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Case: Mr Ip
Withholding antibiotics at the end of life
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:
- What is the chance that Mr. Ip will survive if the antibiotic is given? Does it really cure him or prolong the dying process?
- 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?
- Is Mr. Ip’s expressed wish and choice consistent when he was sick and when he was well?
- Would there be any legal repercussions for Dr. Mok and the medical team if antibiotics were withheld?
- 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.
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?
人手小心餵食 | 鼻胃管飼 | |
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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。