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Mr. Chau is a 75-year-old man who lives at home with his wife and his son's family. He was a former smoker and suffered from chronic obstructive pulmonary disease (COPD) for many years. Over the past year, he has become more easily short of breath with routine activities like walking around his home, dressing himself or taking a shower. He has also experienced more frequent exacerbations that led to several hospitalizations. In the last six months, he's already been admitted three times. Each time, he was put on a BiPAP machine for several days before his condition improved.

Last week, Mr. Chau was admitted again for another exacerbation of his COPD. After a week of treatment in the respiratory ward, he was finally able to come off the BiPAP mask. However, when the food tray was delivered to Mr. Chau, he pushed the food away. Ms. Leung, a registered nurse in the ward, saw this and recognized Mr. Chau from previous admissions. She approached Mr. Chau to ask why he didn't want the food.

Mr. Chau answered, "What's the point of eating? Just to keep coming back like this and be put on that mask? I'm as good as dead!"

Concerned, Ms. Leung asked Mr. Chau, "Is something wrong? I thought you'd be glad to come off the mask today."

Mr. Chau said, "Well, it's just temporary. I know how bad things are with my lungs. It's just a matter of time. I just don't want to go through the same ordeal over and over again, in and out of the hospital. Then one day, game over. If I'm going to die anyway, I don't want to be strapped to that mask up the final moment! You know how awful it is to be on the mask? You can't eat. You can't talk. It just blows air into your face!"

"It sounds like you're really concerned about being put on that mask again," Ms. Leung said.

"Yeah. I don't ever want to wear it again! Just let me go without making me suffer through all that! I've had enough!"

"Have you told your family how you feel?" asked Ms. Leung.

"I tried. But my wife and son...they won't listen. They don't want me to talk so negatively. They said that I should just listen to the doctor. The doctor barely even has time to talk to me!"

Feeling that Mr. Chau is probably correct about the advanced stage of his lung disease and that he's reasonable to prefer to be comfortable at this point, Ms. Leung decides to discuss Mr. Chau's concerns with Dr. Kam, the doctor-in-charge. She suggested that Dr. Kam should hold a family conference to explain his poor prognosis with his wife and son and to sign an advance directive for Mr. Chau.

However, Dr. Kam disagreed. "It's too premature to sign any advance directives and discuss end-of-life care issues. Mr. Chau's condition can still be relieved by the current treatments. He's ready for discharge soon!"
Ms. Leung felt powerless and does not know how she can help Mr. Chau.

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Themes: advance care planning, advacnce directives, moral distress, life-sustaining treatment, conscientious objection

- Dr. Derrick Au Kit Sing, Director, CUHK Centre for Bioethics

We may discuss this case as a scenario of moral distress in which the nurse Ms. Leung felt powerless for being unable to do what she considered the right thing for the patient, as the doctor-in-charge held a strong opposite view on what was right.

Ms Leung's suggestion was to hold a family conference to explain the poor prognosis to the family, and to sign an advance directive for the patient.

Before considering her moral distress, it is useful to take a step back to ask a few questions:

This may be a pragmatic approach to overcome a deadlock. One may argue that taking the pragmatic approach does not always work, and there may well be other scenarios where institutional constraint is undisputable and even unfair. In some circumstances, a healthcare professional may need to bring up the issue of concern to hospital management, or raise conscientious objection to unethical practice.

In this particular case, it would appear that there is room for further assessment of the patient, positive communication within the team, and dialogue with the patient's family.

Mr. Ip is 96-years old. He lives at home with his wife and has several children in Hong Kong. He has a history of tuberculosis and chronic obstructive pulmonary disease. Over the past year, he started developing difficulty swallowing. A brain scan found evidence of multiple small subcortical strokes. He has been admitted multiple times for recurrent aspiration pneumonias. While each episode was accompanied by periods of confusion and increased debility, his mind would eventually clear and he would talk with his family and friends about Chinese history, one of his favorite subjects.

These multiple hospitalizations had been uncomfortable experiences for Mr. Ip. He sometimes experienced intractable nausea and vomiting and had to lie in bed for days on end. He would ask to go home soon after each time he was admitted. After one of these hospitalizations, he told his wife and his children, "I've lived a long life. When it's my time to go, please do not allow the suffering to be prolonged. I want to go peacefully."

The doctors at the hospital had discussed Mr. Ip's high risk of recurrent aspirations and the speech therapist had recommended placing a feeding tube. His family, heeding Mr. Ip's words and wanting to prioritize his comfort, opted instead for careful hand feeding.

One day, Mr. Ip started choking during a meal and had very labored breathing. He was immediately brought by ambulance to the A&E. He was admitted to the medical ward for aspiration pneumonia. Despite being placed on a facemask with the maximum amount of oxygen delivered, Mr. Ip remained hypoxic and in shock. One of his children at his bedside who is a physician knew that his father was imminently dying. He communicated this to his mother and siblings. Sobbing, Mrs. Ip nodded her head.

The doctor on the medical ward, Dr. Mok, approached the family to explain the plan of starting IV antibiotics and IV fluids. Mrs. Ip replied, "No doctor. We don't want you to start those treatments. It is my husband's wish that he would be able to go peacefully when his time has come. He would not want this to be prolonged."

Dr. Mok, while in agreement that Mr. Ip is critically ill and will unlikely survive, felt very uncomfortable with his wife's request. She felt she had an obligation to give a course of antibiotics because she cannot be absolutely sure that it would not work. In her mind she wonders, should she withhold what is considered standard treatment because of the family's request?

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Themes: Patient Autonomy, life-sustaining treatment, nutrition and hydration, Antibiotics, family determination, goals of care

- Dr. Christopher Lum, Consultant Geriatrician, Shatin Hospital

The practice of medicine is as humanistic as it is scientific. Its scientific basis rests upon empirical research that controls all but one single factor. The humanistic aspects anchor on having a caring attitude, respecting individual judgment and choice, and acknowledging our limitations and uncertainties in medicine. Treating patients as a sum of individual diseases where each disease is treated linearly may not benefit patients. In reality, patients commonly have interacting comorbidities and deciding the best management requires looking at each patient holistically. In this case, Dr. Mok might have considered aspiration pneumonia in isolation as a “single disease” in deriving the use of antibiotics as the “standard” treatment. Saving Mr. Ip’s life by treating his pneumonia might have been considered the single most important surrogate marker of success that would benefit the patient. Background interacting conditions that should also be factored into his care including his COPD, multiple subcortical infarcts, swallowing difficulty, recurrent pneumonia and increasing debility were under-weighed if not overlooked. In the case of Mr. Ip, his subcortical infarcts and breathing-swallowing incoordination from his COPD, both irreversible, had led to recurrent aspiration pneumonia which would likely be his expected terminal event. Patient management should be considered in the context of interacting co-morbidities and their reversibility as well as the patient’s wishes and preferences.

Upon hearing the request from Mrs. Ip to withhold antibiotics, it is worthwhile for Dr. Mok to consider the following points:

1. What is the chance that Mr. Ip will survive if the antibiotic is given? Does it really cure him or prolong the dying process?
2. What will Mr. Ip experience during the process if the antibiotic is given? Will this experience be compatible with his expressed wish, or the contrary?
3. Is Mr. Ip’s expressed wish and choice consistent when he was sick and when he was well?
4. Would there be any legal repercussions for Dr. Mok and the medical team if antibiotics were withheld?
5. Mr. Ip did not complete an advance directive but expressed his wishes verbally to his family. Are his family’s words enough to be relied upon as evidence of Mr. Ip’s wishes?

As in the case of Mr. Ip, his family had honored his wish to prioritize his comfort when they opted for careful hand feeding and accepted the associated risk of recurrent aspirations. This expected event has precisely occurred. At this time, his clinical state suggested that he was approaching his terminal state. Though episodic antibiotic treatment may be useful in controlling sepsis initially, its frequent and intermittent use will likely to induce antibiotic resistant infections and fails at the end. Even if Mr. Ip survived this time, this “successful” antibiotic treatment would be at the expense of culminating intolerable, uncomfortable experiences in Mr. Ip’s worldview, and he had clearly expressed his wish not to prolong this suffering. This wish was consistently expressed even on good days when he was not under stress or acutely ill, thus likely a thoughtful decision. Repeated use of antibiotics against his wish will add unfavorable psychological on top of physical suffering to Mr. Ip.

Survival is often considered the ultimate benefit and death the most dreaded ending by many medical providers. While death is, and should be, an adverse patient outcome; it is not, and should not be, the only one outcome to be considered. Other outcomes such as disability and/or the loss of ability to participate in social activities may be viewed as more detrimental than death by patients. ¹ It is thus acceptable and legal to withhold any life-sustaining treatment (including antibiotics) if it is judged to do more harm than good to a patient, or if the treatment is futile. As a matter of fact, the International Code of Medical Ethics published by the World Medical Association (2017) has recently revised the statement that "the health" in general of a patient is now the doctor's first consideration from “the health and life" in the original declaration. This change highlights that survival is not the sole factor to be considered in assessing beneficence and maleficence in medical practice. This principle is also reflected in the Hospital Authority Guidelines on Life-sustaining Treatment in the Terminally ill (2015) that states, “It is not an appropriate goal of medicine to sustain life at all costs with no regard to its quality or the burdens of the treatment on the patient.”

In this era of defensive medicine, Dr. Mok may have concerns about liability if she withholds antibiotic treatment in the absence of a written advance directive (AD). It should be noted that while an AD document is preferred, it is not considered a necessity in the decision to withdraw or withhold life-sustaining treatment(s). The decision to treat / not to treat should take into account the patient’s wishes if he is conscious and cognitively sound. For a patient who is mentally incompetent, the decision should be made through consensus building between the medical team and the patient’s close relatives based on the best interests of the patient. The patient’s prior wishes and values would be important in deciding what is in his best interests. In the case of Mr. Ip, one of his children was a medical doctor and knew his father was imminently dying. He had communicated this to close family members including the patient’s wife and other siblings. It appeared that consensus had been reached among his family to respect Mr. Ip’s wish, and the decision was articulated by Mrs. Ip. To alleviate anxiety about carrying out this decision, Dr. Mok may ascertain from Mrs. Ip and other family members on their understanding of potential consequences of withholding antibiotic treatment, the patient’s personal values and beliefs, any previously expressed wishes, and whether all important family members share the same goal and management direction. When in doubt, opinion from the Clinical Ethics Committee can be sought.

References

¹Tsevat J, Cook EF, Green ML, Matchat DB, Dawson NV, Broste SK et al. Health values of the seriously ill. Ann Intern Med 1995; 12(7): 514-520.

葉先生96歲高齡，跟妻子同住，幾個子女都在香港。他曾患結核病及慢性阻塞性肺病。去年，他開始出現吞嚥困難。透過腦部掃描，發現有多處小皮質下中風跡象。葉先生已多次因復發性吸入性肺炎入院。雖然他每次復發時神智一時清醒一時糊塗，身體也愈加虛弱，但每次都會清醒過來，與家人和朋友聊他喜歡的話題，中國歷史便是其中之一。

多次入院的經歷令葉先生很不舒服。他有時會出現頑固性噁心及嘔吐的症狀，並因此不得不連續臥床數日。他每次剛入院就急著出院。這樣反覆多次後，葉先生告訴妻兒：「我活到一把年紀了，在我臨終時，一定不要讓我再多受無謂之苦了。我想安詳地離開。」

醫院的醫生討論過葉先生反覆誤吸的高風險，言語治療師也曾建議為他置入餵飼管。但葉先生的家人還是聽從了他的意願，以他的舒適為首，選擇了人手小心餵食。

一日，葉先生用餐時出現咽喉梗塞，而且有嚴重的呼吸困難。家人立即召喚救護車將他送至急診室。隨後他因吸入性肺炎入住內科病房。儘管葉先生已帶上氧氣面罩，並將供氧量調至最大，但他依然缺氧，處於休克狀態。他床邊的兒子也是醫生，知道父親已經不行了，就跟母親及兄弟姐妹說明了情況。葉太哽咽著點了點頭。

內科病房的莫醫生找到葉先生的家人，表示準備給葉先生使用靜脈抗生素和靜脈注射液。葉太回答，「不用了，醫生。我們不想要這些治療。我先生希望安詳地離開，他不想這樣苟延殘喘。」

雖然莫醫生認同葉先生病情堪危，且生還無望，但對於葉太太的請求，她仍然覺得非常不安。莫醫生覺得有義務給病人注射抗生素，因為她不能完全確定這些治療對病人無效。她心裡有個疑問：僅僅因為病人家人要求，就不提供標準治療了嗎？

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主題：病人自決、生命維持治療、營養及水分、抗生素、家人決定、護理目標

沙田醫院老人科專家顧問林楚明醫生撰寫

醫學的實踐，既講究科學，亦以人為本。科學以實證研究為基礎，往往假設除了被研究的單一因素外，其他所有因素不變或均相同。在實踐以人為本的醫學上，我們必須承認我們在醫學科學上的局限性和不確定性，以關懷及尊重每位病人個體的判斷和選擇為基石。祇將病人視為患有多種不同疾病的身軀，並分別地針對每種疾病作出治療，對病人未必有整體的益處。現實情況中，病人的疾病往往是互為、共生，因此需要整體衡量每個病人的情況，才能得出最佳的治療管理方案。在本個案中，莫醫生當時可能將葉先生的吸入性肺炎獨立地視作「單一疾病」考慮，以抗生素作為「標準」治療。以治療肺炎來挽救葉先生的生命作為醫治成功的唯一令病人得益的重要指標。而各種互相影響病人情況的背景，包括慢性阻塞性肺病、腦皮質下多發梗塞、吞嚥困難、復發性肺炎、以及日漸虛弱這些因素，均未得到適當的考慮。在該個案中，葉先生因患有腦皮質下梗塞及慢性阻塞性肺病造成的呼吸吞嚥功能不協調，是兩種不可逆轉的疾病。該兩不能逆轉情況引發的復發性吸入性肺炎，極大可能亦是葉先生最後死亡的原因。當考慮病人治療管理方案時，應同時考慮交互性共生疾病及其可逆轉性，以及病人的意願和取向。

在得知葉太太要求不使用抗生素後，以下幾點值得莫醫生考慮：

1. 使用抗生素後，葉先生的生存機率有多大？抗生素能令其真正康復，還是僅僅延緩其死亡過程？
2. 使用抗生素後，葉先生會經歷什麼過程？這些經歷與他的意願相符還是相違？
3. 葉先生生病時和健康時表達的意願及取向是否一致？
4. 如果莫醫生和醫療團隊終止給予葉先生抗生素有否法律後果？
5. 葉先生未完成預設醫療指示，但曾向家人口頭表達了他的意願。他家人的言論是否足以證明葉先生的意願？

在本個案中，葉先生的家人願意承受重複誤吸的風險，選擇了人手小心餵食，以尊重葉先生的意願。而預期的風險確實出現。此時，葉先生的臨床狀態反映他已經臨近生命盡頭。間歇採用抗生素治療復發性吸入性肺炎也許起初能控制敗血病，但頻繁地使用抗生素很可能引起抗生素抗藥性感染，導致最終的失效。即使葉先生能存活，但這次「成功」的抗生素治療的代價則是葉先生的人生會以難以忍受、極度不適的體驗而告終。該體驗是葉先生明確表示不願意接受或延長的經歷。該意願亦是葉先生在無壓力或未發急症的時候，一再表達的意願，可見是經過深思熟慮的決定。重複使用抗生素這種違反葉先生意願的做法，只會令葉先生的身體受折磨的同時，增加他心靈的痛苦。

許多醫療服務提供者往往將生存視為最大的好處，而把死亡當作最可怕的結局。儘管死亡對病人是不利的後果，但並不是、也不應是唯一考慮的結果。在病人看來，其他結果，例如殘疾和／或喪失社交活動能力可能比死亡更難接受。¹因此，只要認定對病人弊大於利或屬於徒勞的情況下，不提供維持生命治療（包括抗生素）是可接受和合法的。實際上，世界醫學協會發佈的國際醫學倫理守則（2017）作出了最新修訂，將醫生的首要考慮從病人的「健康和生命」修改為病人的「健康」。這個變化表明生存並非評估醫學實踐好壞成效的唯一或最終的要素。 同樣的原則亦於醫院管理局的維持末期病人生命治療的指引（2015）中反映出來：「醫療的目的，不應是不顧一切地維持生命，而不理會病人的生活質素及治療的負擔。」。

在防禦性醫療的時代，莫醫生可能擔心在沒有預設醫療指示（AD）文件的情況下不提供抗生素治療的責任問題。應當注意的是，雖然最理想是病人有預設醫療指示，但這並非決定撤去或不提供維持生命治療的必要因素。若病人神志清醒，認知清晰，醫護應直接和病人探討其在選擇治療／不治療的意願。如果病人精神上喪失自主能力，該決定應是醫療團隊與病人家屬基於病人的最佳利益達成的共識。而病人的最佳利益應以病人事先表達的意願和價值觀為重。在該個案中，葉先生的其中一子是醫生，他明白父親即將離世，並將該情況傳達給包括母親及兄弟姐妹在內的重要家庭成員。顯然葉先生的家人已經達成了共識，要尊重葉先生的意願，並由葉太太闡明其決定。莫醫生可通過核實葉太太及其他家庭成員對於不提供抗生素治療的潛在後果的瞭解程度、病人的個人價值觀和信念、事先表達的意願、以及所有重要家庭成員對最終目標和病人管理方向的認知是否一致這些資訊，來減輕執行該決定的焦慮。如有懷疑，可徵詢臨床倫理委員會的意見。

References

1. Tsevat J, Cook EF, Green ML, Matchat DB, Dawson NV, Broste SK et al. Health values of the seriously ill. Ann Intern Med 1995; 12(7): 514-520.