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JCECC Capacity Building and Education Programmes on End-of-Life Care
Project Highlights
Healthcare Professionals
Masterclass on End-of-life Care
8 May 2018
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Prof Lui Siu Fai, Adjunct Professor of the Institute led a session on the topic “Difficult Conversation – Interactive Case Discussion and Use of Applied Mediation Skills to Resolve Conflicts in End-of-life Care” together with experts in different fields at the Hospital Authority Convention 2018 on 8 May 2018. The session was well-received and attended by about 620 participants. Among others, a case of feeding options from the ethics casebook developed by the Institute was used for role-play and demonstration of applying mediation skills in resolving conflicts in EOL care. |
Seminar on “Communication in End-of-Life Care”
18 March 2018
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Dr Vincent Tse, Founding Chairman of the Society for Life and Death Education delivered a talk on “Communication in End-of-Life Care” in Princess Margaret Hospital on 18 March 2018. Over 200 members of Hong Kong Doctors Union attended the talk. Leaflets and booklets on End-of-Life Care were disseminated to participants in the booth. |
Patients, Caregivers and General Public
Public event on “End-of-Life Care Planning”
24 March 2018
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The CUHK Jockey Club Institute of Ageing organized a public event on End-of-Life Care education on 24 March 2018 at Yasumoto International Academic Park, The Chinese University of Hong Kong with enthusiastic response. During the talk, Ms. Angelina Luk (Solicitor and Notary Public of Hong Kong) spoke on the topic of “How to make a will?” and Dr. Jenny Lee (Chief of Service, Department of Medicine & Geriatrics in Tai Po Hospital) introduced “What are Advance Care Planning and Advance Directive?” 327 people joined the event and over 300 people participated in the five interactive workshops (Micro Movie and Talk on Advance Care Planning, EOL care planning handbook making, Horticulture with Life and Death education and Zentangle with Life and Death Education) held subsequently. |
Public event on “End-of-Life Care Planning”
12 August 2017
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The CUHK Jockey Club Institute of Ageing organized a public event on End-of-Life Care education on 12 August 2017 at Hong Kong Teachers' Association Lee Heng Kwei Secondary School with enthusiastic response. Dr. Lai King Son (Department of Medicine & Geriatrics in Tai Po Hospital), Mr. Rex Wong (Project Coordinator of Tung Wah Group of Hospitals) and Dr. Jacqueline Yuen (Clinical Lecturer of Department of Medicine and Therapeutics in CUHK) gave a talk to 220 participants on knowledge of End of Life Care and communication skills with healthcare professionals. Over 200 participants joined the five interactive workshops (Micro Movie and Talk on Advance Care Planning, EOL care planning handbook making, and Horticulture with Life and Death education) held subsequently. |
Public event on “End-of-Life Care Planning”
19 June 2017
Poster ![]() ![]() |
The CUHK Jockey Club Institute of Ageing organized a public event on End-of-Life Care education on 19 June 2017 at CUHK with enthusiastic response. Dr. Vincent Tse, Ex-Chairman of Society for Life and Death Education gave a talk to 180 participants on how patients and family members initiate communication with healthcare professionals. Over 150 participants joined the three interactive workshops (Micro Movie and Talk on Advance Care Planning, EOL care planning handbook making, and Horticulture with Life and Death education) held subsequently. |
2018
August |
End-of-Life Care Planning
Date: | 18 August 2018 (Saturday) |
Venue: | Lecture Theatre 1, G/F, Yasumoto International Academic Park, The Chinese University of Hong Kong |
Time: | 2:00pm - 5:20pm |
![JCECC leaflet 0818 01](/images/content/training/EOL/EOL_-eng_leaflet_Aug2018_1.jpg)
![JCECC leaflet 0818 02](/images/content/training/EOL/EOL_-eng_leaflet_Aug2018_2.jpg)
March |
End-of-Life Care Planning
Date: | 24 March 2018 |
Venue: | Lecture Theatre 1, G/F, Yasumoto International Academic Park, The Chinese University of Hong Kong |
Time: | 2:15pm - 5:45pm |
![JCECC leaflet 2401 01](/images/content/training/EOL/JCECC-leaflet-2401-01.jpg)
![JCECC leaflet 2401 02](/images/content/training/EOL/JCECC-leaflet-2401-02.jpg)
Highlights on End-of-Life Care Planning Public Event (24 March 2018)
Presentation Materials
1. | How to make a will? |
Ms. Angelina Luk (Solicitor) | |
Download PowerPoint | |
2. | What is Advance Care Planning and Advance Directive? |
Dr. Jenny Lee (Chief of Service (Medicine), AHNH & (Medicine and Geriatrics),TPH) | |
(The material would be provided soon.) |
2017
August |
End-of-Life Care Planning
Date: | 12 August 2017 |
Venue: | Hong Kong Teachers' Assocaition Lee Heng Kwei Secondary School |
Time: | 2:30pm - 5:45pm |
![812_front](/images/content/others/Eol/812_front.jpg)
![812_back](/images/content/others/Eol/812_back.jpg)
![talk_4](/images/content/others/talk_4.jpg)
![talk_3](/images/content/others/talk_3.jpg)
![q_a](/images/content/others/q_a.jpg)
![workshop-3](/images/content/others/workshop-3.jpg)
![workshop-6](/images/content/others/workshop-6.jpg)
For more event highlight, please visit :https://www.facebook.com/ioacuhk/posts/662485420621868
June |
End-of-Life Care Planning
Date: | 19 June 2017 |
Venue: | CUHK |
Time: | 2:30pm - 5:45pm |
![619 event page 001](/images/content/others/Eol/619_event_page_001.jpg)
![619 event page 002](/images/content/others/Eol/619_event_page_002.jpg)
![Talk](/images/content/others/Eol/IMG_0192.jpg)
![WS 1](/images/content/others/Eol/IMG_0542.jpg)
![WS 2](/images/content/others/Eol/IMG_7878.jpg)
April |
訂立平安紙講座
Date: | 11 April 2017 |
Time: | 9:45am - 10:30am |
Speaker: | Ms Angelina Luk |
Lawyer and Notary Public | |
Venue: | Lek Yuen Community Hall |
訂立平安紙講座
Date: | 18 April 2017 |
Time: | 9:45am - 10:30am |
Speaker: | Ms Angelina Luk |
Lawyer and Notary Public | |
Venue: | Lek Yuen Community Hall |
訂立平安紙講座
Date: | 25 April 2017 |
Time: | 9:45am - 10:30am |
Speaker: | Ms Angelina Luk |
Lawyer and Notary Public | |
Venue: | Lek Yuen Community Hall |
March |
Public Exhibition
Date: | 1 - 28 March 2017 |
Venue: | Prince of Wales Hospital |
![PWH](/images/content/others/Eol/exhibtion%20board/PWH.png)
Short Film Sharing and Dementia Workshop
Date: | 15 March 2017 |
Time: | 2:30pm – 4:00pm |
Speaker: | Ms Faye Chan |
Venue: | Room 403, Woo Ho Man Yuen Building, The Chinese University of Hong Kong |
![微電影分享](/images/content/others/Eol/微電影分享.jpg)
February |
Short Film Sharing and Dementia Workshop
Date: | 24 February 2017 |
Time: | 2:00pm – 3:30pm |
Speaker: | Ms Faye Chan |
Venue: | Room 501, Yasumoto International Academic Park, The Chinese University of Hong Kong |
![Tail before](/images/content/others/Eol/Tail%20before.png)
January |
Public Exhibition
Date: | 3 - 15 January 2017 |
Venue: | Sheung Shui Public Library |
![SS(1)](/images/content/others/Eol/exhibtion%20board/SS(1).png)
![SS(2)](/images/content/others/Eol/exhibtion%20board/SS(2).png)
Public Exhibition
Date: | 16 - 27 January 2017 |
Venue: | Fanling Public Library |
![FL(1)](/images/content/others/Eol/exhibtion%20board/FL(1).png)
![FL(2)](/images/content/others/Eol/exhibtion%20board/FL(2).png)
Golden Age Summit 2017
Date: | 22 January 2017 |
Time: | 12:00pm – 12:45pm |
Speaker: | Dr Helen YL Chan |
Associate Professor, The Nethersole School of Nursing, CUHK | |
Dr. Roger Yat-Nork Chung | |
Assistant Professor, School of Public Health and Primary Care, CUHK | |
Ms. Angelina Luk | |
Lawyer and Notary Public | |
Venue: | Hong Kong Convention & Exhibition Centre Hall 1C |
2016
December |
Public Exhibition
Date: | 1 - 31 Dec 2016 |
Venue: | LG/F, North District Hospital |
![IMG 20161201 160423](/images/content/others/Eol/exhibtion%20board/IMG_20161201_160423.jpg)
November |
Public Exhibition
Date: | 1 -15 November 2016 |
Venue: | Lobby Stage, 1/F, Shatin Hospital |
![IMG 20161102 114235 HDR1](/images/content/training/IMG_20161102_114235_HDR1.jpg)
Public Exhibition
Date: | 16 - 30 November 2016 |
Venue: | Lower Ground Floor, Bradbury Hospice |
![IMG 20161116 164333](/images/content/training/IMG_20161116_164333.jpg)
Advance Care Planning/ Advance Directives
Date: | 19 Nov 2016 |
Time: | 15:30pm – 17:00pm |
Venue: | Sheung Shui Public Library |
Content: | The talk will lead the public to identify choices for End-of-Life Care and the advantages of Advance Care Planning, and explain details about Advance Care Planning and Advance Directives. |
October |
Public Exhibition
Date: | 1 - 12 October 2016 |
Venue: | Wing B, G/F, Main Building, Taipo Hospital |
![IMG 2](/images/content/training/IMG_2.jpg)
![IMG 3](/images/content/training/IMG_3.jpg)
Public Exhibition
Date: | 13 - 31 October 2016 |
Venue: | G/F, Yasumoto International Academic Park, CUHK |
![IMG 74601](/images/content/training/IMG_74601.jpg)
Fanling Public Library
Date: | 15 October 2016 |
Time: | 3:30pm - 5:00pm |
Content: | What is the stress on taking care of end-of-life patient? How is the stress affecting our daily life? The talk aims at exploring the source of stress, and the effect of long term stress on our body, then finds out ways to release stress. Also, relaxation exercise will be taught. |
September |
Public Exhibition
Date: | 1 - 4 September 2016 |
Venue: | 2/F, Cheshire Home, Shatin |
Public Exhibition
Date: | 5 - 21 September 2016 |
Venue: | 2/F, Block C, Alice Ho Miu Ling Nethersole Hospital |
Public Exhibition
Date: | 22 - 30 September 2016 |
Venue: | Wing B, G/F, Main Building, Taipo Hospital |
![IMG 2](/images/content/training/IMG_2.jpg)
![IMG 3](/images/content/training/IMG_3.jpg)
test-restricted-video
Ageing Positively in one of the World’s Biggest Cities - CUHK Jockey Club Institute of Ageing
password: ioatest
為晚期認知障礙症病人提供餵飼管的決定
年長病人晚期護理服務醫學倫理個案集
為晚期認知障礙症病人提供餵飼管的決定
香港中文大學醫學院內科及藥物治療學系臨床講師阮君毓醫生撰寫
簡介
在香港,對晚期認知障礙症病人,尤其是那些居住在安老院(RCHEs)的患病長者而言,採用管道餵飼是極為普遍的做法。1,2 然而,在病人緊急入院的情況下置入餵飼管最為常見,而參與決定的醫護人員並不熟悉病人情況。3 臨床醫生通常憑吞嚥功能評估作決定,若病人存在高誤吸風險,則認為給病人置入餵飼管乃屬恰當。如果在決定過程中忽視了關系到病人最佳利益的其他重要因素,該決定可能會出現問題。很多臨床醫生對管道餵飼的益處抱有錯誤的預期,而這些預期並無理據支持,這無疑令上述問題雪上加霜。4-7 由於管道餵飼隱含高風險,且會降低病人的生活質素,8 因此醫護人員責任重大,需幫助病人家人作出符合病人價值觀和最佳利益的知情決定。本文採用循序漸進的方法,為臨床醫生給晚期認知障礙症病人置入餵飼管的決定過程提供指引。
第一步:探討進食困難的病因
導致認知障礙症病人進食困難的原因眾多。第一步是要徹底評估根源病因是否可以逆轉。例如,胃口不佳可能是因為抑鬱、牙齒問題、未獲治療的痛症、口乾、便秘和藥物副作用。這些都能透過適切治療逆轉。9 對於認知障礙症帶來的問題(例如,失用症可能導致病人無法使用餐具或拒絕張口),臨床醫生可以嘗試保守策略,例如提供手抓食物,引導病人,改變環境,以及改變食物的溫度、口感和味道。8香港某些公立醫院的認知障礙症專門膳食計劃已成功運用保守餵飼策略,解決了部分認知障礙症病人的進食問題。
第二步:判斷病人的整體預後結果
醫護人員和病人家人通常意識不到認知障礙症為末期疾病。病人首次確診後平均壽命為4至9年。10, 11 晚期認知障礙症病人經常會由吞嚥困難發展至感染復發性吸入性肺炎,這也許代表病人已臨近生命盡頭。12 因此,如要判斷預後結果及管道餵飼有無益處,辨識病人處於病程的哪個階段尤其重要。功能評估量表(Functional Assessment Staging Tool, FAST)等預後工具能夠協助臨床醫生作出判斷。13 對於某些病例,諮詢老人學專家可能有幫助。
第三步:基於理據衡量管道餵飼和替代治療的風險和益
如果無法辨識可以逆轉的病因,且保守策略亦無效,臨床醫生才應評估病人是否適合使用管道餵飼。很多醫護人員都誤以為管道餵飼能增加病人的生還率,但是晚期認知障礙症病人的相關研究卻顯示並非如此。14-18 一項本地研究得出一致的結果,居住安老院的晚期認知障礙症病人一年內死亡率高達34%,死亡誘因之一便是腸內餵飼。2
尚無證據顯示管道餵飼能令晚期認知障礙症病人避免感染吸入性肺炎。病人依然可能誤吸口腔分泌物和胃部反芻的食物導致吸入性肺炎。19, 20 管道餵飼會降低食道下括約肌壓力,從而引發更加頻繁的胃食管反流現象,因此使用管道餵飼甚至可能導致更多的誤吸性事件。21 此外,未有證據顯示管道餵飼能改善晚期認知障礙症病人的身體機能和營養狀況。8, 14, 22 管道餵飼亦存在其他顯著風險,包括出血、黏膜糜爛、嘔吐、腹瀉、以及因餵飼管堵塞或移位而導致的重複插管。8 在香港,鼻胃管比經皮內鏡胃造廔管使用更廣泛,但遠不及後者舒適。3 為防止病人拔管,可能需要對病人採取身體約束措施。這不但會造成認知障礙症病人情緒激動,還會因限制病人行動而增加其形成壓瘡的機率。15, 23
人手小心餵食(careful hand feeding, CHF)是解決晚期認知障礙症病人餵食問題的另一方法。24 受過訓練的照顧人士在採用人手小心餵食時,運用餵食技巧,緊密觀察病人,防止病人發生噎塞現象。雖然人手小心餵食無法避免誤吸情況,但從引發吸入性肺炎、身體機能惡化和死亡的角度而言,採用人手小心餵食的結果並不比管道餵飼差。22, 25 如果考慮病人生活質素,人手小心餵食效果可能較佳。人手小心餵食與管道餵飼不同,病人用餐時可以享受飲食和社交的樂趣。美國老年醫學會基於這些風險和益處,建議醫護人員採用人手小心餵食替代管道喉餵飼來處理晚期認知障礙症長者的進食問題。26
第四步:透過家人參與的決定過程作出有針對性的決定
臨床醫生在考慮使用管道餵飼及其替代治療時,應該聯同病人家人共同決定。如果清楚病人意向,例如病人曾訂立預設醫療指示,則病人意向應作為決定的優先選項;如果不清楚病人意向,則應基於病人的最佳利益作出決定。臨床醫生不但需要熟知臨床事實和理據,還應考慮其他可能產生影響的因素,包括心理、文化、經濟和醫療機構因素。27
病人家人看到病人營養不足,往往都會擔憂,因為大家普遍認為補充營養是護理和安撫病人的一個途徑。28 讓病人家人接受至親生命將盡、置入餵飼管也無濟於事這個事實可能需要時間。再者,文化觀念或宗教信仰也可能影響家人看法。因此,臨床醫生應該以尊重的態度聆聽家人的意見,為其提供支援,並在意見出現分歧時謀求共識。受本地文化影響,病人家人普遍擔心病人會「餓死」。27 臨床醫生應該抱同理心,表示明白家人看到病人病情惡化感到擔憂,並解釋病人在此階段不會感到饑餓。病人生命將盡,不是因為沒有足夠營養,而是疾病導致身體機能停止。臨床醫生應該強調,如果病人臨近生命盡頭,採用人手小心餵食會令病人更舒適。3
在決定過程中,其他團隊成員和照顧人士的想法亦很重要。醫院有否足夠受過訓練的職員或照顧人士進行人手小心餵食,病人何時返回其住所等實際問題都應予以考慮。人手小心餵食後發生誤吸事件的法律責任,亦是醫護人員潛在擔心的問題。因此,醫療機構需要為人手小心餵食提供強而有力的政策支持,推動臨終關懷文化,人手小心餵食方有可能成功施行。27
第五步:對末期病人進行人工營養及流體餵養應遵守醫療機構政策
一旦醫療團隊與病人家人認同管道餵飼不符合病人的最佳利益,臨床醫生應該遵照所屬機構的政策,不提供管道餵飼。香港公立醫院的臨床醫生應該參考醫院管理局頒佈的《對維持末期病人生命治療的指引》3。如果病人臨近死亡(預計在數小時或數日內死亡),即使病人未訂定有效的預設醫療指示,也可以撤去或不提供人工營養及流體餵養。如果病人未臨近死亡,撤去或不提供人手小心餵食的決定必須得到病人家人和醫療團隊的一致同意。醫療團隊必須包括兩名醫生,其中一名必須為相關領域的專家(例如老人學或紓緩治療)。如病人無法吞嚥而導致人手小心餵食不適用,團隊必須諮詢聯網醫療倫理委員會,惟以下兩個情況獲豁免:1) 病人曾口頭向家人明確表示或在預設醫療指示中表達了拒絕使用管道餵飼的意願;及2)病人一直主動拒絕使用管道餵飼,比如反複拔掉鼻胃管(醫管局指引2015)。3
結語
為晚期認知障礙症病人提供餵飼管的決定,應該遵守病人自主和仁愛的倫理原則。此外,其決定應是病人家人和醫療團隊的共同決定,即確保綜合考量了病人的預後結果、管道餵飼及替代治療的風險和益處。在理想情況下,確診為認知障礙症的病人在初期心智仍然健全,應有機會表達對管道餵飼以及未來治療方法的意向。一旦病人出現病情惡化的跡象,且喪失行為能力,病人家人就可以繼續沿用預設照顧計劃。家人因而有更多時間接受病人的預期病程,而毋須在病人入院時的「危急關頭 」作出決定。此外,家人亦可參考早期討論作出更好的決定,尊重其至親的願望,令其在臨終前得到有尊嚴的照顧。
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- HA guidelines on life-sustaining treatment in the terminally ill 2015. Hong Kong: Hospital Authority; 2015.
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- Larson EB, Shadlen MF, Wang L et al. Survival after initial diagnosis of Alzheimer disease. Ann Intern Med 2004;140:501–509.
- Boustani M, Peterson CB, Hanson LC et al. Screening for dementia syndrome: A review of the evidence. Ann Intern Med, 2003;138:927–937.
- Mitchell SL, Teno JM, Kiely DK et al. The clinical course of advanced dementia. N Eng J Med 2009;361:1529-1538.
- The National Hospice Organization. Medical guidelines for determining prognosis in selected non-cancer diseases. Hosp J 1996;11:47-63.
- Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev 2009:CD007209.
- Kuo S, Rhodes RL, Mitchell SL et al. Natural history of feeding-tube use in nursing home residents with advanced dementia. J Am Med Dir Assoc 2009;10:264–270.
- Meier DE, Ahronheim JC, Morris J et al. High short-term mortality in hospitalized patients with advanced dementia: A lack of benefit of tube feeding. Arch Intern Med 2001;161:594–599.
- Sanders DS, Carter MJ, D’Silva J et al. Survival analysis in percutaneous endoscopic gastrostomy feeding: A worse outcome in patients with dementia. Am J Gastroenterol 2000;95:1472–1475.
- Teno JM, Gozalo PL, Mitchell SL et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc 2012;60:1918–1921.
- Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet 1996;348:1421–1424.
- Vergis EN, Brennen C, Wagener M, Muder RR. Pneumonia in long-term care: a prospective case-control study of risk factors and impact on survival. Arch Intern Med 2001;161:2378-81.
- Gomes GF, Pisani JC, Macedo ED, Campos AC. The nasogastric feeding tube as a risk factor for aspiration and aspiration pneumonia. Curr Opin Clin Nutr Metab Care 2003;6:327-33.
- Garrow D, Pride P, Moran W et al. Feeding alternatives in patients with dementia: examining the evidence. Clin Gastroentol Hepatol 2007;5:1372-1378.
- Teno JM, Mitchell SL, Kuo SK, et al. Decision-making and outcome of feeding tube insertion: a five-state study. J Am Geriatr Soc 2011;59:881-6.
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- Luk JK, Chan FH, Hui E et al. The feeding paradox in advanced dementia: a local perspective. Hong Kong Med J 2017;23:306-310.
- Lopez RP, Amella EJ. Time travel: The lived experience of providing feeding assistance to a family member with dementia. Res Gerontol Nurs 2011;4:127–134.
「預設照顧計劃」及「預設醫療指示」在香港的概念與發展
年長病人晚期護理服務醫學倫理個案集
「預設照顧計劃」及「預設醫療指示」在香港的概念與發展
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
背景
隨著現代醫療科技的發展,臨近生命末期的病人仍可選擇多種維持生命的治療。然而,某些維持生命的治療其實只是延長病人的死亡過程,弊多於利之餘,更違背病人的意願。醫學界普遍認同,可在適當情況下不提供或撤去這些無效用的治療。1 首先,若有行為能力的病人決定不接受維持生命治療(LST),則其決定必須加以尊重。其次,對於沒有行為能力的病人,若醫療團隊和病人家屬認為治療不符合病人的最佳利益,則可不提供或撤去治療。不過,要衡量病人的最佳利益,除了考慮醫療方面的因素,也要顧及病人的生活質素及價值觀。如果不事先了解沒有行為能力的病人的意向和價值觀,醫療團隊和病人家屬便可能難以達致共識。
如果病人在有行為能力時已事先作出決定,拒絕接受某些維持生命治療,達致共識的難度可能因而減低。病人可指定在甚麼情況下(如病情到了末期或處於不可逆轉的昏迷)不接受哪些維持生命治療。在香港,這種決定通常稱為「預設醫療指示」(AD);在其他一些國家,這種事先指示稱為「生前預囑」,其「預設醫療指示」則可能還包括指定一名代言人處理醫療問題。在香港普通法框架下,根據2006年香港法律改革委員會(法改會)關於「預設醫療指示」的報告,2 若病人拒絕治療的「預設醫療指示」有效且適用,其法律效力與當前提出的口頭指示相同,並且必須遵行。然而,目前與醫療護理相關的代作指示在香港未具法律地位。
「預設醫療指示」指引的發展
以往,不論是本港專業醫護人員,還是香港公眾,都甚少討論「預設醫療指示」,直至法改會2004年就「預設醫療指示」發表公眾諮詢文件,情況才有所改觀。2006年,法改會發表相關報告,建議在現行普通法框架下推行「預設醫療指示」,而非透過立法的途徑。法改會進一步提出了「預設醫療指示」表格範本,範圍僅限於病人的病情到了末期、處於不可逆轉的昏迷狀況、或處於持續植物人狀況,惟法改會的表格範本並非普通法框架下唯一可用的「預設醫療指示」格式。2009年,香港食物及衛生局發表《在香港引入預設醫療指示概念諮詢文件》。3 在文件中,政府並未向公眾提倡簽署「預設醫療指示」,但卻建議向公眾提供更多關於「預設醫療指示」概念的資訊,並為專業人士制訂「預設醫療指示」指引。此外,該文件亦有討論應否在香港推行「預設照顧計劃」(ACP)概念的問題。 2010年,香港醫院管理局(醫管局)發表了《醫院管理局成年人預設醫療指示醫護人員指引》,並分別於2014年及2016年作出修訂。4 醫管局的「預設醫療指示」表格由法改會表格範本修訂而來。在2010年的版本中,範圍僅限於病人的病情到了末期、或處於不可逆轉的昏迷狀況、或處於持續植物人狀況;及至2014年修訂後,表格新增一個類別,即「其他晚期不可逆轉的生存受限疾病」(如晚期腎衰竭、晚期慢性阻塞性肺病和晚期認知障礙等)。 根據該指引,「預設醫療指示」如有以下情況,其有效性可能受到質疑:
- 擬寫不明確;
- 未有適當簽署;
- 有聲稱或指述病人在作出「預設醫療指示」時受到不當影響;
- 有理由懷疑病人在作出指示時精神上沒有行為能力,或不是妥為知情;
- 病人的實際行爲已明顯與原有的預設指示不符,而該不符合的情況顯示病人已經改變主意。
一旦病人陷於預先指明的情況,且不再有行為能力作出醫護決定,有效的「預設醫療指示」便適用。一份有效和適用的「預設醫療指示」具有法律地位,病人家屬不能推翻。如果「預設醫療指示」的有效性或適用性受到質疑,醫療團隊在等候釐清情況期間,應繼續提供一切臨床所需的緊急維持生命治療。在「預設醫療指示」的有效性和適用性釐清後,可以撤去有關治療。
透過「預設照顧計劃」訂立「預設醫療指示」
訂立「預設醫療指示」的方法因國家而異。現時在醫管局,「預設醫療指示」通常由患有嚴重不可逆疾病的病人透過「預設照顧計劃」訂立。「預設照顧計劃」一般指病人與醫護人員、家屬及其他重要成員的溝通過程,以討論病人喪失行為能力作出醫護照顧決定時,怎樣的照顧對病人是為合適。5 有些地方則會採用更廣泛的定義,在「預設照顧計劃」涵蓋範圍內,包括與沒有行為能力病人或未成年病人的家屬所進行的討論。6,7
醫管局於2015年9月更新了《對維持末期病人生命治療的指引》,並增加了有關「預設照顧計劃」的新章節,而這個新章節於2019年發展為獨立指引。8 新的指引建議,「預設照顧計劃」過程可於以下任何一個情況啟動:病人經診斷患上生存受限疾病,病情急速走下坡;認知障礙的早期認知能力下降;疾病顯著惡化;停止針對病況的專門治療;過渡至紓緩治療;慢性疾病經歷急性嚴重病發後復原;經歷多次入院後;或病人入住院舍。但是,「預設照顧計劃」的制訂必須因人而異,評估病人是否已準備好進行相關討論亦至關重要。進行「預設照顧計劃」討論的醫護人員應具敏感觸覺和良好溝通技巧,不應視之為硬性和規範化的安排,或公式化的填寫檢閱表過程。「預設照顧計劃」的討論範圍可涵蓋:疾病的預期進展和預後結果,可提供的治療選擇、好處和風險,病人對醫療和個人照顧的取向和價值觀,以及病人家屬的看法和關注。「預設照顧計劃」的討論結果可包括:決定病人未來醫療或個人照顧的取向,訂立「預設醫療指示」,以及指定一名家庭成員以便日後病人喪失決定能力時作諮詢。
在緊急情況下遵行「預設醫療指示」
在遵行「預設醫療指示」之前,醫生必須判斷「預設醫療指示」是否有效和適用。這在緊急情況下並非易事,尤其是當病人到院前已心跳停止,醫生更須立即作出決定。美國許多州份為克服這困難,制訂了「維持生命治療醫囑」(POLST)系統。9 英國則制訂了指引和程序,確保其他醫護人員(包括救護人員)遵照「不作心肺復甦術」(DNACPR)表格執行。10 香港醫管局於2014年頒布的非住院病人「不作心肺復甦術」表格正朝這方向發展。11 不幸的是,礙於《消防條例》“有職責必須做急救”的條款,本港救護人員尚未接受此做法。
為「預設醫療指示」立法
雖然醫管局的指引可以幫助當局推行「預設醫療指示」和「預設照顧計劃」,但亦有專業人士和公眾就此提出各種疑問,其一便是「預設醫療指示」在香港缺乏立法保障。雖然2006年法改會的報告指出,在普通法框架下,病人在有效和適用的「預設醫療指示」中拒絕治療的決定必須得到尊重,但現行法例可能仍存在灰色地帶。根據香港法例第136章《精神健康條例》中第59ZF條,只要維持生命治療符合病人的最佳利益,醫生可在未經同意的情況下,向喪失決定能力的病人提供治療,但該法例卻並未提及與病人事先拒絕治療決定的關聯。有人可能會說,基於病人的最佳利益,醫生有權推翻病人的「預設醫療指示」。儘管在絕大多數情況下,病人事先拒絕治療的決定與其最佳利益一致,不過,立法有助於澄清該條例這一章節與「預設醫療指示」之間的關係,以免在某些難以判斷的情況下引發爭議。
健康的市民大眾訂立「預設醫療指示」
向健康的市民推廣「預設醫療指示」,不同國家採取不同的態度,如美國選擇廣泛宣傳有關指示,12 英國則採用相對審慎的方法。有人認為,健康的市民大眾未經審慎考慮而簽署「預設醫療指示」可能會帶來問題。一般而言,就永久性嚴重神經損傷的情況訂立「預設醫療指示」存在較少爭議。這種損傷可能是由未能預見的災難事件造成的,例如大範圍的中風或創傷。但無論病情的根源起因為何,此類損傷本身均會令病人的生活質素轉差,所以有關的預設決定較為簡單。然而,就末期疾病所訂下的預設決定卻可能存在多方面的問題。13 首先,為適當涵蓋可能導致末期疾病的不同情況,可能需要大量、複雜和令人困擾的資料。14 其次,不同末期疾病對病人的生活質素影響不盡相同,在未知所患疾病的情況下,作出沒有針對性的決定可能並不恰當。第三,健康人士對假設患病狀態的觀感可能比慢性病患者差,15,16 隨著健康狀況轉差,對治療的接受程度亦可能增加;17 也就是說,一個人的治療取向可能會因患病而改變。
事實上,大多數病人即使確診患上嚴重疾病,仍有能力作出恰當決定。故此,讓健康的市民與其家人準備好為未來患病時作出決定,可能比過早決定是否接受維持生命治療更有用。18,19 為作好準備,健康的市民需要瞭解死亡過程,以及「維持生命治療」和「預設醫療指示」的意義。儘管長者並不一定需要在患上嚴重疾病前已簽署「預設醫療指示」,但我們仍應鼓勵他們與家人討論死亡準備的問題,並鼓勵他們表達對晚期照顧的價值觀和取向。而要做到這一點,則有賴醫護人員、社會機構和香港政府共同合作,推行公眾教育。如果一位相對健康的年長市民希望簽署「預設醫療指示」,有關指令可以限於其遭受永久性嚴重神經損傷時的治療目標;當此人患上嚴重疾病時,「預設醫療指示」便可以擴展至其他相關情況。
採取甚麼措施有助減少晚期照顧決定在香港遇到的困難?
醫管局應繼續向晚期無法治癒疾病的患者推廣「預設醫療指示」作為「預設照顧計劃」的一部份。除此之外,社會同時亦需在其他方面推行工作。醫護專業人員需要更多有關「預設照顧計劃」和「預設醫療指示」的教育,以提升他們處理此類問題的知識水平和溝通技巧。對於廣大市民,則應推行更多的死亡教育,令他們掌握適當知識和心理準備來面對自己、家人和朋友預期之內或意料之外的疾病。
要提升死亡過程的質素,不能只從「預設照顧計劃」或「預設醫療指示」著手,對末期病人的整體醫療護理和社會支援也應得到改善,否則難以達成病人的某些意向和願望,例如良好的症狀控制和希望過身的地點等。改善的範圍不應局限於專科紓緩治療,還應包括照顧末期病人的所有服務。為此,政府需要訂立整體的生命晚期照顧政策,並按需要來修訂或制訂相關法例。
所有人終究要面對死亡。如果能夠按照自己的意願安詳地度過人生的最後旅程,為生命中珍愛的人留下美好回憶,亦未嘗不是一件好事。
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