is the support that we get from the management that has spurred us on despite going through challenging situations at times. I believe the management truly has the patients at heart in what they do and their commitment and dedication to this cause has been a guiding principle for many of us.”

Indeed, all these components were put under tests last year when NCCS went through the Joint Commission International audit and was conferred the gold standard. One of the departments which aced the audit was the ATU. Their quality service was applauded by the auditors who sang praises of their outstanding performance.

At NCCS, patients are at the heart of what we do. You can be assured consistent good quality service and patient care.

If you wish to know what patients have to say about NCCS’ service quality, do visit NCCS Facebook (Kind Words) and read more.

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People People

A s Head of the Department of Psychosocial Oncology, he had just declared triumph at overcoming his most difficult period in National Cancer Centre Singapore (NCCS) last year. His staff strength was down by 40% while

the workload rose correspondingly, with an average of 350 patient cases each month during the year. That was not all. He had to oversee a growing number of patients who were involved in various support group activities. But it was a happy problem, seeing the patients recovering from their treatment at NCCS.

Dr Fan’s problem somewhat mirrors the dilemma at the national level, where there is a shortage of qualified medical social workers. He estimates that 800 to 900 social workers would be required to meet the burgeoning need for social casework and psycho-social counseling services. “Society is becoming more mature with difficult social issues affecting many individuals. They need counseling services,” he said.

In 2010, his team saw 4,248 cases of which about 1,700 were new cases. An inpatient case will take up about 75 minutes, while an outpatient case may require 45 minutes of the social worker’s time. Dr Fan figures that he would need close to 10 social workers to achieve optimum results. Each social worker would have to handle 28 new cases and 44 existing cases each month.

The glaring disparity between the rising need of social services and the shortfall of social workers was examined in his doctoral thesis “The future of a professional association – a causal layered perspective”, which he embarked in 2002. As the current Immediate-Past President and Chair for Training & Professional Development of Singapore Association of Social Workers (SASW), he feels he could play a vital role by enhancing the industry’s profile, highlighting professional issues, and attracting more talents to the profession, among other things.

LEARNING TO EXPECT THE UNEXPECTED

VERONICA LEE catches up with Dr Gilbert Fan, who recently obtained his professional doctorate in social work and futures studies to find out what the future holds for medical social workers.

Coming face to face with Dr Gilbert Fan, one cannot help but notice how the busy and affable head of department can stay effortlessly immaculate at all times. Always in a creaseless work shirt with a whiff of cologne, he looks prepared for anything that comes his way. Perhaps expecting the unexpected, a mantra which he subscribes to, plays a part in his image.

In his thesis, he documented the government’s effort in boosting the profession. For a start, the government has made it easier for mid-career professionals to make a career switch to social work by bridging qualifications locally. There is also sufficient funding to upkeep continuing education programmes for continual professional education by social workers. Subsidies and scholarships are available to those who wish to attain the required credentials to enter the industry. All these have brought more focus to the profession in the past decade.

Dr Fan also delved into the fact that loyalty and affiliation to SASW is lacking as many social workers join the association with a ‘one-foot-in’ mentality. Employers today are more self-reliant and sufficient in meeting the professional needs of their social workers. Thus they would step out if the association’s agenda does not favour them. Many social workers are also preoccupied with their own work and do little to bring the profession to the next level. He reckons that many social workers are more agency-focused in their outlook than industry-driven. This may slow down the overall progress of the social work movement in Singapore.

This is where he begs to differ from them. “To be number one in what we do, we have to be far-sighted and help improve the profession.” He also feels that going regional is the way to progress for small countries like Singapore. To this end, he has been instrumental in forming collaborations with Vietnam. His counterparts have networked with many Asian and Asean countries but he sees the importance of initiating and sustaining strong partnerships in training and research with regional neighbours like Malaysia, Indonesia, Thailand and Philippines.

With his priority set on helping the industry, academic and skills training have become his constant pursuits. He said, “There is a need to place the industry’s interest ahead of your work interest in order to boost the profession.” In the last ten years, Dr Fan has also been understudying world renowned psychotherapist cum family therapist Dr John Banmen from Canada, learning about the Satir Model of Therapy.

This is a type of experiential psychotherapy that encourages one to experience oneself by reconnecting with the inner-self to bond with the world in a congruent way through an integrated analysis of social, spiritual, emotional, psycho-social and cognitive factors. To keep up with the industry, he attends clinical meetings regularly to network with like-minded professionals.

On what he aspires to achieve for his field, he said he hopes to make the field more accepted so that people with problems will not feel stigmatised to receive psychosocial intervention and counseling services.

But Dr Fan is quick to share that the job is not one without merits. “I find that it is a down-to-earth profession and stabilises life. When we examine other people’s problems, we also begin to feel empathy and contentment, and become grateful of the things we have. It provides us with a philosophy of living and dying, and we learn to expect the unexpected.”

To be number one in what we do, we have to be far-sighted and help improve the profession.

DR GILBERT FAN

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PAGE A8

SALUBRIS is produced with you in mind. If there are other

topics related to cancer that you would like to read about or if you would like to provide some feedback on the articles covered, please email to [email protected].

NATIONAL CANCER CENTRE SINGAPOREReg No 199801562Z

11 Hospital Drive Singapore 169610 Tel: (65) 6436 8000 Fax: (65) 6225 6283www.nccs.com.sg

Editorial Advisors

Dr Kon Oi Lian Prof Soo Khee Chee

Executive Editors

Ms Veronica Lee Mr Sunny Wee

Contributing Editor

Dr Wong Nan Soon

Members, Editorial Board

Mr Mark Ko Ms Sharon Leow Dr Shiva Sarraf-Yazdi Ms Flora Yong

Medical Editor

Dr Richard Yeo

Members, Medical Editorial Board

Ms Lita Chew Dr Mohd Farid Dr Melissa Teo Dr Teo Tze Hern Dr Deborah Watkinson

NCC Foundation WHY DO PEOPLE DONATE TO CHARITABLE CAUSES?

In a recent National Institute of Health, USA study which examined people’s brains with MRIs while they made decisions to give, Dr. Jorge Moll, the lead researcher on the study, said what they saw “strongly supports the existence of ‘warm glow’ at a biological level. It helps convince people that doing good can make them feel good; altruism therefore does not need to be ONLY sacrifice.”

Giving is good. More than anything, donors are motivated by their own experiences and values. A review of Maslow’s Hierarchy of Needs reveals many of the reasons that people donate fall into the higher categories of love, belonging, social needs, esteem needs, and self-actualisation.

There are four reasons why people generally donate to charitable causes:

1Personal Experience

Donors will often feel an affinity for a cause for a variety reasons related to their life experiences. This is most evident in causes that relate to health. If someone or one of their close friends or family members has been diagnosed at some point of time, they are acutely aware of the needs of patients.

For example, people who have had cancer often participate in events such as the Run for Hope and Pink Ribbon Walk. By donating they are able to contribute to a cause that they themselves have been affected by or honour their loved ones who were.

2 They want to make a difference.

People often say they donate or volunteer in order to “make a difference.” This phrase means many different things to many different people. Some people want to make an impact in the lives of an individual person. They would like to see a lasting and tangible change as the result of their contribution. They may not even be concerned with how long this change takes, as long as it does take place. Other people want to see an immediate impact, for example food distributed to those who are hungry and other types of emergency aid. Another element of “making a difference” is simply a grateful spirit that wishes to give back to society.

3 They want to do something active about a problem or take a stand

on a particular issue.

Many social problems seem too large for any one person to make a difference. Making a donation gives the donor personal power over a complex issue that is much larger than himself such as human trafficking and abuse, child labour, domestic violence and poverty.

4 They are motivated by personal recognition and benefits.

a. Many people like to be publicly acknowledged for their gifts to charity. On the high end of this scale is a building naming rights programme. Donor recognition plaques large and small serve to acknowledge gifts. Sometimes a simple “thank you” is all a person needs. All of these fulfil a psychological and emotional need to be recognised.

b. People donate because they get something tangible in return. If someone does not have a strong interest in the cause they may be more likely to make a donation or give other types of support when they get something of value in return. This is where special events such as charity art auctions and charity sales often come in.

c. Donating allows them to associate with a well known person or social set. The traditional black tie gala is one example of instances where socialites may buy a ticket or table just to “see and be seen.” Other times people may make a donation to a cause that a celebrity endorses, as a roundabout way of being associated with someone they admire.

d. Giving is a good thing to do.

While all of the above reasons and many others may be true, there is no doubt that the majority of people simply believe in the value of giving. Some give out of an accepted moral or spiritual obligation. Others subconsciously know that it just feels good to give.

Giving time or money voluntarily to help others is seen by sociologists as a marker of cohesiveness in a society.  Winston Churchill so rightly said: “We make a living by what we get, but we make a life by what we give.”

By Flora Yong Manager Division of Community Outreach & Philanthropy, NCCS