「生前」好走：臨終患者的「歸根」之路，走好人生最後一程
對所有人來說，「死亡」都是個複雜且沈重的議題，吉人吉事將分為兩個系列對其進行解讀：「生前」好走和「死後」走好。在上一篇的「生前」好走中，本團隊詳細闡述了是什麼導致香港的「臨終質素」在全球綜合排名較低，尤其表現在提供紓緩治療服務能力低、公眾對其認知有限、及社會缺乏專業的相關醫護人員等方面。本篇是「生前」好走系列的第二篇，吉人吉事將從政策體系及空間特質方面，研究全球排名第一的英國為何能名列前茅，以及位於亞洲第一的台灣為何能遠超香港，並用實際案例解讀什麼樣的場所可以支持臨終患者「好走」。
推動社區「好走」–應有專業的醫護人員，深入的社區參與
當今的紓緩治療起源於英國，英國有超過兩百家醫院提供紓緩治療服務（Palliative Care），並且已經完全融入National Health Service（NHS），免費為市民提供護理。
英國的「臨終質素」全球排名第一，其中較突出的指標是充足的且受過專業訓練的紓緩治療醫護人員。據統計，英國約有三萬多位家庭醫生（General Practitioner, GP），負責不同地區的醫療服務，也是醫護第一站，病人第一個可去求助的是負責基層醫療的家庭醫生，如有問題，醫生會幫忙轉介至NHS轄下的醫院進行檢驗，再按需轉介到專科醫院進行手術[1]或是提供紓緩治療。除了有家庭醫生一直跟進患者狀況，還有作為醫護第二站的麥美倫護士（Macmillan Nurses），也是紓緩治療臨床專科護士，隸屬於NHS。據統計，英國已有超過四千名註冊麥美倫護士，最少有五年資歷，且從事過紓緩治療的專科照顧至少兩年[1]，負責為病人緩解病痛、提供心理輔導，還會與親友及其他醫護人員一起給出最合適的照顧方案。英國的醫護第三站是社康護士（Community Nurse），專門為不願待在醫院的病人提供持續的社區及居家照顧。除此之外，據統計，每年有超過十二萬名義工參與紓緩治療，約有二十二萬名患者接受紓緩治療服務。由此可見，在英國，大多數臨終患者不但可以得到政府設立的NHS保障，同時也能在「醫護三站」等醫護人員的緊密配合下，得到全人照顧。
然而，較不同於英國的是，在《經濟學人》「臨終質素」排名亞洲第一的台灣，其最突出的指標是「社區參與」，換言之，大部分市民均充分了解紓緩治療服務，並且社區中有足夠的資源提供服務。台灣健保署早於一九九六年開始為國民支付紓緩治療服務費，並陸續推動「社區安寧計畫」，除了有八十四家醫院提供「安寧居家照護」，還有超過一百二十所可以提供「社區安寧」[1]。台灣的紓緩治療特色在於社區參與，政府積極推動醫護培訓及公眾教育，讓私家診所及護理院的醫生、護士、社工等都參與社區照顧，為病人提供居家護理，舒緩患者病徵，數據亦顯示，台灣「在家」離世的比例與在醫院離世的相近，約有四成。值得一提的是，在台灣，除了政府機構，亦有宗教力量推動紓緩治療服務[1]。成立基金會推廣紓緩治療服務，支援醫院成立紓緩病房，給社區義工提供免費的教育培訓，甚至有佛教師給病人及親友提供心理輔導和精神支持，這些社會力量的參與以至於可以推動台灣全民積極參與推廣「紓緩治療」服務，促進落實「社區安寧」計畫。
營造「紓緩治療」空間特質：「居家護理」，「醫院服務」到「紓緩治療」
提到「紓緩治療」場所，在十九世紀末，人們的死亡主要發生在家中，二十世紀轉移到了醫院，二十一世紀「紓緩治療」融合「居家護理」服務 [2]，強調「場所」是實踐紓緩治療服務的關鍵要素，而「臨終質素」排名第一的英國，與亞洲第一的台灣，其「紓緩治療環境」也皆位於全球前幾名，「紓緩治療環境」也是決定「臨終質素」五大指標中權重最大之指標。
有最新研究提出指導評估「紓緩治療環境」的六個社會空間範疇，分別是位置語境、服務管理、公共空間、私人空間、過度空間，以及自然融合空間。也可以說，判斷一個場所是否適合進行「紓緩治療」，首先需要考慮到其位置是否有社會連通性、能否接觸自然景觀，以及關注是否有噪音、擠擁等會令人不適的問題，其次是能否給病人提供生動且友善的公共、半公共空間及個性化的私人空間，最後還要考量是否方便親友、義工及醫護人員使用。
綜觀全球的「紓緩治療」場所，大致可分為四類：「日間護理的紓緩治療機構」、「全天候提供紓緩治療服務的機構」、「設有專用床位的紓緩治療機構」及「附屬於醫院的紓緩治療中心」[2]。吉人吉事將用以下的實際案例帶領大家逐一了解這四種「場所」：
第一類「場所」：「日間護理的紓緩治療機構」– 提供日間照顧及護理服務，但不包含夜間服務，通常是由於患者白天沒有人照顧而需前往這類機構，往往不會配備專業的護理床位，並以打造社區型生活社交場所為主。
做得比較好的是，始於英國的機構Maggie's Centre，也是為癌症患者提供日間護理服務的機構，在英國以至於全球已有幾十所。這些中心的特色是為病人打造一個遠離醫院的庇護所，均是小尺度的建築，摒棄醫院裡陰暗沉寂的廊道與冰冷的燈光，配有精心設計的花園及像家一般的室內環境。其中位於曼徹斯特的中心Maggie's Cancer Centre Manchester，是一個充滿陽光和植物的一層樓建築，與周邊居民樓尺度相配，距離知名的醫院Christie Hospital僅幾分鐘路程。該中心也複合了多種功能，提供全面的軟性服務：生動的公共空間也是其核心空間，以木質暖色調為基底，除了有亮敞的廚房與一張巨大的餐桌，還有以木架作為支撐結構的玻璃屋頂，可允許充分的自然光透過；公共圖書館、健身房、戶外療癒花房及飲茶室等空間也滿足了不同使用者的日常生活及社交需求；另外，每個治療資訊室也均配有私人花園。該中心是一個熱情且友好的場所，給患者提供了如同家一般的明亮溫馨的環境。
第二類「場所」：「全天候提供紓緩治療服務的機構」– 除了日間照顧，也會提供夜間的紓緩治療服務，為需要二十四小時護理的病人，專門提供獨立病房或套間。
美國的一家社區臨終關懷所Sharon S. Richardson Community Hospice，其地理位置較遠離市區，宛如世外桃源。該中心的公共空間設有休息室，圖書館，兒童遊戲室，殘障人士專用水療中心，餐廳廚房，及教堂。除了公共空間以外，病人可享有專門為家庭而設計的私人套房，配有獨享露台，患者可直接從房間進入室外的花園。整個關懷所被自然景觀包圍，擁有流暢的戶外廊道，除了欣賞河流，還可以被充滿植物的花園療癒，給患者提供如同花園般的庇護所。
第三類「場所」：「設有專用床位的紓緩治療機構」– 除了提供全天候的紓緩治療服務，亦有專業的醫護團隊及床位，各種護理設施一應俱全。
位於城市邊緣的荷蘭療養所Hospice De Ark，其綠意盎然且悠然寧靜，這裡不僅提供設施齊全的紓緩病房，亦為社交活動及情感互動提供了場所。公共空間以溫暖的木質裝飾為基礎，配合暖調的家具，打造如自然一般的室內環境。除了公用的餐廳，長餐桌，藝術空間，教堂以外，每個病房亦有獨立的花園空間，同時可以自然湖泊盡收眼底。值得一提的是，該機構以一個圓柱形空間為中心，旨在打造精神空間，可以進行祈福祈禱，成為患者和親友的精神寄託。
第四類「場所」：「附屬於醫院的紓緩治療中心」– 這類場所是目前佔比最多的，亦是比較傳統的一類，由於其附屬於醫院，讓患者及其家屬可定期及方便地接受門診治療。
這裡以美國的機構Hospice LaGrange為例，附近除了有醫院Well Star Hospital提供急症門診外，亦有護老中心、教堂及學校等設施，社會連通性較高。該治療中心完全摒棄了傳統醫院及療養院的設計，以「微型住宅」為理念，圍繞一個中央庭院，展開四個住宅單元，每個單元配有四個病房、客廳、廚房餐廳、洗衣房、休息室等生活空間，滿足日常生活所需。戶外有一個圓形的花園，配有屏風及冥想空間。另外，這四個住宅單位並不完全分離，亦有重疊交融的空間給病人及親友聚集和交談。整間療養所以傳統的「家」為概念，以營造如在「家」一般溫暖的感覺。
死亡能否回歸「社區」或「家中」，讓臨終患者在熟悉的環境中「好走」？
數據顯示，英國每年超過五十萬人死亡，少過六成死在醫院，近兩成人在護理院，而約兩成人是在家離世 [1]；台灣每年約十六萬人死亡，更有超過四成人在家中離世；在香港，每年約有五萬人死亡，其中近九成都是死在醫院。然而，據最新研究調查顯示，近三成受訪者都偏向於在家善終，尤其是老年人，而不選擇「家中」作為死亡地點的個案，多數都是擔心家中沒有足夠的支援而讓家人困擾。
事實上，無論是醫院裡的「安寧病房」、獨立的「紓緩治療中心」、專業的「治療機構」或是「日間紓緩照顧中心」等等，其初衷都是想為臨終患者提供一個如「家」一般舒適、有安全感及歸屬感的空間，但往往由於場地限制、資金不足，及空間資源分配等不可控因素，並未如願讓臨終患者「好走」。誠然，「臨終質素」位於首位的英國，其專業的紓緩治療護理人員–「醫護三站」，成功讓臨終患者及親友安心於「社區」善終；台灣透過全方位的公眾教育，積極培養各個階層的護理人員深入社區以至於家中，全民推動「社區安寧」，支持患者在「在家」離世。儘管兩個地區還未做到完美，但都在引導市民積極面對死亡，讓患者如願「歸根」，死亡逐漸從「醫院」回歸「社區」及「家中」，臨終患者亦能在熟悉的場所「好走」。
註:
[1] 部分數據源於陳曉蕾《香港好走》系列圖書：《怎照顧》,《有選擇》,《死在香港見棺材》
Death is a universal yet deeply complex and heavy topic. To explore it more thoroughly, we’re presenting two series: “Saying Goodbye” and “Good Goodbye”. In the previous article, we examined the factors behind Hong Kong’s relatively low global ranking in end-of-life care. Key issues included a lack of capacity to provide palliative care services, limited public awareness and engagement, and a shortage of trained healthcare professionals in this field.
In this article, we will delve deeper into how policies and spatial qualities have propelled the UK to the top of global rankings and helped Taiwan become the leader in Asia. Through case studies, we will explore what kinds of environments can truly support terminally ill patients in finding peace and dignity during their final journey.
Advancing Community-Based Palliative Care: The Role of Professionals and Community Engagement
UK’s Team-Based Holistic Palliative Care Services
Modern palliative care originated in the UK, where over 200 hospitals provide such services, fully integrated into the National Health Service (NHS). These services are free of charge, ensuring equitable access for all citizens.
The UK ranks first globally in the "Quality of Death Index" largely due to its well-trained healthcare workforce specialising in palliative care. The anchor of the system are general practitioners (GPs), who form the first point of contact for patients. With over 30,000 GPs across the UK, they oversee primary care in local communities. When necessary, they refer patients to NHS hospitals for further tests, surgeries [1], or palliative care.
Beyond GPs, Macmillan Nurses are clinical specialists in palliative care who also operate under the NHS. There are more than 4,000 registered Macmillan Nurses in the UK, each with at least five years of experience, including two years in palliative care [1]. These nurses focus on alleviating pain, providing emotional support, and working with families and other healthcare professionals to create tailored care plans.
The third layer involves Community Nurses, who provide ongoing home-based care for patients who prefer not to remain in hospitals. Additionally, more than 120,000 volunteers participate annually in palliative care efforts, supporting over 220,000 patients each year. This team-based, seamless integration of NHS services, professional expertise, and volunteer efforts ensures that terminally ill patients receive holistic care across all stages of their journey.
Taiwan’s Lesson in Public Engagement and Resource Allocation
In contrast to the UK, Taiwan, which ranks first in Asia on the "Quality of Death Index," excels in community engagement. Public awareness of palliative care is high, and community resources are abundant.
Since 1996, Taiwan’s National Health Insurance (NHI) program has covered the costs of palliative care services, making them accessible to all citizens. The government has also introduced the “Community Palliative Care Program”, which includes home-based care provided by 84 hospitals and over 120 community-based facilities [1].
A defining feature of Taiwan’s approach is its strong emphasis on community involvement. Through government-led training programs and public education campaigns, private clinics, nursing homes, and social workers have been mobilised to deliver home-based care. These efforts focus on alleviating patients’ symptoms, ensuring patients receive care in the comfort of their homes. As a result, about 40% of deaths in Taiwan occur at home, a rate comparable to hospital deaths.
It is worth mentioning that religious organisations also play a significant role in Taiwan’s palliative care landscape [1].Various foundations support hospitals in establishing palliative care wards, offer free training programs for community volunteers, and provide psychological and spiritual counseling for patients and their families. Buddhist organisations, for example, not only assist with practical care but also offer emotional and spiritual guidance to help families cope with loss. This synergy between government programs, healthcare professionals, and social and religious groups has fostered widespread public participation in palliative care initiatives, bringing the “Community Palliative Care Program” to life.
Creating Ideal Spaces for Palliative Care: From Home Care to Specialised Centers
The evolution of palliative care spaces reflects broader social and cultural shifts. In the late 19th century, most deaths occurred at home. By the 20th century, this shifted to hospitals. Today, in the 21st century, palliative care integrates home care services [2], emphasising the importance of "space" as a key element in delivering quality care. Notably, the UK and Taiwan, ranked first globally and in Asia respectively for end-of-life care quality, also rank among the top in the world for their palliative care environments. The "palliative care environment" is one of the five key indicators in determining quality of death, carrying significant weight.
Recent research identifies six socio-spatial dimensions that guide the evaluation of palliative care environments: locational contexts; service administration & management; common spaces; private spaces; in-between spaces; and nature-integrated spaces. An ideal palliative care space should be socially connected, accessible to natural scenery, and free from noise or overcrowding. It should offer lively and welcoming public and semi-public areas, personalised private spaces for patients, and convenient access for family, volunteers, and healthcare providers.
Globally, palliative care facilities can generally be categorised into four types [2]:
Day care palliative centers providing daytime services;
24-hour residential facilities offering round-the-clock care;
Facilities with dedicated palliative care beds and specialised teams;
Hospital-affiliated palliative care centers offering outpatient services alongside hospital care.
Below are real-world examples of each type of facility:
Type 1: Day care palliative centers providing daytime services
These facilities provide daytime care but do not offer overnight accommodations. Patients typically visit during the day when family caregivers are unavailable. Such centers rarely equip professional medical beds, focusing instead on creating vibrant community-oriented social spaces.
A standout example is Maggie’s Centres, originally established in the UK to provide non-clinical daytime support for cancer patients. Now with dozens of locations worldwide, Maggie’s Centres are designed to feel like sanctuaries away from the clinical atmosphere of hospitals. These small-scale buildings feature bright, home-like interiors and carefully designed gardens.
For instance, Maggie’s Cancer Centre in Manchester is a one-story structure filled with sunlight and greenery, situated just minutes from Christie Hospital. The center combines multiple functions, offering lively and welcoming public spaces as its core. Warm wood tones dominate the design, with features like a bright kitchen, a large communal dining table, and a glass-roofed atrium that floods the interior with natural light. Patients can also access a library, fitness room, outdoor healing garden, and tea room. Each consultation room even has its own private garden. The design creates a warm and friendly environment, providing patients with a bright, homely refuge.
Type 2: 24-hour residential facilities offering round-the-clock care
These facilities provide both daytime and overnight care, catering to patients who require round-the-clock support. They often include private rooms or suites designed for patients and their families.
An example is Sharon S. Richardson Community Hospice in the United States. Located in a serene, rural setting far from urban noise, the hospice feels like a tranquil retreat. Its public spaces include a lounge, library, children's playroom, disability-friendly spa, dining facilities, and a chapel. Patients enjoy family-designed private suites with their own terraces, allowing direct access to outdoor gardens. Surrounded by natural landscapes, the hospice features flowing outdoor walkways and gardens that overlook rivers and lush greenery, offering a peaceful and healing environment.
Type 3: Facilities with dedicated palliative care beds and specialised teams
These centers provide comprehensive palliative care with dedicated medical beds, professional healthcare teams, and fully equipped facilities.
One notable example is Hospice De Ark in the Netherlands, located on the outskirts of a city. The hospice is surrounded by greenery, offering tranquility and a strong connection to nature. It provides fully equipped palliative care rooms while also offering spaces for social and emotional interaction. Warm wood tones and natural textures dominate the interiors, complemented by soft lighting and comfortable furnishings. In addition to shared spaces like a restaurant, long communal tables, art rooms, and a chapel, each patient room features a private garden and views of a serene lake.
A unique feature is a central, cylindrical spiritual space designed for prayer and meditation. This space serves as a place of solace and emotional support for patients and their loved ones, reinforcing the hospice’s focus on holistic care.
Type 4: Hospital-affiliated palliative care centers offering outpatient services alongside hospital care
This is the most common type of palliative care facility. These centers are attached to hospitals, allowing patients and their families to conveniently access outpatient and emergency services.
A prominent example is the Hospice LaGrange in the US. Located near WellStar Hospital, this center benefits from high social connectivity, with nearby nursing homes, churches, and schools. The facility is designed around the concept of a "micro-home," with four residential units arranged around a central courtyard. Each unit contains four patient rooms, a living room, a kitchen and dining area, laundry facilities, and a lounge.
The outdoor space includes a circular garden, meditation areas, and screened-off seating for privacy. While the residential units are distinct, they also include overlapping common spaces to encourage interaction among patients, families, and caregivers. The design prioritises warmth and comfort, creating a home-like environment for patients.
Returning to "Community" or "Home": Providing Comfort for Terminal Patients in Familiar Surroundings
In the UK, over 500,000 people pass away each year. Less than 60% of these deaths occur in hospitals, while around 20% take place in care homes and another 20% at home [1]. In Taiwan, with approximately 160,000 deaths annually, over 40% occur at home. In contrast, Hong Kong sees around 50,000 deaths per year, with nearly 90% happening in hospitals.
Interestingly, recent studies in Hong Kong reveal that nearly 30% of respondents would prefer to die at home, particularly among elderly. However, many who avoid choosing "home" as their place of death cite concerns about insufficient support and the burden it might place on their families.
Whether it is hospital-based palliative care wards, independent hospice centers, professional care facilities, or day care centers, the goal of each is to provide terminal patients with a space that feels as comfortable, safe, and familiar as "home." Yet due to limitations such as funding shortages, space constraints, and uneven resource distribution, these aspirations are not always fully realised.
The UK, ranked first globally in "Quality of Death Index" demonstrates how professional palliative care systems—bolstered by a layered approach involving general practitioners, Macmillan nurses, and community nurses—enable patients to die peacefully within their communities. Taiwan, meanwhile, has achieved significant success through comprehensive public education and extensive training for caregivers at all levels, empowering them to deliver care directly to patients in their homes and communities. This widespread effort, known as "community palliative care," supports patients who wish to pass away at home.
While neither the UK nor Taiwan has perfected their systems, both regions are taking steps to help citizens confront death with dignity and clarity. By fostering supportive environments, they enable patients to return to their roots and pass away in familiar surroundings.
Remarks:
[1] Data from the book series 《香港好走》by Leila Chan ：《怎照顧》,《有選擇》,《死在香港見棺材》
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