小美

作者：Roxanne Nelson  
出處：WebMD醫學新聞

　　April 15, 2010 — 一項刊載於4月10日臨床腫瘤期刊(Journal of Clinical Oncology)的韓國研究結論，雖然知道自己的病情不樂觀是相當悲慟的事情，但是多數癌症病患仍希望醫師能告知他們實情。
　　
　　研究者報告指出，多數癌末病患與他們的家庭照護者希望被告知，病患知道自己的診斷，情緒壓力比率較低、健康相關生活品質較高。
　　
　　他們發現，病患比照護者更希望知道自己癌末的事實(78.6% vs 69.6%)，結果顯示，相較於猜測自己的狀況或者偶然得知者，不論是醫師或家人直接告知病患預後，都會有顯著較佳的生活品質，生理、情緒和認知功能也是。
　　
　　被直接告知癌末情況者，也比較少疲勞、疼痛、食慾減少和功能性問題等。
　　
　　【有權知道？】
　　加州VA Palo Alto健康照護體系擴大照護副幕僚長James Hallenbeck醫師表示，該研究強調，即使是在文化情況一般被視為不予告知的韓國，希望被告知的人仍舊多於不想被告知者，這個研究發現的重點在於，多數病患希望被告知，不希望被告知的顯然是少數。
　　
　　Hallenbeck醫師受邀發表獨立評論時向Medscape Oncology表示，意義在於，我們必須根據病患和家屬的期望來決定如何個別告知這個壞消息，實務上的挑戰在於，如何在確認病患知的權利下，最佳地尊重家屬保護病患的意圖。
　　
　　他指出，醫師有義務以符合病患期待的方式呈現資訊，如果病患希望知道自己的所有詳情，家屬的希望就是其次考量，不過，有一些案例中，仍有意識的病患希望只有家屬被告知、甚至由家屬做出極緊要的決定，如果這是病患希望的處理事情的方式，那也可以，我的義務是遵照這個期望。
　　
　　作者們指出，在一些文化中，不希望醫師告知病患重症，相反的，由家人決定與負責，即便病患仍有行為能力也是如此，不過，根據以前的研究，多數韓國醫師傾向告知病患癌末診斷，幾乎所有癌症病患和家人相信，病患應被告知末期病程。
　　
　　【多數病患希望被告知】
　　該研究中，韓國京畿道國立癌症中心癌症處置小組的Young Ho Yun博士等人利用問卷收集了一些資料。
　　
　　當醫師評估病情變為癌末且存活僅剩幾個月時，在數日內即對病患和家屬進行面對面訪談問卷，以郵件追蹤病患和家屬2個月，在病患往生之後約3個月，以電話訪談家屬。
　　
　　作者們發現，照護者(n= 380人)指出癌末的比率比病患(n= 474)高(83.4% vs 58.0%；P< .001)，多數病患指出，他們的醫師告知他們已經癌末，病患也比照護者更可能從症狀惡化「猜」自己的病情已到末期(P<0.05)，此外，10.7%的病患以及5.4%的照護者指出，從家人知道、碰巧知道末期狀態的比率分別是 3.6%和2.2%。
　　
　　病患比家人更想要知道病情已達末期(78.6% vs 69.6%；P= .005)，希望知道的人中，真正知道的病患比率為64.0%；不想要知道的人中，該比率為39.6%(P< .001)。
　　
　　較年輕的病患以及自付治療費用者，比較希望被告知末期病情。教育程度、癌症診斷前的工作狀態、對自己病況的警覺、美國東岸癌症臨床研究合作組織(ECOG)分數等也會影響病患被告知的慾望。
　　
　　作者們報告指出，約20%的病患以及30%的家庭照護者不希望病患知道「壞消息」，這個比率和之前的研究一樣，這有助於解釋何以醫師通常不會提出告知。
　　
　　作者們報告指出，此研究中，有一部分病患警覺到疾病已經達到末期，而未警覺病情的病患表示希望知道預後。
　　
　　作者們結論表示，自主權或自我決定權已經是人權的普遍認知，不論任何文化，當然也可運用到亞洲文化，不同的社會規範影響了由病患、家屬和健康照護者做出決定的過程。
　　
　　該研究接受韓國癌症中心的資金支持，作者們宣告沒有相關財務關係。


Most Terminally Ill Cancer Patients Prefer Disclosure of Their Prognosis

By Roxanne Nelson
Medscape Medical News

April 15, 2010 — Despite the distress of learning that their disease is terminal, most cancer patients prefer to know the truth, and to hear it from their physicians. This conclusion is from a Korean study reported in the April?10 issue of the Journal of Clinical Oncology.

The majority of patients with terminal cancer and their family caregivers preferred disclosure, and patients who were aware of their diagnosis had a lower rate of emotional distress and a higher health-related quality of life, the researchers report.

They found that patients were more likely than their caregivers to prefer to know the truth about their terminal status (78.6% vs 69.6%). The results showed that patients who were told about their prognosis directly, either by a physician or a family member, had a significantly better quality of life, including physical, emotional, and cognitive functioning, than patients who reported guessing about their condition or learning about it by chance.

Patients who were told directly about their terminal status also reported fewer symptoms, such as fatigue, pain, appetite loss, and financial problems.

Right to Know?

"This study highlights the fact that even in cultures such as Korea, which typically have been labeled as cultures practicing nondisclosure, many people prefer disclosure over nondisclosure," said James Hallenbeck, MD, associate chief of staff for extended care in the VA Palo Alto Health Care System in California. "As important as the finding is that a majority preferred disclosure, it is important to note that a significant minority did not want such disclosure."

The implications are that we must individualize how we share bad news.

"The implications are that we must individualize how we share bad news based on patient and family preferences," Dr. Hallenbeck told Medscape Oncology when approached for independent comment. "What is challenging in practice is how best to respect the desire of families to protect patients in such a situation while still affirming the right of the patient to know."

Physicians have an obligation to present information in a manner compatible with patient wishes, he added. "If a patient wants to get all the information his or herself, then yes, that trumps family wishes," he said. "However, I have certainly had cases where a competent patient prefers that only the family be informed, and even that the family make crucial decisions. If this is the desired way of handling things, then that is fine, and my obligation is to comply with such a desire."

The authors note that in some cultures, physicians are not expected to inform patients of a terminal illness and, instead, family members are given decision-making authority and responsibility, even when the patient is fully competent. However, according to previous research, the majority of Korean physicians preferred to disclose a terminal diagnosis to their patient, and nearly all cancer patients and their family members believed that patients should be informed of a terminal illness.

Most Patients Desire Disclosure

In this study, Young Ho Yun, MD, PhD, from the Cancer Management Branch at the National Cancer Center in Gyeonggi-do, Korea, and colleagues collected data from questionnaires.

The questionnaires were administered in face-to-face interviews with patients and family members at the same time, within days of a physician evaluation that the disease had become terminal and that survival was limited to a few months. Patients and family members were followed for 2 months by mail, and family members were interviewed by telephone approximately 3 months after the patient died.

The authors found that caregivers (n?= 380) were significantly more likely than patients (n?= 474) to report that the disease was terminal (83.4% vs 58.0%; P?< .001). Most of the patients reported that their physician had disclosed that their cancer was terminal, and patients were also more likely than caregivers to report that they had "guessed" that the disease was terminal from worsening symptoms (P?<0.05). In addition, 10.7% of patients and 5.4% of caregivers reported learning of the terminal status from a family member, whereas 3.6% and 2.2%, respectively, learned of it "by chance."

Patients were much more likely than their family members to want to know when the illness was terminal (78.6% vs 69.6%; P?= .005). Among those who wanted to know, the proportion of patients who reported actually knowing was 64.0%; among those who did not want to know, the proportion was 39.6% (P?< .001).

Younger patients and those who paid the treatment costs themselves were significantly more likely to want to be told when their illness was terminal. Level of education, job status prior to cancer diagnosis, awareness of their status, and Eastern Cooperative Oncology Group Performance Status (ECOG) score also influenced the patient's desire for disclosure.

The authors point out that approximately 20% of patients and 30% of family caregivers did not want patients to learn the "bad news," and that this percentage is in line with previous findings. It helps explain why physicians often do not provide disclosure, they write.

"In this study, a substantial proportion of the patients who were aware that the disease had reached its terminal stage and the patients who were not aware of it reported wanting to know the prognosis," the authors report.

"The right to autonomy or self-determination is broadly perceived as necessary to human dignity, regardless of culture, and might be applicable to Asian cultures, in which different societal norms influence the process by which decision making is assigned to the patient, family, and healthcare providers," the researchers conclude.

The study was supported by grants from the National Cancer Center (Korea). The authors have disclosed no relevant financial relationships.

J Clin Oncol. 2010; 28:1950-1957.