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Case: Mr Tse
Mentally Incapable of Making End of Life Care Decisions
Mr. Tse, a 70-year-old man, was brought to hospital and admitted to the medical ward by his son. Mr. Tse complained of not being able to swallow. He lived alone, had a history of drinking many cans of beer, and his son visited him occasionally. The history of the swallowing problem was uncertain. He appeared emaciated. An OGD was carried out and a tumour obstructing the oesophagus was found. The surgical team concluded that Mr. Tse was too frail to undergo any palliative stenting procedure. The Medical Oncology team recommended that a course of chemotherapy might be tried, but that his nutritional status should be optimized first. His body mass index was 12 kg/m2 and he was unable to ambulate, being dependent for the basic activities of daily living.
In the meantime a nasogastric tube was inserted since Mr. Tse was unable to tolerate any food. However, he kept pulling the tube out and had to be restrained. Several conversations with Mr. Tse were attempted to elicit his preferences. Conflicting stories were obtained: sometimes he wished to do whatever the doctors recommended; sometimes he wanted to eat chicken and demanded this; sometimes he refused all treatment and wanted to be left alone. His son was consulted for an opinion on his feeding method, but was unsure what to do. After a few weeks a Mini Mental State Examination was carried out, revealing a score of 10.
How would ethical considerations guide the management of this patient?
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Themes: nutrition and hydration, dementia, decision-making capacity, substituted judgement, cancer
- Dr. Christopher Lum, Consultant Geriatrician, Shatin Hospital
The case of Mr. Tse posed an ethical dilemma for clinical care and management. Most specialty textbooks focus on disease treatment and doctors are trained to treat a disease or a single problem. Thus the Oncology team recommended that “a course of chemotherapy may be tried, but that his nutritional status should be optimized first”. As per the recommendation, the primary care team inserted a nasogastric tube but this was repeatedly pulled out by Mr. Tse. Although attempts were made to explore the wishes of the patient (it was uncertain what wishes were explored, re: on feeding mode, whether to receive chemotherapy or not, etc.), replies were inconsistent. The team attempted to consult Mr. Tse’s son, but he was unable to give an answer on what to do. Should the team continue to enforce the method of nasogastric tube feeding in attempt for later chemotherapy despite Mr. Tse struggling with this? Or should the team “abandon” Mr. Tse in view of his reluctance to receive treatment?
The four principles of Beauchamp and Childress (2001) on medical ethics, namely autonomy, beneficence, non-maleficence, and justice, have been pillars in this area for decades. These four pillars are inter-related and not standalone principles. For example, while we are to respect an individual’s autonomy on decision-making, he/she should be given adequate and truthful information on beneficence and non-maleficence before making the decision. As a prerequisite, Mr. Tse needed to have the mental capacity to make judgements and decisions. As for the situation of Mr. Tse, his decision was inconsistent and there was doubt on his mental capacity to make judgement. His cognitive function was assessed with Mini Mental State Examination (MMSE), in which he scored 10/30, showing that he was at a level of severe cognitive impairment by convention. However, one has to rule out the possibility that he was suffering from pseudo-dementia (e.g. depression related to the diagnosis or current treatment received) that was reversible. Even if his cognitive impairment was irreversible, a low score does not exclude him from having the ability to make decisions on his own. Proper assessment of his ability to retain, comprehend and balance information was required before being able to judge whether Mr. Tse was capable of making decisions on his medical treatment. Assuming Mr. Tse was genuinely not able to make judgement, it was reasonable to seek opinion from his son who should act as the surrogate for Mr. Tse, i.e. to make decisions as if he were Mr. Tse.
However, in recent years, there are concerns that the four principles alone are not sufficient in themselves. There are also debates about what constitutes “beneficence” or “non-maleficence”. Should an extension of life be the only outcome of such interests? A study has shown that for some, being handicapped or not being able to live independently are more intolerable than death (Tsevat J, 2004). Furthermore, more than 95% of the local population is Chinese, which follows the philosophy of filial piety in Confucianism. It is difficult to adopt an individualistic approach and neglect the views of family members. A practical “four quadrants” approach that takes into account the medical indications, patient preference, quality of life, and contextual features is advocated (Sokol DK, 2008; Jonsen AR, 2010; Tse CY 2016).
On medical indications for treatment, the medical team should be the best party to make recommendations based on the principles of beneficence and non-maleficence. Recommendations should not be based on an “average” patient but should be based specifically on Mr. Tse. As illustrated in this case, chemotherapy for oesophageal cancer may extend the median survival for a certain duration. The trade-off comes with the side effects of the chemotherapy. Yet, in the case of Mr. Tse who at that point was so emaciated, debilitated and generally frail, it was highly unlikely that he could tolerate chemotherapy or that chemotherapy would extend his overall survival. Medical indications for chemotherapy are debatable, so was the indication for a nasogastric tube for nutrition build-up, which serves as a primer to chemotherapy.
As to the patient’s preference, it was clear that Mr. Tse had repeatedly pulled out the nasogastric tube. That was obviously not his preference. As indicated, he wanted to eat chicken and demanded it. Was there a reason why he was not allowed to have chicken as he preferred? Had there been discussion with Mr. Tse on his preference to receive chemotherapy? Had he been given adequate information on not only the “success rate” and side effects of chemotherapy, but also the “success rate” and side effects of priming with nasogastric tube, as well as the expected life conditions after a “successful” chemotherapy? In other words, Mr. Tse needed to be discussed on the whole “management package” instead of on each of the individual procedures by isolation. If Mr. Tse was incapable to understand and judge, his previously expressed goals, values and preferences in life might be sought from his son. The information should then be used to evaluate whether the procedures (use of nasogastric tube, giving chemotherapy) violated the previously expressed goals, values and preferences of Mr. Tse, and to help his son arrive at a decision for Mr. Tse.
Quality of life (QOL) may pose a difficult issue as individuals may vary on what constitutes a good QOL, or on what life conditions are considered unacceptable. If a patient is cognitively sound, then one may discuss with him/her wishes or values, and what is considered an intolerable lifestyle over an estimated life span. In the case of Mr. Tse who could not give a sound decision, previously expressed opinions on the above matters could be sought from the son.
As alluded to above, the Chinese have a strong culture of filial piety which is largely influenced by Confucianism. This contextual feature has to be considered, especially given that the family’s view is sought when a patient has not expressed prior wishes. This presents the family members with the most difficult decision or unbearable responsibility when it comes to “refusing” a course of treatment which is “medically indicated”. However, the focus should NOT be on “accepting” or “refusing” a conventional treatment. Rather, the family should be discussed on different options of management directions, and arrive at a joint decision that is in the best interests of Mr. Tse based on the above three areas. It would be worthwhile reviewing the following aspects with the son:
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References
1. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th edition, Oxford University Press, Oxford 2001.
2. Tsevat J, Cook EC, Green ML, et al. Health values of the seriously ill. Ann Intern Med 1994; (122): 514-520
3. Sokol DK. The “four quadrants” approach to clinical ethics case analysis; an application and review. J Med Ethics 2008; 34: 513-516
4. Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 7th edition. New York: McGraw-Hill Medical 2010
5. Tse CY. Practical Approach to Clinical Ethics at the Bedside for General Physicians. Synapse 2016 (August) 3-7. Accessed on 8 April 2020 at http://www.hkcp.org/hkcp/publications.html
Case: Mrs Kwok
Family requests to withhold the truth from patient
Mrs. Kwok has been healthy her whole life. At the age of 88, she takes regular walks in her neighborhood and does some cooking and light housework in the home. She lives with her husband and her eldest son’s family. She also has a younger son and a daughter and enjoys visits from her many grandchildren. About a week ago, she developed abdominal pain, nausea and vomited a few times. Her oldest son, Chung Man, brought her to the hospital and she was admitted to the medical ward.
A CT scan of her abdomen showed evidence of bowel obstruction from a mass in her colon. A nasogastric tube was placed for decompression and dark green bilious fluid immediately drained into the collecting container. A colonoscopy with biopsy was subsequently performed which confirmed the diagnosis of colorectal cancer. Upon seeing the biopsy report, the medical officer, Dr. Leung, went to speak with the patient. He found the patient asleep in her bed while Chung Man sat beside her.
The doctor informed Chung Man of the diagnosis. Looking concerned, he asked, “What can be done, doctor? How can we let her eat? She can’t keep anything down now.” Dr. Leung replied, “We’ll need to ask our surgery consultant to see your mother first before we know what treatment options would be best for her.”
Chung Man replied, “Ok. Doctor, please don’t tell my mother about the diagnosis. I don’t want to upset her and cause her to be overly anxious.”
Dr. Leung nodded. He had wondered whether the patient has any cognitive impairment as she seemed to have some trouble with her memory and wasn’t sure about her decision-making capacity anyway. He asked a geriatrics consultant to assess her cognitive status.
After a thorough evaluation, the geriatrics consultant thought Mrs. Kwok has mild cognitive impairment but felt that she has capacity to make medical decisions about treatments for the cancer. The geriatrician then asked the patient whether she would like to find out from the doctors about her condition. Mrs. Kwok shook her head. “No, I don’t need to know. You should just tell everything to my son.”
Then the geriatrician pressed on, “If you don’t know about your condition, then you wouldn’t be able to make good decisions about your care.” To that, Mrs. Kwok replied, “I want Chung Man to make all decisions for me. I’m too old. I don’t know very much and these medical things are too complicated for me. I trust my son would know what to do.”
The next day, the surgeon saw Mrs. Kwok and recommended surgical resection of the mass to the team. However, when Dr. Leung informed the surgeon that the patient does not know about her condition and prefers not to find out and defers all decision-making to her son, the surgeon was unwilling to comply. He responded, “How can we keep the truth from a competent individual, especially one who we may be doing surgery on? I do not feel comfortable cutting into the body of someone who did not agree to the surgery herself. What will happen when the patient wakes up and finds a big incision in the middle of her abdomen? We cannot lie to her!”
Dr. Leung is unsure whether or not to tell the patient the truth.
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Themes: truth-telling, informed consent, decision-making capacity, family determination, cultural beliefs
- Dr. Tse Chun Yan, Chairman, HA Clinical Ethics Committee (2005 to 2017)
The role of the family in decision-making in Chinese society
The case illustrated the importance of cultural factors in ethical dilemmas related to breaking bad news. Here, there was discordance between the view of the patient's son and the surgeon. Mrs. Kwok's son did not want the patient to know, in order to protect the patient from psychological harm. Such an attitude has been common in Chinese families, and ethicists have raised the concepts of protective truthfulness and family determination to justify deceiving a patient who wants to know the truth.
It is true that, in traditional Chinese culture, major decisions are often made by the whole family together. But this does not necessarily mean excluding the patient, and some have questioned whether the principle of non-maleficence can really override the principle of autonomy in such a situation. However, in this particular case, the view of Mrs. Kwok herself was in line with her son. She did not want to know, and wanted her son to make treatment decisions for her. In this case, can we simply follow the wish of the patient and her son?
Psychological harm to the patient
Firstly, let us look at psychological harm to a patient from truth disclosure in general. To balance the principles of non-maleficence and autonomy, we have to answer two questions:
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This would mean that if the patient wants to know, the doctor should disclose the truth in the aforementioned manner rather than deceive the patient and let the patient guess the diagnosis himself/herself.
Nonetheless, we still need to address the culture issue. We should respect the desire for family involvement in the communication and decision-making process. The approach must also be individualized. Although recent studies have shown that most Chinese patients want to know the diagnosis, there could be a small number of patients who do not want to know. We need to sensitively explore what the patient already knows and how much he/she wants to know. Those who do not want to know may have denial or avoidance as a defense mechanism, and we should not break the defense mechanism without appropriate support. To respect the patient, we may withhold information, but we should not lie. We also need to reassess the situation as the disease progresses.
Legal reasons for disclosure
Secondly, we need to know whether there are legal reasons why disclosure has to be made. For a mentally competent patient, it is a legal requirement that a doctor must obtain consent from the patient before providing medical treatment. According to the Hong Kong Medical Council Code of Professional Conduct, consent is valid only if (a) it is given voluntarily, (b) the doctor has provided proper explanation, and (c) the patient properly understands. This implies that, in order to proceed with the operation, the patient has to be properly informed and to consent to the treatment herself. The decision cannot be delegated to the family. Then, does it mean that we should simply disregard the view of the patient and her son and disclose the bad news?
A pragmatic approach
In this particular situation, we can overcome the apparent dilemma by taking a step-by-step pragmatic approach.
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Going through these steps and with agreement from the son and the patient, the disclosure does not violate any ethical principles. If the son does not agree, or if the patient still does not want to discuss the illness, further discussions should involve a senior clinician with good knowledge and skills in breaking bad news. One should try to explore the concerns of the son and the patient, to assess any misconceptions, denial and anxiety, and to provide clarification and support. At the end, one should be able to succeed.
個案:郭女士
家人要求向病人隱瞞病情
郭女士八十八歲,身體一直非常健康,恆常於住所附近散步,又在家中做菜及進行簡單的家務。郭女士與丈夫和長子一家同住。她還有一個幼子和一個女兒,也喜歡一群孫兒到訪。約一個星期前,郭女士的腹部疼痛,感到噁心並嘔吐數次。於是長子忠文帶郭女士到醫院,其後她被送入病房。
電腦斷層掃描顯示郭女士的結腸有腫瘤阻塞腸道,醫護團隊用鼻胃管減壓,喉管即時抽出深綠色的膽汁至收集容器。團隊再用結腸鏡進行切片,確認郭女士患上結腸癌。主診的梁醫生閱畢切片報告,打算通知病人。這時郭女士正於病床睡覺,忠文在一旁坐下。
醫生告訴忠文診斷結果。忠文看起來憂心忡忡,問:「醫生,有甚麼可以做?我們怎樣幫助她進食?她現在一吃東西就吐出來。」梁醫生回答:「我們要先請外科顧問醫生觀察你母親的病情,才知道甚麼治療方法對她最合適。」
忠文回答:「好的。醫生,請不要告訴我母親診斷結果。我不希望她不開心或過分擔心。」
梁醫生點頭。他早前發現郭女士好像有記憶力問題,已經懷疑她是否有認知障礙,不肯定郭女士有否能力作決定。梁醫生請老人科醫生評估郭女士的認知狀況。
老人科醫生仔細評估郭女士的情況,認為她患有輕度認知障礙,但仍有能力為不同的癌症治療方法作醫療決定。老人科醫生於是詢問郭女士是否希望醫生告訴她的病情。郭女士搖頭說:「不用,我不需要知道。一切事情告訴我兒子就可以了。」
老人科醫生追問:「你如果不了解自己的情況,就無法好好決定自己的療程。」郭女士回答:「我希望忠文為我決定一切。我太老了。我懂的事不多,醫療的事太複雜了。我相信兒子知道應該怎樣做。」
外科醫生隔天與郭女士見面,向醫療團隊建議用手術切除腫瘤。梁醫生告訴外科醫生,病人不清楚自己狀況,也不願意了解,一切都交由兒子決定。外科醫生聽後反對這個做法,說:「郭女士有能力做決定,我們還要為她做手術,怎可能不告訴她真相?如果病人未同意,我就要進行手術,這我不能接受。病人醒來的時候發現自己肚子有個大切口,會發生甚麼事?我們不能向她說謊!」
梁醫生不知道應否告訴病人真相。
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主題: 告訴實情、知情同意、決策能力、家庭決定、文化習俗
醫院管理局臨床倫理委員會主席(2005至2017年)謝俊仁醫生撰寫
家庭在中國社會決策過程的角色
有關告訴壞消息的倫理爭議,這個案顯現了文化因素的重要性。個案中病人兒子與外科醫生意見不合。郭女士的兒子希望母親免受精神上的傷害,不願讓她知道實情。這種態度在中國傳統家庭很普遍,而倫理學家亦曾提出保護式誠實與家庭決定概念作為隱瞞希望知道真相的病人的理據。
在傳統中國社會,的確通常是一家人一起作重大決定。然而,病人未必不能參與決定過程。在這種情況,亦有人質疑保護原則應否蓋過自主原則。不過,個案的郭女士同意兒子的意見,交由兒子代自己做治療決定,不希望了解情況。我們可否跟隨病人和病人兒子的意願呢?
病人的心理傷害
首先,我們看看透露實情一般會帶來的心理傷害。在平衡保護原則與自主原則方面,我們需要回答兩條問題:
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正因如此,如果病人希望知道實情,醫生應該參考以上方法,如實告訴病人,而非瞞騙病人,任由病人自己猜測診斷結果。
不過,我們仍要處理文化問題。如果病人家屬希望參與溝通與決策過程,我們應該尊重。處理手法亦必須因人而異。雖然近期研究顯示大部分中國籍病人都希望了解診斷結果,但仍有小部分病人可能不欲知道。我們必須小心了解病人已知多少和希望知道多少。病人如果不希望了解實情,可能會作出不接受或逃避現實的防禦機制。如果沒有適當的支援,我們不應打破病人的防禦機制。我們可以尊重病人而不告知實情,但我們不應該說謊。我們亦應根據病情變化,重新評估情況。
告訴實情的法律理據
其次,我們需要了解有否法律原因而需要告訴實情。如果病人精神上有能力作出決定,法律要求醫生必須先取得病人同意,方可進行治療。根據《香港醫務委員會香港註冊醫生專業守則》,只有在下列情況,同意才屬有效:甲、同意是自願的;乙、醫生已提供恰當的解釋;以及丙、病人清楚明白。換而言之,病人必須獲恰當告知實情,並由病人本人同意接受治療,方可進行手術。病人不得委託家人作決定。這是否表示,我們可以不理會郭女士和忠文的觀點,而告訴實情?
務實處理手法
我們可以採用逐步的務實處理手法,來解決個案的兩難。
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只要按照以上步驟,並取得忠文與郭女士同意,就不會違反任何倫理原則。如果忠文不同意,或病人依然拒絕討論病情,應該交由資深醫生繼續討論,而資深醫生需要具備告訴壞消息的良好知識及技巧。我們應嘗試了解忠文和郭女士關注的問題,了解有否錯誤觀念、焦慮和逃避,再加以解釋及提供支援。最終,應能取得成功。
JCECC Capacity Building and Education Programmes on End-of-Life Care
Casebook on Ethical Decision-Making in End-of-Life Care..
of Older Adults
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