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Case: Ms Ng
Opting for Chinese over Western medicine
Ms. Ng is a 66-year-old woman who is an herbalist and rarely gets sick. She attributes her good health to her careful attention to her diet and use of traditional Chinese medicine. She is a single mother who raised her son, Tom, now in his 40s, while keeping up her small herbal medicine shop. However, over the last two months, she experienced worsening cough, shortness of breath, and swelling in her face. At Tom’s insistence, she reluctantly went to the hospital A&E. On a chest x-ray, a large mediastinal mass was found. Her doctor explained that the mass was compressing a large vein in her neck called the superior vena cava which was the reason for her shortness of breath and facial swelling. She was admitted to the medical ward, steroids were started, and a core biopsy of the mass was obtained.
Unfortunately, the biopsy results revealed diffuse large B-cell lymphoma and oncology was consulted. The oncologist, Dr. Yim, explained the treatment options with Ms. Ng and Tom. The bad news is, she said, that this type of cancer is very aggressive. Without treatment, the cancer will progress quickly and will be fatal in a matter of weeks. The good news is, if cancer treatments involving chemotherapy and immunotherapy are initiated, there is a 50% chance of long term cure. Even if the treatments fail to cure her, there is still a 60% chance of controlling her cancer for quite some time. “If I were you, I would start these treatments in the hospital right away,” she recommended.
Ms. Ng shook her head. “I don’t believe in your medicines, doctor. I will go to a traditional Chinese medicine practitioner who I know will help me.” Tom, however, was very alarmed. “Mother, if you don’t start these treatments in the hospital now, it may be too late!” Still, she refused and asked to be discharged.
Meanwhile, the ward physicians and nurses tried to convince Ms. Ng to start the cancer treatments. Dr. Yim arranged for cancer survivor volunteers to meet with Ms. Ng to share their experience. Still, nothing changed Ms. Ng’s mind. Dr. Yim had further meetings with Ms. Ng and her family including her son and her sister. While Tom continued to beg his mother to reconsider, his sister supported her decision. Knowing that Ms. Ng is a strong believer in Chinese medicine her whole life, her sister said, “Her mind is made up. I can only support what my sister thinks is best for her.”
After the meeting, Tom pulled Dr. Yim aside to speak with her alone. “I know my mother said she doesn’t want the cancer treatments, but I think she’s a making a mistake!” he exclaimed. “Please save her, Dr. Yim!” Dr. Yim knows that Ms. Ng is of sound mind and is capable of making her treatment decisions. However, she’s very uncomfortable herself with the patient’s decision and wonders if there’s anything else she can do.
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Themes: Patient Autonomy, Beneficence, Decision-making capacity, Cultural beliefs, Traditional Chinese medicine, cancer, family conflict, moral distress
- Dr. Derrick Au Kit Sing, Director, CUHK Centre for Bioethics
Mentally competent adult patients have the right to refuse to consent to medical treatment for any reason, or even no expressed reason at all, even where that decision may lead to death. The underlying ethical principle is to respect a person as an autonomous agent. Raanan Gillon, Emeritus Professor of Medical Ethics at Imperial College London, advocates this emphasis on autonomy, describing it as “primus inter pares” (“the first among equals”) among the four ethical principles put forth by Beauchamp and Childress.1 In philosophical ethics this has been disputed but medical practice do in fact abide by the absolute requirement of obtaining informed consent.
However, it is important to remember that refusal of medical treatment by the patient is not a permanent, irreversible refusal. In this case, Ms. Ng did in fact change her mind about immediate discharge from the hospital, and stayed on to complete the course of steroid treatment. This is a good indication that: Firstly, she is not giving up on herself and, secondly, when symptoms are significant, she may concede to receiving Western medicine treatment to an extent. Note also that in any patient first receiving the diagnosis of cancer (or other life-threatening illness) it may take time to ‘swallow’ the news and to accept the full implications of a treatment decision. Ms. Ng has a strong personal belief in traditional Chinese medicine, but she is also another human being facing a life-threatening illness for the first time. It would be important to attend to her emotions, explore her underlying concerns and the reasons for her reluctance to use Western medicine. Continuous dialogue and reassessment of her choice and preferences over time may be useful, and indeed ethically required.
In this case, there are at two other aspects worth discussing:
- Traditional Chinese medicine as a treatment option: The case doctor and the son are particularly uncomfortable, even distressed, that Ms. Ng should refuse a rather evidenced-based efficacious treatment. What is unknown in this case is whether well-practiced Chinese medicine may also have efficacy. Certainly traditional Chinese medicine has generally much fewer controlled studies as evidence, but it would be a valid question to ask an informed Chinese medicine practitioner, or to search medical literature on the subject. A physician who pays respect to the knowledge base of traditional Chinese medicine is also indirectly respecting the patient’s such preference. By doing so, he/she may also be more effective in arguing that the recommended treatment is better than Chinese medicine for this malignant lymphoma condition.
- The son and the sister holding different views: On whether to respect the refusal of treatment by Ms. Ng, the son focused on the missed benefit (‘beneficence principle’) while the sister was inclined to respect the autonomy of Ms. Ng. If one does agree that, philosophically, respect for autonomy is indeed “the first among equals”, should one then take side with the sister against the son? This however is not a good approach in handling disagreement among family members, as it may escalate the conflict rather than help its resolution. Rather, it may be more helpful to acknowledge that both are acting from what they think is best for the patient. Alternative options may be explored with the Ms. Ng and her family such as a time-limited trial of treatment with Chinese medicine and if disease progression continues, then switch over to Western medicine if her health condition allows.
Reference
- Gillon, Ranaan. Ethics Needs Principles-Four Can Encompass the Rest-and Respect for Autonomy Should be “First Among Equals”, Journal of Medical Ethics 29:307-312,2003.
Case: Mrs Yeung
Challenges in careful hand feeding
Mrs. Yeung is an 87-year-old woman with advanced dementia. She is widowed and has been living at an old age home for the past five years. Over the last couple of years, she has become bedbound and nonverbal. She no longer recognizes her daughter Karen who visits regularly. She requires assistance with feeding and had lost over ten pounds in the last year due to poor oral intake.
Over the last week, Mrs. Yeung was admitted to the hospital for increased lethargy. She was found to have a urinary tract infection and was treated with antibiotics and intravenous fluids. While she became more alert after a couple of days of treatment, she had failed her swallowing evaluation. The speech therapist documented that she was at high risk for aspiration and recommended non-oral feeding.
The doctor on the geriatrics ward discussed the question of nasogastric feeding tube insertion with Karen. He explained that Mrs. Yeung’s reduced food intake and swallowing difficulties are part of her advanced illness and suggested careful hand feeding as an alternative.
Karen replied, “Mom has already suffered enough. She doesn’t recognize me anymore and she can’t communicate. She just lies there. Putting in a feeding tube would be torturing her more.” Karen opted for careful hand feeding. Her decision was documented in an advance care planning document which was sent back to the old age home when Mrs. Yeung was discharged.
Man Yi, a personal care worker at the home, found it very difficult to continue to feed Mrs. Yeung. She is very weak and could only take in a few spoonfuls of food at a time. Mealtimes would take over an hour and Man Yi cannot afford to take that time when she has many other residents to care for. Besides, noting the speech therapist’s assessment, she is concerned that she would cause Mrs. Yeung to have an aspiration episode while feeding her. She raised her concerns with the nursing supervisor.
The nursing supervisor replied, “Let’s have a talk with her daughter then. If she doesn’t want to insert a feeding tube like everyone else, then she needs to either come herself to assist with her meals or arrange for someone who can. What if she chokes? Then the responsibility would fall on us. Besides, this ACP document belongs to the hospital. I’m not sure if we’re obligated to follow this anyway.”
During the meeting, Karen was surprised and upset upon hearing the old age home’s refusal to continue careful hand feeding. She exclaimed, “At the hospital, they said that she can continue to be fed by the staff here! I work full time at the post office and can’t come to feed her myself. I cannot afford to hire a maid!”
Man Yi felt at a loss for what to do. She recognizes the daughter’s wish to keep Mrs. Yeung comfortable but she cannot manage her workload if it takes so long to feed Mrs. Yeung. Her nursing supervisor suggested that they should send Mrs. Yeung back to the hospital. It seems that they don’t have another option.
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Themes: advance care planning, dementia, nutrition and hydration, nursing home, family determination, careful hand feeding
- Dr. Tak Kwan Kong, Honorary Consultant Geriatrician/ Clinical Associate Professor (Honorary)/ Clinical Lecturer (part-time), Department of Medicine & Therapeutics, Prince of Wales Hospital, The Chinese University of Hong Kong
1. What are the pros and cons of careful hand feeding vs tube feeding in advanced dementia patients with swallowing problems?
Careful hand feeding | Nasogastric tube feeding | |
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2. How should advance care planning be done for advanced dementia patients with unsafe swallowing?
For a patient who has a serious illness, planning on future medical and personal care at the end of life can be done via an advance care planning (ACP) process involving the patient, family and healthcare workers and takes into consideration factors such as disease prognosis, benefits and burdens of treatment, values and preferences of the patient. Usually ACP is a process of communication intended for mentally competent patients. In the Hospital Authority of Hong Kong, the term ACP extends beyond communication with mentally competent patients to include that with family members of mentally incompetent patients. Decision-making regarding the patient’s future medical or personal care should be done by consensus building among members of the healthcare team and with the patient’s family, based on the best interests of the patient.
Mrs. Yeung suffered from advanced dementia, could not communicate, and was judged by the geriatrician as lacking mental capacity to consent, but her wish may still be implied and understood from her body language (e.g. repeatedly pulling out the nasogastric tube). While her daughter, Karen, cannot insist on, or consent to, a treatment on behalf of the patient, her views help to understand Mrs. Yeung’s previously expressed views on end-of-life decisions. The decision-making process on dysphagia assessment and management in advanced dementia patients is complex and is ideally a combined effort of the multidisciplinary team. The speech therapist documented that Mrs. Yeung was at high risk for aspiration and recommended non-oral feeding. However, dementia patients may under-perform on formal swallowing tests because of distress, unfamiliar test environment (e.g. tilt-table), and distasteful artificial barium-modified food. The observations of the usual swallowing ability of Mrs. Yeung during meal time by nurses and family members should also be considered when assessing the safety of oral feeding. Geriatricians have a role to diagnose and treat conditions impairing swallowing, e.g. delirium, depression, oral candidiasis, and discontinue medications causing dry mouth and impairing swallowing (e.g. antipsychotics). In the ACP process, it is important to consider the context, including the available support systems and resource availability. While the geriatric ward where Mrs. Yeung stayed had the appropriate support and resources to practise careful hand feeding, the aged home where Mrs. Yeung was subsequently discharged to did not and this may result in rebound hospitalizations. Careful transitional care planning and collaboration between hospital and aged home staff are important for success of smooth transfer of care from hospital to the community. The pros and cons of careful hand feeding vs tube feeding (see above) should therefore be carefully reviewed and discussed before drawing up an individualized advance care plan that is practicable.
3. How to optimize clinical ethical decisions when faced with ethical and legal dilemmas in the care of advanced dementia patients?
The ethico-legal dilemmas in this case are that while the hospital multi-disciplinary team (experts) recommended careful hand feeding in their ACP (not legally binding) for an advanced dementia patient whose swallowing was judged unsafe by the speech therapist, the aged home staff (frontline) did not have the supporting practice (education, operational policy and human resources) and expressed litigation concern. A common argument for not starting tube feeding in this situation is that the burden of tube feeding is high and the intervention adversely impacts on the quality of life of terminally ill patients. Despite Mrs. Yeung is in an advanced stage of dementia, she has just been recovering from an acute illness (urinary tract infection), it is thus arguable to label her as terminally ill. Moreover, Mrs. Yeung had lost over ten pounds in the last year due to poor oral intake, and was likely having malnutrition, which reduced her immunity and made her susceptible to infections. Tube feeding, on a short-term basis, may be a quick treatment to restore her nutrition and body weight and optimize her condition. However, quality studies are lacking to address whether or not tube feeding can improve nutritional status for advanced dementia patients. The British Geriatrics Society and the Royal College of Physicians recommended that if in doubt, a trial of nasogastric feeding with clear agreed objectives may be appropriate in managing dysphagia in older people towards the end of life. Tube feeding should then be withdrawn if failing to achieve the objectives.
There are many ways of thinking about ethical issues in geriatrics that help to reduce our shortsightedness in order to benefit patients and ourselves. In addition to the usual "mainstream" ethical approach (based on the ethical principles of autonomy, beneficence, justice, non-maleficence), there are also narrative approaches which take into consideration values and expectations, limitations/uncertainties and concerns, and the context (patient-doctor-family-care worker, hospital-community). This requires active listening and dialogue; commitment, compassion, and courage to approach the ethical dilemmas in caring for elderly people. How certain is Mrs. Yeung terminal and without any remediable cause(s) for her impaired swallowing? Do we know what is valued by Mrs. Yeung? What is the expectation of her daughter Karen and can she be involved as an informal carer? Does Karen have similar fear of unsafe swallowing as the aged home care worker Man Yi so much so that Karen is reluctant to hand feed her mother to avoid the guilt of causing her mother to choke to death? How can the aged home nursing supervisor and the hospital team give support to Man Yi and Karen?
4. Guidance for hospital and aged home staff presented with a similar situation
Ideally, this situation may have been prevented by collaborative discharge planning between providers/carers in the hospital and community setting. Short of this, the following tactics may be of help:
- Close liaison between the hospital out-reach community geriatric assessment team (CGAT) and the aged home staff for post-discharge patients; e.g. review of oral intake of Mrs. Yeung soon after discharge by CGAT, education of aged home staff on safe swallowing techniques and postures, a hotline accessible to aged home staff to call for help and advice by CGAT.
- Attitude of moving away from risk-centred medicine to person-centred care: Since the focus on risk-centred medicine (unsafe swallowing, aspiration risk) has created anxiety, fears and defensiveness in aged home staff and probably also the hospital team and the patient’s daughter, it may be reassuring if the speech therapist acknowledges “relative” rather than “absolute” swallowing risk, and avoids recommendation of “non-oral feeding” in documentation, which may be seen as expert opinion with litigation consequences. The speech therapist and CGAT team can teach Karen on safe hand feeding techniques, diverting the focus from aspiration to human touch, and encourage Karen to try to come to the aged home after work and hand feed her mother carefully. Karen can also consider recruiting volunteering friends and neighbours to provide careful hand feeding for her mother at the aged home.
- ACP is not a one-off but rather an ongoing process of discussion and review as the patient’s condition or preference changes. If Mrs. Yeung is distressed (e.g. due to choking) despite careful hand feeding and continues to lose weight, CGAT can discuss with her daughter on the option of short-term tube feeding and assess for any improvement and tolerability. If Mrs. Yeung’s condition improves after short-term tube feeding, careful hand feeding can be reintroduced.
個案:楊老太
人手小心餵食的難題
楊老太87歲,患有晚期認知障礙症。喪偶的她過去五年一直居於安老院。 過去幾年她開始臥床不起而且失語。女兒嘉寧定期來看她,可是她再認不出女兒來。過去一年,她因為不良於口腔進食,瘦了十多磅,故此需要他人協助餵食。
過去一星期,楊老太因嗜睡的狀況增多而入院,驗出泌尿道感染後接受了抗生素和靜脈輸液治療。經過數日治療,她精神有所好轉,但仍未能通過吞嚥評估。言語治療師評估記錄顯示她誤吸的情況存在高風險, 並建議採取非口腔餵飼。
老年病房的醫生與嘉寧討論鼻胃管飼(nasogastric feeding tube)的問題。他解釋,楊老太進食減少及吞嚥困難都是病症晚期的症狀,並建議採取人手小心餵食。
嘉寧回答:「媽媽受的苦夠了,她再認不出我了,也無法與人溝通,只能這麼躺著。插餵食管只會讓她受更多折磨。」嘉寧於是選擇人手小心餵食; 她的決定記錄在預設照顧計劃(advance care planning)文件中,而文件在楊老太出院時送回安老院。
安老院的個人護理員敏兒感到很難繼續給楊老太餵食;因為楊老太非常虛弱,每次只能吃幾匙食物。 餵一頓飯通常要費個多小時。 可是敏兒還要護理許多住院者,實在花不起這麼多時間。 此外,有見言語治療師的評估,敏兒擔心餵食會引致楊老太誤吸,因此她向護理主管提出她的顧慮。
護理主管回答: 「那只好跟她女兒談談,如果她不想母親跟其他人一樣插餵食管,那麼她就要親自來給母親餵食,或者另外安排他人幫忙。否則她哽塞怎麼辦?責任就會落到我們身上。另外,這份預設照顧計劃是屬於醫院的,反正我也不肯定我們是否有法律責任要遵循。」
會面時,嘉寧得知安老院拒絕繼續人手小心餵食,感到詫異和心煩,她呼喊:「醫院的人說媽媽可以繼續給這裡的員工餵食! 我全職在郵局工作,沒可能過來餵她,我也請不起傭人!」
敏兒不知該如何是好,她認同女兒希望讓楊老太舒舒服服的願望,但如果要花如此長時間來給楊女士餵食,她實在無法完成她的工作。她的護理主管表示,他們應當將楊老太送回醫院。似乎,她們別無其他選擇。
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主題:預設照顧計劃、認知障礙症、提供營養與水分、護養院、家庭決定、人手小心餵食
香港中文大學威爾斯親王醫院內科及藥物治療系老人科榮譽顧問/臨床副教授(榮譽)/臨床講師(兼職)江德坤醫生撰寫
1. 對於有吞嚥問題的晚期認知障礙症病人, 人手小心餵食和鼻胃管飼有何利弊?
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2. 怎樣為有吞嚥危險的晚期認知障礙症病人設立預設照顧計劃?
通過制訂預設照顧計劃(ACP)過程, 嚴重病患者可計劃將來在人生晚期時的醫療和個人護理。該過程的參與者包括病人、家屬、以及醫護人員,而且需考慮的因素包括疾病預後、治療利與弊、以及病人的價值觀和取態。預設照顧計劃通常是適用於精神上有行為能力之病人的一種溝通過程。 對香港醫管局而言, ACP 一詞不但包括與精神上有行為能力之病人的溝通, 並且延伸至與精神精神上無行為能力的病人之家屬的溝通。 病人未來的醫療及個人護理的相關決策, 應該是護理團隊成員和病人家屬基於病人最佳利益而達成的共識。
楊老太患有晚期認知障礙症,無法溝通,老人科醫生判斷她沒有精神行為能力作出同意; 但是仍可從她肢體語言(例如反覆拔掉鼻胃管)解讀和理解她的意願。 雖然楊老太的女兒嘉寧無法代表她堅持或同意某種治療,但女兒的觀點有助理解楊老太先前曾表達有關生命晚期的決定。 晚期認知障礙症病人吞嚥障礙評估和管理的決策過程很是複雜,最理想的情況是經跨學科的團隊共同商議而作出決定。 言語治療師記錄楊老太存在高誤吸的風險,並且建議採用非口腔餵飼。然而認知障礙症病人在正式的吞嚥測試中,有可能因為煩慮、不熟悉測試環境(例如傾斜床),以及難吃的人工鋇改造食物,導致表現欠佳。 在評估口腔餵飼的安全性時,護士及家庭成員對楊老太進食期間的觀察,也應納入考慮之列。 老人科醫生有職責診斷及醫治會損害吞嚥的情況,比如譫妄、抑鬱、口腔念珠病、以及中斷用藥(例如,抗精神病藥物)所引發的口乾和吞嚥障礙。 在訂立預設照顧計劃的過程中,考慮整體環境(包括可用的支援系統和資源)是非常重要。 楊老太入住的老人科病房,具備人手小心餵食所需的支援和資源,可是她出院後所安置的安老院,卻沒有這些配套; 結果, 她可能需要再次入院。 對於能否成功地將護理工作從醫院移交到社區,謹慎的過渡照顧計劃, 以及醫院與安老院員工間的協作配合, 都非常重要。 因此,在制訂切實可行並適合個人需要的預設照顧計劃前,有必要認真審視人手小心餵食和管道餵飼的利弊(見上文)。
3. 當護理晚期認知障礙症病人,遇到倫理和法律兩難時,該如何盡量作出最佳的臨床倫理決定?
該個案的倫理/法律兩難在於:言語治療師評斷一位晚期認知障礙症病人的吞嚥情況為不安全,醫院跨學科的團隊(專家)因此在該病人的預設照顧計劃(不具法律約束力)中, 建議採用人手小心餵食。 然而, 安老院員工(前線)沒有支援訓練(教育、運作政策和人力資源),同時表達了對訴訟的擔憂。 通常爭論不採用鼻胃管飼的理由,是鼻胃管飼負擔繁重,以及其對晚期病患者生活質素的不利影響。 儘管楊老太處於認知障礙症的晚期,但她的急性病患(泌尿道感染)正在康復,因此將她視作末期病患者,實有商榷餘地。再者,楊老太因口腔進食不足,在過去一年瘦了十多磅,並可能營養不良,令她的免疫力下降,易受感染。 短期而言,鼻胃管飼也許是一種快速的治療, 以恢復她的營養和體重,改善其身體狀況。 然而,現時尚欠缺有質素的研究, 顯示鼻胃管飼能否改善晚期認知障礙症病人的營養狀況。英國老年醫學會及倫敦皇家內科醫學院建議,當長者達到生命末期,在處理其吞嚥困難時,若有疑慮,可以在目標清晰而一致同意的情況下,嘗試採用鼻胃管餵飼; 如目標無法達到,則應停止管飼。
通過多種途徑來考量老年醫學中的倫理問題, 可減少我們的短視,好讓病人和我們自己也都得益。 除了從常規的「主流」倫理方向考量(基於自主、行善、公義、不傷害的倫理原則),還要考量敘事方向, 當中包括以下考慮: 價值觀和期望、限制/不確定因素和顧慮、以及背景(病人/醫生/家庭/護理員、或醫院/社區之間的情況)。 敘事方向講求主動傾聽和對話、承擔、憐憫、以及勇氣來應對照顧長者時遇到的倫理困境。對於楊老太, 是否確定她的病情已到末期?她吞嚥受損的情況是否無法醫治?我們是否知曉楊老太的價值取態?女兒嘉寧有何期望?嘉寧是否可以作為非正式照顧者?她是否與安老院護理員敏兒一樣, 害怕楊老太有吞嚥危險,為免受媽媽因嗆咳致死而內疚, 才不願親手給媽媽餵食?安老院的護理主管和醫院團隊應給予敏兒和嘉寧怎樣的支持?
4. 就類似情況給醫院與安老院員工的指導
理想情況下,若醫院和社區的提供者/照顧者能協作制訂出院計劃,上述情況就可以避免。 若果不能,以下策略或許有所幫助:
- 就出院後病人的情況,醫院的社區老人評估小組(CGAT)與安老院員工保持緊密聯絡, 例如: 楊老太出院後,社區老人評估小組即審視其進食情況,培訓安老院員工安全吞嚥的技巧和姿勢,為安老院員工設置熱線電話,以獲取社區老人評估小組的幫助和建議。
- 捨棄風險為本的醫學, 讓以人為本的護理取而代之: 這是由於著眼風險為本的醫學(不安全的吞嚥、誤吸的風險)令安老院的員工, 甚或醫療團隊和病人女兒造成焦慮、恐懼和戒心。 言語治療師可確認楊老太吞嚥風險的評估是「相對」而非「絕對」,並且避免在文件中提議採用「非口腔餵飼」,這樣可能會令人安心, 因為這種專家意見也許被視為具有法律責任後果。言語治療師和社區老人評估小組可以教導嘉寧人手餵食的技巧,將注意力從吸入風險轉移至人與人之接觸,並鼓勵嘉寧下班後到安老院給媽媽以人手小心餵食。嘉寧也可考慮招募自願幫忙的朋友或鄰居到安老院為媽媽提供人手小心餵食。
- 預設照顧計劃並非一次即成的,而是需要隨病人的狀況或取向的變化, 持續討論和審視的過程。如果以人手餵食已經很小心,但楊老太仍然因為哽塞感到痛苦 , 並持續消瘦, 社區老人評估小組可與她女兒討論短期鼻胃管餵的方案,並且評估病人情況有否改善和其忍受程度。若經過短期管道餵飼後,楊老太的情況有所改善,則可重新採用人手小心餵食。
Case: Mrs Tsang
Filial piety in end of life care decisions
Mrs. Tsang is a 90-year-old woman with a history of myocardial infarction, atrial fibrillation, and congestive heart failure. Since her husband passed away eight years ago, she has been living in a residential care home for the elderly. She looks forward to regular visits from her daughter, Ga Yan, who always brings her favorite paper-wrapped cakes from her old neighborhood bakery. However, she misses most her elder son, Ga Kit, who lives in Canada with his family and returns to Hong Kong about once a year.
In the past year, Mrs. Tsang has required repeated hospitalizations every few months for exacerbations of her heart failure. Each time when the symptoms come on, she experiences swelling in her legs and could barely catch her breath when she takes a few steps or lies in bed. In the hospital, she is treated with IV diuretics that remove fluid from her body and her breathing improves. After each hospitalization, however, she returns to the aged home more debilitated. After her last discharge, she can barely stand on her feet before she feels that her legs give out beneath her.
Ivy, the nurse from the community geriatric assessment team, makes a visit with Mrs. Tsang at the aged home two weeks after her last hospitalization. Noting Mrs. Tsang’s progressive decline and weight loss over the past several months, she decides to arrange a meeting with the Mrs. Tsang, who is of sound mind, and Ga Yan to discuss advance care planning.
At the meeting, Ivy expressed her concern about Mrs. Tsang’s declining health and asked what Mrs. Tsang hopes for in her care going forward. Mrs. Tsang replied, “I know that my health is not good. I just wish that I don't need to keep going back to the hospital. The staff is always too busy to be able to pay you much attention.” Ga Yan nods her head in agreement. “Mother’s been through a lot lately with so many hospitalizations. She really dislikes being in the hospital.”
Ivy then explains the end-of-life care (EOL) service that is provided by her hospital, which can help support Mrs. Tsang by avoiding hospitalizations if possible and focusing on her comfort.
“We will assess you regularly for any symptoms and try to treat you in the aged home if possible. If a hospitalization is needed, we will try to arrange a direct admission to the geriatric ward in the hospital and avoid a trip to the A&E department. The only requirement for patients enrolled in this programme is that they would need to agree to not for resuscitation. In other words, in the event the heart stops, the patients would forgo any attempts by the medical team at restarting the heart.”
Mrs. Tsang was alarmed. “I would still want the doctors to try to restart my heart if it stops!”
Hearing her mother’s words, Ga Yan sighs. “This programme sounds great in many respects, except that my mother’s not ready to give up yet. I’m afraid my mother will not be a good fit for your programme.”
Ivy made some notes in her records, and did not bring up the EOL service again.
Some months later, Mrs. Tsang was found to be unarousable by the carer in the home and was immediately brought by ambulance to the hospital. In the A&E, the doctors found her oxygen level and blood pressure to be low. Concerned that she is in respiratory failure and in shock, they immediately placed Mrs. Tsang on a noninvasive ventilation mask. Her oxygen level came back up after this treatment and when her condition appears more stabilized, she was admitted to the medical ward. Then the nurse on the ward calls Ga Yan and told her to come to the hospital immediately.
When Ga Yan arrived on the ward, she was greeted by Dr. Leung, the medical officer in charge of Mrs. Tsang’s care. He explains, “I’m worried that your mother’s condition may become unstable at any time. Given her serious heart condition and overall poor health, I think that in the event that her heart were to stop, I do not think that doing CPR would be in her best interest.”
Ga Yan replied, “A nurse had discussed this with my mother a few months ago at the home and my mother still wanted the doctors to try to restart her heart if it stops! Those were her exact words. I’m not sure what to do, doctor! Let me first speak with my brother!”
Dr. Leung nods. “Sure, please go ahead. You can inform the nurse after you’ve made your decision and you can ask to speak with me at any time. It’s best that a decision can be made today, as things can change quickly.”
Ga Yan immediately phones Ga Kit in Canada, which is now close to 3am. Fortunately, the phone was answered. Ga Yan explained the situation and asked her brother what he thought.
“It’s no question,” said Ga Kit. “Even though I wasn’t part of the conversation that you and mother had with the nurse, still it was mother herself who said she wanted to be resuscitated. How can we as her children go against her wish! Besides, if there is a way to allow mother to live a longer life, it would go against filial piety (不孝) to not support that. In the morning, I’m going to take the first flight out to Hong Kong. Watch over mother until I get there!”
Hearing her brother’s words, Ga Yan feels more conflicted. Her brother had not seen their mother in months. He doesn’t know how much their mother has suffered. She also doesn’t know whether her mother really understands what CPR would mean for someone in her condition at the time the nurse at the aged home brought it up. She certainly could not have imagined how sick she would be when this decision would need to be acted upon.
On the other hand, she wishes that her mother would be comfortable and have dignity when she is at the end of her life and is inclined to go along with Dr. Leung’s recommendation for not attempting CPR. However, she does not want to go against her brother’s viewpoint, and what her mother had stated in the past.
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Themes: filial piety, advance care planning, advance directives, substituted judgment, best interest, family conflict, life-sustaining treatment
- Dr. Derrick Au Kit Sing, Director, CUHK Centre for Bioethics
The daughter of Mrs. Tsang, Ga Yan, is in a difficult situation. Mrs. Tsang is unconscious, the case doctor advises that, given her serious heart condition and overall poor health, doing CPR would not be in her best interest. She is asked to inform the doctor of a decision within the day, as her mother’s condition is not stable. In previous encounter with the nurse from community geriatric assessment team, her mother apparently expressed a wish to live on even if resuscitation was required, but Ga Yan is not sure if in that brief dialogue her mother really understood what CPR would mean. She herself wishes that her mother could go through the end of life phase in comfort and with dignity. Her brother in Canada considers that it would go against filial piety (不孝) to not support their mother’s apparent wish to live on.
This case illustrates that difficult end of life decisions such as CPR is often not merely about a ‘right’ decision based on one or two ‘correct’ ethical principles. When a patient becomes mentally incapacitated near end of life, what is in the patient’s best interest (more accurately ‘best interests’ – it is not a single dimensional concept of benefit) is a mix of medical prognosis, judgement of benefit and burden of further active – possibly aggressive – interventions, and patient’s prior expressed wish and known values.
A DNACPR decision may be made easier if there is a clearly written valid and applicable advance directive. In this case, Mrs. Tsang’s prior expressed preference (to live on) reflects her values at the time of the conversation, but it does not amount to a clear advance directive. In any case, an advance directive states what medical interventions a patient would not wish to receive when his/her condition has come to a certain future state (e.g. irreversible coma, terminally ill). Even if a patient had expressed a prior wish not to withhold CPR under any circumstances, the medical team is not obliged to always follow the patient's instruction. The judgment of the medical team would also factor in the decision.
When the case doctor advised Ga Yan that, in his judgment, CPR would not be in Mrs. Tsang’s best interest, it is unclear whether he has taken into account Mrs. Tsang's prior expressed wish. He can try to explore with the daughter about the context for her mother's wish - e.g. did her mother have a good understanding about CPR and the expected outcomes for someone in her condition? Perhaps her mother's statement is an expression of her worry that the doctors would "give up" on her rather than to be interpreted as an advance instruction on her CPR decision.
If this is the case, then it may problematic to request Ga Yan to come back with a ‘decision’ on CPR or DNACPR. This creates a substantial psychological burden for her, implying that it would be her sole responsibility to come up with this ‘decision’ in the fact of conflicting considerations. If CPR is considered to be not indicated, it is preferable for the medical team to state that more explicitly, to clarify from the outset and such decision is a shared decision between the medical team and the family, making reference to patient’s prior wish and values.
The Law in Hong Kong does not adopt the U.S. legal framework for surrogate decision-making by family members. As such, what the family members are asked to do, in most circumstances, is a substituted judgment – imagining what the patient would have wanted if she were still able to express her views in this particular scenario. Substituted judgment is a meaningful concept that many lay persons (possibly also healthcare professionals) would find difficult in practice.
Noting that the son of Mrs. Tsang is flying back immediately from Canada, if the patient’s condition allows, it is desirable to hold a family conference after he is back, to better inform him of the Mrs. Tsang’s present medical condition and prognosis.
What if Mrs. Tsang deteriorates quickly with cardiac arrest and there is no time for shared decision making? We do not have sufficient information on the medical prognosis, including whether Mrs. Tsang is likely able to come off the ventilator once resuscitated. From the given information, it is not clear that Mrs. Tsang’s condition is medically futile (in the strict sense of physiological futility), CPR may still be justified. In such case, suitable counselling and support should be provided to Ga Yan, to relieve her of the sense of guilt from filial piety.
Finally, it may be noted that the original message given to Mrs. Tsang and Ga Yan concerning the ‘requirement’ for enrolling in the direct admission programme to the geriatric ward is somewhat problematic. Whereas it may be a fact that the programme is designed to serve patients who indicated a wish not to receive CPR in the advance care planning process, it is quite another matter to ‘require’ a patient to agree to DNACPR just because he/she prefers direct admission to the geriatric ward as part of her goal of maximizing comfort. Good end of life care programmes should not use their services as ‘incentives’ to influence the patient’s DNACPR decision. I am sure this was not the intention of the clinical team, but careful communication is needed here.