中英临终关怀比较研究
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摘要
“临终关怀”来源于人类对年老体衰者或者病入膏肓者的关怀和供养,在中西方都有悠久的历史。传统的临终关怀服务主要由政府或教会等慈善机构提供,体现为对年老体衰或者穷苦无依者的救助,并不具备医疗功能。
现代临终关怀的概念形成于20世纪,强调人有选择“优死”的权力,强调对临终者身体、心理和精神的全方位关怀和照护,并对临终者家属开展心理抚慰和居丧照护。20世纪60年代,英国的西塞丽·桑德斯创办圣克里斯托弗临终关怀院,标志着现代临终关怀运动开始兴起,之后在美国、法国、加拿大及香港和台湾等60多个国家和地区相继开展起来。随着临终关怀运动在世界上越来越广泛深入地开展,临终关怀运动发展成为一个新的科学研究领域,并逐渐形成一门新兴交叉学科——临终关怀学,以晚期病人的生理、心理特点为主要研究对象,旨在保障临终病人的生存质量,不再将延长病人的存活时间作为首要的医疗目标。
临终关怀服务的基本目标是为晚期病人及其家属提供全面照护,具体来说,就是通过缓解或者消除病人的疼痛等不适症状来减轻病人面对死亡时的心理恐惧和焦虑,为其提供心理抚慰和精神支持；同时将病人家属纳入到服务对象之中,提供哀伤抚慰和丧亲服务,从而使其尽快摆脱失去亲人的心理阴影,回归正常生活。服务对象的确定既不是依据患者所患疾病的类型,也不是依据其年龄或性别等生理性特征,而是根据病人生命的状况和发展趋势。“临终病人”是指所患疾病在目前医疗条件和医疗水平下已经没有治愈希望、病情不断恶化、并且预期存活时间不超过6个月的病人。临终关怀学所涉及学科较多,与临床医学、护理学、心理学、社会学、伦理学和宗教学的关系密切,交叉明显。按照具体照护方式的不同,临终关怀学又细分为“姑息医学”(或称“善终医学”)、“临终护理学”,“临终心理学”和“临终社会学”等分支学科。因此,临终关怀服务不是单纯的医疗和护理服务,并且还包含心理辅导与咨询、生死哲学、死亡教育、健康教育、精神和社会支援、居丧照护等方面的综合性服务,体现了医疗保健服务高度专业化和全科化的统一。
从历时发展来看,临终关怀的发展经历了三个阶段：(一)早期具有慈善性质的“济岔院”或者教会医院;(二)现代临终关怀运动的兴起,临终关怀机构的创办以及初期发展；(三)临终关怀服务和各国医疗保健体系的接轨以及整合。经过半个世纪的发展,临终关怀实践和研究都获得了重要的进展。不同国家根据各自的情况对临终关怀的具体服务模式和组织模式进行了探索和实践,服务机构类型呈现出多样化的特点。总体看来,最常见的有以下三种机构组织形式：独立临终关怀院；附设于综合医院或其他综合性医疗保健机构的临终关怀病区或者病房；家庭病床等居家临终关怀服务。从世界范围来看,虽然临终关怀的概念、纳入标准和服务标准具有国际化的特点,但是临终关怀的服务方式却有显著的本土化特征。例如,英国的临终关怀服务主要采用住院服务的形式,包括全日住院和日间住院两类；美国采用的是家庭临终关怀服务为主、住院服务为辅的服务模式。相比之下,中国临终关怀服务大多在综合性医院、专科医院和养老院的专设病区或病房中开展,基本没有独立的临终关怀机构。一个国家或地区临终关怀服务的基本模式、发展水平和服务质量等受到多种因素的影响,一般来看,决定或制约专业水平和服务质量的因素有：经济发展状况、医疗卫生制度、文化传统和道德习俗等。西方发达国家临终关怀服务总体发展水平高、设施齐全、覆盖面广,经济落后地区总体水平较低。
英国是世界上最早开展临终关怀服务的国家,历史悠久,经验丰富。英国临终关怀的基本特点是服务机构数量多、覆盖广、专业水平较高、普通民众参与程度高,已经进入良性化的运转轨道,较好地体现了临终关怀和医疗保险的结合,从根本上解决了经费问题。英国等国家的临终关怀已形成产业,成为国家医疗体系的一个有机成分,能够为人们的生存质量、死亡前照护质量和死亡质量提供重要的保障。
相比之下,中国目前临终关怀面临两难的选择。一方面,中国传统文化中“临终”和“死亡”都是禁忌话题,“临终关怀”难以得到普通民众的认可。加之卫生主管部门对此行业缺乏足够的重视,在医疗费用等方面没有给予相应的扶持,直接造成了中国临终关怀事业的严重滞后。因而,中国临终关怀处于较低水平,机构少、规模小、运营困难,没有形成完整的体系且缺乏严格的行业规范。另一方面,中国每年大约有160万人死于癌症,其中60%以上晚期癌症患者都会伴有不同程度的癌痛；然而,每年接受各种姑息医疗和宁养服务的患者估计小足5万人。绝大多数患者临终之际仍旧在接受各种各样的检查和治疗,不仅延长了患者的痛苦,加重了家庭的经济负担,而且对医疗资源造成了巨大的浪费。低水平的死亡质量与中国经济发展非常不协调,与人们追求高质量的生活相悖。除此之外,多种因素决定了今后中国对临终关怀具有巨大需求,例如人口老龄化的加速度发展以及城乡“空巢”老人比例的快速上升,所以,中国民众对临终关怀的潜在需求难以估量。
“临终”是每一位社会成员迟早必经的生命阶段,所以,临终关怀一项关系到社会所有成员的重大问题。基于这种考虑,本研究着眼于全面考察中国临终关怀的发展,重点针对当前中国临终关怀事业的困难,通过分析、对比国外成功经验、立足于中国历史与现实,探索有益于中国临终关怀事业的运营模式。研究方法采用的是比较研究,以现代临终关怀的发源地英国为代表,目的是在更加广阔的视野下梳理全世界范围内临终关怀的兴起和发展历史,通过对比探讨中国临终关怀的问题,明确中国临终关怀目前所处的水平,以便于就具体问题展开讨论。具体的研究方法以文献整理分析、问卷调查、实地考察和深度访谈等为主；对比分析内容涉及现代临终关怀的起源、背景、服务对象及纳入标准、服务内容、具体运作模式等方面。
本文的内容包括以下七个部分：
第一部分为前言。针对中国临终关怀遇到的严峻挑战以及民众对临终关怀的实际需求之间的矛盾,提出本研究拟考察的重点问题,明确研究的具体方法,阐明该研究的理论和现实意义。
第二部分是临终关怀的概念、来源及研究历史与现状。该部分首先对“临终关怀”的涵义以及概念化过程加以梳理,强调临终关怀的首要服务目标是“优死”和“尊严死”,即提高临终病人的末期生存质理,充分体现对其尊严的尊重。另一方面,临终关怀尊重病人的自然生理变化,不采用任何积极手段极速病人的死亡。镇痛研究的进展为缓解临终病人的病痛提供了技术支持；“整体疼痛”概念的确立为临终病人的全方位照护提供了理论依据：,为现代临终关怀的兴起与发展奠定了基础。临终关怀研究分为理论研究和实践研究两大范畴,从不同的侧面为临终关怀实践提供参考,从而能够更好地为临终者及其家人服务,同时也使医护人员实现精神和心智的双重成长。大陆的临终关怀研究中介绍性和借鉴性研究居多,部分学者已经开始有意识地立足于中国的现实,探索本土化的临终关怀模式。
第三部分是临终关怀的兴起及其背景比较研究。文章对临终关怀的历史进行了较为全面的梳理,着眼于临终关怀服务从慈善济贫机构向医疗服务机构的转变,在历时研究的视角下考察现代临终关怀的兴起与发展,为对比中英临终关怀兴起及其背景提供宏观全面的研究背景。
第四部分是纳入标准和服务内容的比较研究。英国的临终关怀事业是临终照护传统、传统医疗机构和现代医学发展相结合的结果,顺应了人们对死亡的新认识、满足了临终者的实际需求。中国临终关怀的服务模式基本借鉴自英国,但是中国传统的生死观与临终关怀所主张的“优死”存在较大差异,虽然这种关怀形式为中国社会所急需,但是其中核心理念的接受尚缺乏群众基础,成为中国临终关怀发展的障碍。
第五部分是中英临终关怀具体运营模式的比较研究,重点考察所有制形式、资金来源、经营服务方式、监管体制等。英国临终关怀发展完善的重要保证是国家层面的政策性支持,广泛的群众参与以及多元化的经营模式。相比之下,这正是中国临终关怀所欠缺的发展动力。根据中国目前的状况和英国等西方国家的发展历程来看,这些也是中国临终关怀实现进一步发展应该借鉴且能够借鉴的。
第六部分是中国临终关怀而临的困境以及英国等发达国家临终关怀模式对我国的启示。国内学者之前提出的几种实践模式是经过认真论证且行之有效的,但是随着时间的推移和新社会问题的出现,需要对其进行补允修订。笔者通过借鉴英美等发达国家的服务模式,针对我国面的困难以及当前存在问题,提出了“立体化人文关怀模式”的基本构想。
第七部分是结语,对中国临终关怀事业未来的发展进行展望。中国临终关怀最重要的是立足中国实际,将外来经验本土化。只有充分评估自己的问题,在比较的视野下取长补短,并适时调整改进运营模式,才能使得临终关怀获得长足的发展、造福于中国大众。当然,“立体化临终关怀模式”尽管已经在小范围内实施,但这一构想主要是一种理论探讨,其初衷是为临终关怀实践提供些新的思路,具体的可行性还有待于在实践中检验、调整和不断改进。
The concept of "hospice" is derived from humanitarian care for the elderly, the physically weak or the terminally ill. It has a long history in the West and China. Traditional hospice is mainly organized and operated by government or churches and other charities, whose major responsibility was to rescue and help the old, the feeble, the poor or the helpless. Their medical function was not highlighted until modern times.
The concept of "modern hospice" was formed in the20th century to stress people's right to choose "good death". Its aim is to perform all-round physical, psychological and spiritual concern and care for the dying or the terminally ill, and to provide psychological comfort and bereavement care to the families of the patients. In the1960s, Dr. Cicely Sanders founded St. Christopher's Hospice in London, which marks the rise of the modern hospice movement. Afterwards, more than60countries and regions, including the United States, France, Canada, Hong Kong and Taiwan, followed the example and have been carrying out this cause one after another. Up to now, with the emergence and development of hospice movement in ever-increasing numbers of countries and regions, hospice has become a new field of scientific research and has gradually developed into a new interdisciplinary program, taking physiological and psychological characteristics of the terminally ill as the main object of study. It is designed to secure a good quality of life for the terminally ill, no longer destined to prolong the patient's survival time as the primary goal of care.
The basic target of hospice is to provide comprehensive care for the terminally ill and their families, specifically, to alleviate or eliminate the patient's pain and other symptoms, reduce the patient's psychological stress and anxiety in the face of death, and to provide psychological comfort and spiritual support. Moreover, it has also included the patient's family as part of the object of care, to provide grief soothe and bereavement services, to help get rid of the psychological stress, soon as possible, brought about by the illness and consequent death of their beloved ones. The definition and determination of the service object exhibits obvious differences from those of traditional medicine. It is not based on the type of diseases---patients are not categorized according to the physiological characteristics such as the type of diseases, the specific organs affected by the disease, or other biological features of patients, like age or gender. Instead, it is defined by the trend and progress of the disease in relation to the patient's time of survival. As a result,"the terminally ill" refers to those whose disease has no cure under the present context of medical development; furthermore, the condition of the patient is continue deteriorating or worsening, and his expected survival time is no longer than6months. The study and research on hospice care involves physical, psychological and spiritual care and concern for both the patient and his family members. It covers a wide range of disciplines and fields---clinical medicine, nursing, psychology, sociology, ethics and religion. It is, in this sense, a typical interdisciplinary course. According to the specific methods employed in the care and the categories of care, hospice care can be further subdivided into "palliative medicine","palliative care","palliative psychology","palliative sociology" and other relevant branches. Hospice care, therefore, is not simply a medical or nursing service; instead, it is comprehensive as to include counseling and consulting, philosophy of life and death, death education, health education, spiritual and social support, and bereavement care, to reflect the highly specialized and generally unified health care services.
In terms of chronological evolution, hospice has gone through three stages:early sanctuary or church hospital, the rise of modern hospice---its establishment and early development, and the reconciliation between hospice care and national health insurance system. With a history of half a century, both the practice in and the research on hospice care have made important progresses. Different countries have carried out various service modes and have had varied organizations, according to their specific situations of hospice care. Generally, the most common types include the following three:independent hospice (hospital), hospice wards affiliated to comprehensive hospital or other medical institutions, and home hospice care services such as domestic sickbeds or day care. On a world scale, while the concept of hospice care, inclusion criteria and service evaluation are judged with internationally accepted and acknowledged standards, the localization of hospice service mode is significant for attention. For example, in the Great Britain, hospice service is carried out mainly as part of inpatient services, specifically hospitalization and day care. In the U.S., however, a home-based hospice care is given priority and prefered, while inpatient service is not that well-received. In comparison, hospice care in China is mostly provided in comprehensive hospitals, or specially established wards in specialized hospitals or care centers. Independent hospice is pretty sparse. Generally, speaking, several factors determine the level, quality of hospice care in any given country or region, namely, economic development, cultural heritage and tradition, moral codes and customs, and medical and heath care system, etc. The overall development in advanced Western countries is generally technically superior to, better equipped and more widely inclusive than that in third-world countries.
Great Britain is the birthplace of modern hospice. It has been a model in respect to the long history of and rich experience in hospice care. British hospice is characteristic of large number, wide coverage, advanced technology, admirable professionalism and common participation on part of ordinary people. The hospice care has been in operaiton in a malignant cycle. More importantly, British development exemplifies a good combination of hospice and health care system, which has solved the problem of expenditure. In a word, hospice in such countries as Great Britain has been in efficient operation as an indispensable part of national medical and health care system, to secure good quality of existence, satisfactory nursing before death and a death with dignity.
In comparison, China is now in dilemma in regard to the development of its hospice care. On one hand, traditional Chinese culture considers "being terminally ill" or "incurably ill", or "death" as a taboo. Hospice, as closely related to "death" can not be easily accepted by people. In addition, medical authorities have yet attached attention and importance to this cause, and are thus reluctant to provide funds to promote the development. As a result, hospice care in China is still at a lower level, and the existent hospices are now operating on a smaller scale, in smaller quantity and with more financial pressures, without any scientific evaluation system or consistent technical standards. On the other hand, around1.5million people die of cancer every year, over60%of whom have to suffer from pain in their terminal stages. However, it is estimated the number of people who could have some access to certain type of hospice care is only around20,000. Most of the terminally ill are still undergoing all kinds of examinations and therapies, only to prolong the sufferings of the patients, worsen the financial burden to the family and to waste the comparatively scarce medical resources. The sharp contrast between the two just highlights the poorer "death quality" of Chinese people, which cannot conform to the economic development of the country and exemplifies a violation against people's pursuit for a life of high quality. In addition, more factors will determine a big market potential for hospice care, for instance, the ever accelerating aging of Chinese population, and the increasing number of elderly people who are now living by themselves without the company of their children. Predictably. Chinese people will have an ever increasing demand for hospice service.
Hospice is fundamental to concern almost every member in the society."Terminally ill" is an unavoidable stage to be experienced by every member of a society, and the issue is thus consequently important. This research is carried out in the light of the importance of hospice. It is designed to provide a comprehensive review of Chinese hospice, to highlight its problems and challenges in a comparative perspective, and then to tentatively explore more suitable passways on the basis of Chinese history and reality. The author is expecting to provde some alternative view and useful information for decision-makers and service providers, to further promote the development of China's hospice. The basic methodology employed in the study is comparison, with Great Britain, the cradle of modern hospice, as reference, with an aim to provide a wider view in which the level and status of Chinese hospice can be understood. Shortages can be clarified when in comparison, and specific problems can also be explored. Methodology of the study includes readings, classifications and analyses of documents and literature, questionnaire, investigation and interviews. The contents of comparison involve the origin, background, objects of service, contents of service and ways of operation.
This dissertation is composed of the following seven parts.
The first part is the introduction. It is designed to tackle the contradiction between the great challenges for China's hospice and the demand for the service on the part of people. In this way, the central problem is posed. Basic methodology is also being introduced, and the theoretical and practical significance of the study is highlighted. This part mainly puts forward the problems for study, discusses the theoretical and practical significance of the research, and elaborates the research background, objectives and content.
The second part involves the definition, origin and literature review of hospice. The connotation and conceptualization of hospice was studied chronologically. The prime purpose of hospice is to secure a "good death" or a "death with dignity", with an aim to improve the quality of life, instead of simply prolonging his survival. This humanitarian principle fully shows the respect for the dignity of the terminally ill. At the same time, hospice care takes into consideration the natural physiological process of the patient, without taking any aggressive measures to speed up ot slow down the death of the patient. It is in this sense that hospice differs from euthanasia. Since hospice is directly and closely related to the quality of death and the quality of nursing prior to death, theories and practices in these relevant fields just provide technical prerequisites for the emergence of modern hospice. The progress in pain killing makes it technically possible to kill or reduce pain for the patient. The establishment of "total pain" theorizes and justifies the multiple nursings for patients, which in return nurtures the development of hospice. Research on hospice covers two ranges of study: theoretical study and medical practice. However, some issues are common to both, such as the psychological condition of the terminally ill, to provide alternative perspectives for the reference of service providers, which in turn helps to improve the quality of service, and helps to promote the psychological and spiritual growth of service providers. The majority of researches carried out in Mainland China are introductory and explanatory, but some scholars have already realized the importance to base their study on the reality of China, and are thus researching on the localization of hospice service modes.
The third part is the comparative study on the background of the emergence of hospice between the U.K.. and China. The dissertation gives a detailed study on the history of hospice, focuses on the transformation from charity workhouse to the medical care institutions, reviews the rise and development of modern hospice in a historical perspective, and provides an macroscopical and comprehensive background for the contrast of the background, inclusion criteria and service contents of the hospice in these two countries.
The fourth part compares the inclusion and the content of hospice. British hospice is the production of caring tradition of the terminally ill, the traditional medical institutions and the development of modern medicine whose development conforms to the new understanding of death, to meet the actual needs of the terminally ill. Chinese hospice service model is basically borrowed from the United Kingdom. However, it shows a big difference in regard to the traditional conception of death and "good death" advocated by hospice. Although Chinese society is in great need of the hospice service, ordinary people are yet to be well prepared for the acceptance of the fundamental concepts, which is the major difficulty for the further development of Chinese hospice.
The fifth part is a comparative study of operating models of hospice between The U.K. and China, with the specific emphasis on the form of ownership, sources of funds, service models and the supervision mechanism. The important guarantee for the development and perfection of British hospice comes from the support from the national policy, the extensive mass participation and the encouragement of diversified operating models. In contrast, this is exactly what Chinese hospice lacks. According to China's current situation and the development of the United Kingdom and other Western countries, Chinese hospice should learn and be able to learn these strong points in order to achieve further development.
The sixth part discusses the dilemma of Chinese hospice and the inspiration from the hospice care models in such developed countries like Great Britain. Basically, the practical models designed by other scholars have been based on serious consideration and scientific study to have provided important theoretical guidance. However, with the lapse of time and the emergence of new social problems, they need supplement and amendments. By reviewing the models in Britain and other developed countries, the author puts forward the basic proposition of "multi-dimensional humanistic care model" in regard to the difficulties and current problems in China.
The seventh part is the conclusion and the anticipation of future development of hospice in China. It is essential for Chinese hospice to get localized based on the "borrowed" experience. Only under the sufficient assessment of current problems can we adopt others'strong points while overcoming our weak points, adjust and improve the operating models and gain long-term development, to enable hospice to benefit Chinese people. Surely, the "multi-dimensional humanistic care model" has been put in practice in some dimensions, but it is mainly a theoretical discussion. The aim is to provide some new approaches for hospice practice, and the feasibility of the model still needs inspection, adjustment and improvement in practice.
现代临终关怀的概念形成于20世纪,强调人有选择“优死”的权力,强调对临终者身体、心理和精神的全方位关怀和照护,并对临终者家属开展心理抚慰和居丧照护。20世纪60年代,英国的西塞丽·桑德斯创办圣克里斯托弗临终关怀院,标志着现代临终关怀运动开始兴起,之后在美国、法国、加拿大及香港和台湾等60多个国家和地区相继开展起来。随着临终关怀运动在世界上越来越广泛深入地开展,临终关怀运动发展成为一个新的科学研究领域,并逐渐形成一门新兴交叉学科——临终关怀学,以晚期病人的生理、心理特点为主要研究对象,旨在保障临终病人的生存质量,不再将延长病人的存活时间作为首要的医疗目标。
临终关怀服务的基本目标是为晚期病人及其家属提供全面照护,具体来说,就是通过缓解或者消除病人的疼痛等不适症状来减轻病人面对死亡时的心理恐惧和焦虑,为其提供心理抚慰和精神支持；同时将病人家属纳入到服务对象之中,提供哀伤抚慰和丧亲服务,从而使其尽快摆脱失去亲人的心理阴影,回归正常生活。服务对象的确定既不是依据患者所患疾病的类型,也不是依据其年龄或性别等生理性特征,而是根据病人生命的状况和发展趋势。“临终病人”是指所患疾病在目前医疗条件和医疗水平下已经没有治愈希望、病情不断恶化、并且预期存活时间不超过6个月的病人。临终关怀学所涉及学科较多,与临床医学、护理学、心理学、社会学、伦理学和宗教学的关系密切,交叉明显。按照具体照护方式的不同,临终关怀学又细分为“姑息医学”(或称“善终医学”)、“临终护理学”,“临终心理学”和“临终社会学”等分支学科。因此,临终关怀服务不是单纯的医疗和护理服务,并且还包含心理辅导与咨询、生死哲学、死亡教育、健康教育、精神和社会支援、居丧照护等方面的综合性服务,体现了医疗保健服务高度专业化和全科化的统一。
从历时发展来看,临终关怀的发展经历了三个阶段：(一)早期具有慈善性质的“济岔院”或者教会医院;(二)现代临终关怀运动的兴起,临终关怀机构的创办以及初期发展；(三)临终关怀服务和各国医疗保健体系的接轨以及整合。经过半个世纪的发展,临终关怀实践和研究都获得了重要的进展。不同国家根据各自的情况对临终关怀的具体服务模式和组织模式进行了探索和实践,服务机构类型呈现出多样化的特点。总体看来,最常见的有以下三种机构组织形式：独立临终关怀院；附设于综合医院或其他综合性医疗保健机构的临终关怀病区或者病房；家庭病床等居家临终关怀服务。从世界范围来看,虽然临终关怀的概念、纳入标准和服务标准具有国际化的特点,但是临终关怀的服务方式却有显著的本土化特征。例如,英国的临终关怀服务主要采用住院服务的形式,包括全日住院和日间住院两类；美国采用的是家庭临终关怀服务为主、住院服务为辅的服务模式。相比之下,中国临终关怀服务大多在综合性医院、专科医院和养老院的专设病区或病房中开展,基本没有独立的临终关怀机构。一个国家或地区临终关怀服务的基本模式、发展水平和服务质量等受到多种因素的影响,一般来看,决定或制约专业水平和服务质量的因素有：经济发展状况、医疗卫生制度、文化传统和道德习俗等。西方发达国家临终关怀服务总体发展水平高、设施齐全、覆盖面广,经济落后地区总体水平较低。
英国是世界上最早开展临终关怀服务的国家,历史悠久,经验丰富。英国临终关怀的基本特点是服务机构数量多、覆盖广、专业水平较高、普通民众参与程度高,已经进入良性化的运转轨道,较好地体现了临终关怀和医疗保险的结合,从根本上解决了经费问题。英国等国家的临终关怀已形成产业,成为国家医疗体系的一个有机成分,能够为人们的生存质量、死亡前照护质量和死亡质量提供重要的保障。
相比之下,中国目前临终关怀面临两难的选择。一方面,中国传统文化中“临终”和“死亡”都是禁忌话题,“临终关怀”难以得到普通民众的认可。加之卫生主管部门对此行业缺乏足够的重视,在医疗费用等方面没有给予相应的扶持,直接造成了中国临终关怀事业的严重滞后。因而,中国临终关怀处于较低水平,机构少、规模小、运营困难,没有形成完整的体系且缺乏严格的行业规范。另一方面,中国每年大约有160万人死于癌症,其中60%以上晚期癌症患者都会伴有不同程度的癌痛；然而,每年接受各种姑息医疗和宁养服务的患者估计小足5万人。绝大多数患者临终之际仍旧在接受各种各样的检查和治疗,不仅延长了患者的痛苦,加重了家庭的经济负担,而且对医疗资源造成了巨大的浪费。低水平的死亡质量与中国经济发展非常不协调,与人们追求高质量的生活相悖。除此之外,多种因素决定了今后中国对临终关怀具有巨大需求,例如人口老龄化的加速度发展以及城乡“空巢”老人比例的快速上升,所以,中国民众对临终关怀的潜在需求难以估量。
“临终”是每一位社会成员迟早必经的生命阶段,所以,临终关怀一项关系到社会所有成员的重大问题。基于这种考虑,本研究着眼于全面考察中国临终关怀的发展,重点针对当前中国临终关怀事业的困难,通过分析、对比国外成功经验、立足于中国历史与现实,探索有益于中国临终关怀事业的运营模式。研究方法采用的是比较研究,以现代临终关怀的发源地英国为代表,目的是在更加广阔的视野下梳理全世界范围内临终关怀的兴起和发展历史,通过对比探讨中国临终关怀的问题,明确中国临终关怀目前所处的水平,以便于就具体问题展开讨论。具体的研究方法以文献整理分析、问卷调查、实地考察和深度访谈等为主；对比分析内容涉及现代临终关怀的起源、背景、服务对象及纳入标准、服务内容、具体运作模式等方面。
本文的内容包括以下七个部分：
第一部分为前言。针对中国临终关怀遇到的严峻挑战以及民众对临终关怀的实际需求之间的矛盾,提出本研究拟考察的重点问题,明确研究的具体方法,阐明该研究的理论和现实意义。
第二部分是临终关怀的概念、来源及研究历史与现状。该部分首先对“临终关怀”的涵义以及概念化过程加以梳理,强调临终关怀的首要服务目标是“优死”和“尊严死”,即提高临终病人的末期生存质理,充分体现对其尊严的尊重。另一方面,临终关怀尊重病人的自然生理变化,不采用任何积极手段极速病人的死亡。镇痛研究的进展为缓解临终病人的病痛提供了技术支持；“整体疼痛”概念的确立为临终病人的全方位照护提供了理论依据：,为现代临终关怀的兴起与发展奠定了基础。临终关怀研究分为理论研究和实践研究两大范畴,从不同的侧面为临终关怀实践提供参考,从而能够更好地为临终者及其家人服务,同时也使医护人员实现精神和心智的双重成长。大陆的临终关怀研究中介绍性和借鉴性研究居多,部分学者已经开始有意识地立足于中国的现实,探索本土化的临终关怀模式。
第三部分是临终关怀的兴起及其背景比较研究。文章对临终关怀的历史进行了较为全面的梳理,着眼于临终关怀服务从慈善济贫机构向医疗服务机构的转变,在历时研究的视角下考察现代临终关怀的兴起与发展,为对比中英临终关怀兴起及其背景提供宏观全面的研究背景。
第四部分是纳入标准和服务内容的比较研究。英国的临终关怀事业是临终照护传统、传统医疗机构和现代医学发展相结合的结果,顺应了人们对死亡的新认识、满足了临终者的实际需求。中国临终关怀的服务模式基本借鉴自英国,但是中国传统的生死观与临终关怀所主张的“优死”存在较大差异,虽然这种关怀形式为中国社会所急需,但是其中核心理念的接受尚缺乏群众基础,成为中国临终关怀发展的障碍。
第五部分是中英临终关怀具体运营模式的比较研究,重点考察所有制形式、资金来源、经营服务方式、监管体制等。英国临终关怀发展完善的重要保证是国家层面的政策性支持,广泛的群众参与以及多元化的经营模式。相比之下,这正是中国临终关怀所欠缺的发展动力。根据中国目前的状况和英国等西方国家的发展历程来看,这些也是中国临终关怀实现进一步发展应该借鉴且能够借鉴的。
第六部分是中国临终关怀而临的困境以及英国等发达国家临终关怀模式对我国的启示。国内学者之前提出的几种实践模式是经过认真论证且行之有效的,但是随着时间的推移和新社会问题的出现,需要对其进行补允修订。笔者通过借鉴英美等发达国家的服务模式,针对我国面的困难以及当前存在问题,提出了“立体化人文关怀模式”的基本构想。
第七部分是结语,对中国临终关怀事业未来的发展进行展望。中国临终关怀最重要的是立足中国实际,将外来经验本土化。只有充分评估自己的问题,在比较的视野下取长补短,并适时调整改进运营模式,才能使得临终关怀获得长足的发展、造福于中国大众。当然,“立体化临终关怀模式”尽管已经在小范围内实施,但这一构想主要是一种理论探讨,其初衷是为临终关怀实践提供些新的思路,具体的可行性还有待于在实践中检验、调整和不断改进。
The concept of "hospice" is derived from humanitarian care for the elderly, the physically weak or the terminally ill. It has a long history in the West and China. Traditional hospice is mainly organized and operated by government or churches and other charities, whose major responsibility was to rescue and help the old, the feeble, the poor or the helpless. Their medical function was not highlighted until modern times.
The concept of "modern hospice" was formed in the20th century to stress people's right to choose "good death". Its aim is to perform all-round physical, psychological and spiritual concern and care for the dying or the terminally ill, and to provide psychological comfort and bereavement care to the families of the patients. In the1960s, Dr. Cicely Sanders founded St. Christopher's Hospice in London, which marks the rise of the modern hospice movement. Afterwards, more than60countries and regions, including the United States, France, Canada, Hong Kong and Taiwan, followed the example and have been carrying out this cause one after another. Up to now, with the emergence and development of hospice movement in ever-increasing numbers of countries and regions, hospice has become a new field of scientific research and has gradually developed into a new interdisciplinary program, taking physiological and psychological characteristics of the terminally ill as the main object of study. It is designed to secure a good quality of life for the terminally ill, no longer destined to prolong the patient's survival time as the primary goal of care.
The basic target of hospice is to provide comprehensive care for the terminally ill and their families, specifically, to alleviate or eliminate the patient's pain and other symptoms, reduce the patient's psychological stress and anxiety in the face of death, and to provide psychological comfort and spiritual support. Moreover, it has also included the patient's family as part of the object of care, to provide grief soothe and bereavement services, to help get rid of the psychological stress, soon as possible, brought about by the illness and consequent death of their beloved ones. The definition and determination of the service object exhibits obvious differences from those of traditional medicine. It is not based on the type of diseases---patients are not categorized according to the physiological characteristics such as the type of diseases, the specific organs affected by the disease, or other biological features of patients, like age or gender. Instead, it is defined by the trend and progress of the disease in relation to the patient's time of survival. As a result,"the terminally ill" refers to those whose disease has no cure under the present context of medical development; furthermore, the condition of the patient is continue deteriorating or worsening, and his expected survival time is no longer than6months. The study and research on hospice care involves physical, psychological and spiritual care and concern for both the patient and his family members. It covers a wide range of disciplines and fields---clinical medicine, nursing, psychology, sociology, ethics and religion. It is, in this sense, a typical interdisciplinary course. According to the specific methods employed in the care and the categories of care, hospice care can be further subdivided into "palliative medicine","palliative care","palliative psychology","palliative sociology" and other relevant branches. Hospice care, therefore, is not simply a medical or nursing service; instead, it is comprehensive as to include counseling and consulting, philosophy of life and death, death education, health education, spiritual and social support, and bereavement care, to reflect the highly specialized and generally unified health care services.
In terms of chronological evolution, hospice has gone through three stages:early sanctuary or church hospital, the rise of modern hospice---its establishment and early development, and the reconciliation between hospice care and national health insurance system. With a history of half a century, both the practice in and the research on hospice care have made important progresses. Different countries have carried out various service modes and have had varied organizations, according to their specific situations of hospice care. Generally, the most common types include the following three:independent hospice (hospital), hospice wards affiliated to comprehensive hospital or other medical institutions, and home hospice care services such as domestic sickbeds or day care. On a world scale, while the concept of hospice care, inclusion criteria and service evaluation are judged with internationally accepted and acknowledged standards, the localization of hospice service mode is significant for attention. For example, in the Great Britain, hospice service is carried out mainly as part of inpatient services, specifically hospitalization and day care. In the U.S., however, a home-based hospice care is given priority and prefered, while inpatient service is not that well-received. In comparison, hospice care in China is mostly provided in comprehensive hospitals, or specially established wards in specialized hospitals or care centers. Independent hospice is pretty sparse. Generally, speaking, several factors determine the level, quality of hospice care in any given country or region, namely, economic development, cultural heritage and tradition, moral codes and customs, and medical and heath care system, etc. The overall development in advanced Western countries is generally technically superior to, better equipped and more widely inclusive than that in third-world countries.
Great Britain is the birthplace of modern hospice. It has been a model in respect to the long history of and rich experience in hospice care. British hospice is characteristic of large number, wide coverage, advanced technology, admirable professionalism and common participation on part of ordinary people. The hospice care has been in operaiton in a malignant cycle. More importantly, British development exemplifies a good combination of hospice and health care system, which has solved the problem of expenditure. In a word, hospice in such countries as Great Britain has been in efficient operation as an indispensable part of national medical and health care system, to secure good quality of existence, satisfactory nursing before death and a death with dignity.
In comparison, China is now in dilemma in regard to the development of its hospice care. On one hand, traditional Chinese culture considers "being terminally ill" or "incurably ill", or "death" as a taboo. Hospice, as closely related to "death" can not be easily accepted by people. In addition, medical authorities have yet attached attention and importance to this cause, and are thus reluctant to provide funds to promote the development. As a result, hospice care in China is still at a lower level, and the existent hospices are now operating on a smaller scale, in smaller quantity and with more financial pressures, without any scientific evaluation system or consistent technical standards. On the other hand, around1.5million people die of cancer every year, over60%of whom have to suffer from pain in their terminal stages. However, it is estimated the number of people who could have some access to certain type of hospice care is only around20,000. Most of the terminally ill are still undergoing all kinds of examinations and therapies, only to prolong the sufferings of the patients, worsen the financial burden to the family and to waste the comparatively scarce medical resources. The sharp contrast between the two just highlights the poorer "death quality" of Chinese people, which cannot conform to the economic development of the country and exemplifies a violation against people's pursuit for a life of high quality. In addition, more factors will determine a big market potential for hospice care, for instance, the ever accelerating aging of Chinese population, and the increasing number of elderly people who are now living by themselves without the company of their children. Predictably. Chinese people will have an ever increasing demand for hospice service.
Hospice is fundamental to concern almost every member in the society."Terminally ill" is an unavoidable stage to be experienced by every member of a society, and the issue is thus consequently important. This research is carried out in the light of the importance of hospice. It is designed to provide a comprehensive review of Chinese hospice, to highlight its problems and challenges in a comparative perspective, and then to tentatively explore more suitable passways on the basis of Chinese history and reality. The author is expecting to provde some alternative view and useful information for decision-makers and service providers, to further promote the development of China's hospice. The basic methodology employed in the study is comparison, with Great Britain, the cradle of modern hospice, as reference, with an aim to provide a wider view in which the level and status of Chinese hospice can be understood. Shortages can be clarified when in comparison, and specific problems can also be explored. Methodology of the study includes readings, classifications and analyses of documents and literature, questionnaire, investigation and interviews. The contents of comparison involve the origin, background, objects of service, contents of service and ways of operation.
This dissertation is composed of the following seven parts.
The first part is the introduction. It is designed to tackle the contradiction between the great challenges for China's hospice and the demand for the service on the part of people. In this way, the central problem is posed. Basic methodology is also being introduced, and the theoretical and practical significance of the study is highlighted. This part mainly puts forward the problems for study, discusses the theoretical and practical significance of the research, and elaborates the research background, objectives and content.
The second part involves the definition, origin and literature review of hospice. The connotation and conceptualization of hospice was studied chronologically. The prime purpose of hospice is to secure a "good death" or a "death with dignity", with an aim to improve the quality of life, instead of simply prolonging his survival. This humanitarian principle fully shows the respect for the dignity of the terminally ill. At the same time, hospice care takes into consideration the natural physiological process of the patient, without taking any aggressive measures to speed up ot slow down the death of the patient. It is in this sense that hospice differs from euthanasia. Since hospice is directly and closely related to the quality of death and the quality of nursing prior to death, theories and practices in these relevant fields just provide technical prerequisites for the emergence of modern hospice. The progress in pain killing makes it technically possible to kill or reduce pain for the patient. The establishment of "total pain" theorizes and justifies the multiple nursings for patients, which in return nurtures the development of hospice. Research on hospice covers two ranges of study: theoretical study and medical practice. However, some issues are common to both, such as the psychological condition of the terminally ill, to provide alternative perspectives for the reference of service providers, which in turn helps to improve the quality of service, and helps to promote the psychological and spiritual growth of service providers. The majority of researches carried out in Mainland China are introductory and explanatory, but some scholars have already realized the importance to base their study on the reality of China, and are thus researching on the localization of hospice service modes.
The third part is the comparative study on the background of the emergence of hospice between the U.K.. and China. The dissertation gives a detailed study on the history of hospice, focuses on the transformation from charity workhouse to the medical care institutions, reviews the rise and development of modern hospice in a historical perspective, and provides an macroscopical and comprehensive background for the contrast of the background, inclusion criteria and service contents of the hospice in these two countries.
The fourth part compares the inclusion and the content of hospice. British hospice is the production of caring tradition of the terminally ill, the traditional medical institutions and the development of modern medicine whose development conforms to the new understanding of death, to meet the actual needs of the terminally ill. Chinese hospice service model is basically borrowed from the United Kingdom. However, it shows a big difference in regard to the traditional conception of death and "good death" advocated by hospice. Although Chinese society is in great need of the hospice service, ordinary people are yet to be well prepared for the acceptance of the fundamental concepts, which is the major difficulty for the further development of Chinese hospice.
The fifth part is a comparative study of operating models of hospice between The U.K. and China, with the specific emphasis on the form of ownership, sources of funds, service models and the supervision mechanism. The important guarantee for the development and perfection of British hospice comes from the support from the national policy, the extensive mass participation and the encouragement of diversified operating models. In contrast, this is exactly what Chinese hospice lacks. According to China's current situation and the development of the United Kingdom and other Western countries, Chinese hospice should learn and be able to learn these strong points in order to achieve further development.
The sixth part discusses the dilemma of Chinese hospice and the inspiration from the hospice care models in such developed countries like Great Britain. Basically, the practical models designed by other scholars have been based on serious consideration and scientific study to have provided important theoretical guidance. However, with the lapse of time and the emergence of new social problems, they need supplement and amendments. By reviewing the models in Britain and other developed countries, the author puts forward the basic proposition of "multi-dimensional humanistic care model" in regard to the difficulties and current problems in China.
The seventh part is the conclusion and the anticipation of future development of hospice in China. It is essential for Chinese hospice to get localized based on the "borrowed" experience. Only under the sufficient assessment of current problems can we adopt others'strong points while overcoming our weak points, adjust and improve the operating models and gain long-term development, to enable hospice to benefit Chinese people. Surely, the "multi-dimensional humanistic care model" has been put in practice in some dimensions, but it is mainly a theoretical discussion. The aim is to provide some new approaches for hospice practice, and the feasibility of the model still needs inspection, adjustment and improvement in practice.
引文
1参见李义庭,刘芳主编.生命关怀的理论与实践[M].北京：首都师范大学出版社,2012：94.
2各方文献数据存在较大差别,甚至有个别文献认为每年死于癌症的患者有250万人。本研粉以卫生部官方网站数据为准,参见：中华人民共和国国家卫生和计划生育委员会.慢性大病渐成我国严重经济社会问题之一[EB/OL].(2011-7-29)[2013-3-21].http:／／www.moh.gov.cn/mohbgt/s6717/201107/52521.shtml.
3这文面的资料较为匮乏,统计数字差别较大,在2-5万之间.笔者的大致估算为不足5万。参见：施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010：16.
①张恺悌.《全国城乡失能老年人状况研究》[R].中国老龄委、中国老龄科学研究中心.2011：1.
②张恺悌.《全国城乡失能老年人状况研究》[R].中国老龄委、中国老龄科学研中心.2011：2.
①参见王平,李海燕.死亡与医学伦理[M].武汉：武汉大学出版社,2005：49.
① Hank ten Have ＆ David Clark, Ethies of Palliative Care: European Perspeetives [M].Buckingham: Open University Press.2002:9.
①有些文献中翻译为“圣卢克济贫院”(参见孟宪武，2005：3),来突出早期此类医疗机构的慈善性质。
②“二战”后,圣卢克医院设有48张病床,专门服务于晚期癌症患者,此时已经基本具备临终关怀的雏形。
③李嘉诚基金会.守在日落的那一边[OL]. [2013-2-26]. http://www.lksf.org/zh-cn/TheFinalScene.
① Cicely Saunders. Drug treatment of patients in the terminal stages of cancer [J]. Current Medicine and Drugs, 1960(1):16.
② Cicely Saunders. The care of the dying [J]. Gerontologica Clinica.1967. 9(4-6):385.
① D. Doyle. G. W. C. Hands & N. Macdonald. eds. Oxford Textbook of Palliative Medicine, 2nd edn.[M]. Oxford: Oxford University Press, 1998:3.
① Hank ten I lave & David Clark. The Ethics of Palliative Care: European Perspectives[M].Buckingham: Open University Press.2002:1.
② World Health Organization. WHO definition of palliative care [HB/OL]. (2009-09-09)[2013-01-26]. http://www.who.int/cancer/palliative/definition/en/.
③ World Health Organization. WHO definition of palliative care [EB/OL]. (2009-09-09)[2013-01-26]. http://www.who.int/cancer/palliative/definition/en/.
①伊丽莎白·库伯勒-罗斯著,邱谨译：论死亡和濒临死亡[M].广州：广东经济出版社,2005：130-131.
①李义庭,李伟,刘芳等.临终关怀学[M].北京：中国科学技术出版社，2000：4.
②参见孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：7-8.王平,李海燕.死亡与医学伦理[M].武汉：武汉大学出版社,2005：48-49.
①杜治政,许志伟主编.医学伦理学辞典[M].郑州：郑州大学出版社,2003：410-411.
②日野原重明著,徐坚、张蠡译.临终关怀[M].西安：陕西科学技术出版社,2004：204.
③转引自冯沪祥.中西生死哲学[M].北京：北京大学出版社,2002：2.
①转引自冯沪祥.中西生死哲学[M].北京：北京大学出版社, 2002：20.
②对于“死亡学”并没有十分统一的界定,有些学者称其为“生死学”，或者交叉使用两个概念。因为在“生”和“死”这两个人生最大的问题上,生存哲学受到了很大的关注,人类的生存发展历来是哲学家思考的重中之重：但是死亡哲学远远没有得到应有的重视。因此,现代意义上的“生死学”将“死亡”作为研究重点,探讨人类应该如何有尊严地应对死亡。源于些,在许多文献中.“生死学”和“死亡学”几乎成了同义词。但是傅伟勋先生对此进行了区分,他主张以“生死学”来涵盖“死亡学”和“临终精神医学”,即这门学科包含生和死两个方面,既讨论死亡问题,出讨论生命的价值。参见杨国枢：“序：一个不平凡的人,一本不平凡的书,载傅伟勋：死亡的尊严与生命的尊严[M].北京：北京大学出版社,2006：2-3.另参见冯沪祥：中西生死哲学[M].北京：北京大学出版社,2002：2-4.
但是目前相当比例的学者采用“死亡学”一词。参见陈忠华主编.脑死亡——现代死亡学[M].北京：科学出版社,2004.
③冯沪祥.中西生死哲学[M].北京：北京大学出版社,2002：5.
①傅伟勋.死亡的尊严与生命的尊严[M].北京：北京大学出版社,2006： 23.
②伊丽莎白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：23.
③伊丽莎白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：6.
①参见worden,william.Children and Grief:When A Parent Dies[M].New York:the Guilford Press,1996:13-16.②沃尔登还对癌症患者和儿童的悲伤心理进行了细致的研究。他基于哈佛儿童丧亲研项目(Harvard Child Bereavement Study)出版了《儿童与悲伤：丧影响》(Children ＆Grief:When a Parent Dies, 2008),调查了70个家庭的125位6-17岁的儿童,从儿童生活的各个方面调查父亲或者母亲的离世对孩子的影响。这项研究是儿童临终关怀心理研究领域的重要突破,是迄今为止儿童丧新心理研究方面最为权威、最为全面的学术著作之一,成为儿童一心理学左研究的重要参考文献。参见Worden.William.Children and G rief: When A Parent Dies[M].New York:the Gullford Press, 1996:5.
孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：35.
①日野原重明著,徐坚、张蠡译.临终关怀[M].西安：陕西科学技术出版社,2004：75.
②祝世讷.安乐死[C].杜治政,许志伟主编：医学伦理学典[M].郑州：郑州大学出版社,2003：406.
①孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：44.
②盅宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：41.
③格雷戈毕·彭斯著,聂精保、胡林译：医学伦理学经典案例[M].长沙：湖南科学技术出版社,2010：88.
Joy Buck. Policy and the Re-Formation of Hospice:Lessons from the Past for the Future of Palliative Care [J]. Journal of Hospice & Palliaivet Nursing. 2011, 13(6):535.
① Javier Moscoso. Pain:A Cultural History [M]. Palgrave MacMillan, 2012:194.
② Diego Grarica. Palliative Care and the Historical Background[C] in Hank ten Have and David Clark eds. The Ethics of Palliative Care:European Perspectives. Buckingham:Open University Press,2002:25.
③ R. Rey. The History of Pain [D], Cambridge, MA:Harvard University Press,1955:322.
① Milton James Lweis. Medicine and Care of the Dying:A Modern History [M]. Oxford University Press, 2007:175.
Diego Grarica. Palliative Care and the Historical Background[C] in Hank ten Have and David Clark eds. The Ethics of Palliative Care:European Perspectives. Buckingham:Open University Press, 2002:27.
Cicely Saunders. The treatment of intractable pain in terminal cancer [J]. Proceedings of the Royal Society of Medicine,1963,56 (3):197.
Cicely Saunders. A personal therapeutic journey [J]. British Medical Journal, 1996, 313:1600.
Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:19.
Nicholas A. Christakis & Theodore J. Iwashyna. Impact of Individual and Market Factors on the Timing of the Initiation of Hospice Terminal Care [J]. Medical Care, 2000:528-529.
①Nicholas A. Christakis & Theodore J. Iwashyna. Impact of Individual and Market Factors on the Timing of the Initiation of Hospice Terminal Care [J]. Medical Care, 2000:531.
②Nicholas A. Christakis & Theodore J. Iwashyna. Impact of Individual and Market Factors on the Timing of the Initiation of Hospice Terminal Care [J]. Medical Care, 2000: 537-538.
1 Wilma Bulkin, James E. Cimino, David I. Wollner, Austin H. Kutscher, Samuel C. Klagsbrun, Terry Kinzel and Patrice M. O'Conner. The Physician and Hospice Care:Roles, Attitudes, and Issues [M]. Binghamton, NY, Haworth Press,1992:10.
2 Harvey Max Chochinov. Dignity Therapy:Final Words for Final Days [M], Oxford University Press,2012:6.
傅伟勋.死亡的尊严与生命的尊严[M].北京：北京大学出版社,2006：100.
1 Justin Amery. Children's Palliative Care in Africa [M]. Oxford University Press, 2009:1.
1 S. K. Chaturvedi. Ethical dilemmas in palliative care in traditional developing societies, with special reference to the Indian setting[J]. Journal of Medical Ethics, 2008(34):611.
2 Chiu Tai-Yuan et al. Ethical dilemmas in palliative care:a study in Taiwan [J]. Journal of Medical Ethics,2000 (26): 357.
①参见Hank ten Have & Rien Janssens eds. Palliative Care in Europe, Concepts and Policies:Biomedical and Health Research [M]. Amsterdam:IOS Press,2001:6-7.
②陈家忠.中国临终关怀之父——崔以泰[J].今日科苑,2010(2)：8-12.
李义庭,李伟,刘芳等.临终关怀学[M].北京：中国科学技术出版社,2000：4.
陈春燕,罗羽,谢容.当前我国临终关怀模式存在的问题及对策,护理管理杂[J].2005，5(2)：27.
①何国平、张静平主编：实用社区护理[M].北京：人民卫生出版社,2002：442.
②何国国、张静平主编：实用社区护理[M].北京：人民卫生出版社,2002：443.
③参见施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：前言.
①参见孟究武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社，2005：18.
①全称为“耶路撒冷、罗得岛及马耳他圣若望立军事医院骑士团”(the Sovereign Military Hospitaller Order of St. John of Jerusalem of Rhodes and of Malta),足中世纪最著名的军事修会之一。最早成立于十军东征之初,为病人和穷人提供帮助。
②Cathy Siebold. The Hospice Movement [M]. New York:Twayne Publishers,1992:16.
③Cicely Saunders. Foreword, in D. Doyle, G. W. C. Hands and N. Macdonald, eds, Oxford Textbook of Palliative Medicine 2nd edn.[M]. Oxford:Oxford University Press,2005.
①孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社，2005：24.
②转引自李义庭.临终关怀学[M].北京：中国科学技术出版社,2000：6.
③参见孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：24-25.
(?)具体分析见第六章,第一节。
(?)本研究的范围是中国大陆的临终关怀研究,台湾和香港的发展明显领先于大陆。1982年香港天主教医院首先开始了临终服务，为晚期癌症病人提供善终服务活动。1987年7月,香港创立了善终服务会。1990年3月,台北马偕医院建立了第一家临终关怀安宁病房。目前,两地的总体发展水平高于大陆。
(?)参见施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社，2010(10)：2.该老年护理院现已经更名为“上海市浦东新区老年医院”。
(?)这家医院的前身是南汇县结核病防治院,成立于20世纪60年代,所以其医疗服务是其首要的功能。
(?)李嘉诚基金会.守在日落的那一边[OL].[2013-2-26]http://www.lksf.org/zh-cn/TheFinalScene.
(?)陈露晓,薛红玉主编.老年人的生死心理教育[M].北京：中国社会出版社,2009：80-81.
① David Clark. Palliative Care History: A Ritual Process [J]. European Journal of Palliative Care, 2000,7(2):51.
② Bert Hayslip, Joel Leon. Hospice care [M]. Sage Publications, 1992:235.
③参见孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：23.
1倪长江,李静.对死亡的看法与认识：日本关于临终关怀的哲学伦理基础[J].国外医学护理学分册,2003,22(6)：299.
①参见李义庭,刘芳主编.生命关怀的理论与实践[M].北京：首都帅范大学出版社,2012：99.
②参见："Hospice". Wikipedia. http://en.wikipedia.org/wiki/llospice.
③参见："Hospice". Wikipedia. http://en.wikipedia.org/wiki/Hospice.
①刘英团.“临终关怀”让生命有尊严地谢幕[N].燕赵晚报,2012年11月21日。http://www.sd.xinhuanet.com/news/2012-11/21/c_113748662.htm.
②National Audit office. Results of Censuses of Independent Hospices & NHS Palliative Care Providers, End of Life Care [R]. London:the Stationery Office, 2008: 2.
1伊丽莎白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：23.National Audit office. Results of Censuses of Independent Hospices & NHS Palliative Care Providers, End of Life Care [R]. London:the Stationery Office, 2008:21. http://www.nao.org. uk/publications/0708/end_of_life_care. aspx.
Paradis, Lenora Finn & Scott B. Cummings. The Evolution of Hospice in America toward Organizational Homogeity[J].Journal of Health and Social Behavior,1986(27)375.
Geoffrey Mitchell. Palliative Care:A Patient-Centered Approach [M].2008:1-2.
Thompson, Ian E. et al. Learning about death:a project from the Edinburgh University Medical School [J]. Journal of Medical Ethics, 1981(7):65.
1 Higginson, Irene et al. Palliative care:views of patients and their families [J]. British Medical Journal,1990, 301:279.
(?)同上
(?)伊丽莎人白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：12.
Smaje and Field. Absent minorities? Ethnicity and the use of palliative care services[C]. In:Hockey J, Small N, editors. Death, Gender and Ethnicity. London:Routledge, 1997: 145.
2 Jonathan Koffman, Richard Harding & Irene Higginson. Palliative care:the magnitude of the problem[C] in Palliative Care:A Patient-Centered Approach, ed. Geoffrey Mitchell. Radcliffe Publishing Ltd.,2008:23.
3 National Audit Office. End of Life Care[R].2008:4.另参见Jonathan Koffman, Richard Harding & Irene Higginson. Palliative care:the magnitude of the problem[C] in Palliative Care:A Patient-Centered Approach, ed. Geoffrey Mitchell. Radcliffe Publishing Ltd.,2008:11.
(?)需要注意的足,这些统计数之间有些存在交叉,例如,288家可以提供居家医疗服务的机构中包括127家居家临终关怀服务机构。参见Facts and Figures. London:Help the Hospices [OL]. [2013-01-26].http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/
。见本章第二节,不再赘述。
(?)施水兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海： 上海科技教育出版社，2010(10)：4.
①施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：196.
②Jane McCusker & Anne M.Stodda rd.Effects of an Expanding Home Care Program for the Terminally Ill[J]. Medical Ca re, 1987, 25(5):374.
参见王平,李海燕.死亡与医学伦理[M].武汉：武汉大学出版社,2005：73.
参见史宝欣主编.生命的尊严与临终护理[M].重庆：重庆出版社：2007：116-118.
①[美].J.S.霍尔德＆.J.A克兰顿著.临终精神关怀手册[M].上海译文出版社,2006：1.
②[美]J.S.霍尔德＆J.A克兰顿著.临终精神关怀手册[M].上海译文出版社,2006：3.
1 Kathleen Garces-Foley. Buddhism, Hospice, and the American Way of Dying [J]. Review of Religious Research, 2003,44(4):342.
Kathleen Garces-Foley. Buddhism, Hospice, and the American Way of Dying [J]. Review of Religious Research, 2003,44(4):341.
3李晋.“向死而在”——佛教、医学与临终关怀[J].社会观察,2007(9)：23.
Help the Hospices. Hospices at the heart of local communities:Briefing on hospice care for adults in England [R]. London:Help the Hospices,2010:2.
Irene J. Higginson, Jarman B, Astin P et al. Do Social Factors affect where patients die:an analysis of 10 years of cancer deaths in England [J].Journal of Public Health Medicine, 1999(21):22-28.
①李义庭,李伟,刘芳等.临终关怀学[M].北京：中国科学技术出版社,2000：132.
② Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:15.
③ Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:17.
④参见冯沪祥.中西生死哲学[M].北京：北京大学出版社,2002：147-149,190.
1孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：35.
(?)李晋.“向死而在”——佛教、医学与临终关怀[J].社会观察，2007(9)：23.
① Grarica, Diego. Palliative Care and the Historical Background[C] in Hank ten Have and David Clark eds. The Ethnics of Palliative Care:European Perspectives, Buckingham:Open University Press, 2002:30.
1倪长江,李静.对死亡的看法与认识：日本关于临终关怀的哲学伦理基础[J].国外医学护理学分册,2003,22(6)：299.
中国生命关怀协会.“创建社区老年临终关怀服务模式研究”调研报告[R].2011(1)：8.
① Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:6.
② Help the Hospices. Hospices at the heart of local communities:Briefing on hospice care for adults in England [R]. London:Help the Hospices, 2010:1. http://www.helpthehospices.org.uk/EasySiteWeb/6atewayLink.aspx?alld=49806.
③ World Health Organization, WHO definition of palliative care (OL]. [2013-2-16]. http://www.who.int/cancer/palliative/definition/en/.
① World Health Organization, WHO definition of palliative care [OL]. [2013-2-16]. http://www.who.int/cancer/palliative/definition/en/.
② Chris G A Wood, Sally White, Caroline S Bradbeer. ABC of palliative care:HIV infection and AIDS [J]. BMJ, 1997, 315:1434.
①参见施水兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：5.
②参见施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：5.
③参见Chiu Tai-Yuan et al. Ethical dilemmas in palliative care:a study in Taiwan [J]. Journal of Medical Ethics,2000 (26):353-357.
①中国老龄事业发展基金会北京松堂关怀医院简介[OL].[2013.2-171.http://www.stghyy.com/yyjs2.asp
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③英国十1940年初开始研究医疗保障等福利计划,有关福利国家整体设计的《贝弗里奇报告》于1942年发表,贝弗里奇主张社会保险要覆盖所有公民,但同时又要充分考虑不同收入人群的生活差异和他们并小相同的保障需求,既要全民覆盖又要分离实施。1946年议会通过了国卫生保健法,直至1948年正式实施。参见：任阵,黄志强等.中国医疗保障制度发展框架与策略[M].北京：经济科学出版社,2009：226.
①即现在的特拉福德综合医院(Trafford General Hospital)。
②英国法律规定,每周收入在80英镑以上的人,需缴纳医疗保险金,其比例大约为10%。
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① Facts and Figures. London:Help the Hospices [OL].[2013-2-5]. http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/
② Marie Curie Cancer Care, "Impact Report: 2008-2009",2009:55. NHS实行的足医疗服务分级制,由初级卫生保健信托基会(Primary Care Trust)和中级卫生保健信托基会(Secondary Care Trust)两部分组成。20世纪80年代以来,英国开始推行医疗体系的内部市场化改革,将筹资付费与服务监管分离开来,由两个机构承担。全国按地区设置了152个初级卫生保健基金,居十国民健康服务系统的核心,掌握了NHS大约80%的资会,成为最大的医疗服务购买者。到了21世纪,英国政府又实行了与商业保险合作,称为“服务外包”(Framework for procuring External Support for Commissioners. FESO。卫生部根据不同商业保险公司资质的评估,最终认定了14家商业医疗保险公司可以初级卫级卫生保健基金提供管理服务。部分术誉好、实力雄厚的保险公司司可以受托承担基会管理,在确保居民医疗服务前提下,保险公司获得部分结余资金作为管理收入。参见：“商业保险参与医疗保障管理的经验及启示,”中华人民共和国财政部社会保障司,2010年3月11日。http://sbs.mof.gov.cn/zhengwuxinxi/diaochayanjiu/201003/t20100311_275453.html.中级卫生保健信托基金中主要有两部分：影响较大、水平较高的地方性或者全国性专科医院,例如玛丽·居里癌证中心就是其中的一个代表,另外一类是大学医学院附属医院,属于教学科研型医院,以救治重大疾病或者疑难病症患者为主。
③ Marie Curie Canter Care. Report and Accounts 2010/11[R].Marie Curie Hospices office, 2011:21. http://www.mariecurie.org.uk/Documents/WHO-WE-ARE/Strategic-Plan/annual-report-accounts-2010-2011.pdf.
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'National Audit office. Results ofCensuses of Independent Hospices & NHS Palliative Care Providers, Fnd of Life Care End of Life[R]. London:the Stationery Office.2008:10. http://www.nao.org.uk/publications/0708/end_of life care.aspx.
② Marie Curie Cancer Care.Impact Report 2008/09[R].2009:55. http://www.mariecurie.org.uk/Documents/WHO-WE-ARK/Strategic-Plan/Nov09-Report-and-Accounts-1109.pdf.
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21977年,西班牙的莫塔拉医院(Mortals Hospital)成立家庭护理小组,专门提供居家临终关怀服务。
(?)德国最早的临终关怀机构成立于1983年的科隆大学附属医院的临终关怀科(Palliative Care Unit University Clinic, cologne),意大利最早的是1980年成立的全国肿瘤研究所米兰和弗罗里亚尼(Floriani)基金会的镇痛病区,属于全另性“护理之家”计划的一部分。
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②需要注意的是，这些统计数之间有些存交叉,例如,288家可以提供居家医疗服务的机构中包括127家居家临终关怀服务机构。参见Facts and Figures. London: Help the Hospices [OL].[2013-2-5]. http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/.
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②这足英国医疗保险补偿机制中的一部分,医院与卫生主管部门或者全科医生签订的一种合同,作为医院提供医疗服务获得资余补偿的依据。总额预算合同要求医院在一定数额资金的支持下为区域内的居民提供一系列的医疗服务。在此类合同中,一般会对队院医疗服务的数量和类型进行具体的规定,只要没有特别说明或者约定,一般就意味着医院提供医疗服务后能够得到足够的资金支持。
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①此机构2003年由十政府十地规划而被迫搬迁,至今未能重建。
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1根据《上海市闸北区卫生系统临终关怀服务规范及要求》,政府给予政策的支持：2007年对新增安宁护理病床予每床1万元的启动经费。2008年区卫生局对开展临终关怀安宁护理的安慰按照安宁护理收治患者的数理给予每人次2000元的补贴。参见施水兴,王荣主编.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010：185.上海市卫生、财政、人保、医保、民政、红十字会、慈善基金会等7家单位联合下发了《关于做好2012年市政应付实事舒缓疗护(临终关怀)项目的通知》等文件,将临终关怀纳入2012年的政府重要工作,明确了各个部门的职责任务。市区两级财政均把实事“舒缓疗护”项目列入年度预算,项目经费支出2148.73万元,主要用于舒缓疗护病区的的准化建设,例如病房等硬件设施。经费中的一部分用于为贫困居家患者癌痛用药自费部分提供补助。但是没有像闸北区 2008年那样的具体补贴规定。参见中国生命关怀协会.上海市实事“舒缓疗护”项目实施情况及相关建议[EB/OL].(2013-2-19)[2013-3-30].http://www.cnaflc.org/contents/38/13900.html.
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① Help the Hospices. Annual Report[R].2012:12. http://www.helpthehospices.org.uk/about-us/annual-reports-/.需要说明的是,除了“帮助生命末期关怀组织”的筹资之外,各个临终关怀机构还会各自接受捐赠,所以这些数据会存在一定的差别。玛丽·居里临终关怀院的固定捐款人已达到109,000,他们定期通过银行账户或其他形式进行捐款。2010-11年度,遗产捐款达到2050万英镑。参见Marie Curie Cancer Care. Report and Accounts 2010-11[R].2011:5. http://www.mariecurie.org.uk/Documents/WHO-WE-ARE/Strategic-Plan/annual-report-accounts-2010-2011.pdf.
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2各方文献数据存在较大差别,甚至有个别文献认为每年死于癌症的患者有250万人。本研粉以卫生部官方网站数据为准,参见：中华人民共和国国家卫生和计划生育委员会.慢性大病渐成我国严重经济社会问题之一[EB/OL].(2011-7-29)[2013-3-21].http:／／www.moh.gov.cn/mohbgt/s6717/201107/52521.shtml.
3这文面的资料较为匮乏,统计数字差别较大,在2-5万之间.笔者的大致估算为不足5万。参见：施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010：16.
①张恺悌.《全国城乡失能老年人状况研究》[R].中国老龄委、中国老龄科学研究中心.2011：1.
②张恺悌.《全国城乡失能老年人状况研究》[R].中国老龄委、中国老龄科学研中心.2011：2.
①参见王平,李海燕.死亡与医学伦理[M].武汉：武汉大学出版社,2005：49.
① Hank ten Have ＆ David Clark, Ethies of Palliative Care: European Perspeetives [M].Buckingham: Open University Press.2002:9.
①有些文献中翻译为“圣卢克济贫院”(参见孟宪武，2005：3),来突出早期此类医疗机构的慈善性质。
②“二战”后,圣卢克医院设有48张病床,专门服务于晚期癌症患者,此时已经基本具备临终关怀的雏形。
③李嘉诚基金会.守在日落的那一边[OL]. [2013-2-26]. http://www.lksf.org/zh-cn/TheFinalScene.
① Cicely Saunders. Drug treatment of patients in the terminal stages of cancer [J]. Current Medicine and Drugs, 1960(1):16.
② Cicely Saunders. The care of the dying [J]. Gerontologica Clinica.1967. 9(4-6):385.
① D. Doyle. G. W. C. Hands & N. Macdonald. eds. Oxford Textbook of Palliative Medicine, 2nd edn.[M]. Oxford: Oxford University Press, 1998:3.
① Hank ten I lave & David Clark. The Ethics of Palliative Care: European Perspectives[M].Buckingham: Open University Press.2002:1.
② World Health Organization. WHO definition of palliative care [HB/OL]. (2009-09-09)[2013-01-26]. http://www.who.int/cancer/palliative/definition/en/.
③ World Health Organization. WHO definition of palliative care [EB/OL]. (2009-09-09)[2013-01-26]. http://www.who.int/cancer/palliative/definition/en/.
①伊丽莎白·库伯勒-罗斯著,邱谨译：论死亡和濒临死亡[M].广州：广东经济出版社,2005：130-131.
①李义庭,李伟,刘芳等.临终关怀学[M].北京：中国科学技术出版社，2000：4.
②参见孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：7-8.王平,李海燕.死亡与医学伦理[M].武汉：武汉大学出版社,2005：48-49.
①杜治政,许志伟主编.医学伦理学辞典[M].郑州：郑州大学出版社,2003：410-411.
②日野原重明著,徐坚、张蠡译.临终关怀[M].西安：陕西科学技术出版社,2004：204.
③转引自冯沪祥.中西生死哲学[M].北京：北京大学出版社,2002：2.
①转引自冯沪祥.中西生死哲学[M].北京：北京大学出版社, 2002：20.
②对于“死亡学”并没有十分统一的界定,有些学者称其为“生死学”，或者交叉使用两个概念。因为在“生”和“死”这两个人生最大的问题上,生存哲学受到了很大的关注,人类的生存发展历来是哲学家思考的重中之重：但是死亡哲学远远没有得到应有的重视。因此,现代意义上的“生死学”将“死亡”作为研究重点,探讨人类应该如何有尊严地应对死亡。源于些,在许多文献中.“生死学”和“死亡学”几乎成了同义词。但是傅伟勋先生对此进行了区分,他主张以“生死学”来涵盖“死亡学”和“临终精神医学”,即这门学科包含生和死两个方面,既讨论死亡问题,出讨论生命的价值。参见杨国枢：“序：一个不平凡的人,一本不平凡的书,载傅伟勋：死亡的尊严与生命的尊严[M].北京：北京大学出版社,2006：2-3.另参见冯沪祥：中西生死哲学[M].北京：北京大学出版社,2002：2-4.
但是目前相当比例的学者采用“死亡学”一词。参见陈忠华主编.脑死亡——现代死亡学[M].北京：科学出版社,2004.
③冯沪祥.中西生死哲学[M].北京：北京大学出版社,2002：5.
①傅伟勋.死亡的尊严与生命的尊严[M].北京：北京大学出版社,2006： 23.
②伊丽莎白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：23.
③伊丽莎白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：6.
①参见worden,william.Children and Grief:When A Parent Dies[M].New York:the Guilford Press,1996:13-16.②沃尔登还对癌症患者和儿童的悲伤心理进行了细致的研究。他基于哈佛儿童丧亲研项目(Harvard Child Bereavement Study)出版了《儿童与悲伤：丧影响》(Children ＆Grief:When a Parent Dies, 2008),调查了70个家庭的125位6-17岁的儿童,从儿童生活的各个方面调查父亲或者母亲的离世对孩子的影响。这项研究是儿童临终关怀心理研究领域的重要突破,是迄今为止儿童丧新心理研究方面最为权威、最为全面的学术著作之一,成为儿童一心理学左研究的重要参考文献。参见Worden.William.Children and G rief: When A Parent Dies[M].New York:the Gullford Press, 1996:5.
孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：35.
①日野原重明著,徐坚、张蠡译.临终关怀[M].西安：陕西科学技术出版社,2004：75.
②祝世讷.安乐死[C].杜治政,许志伟主编：医学伦理学典[M].郑州：郑州大学出版社,2003：406.
①孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：44.
②盅宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：41.
③格雷戈毕·彭斯著,聂精保、胡林译：医学伦理学经典案例[M].长沙：湖南科学技术出版社,2010：88.
Joy Buck. Policy and the Re-Formation of Hospice:Lessons from the Past for the Future of Palliative Care [J]. Journal of Hospice & Palliaivet Nursing. 2011, 13(6):535.
① Javier Moscoso. Pain:A Cultural History [M]. Palgrave MacMillan, 2012:194.
② Diego Grarica. Palliative Care and the Historical Background[C] in Hank ten Have and David Clark eds. The Ethics of Palliative Care:European Perspectives. Buckingham:Open University Press,2002:25.
③ R. Rey. The History of Pain [D], Cambridge, MA:Harvard University Press,1955:322.
① Milton James Lweis. Medicine and Care of the Dying:A Modern History [M]. Oxford University Press, 2007:175.
Diego Grarica. Palliative Care and the Historical Background[C] in Hank ten Have and David Clark eds. The Ethics of Palliative Care:European Perspectives. Buckingham:Open University Press, 2002:27.
Cicely Saunders. The treatment of intractable pain in terminal cancer [J]. Proceedings of the Royal Society of Medicine,1963,56 (3):197.
Cicely Saunders. A personal therapeutic journey [J]. British Medical Journal, 1996, 313:1600.
Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:19.
Nicholas A. Christakis & Theodore J. Iwashyna. Impact of Individual and Market Factors on the Timing of the Initiation of Hospice Terminal Care [J]. Medical Care, 2000:528-529.
①Nicholas A. Christakis & Theodore J. Iwashyna. Impact of Individual and Market Factors on the Timing of the Initiation of Hospice Terminal Care [J]. Medical Care, 2000:531.
②Nicholas A. Christakis & Theodore J. Iwashyna. Impact of Individual and Market Factors on the Timing of the Initiation of Hospice Terminal Care [J]. Medical Care, 2000: 537-538.
1 Wilma Bulkin, James E. Cimino, David I. Wollner, Austin H. Kutscher, Samuel C. Klagsbrun, Terry Kinzel and Patrice M. O'Conner. The Physician and Hospice Care:Roles, Attitudes, and Issues [M]. Binghamton, NY, Haworth Press,1992:10.
2 Harvey Max Chochinov. Dignity Therapy:Final Words for Final Days [M], Oxford University Press,2012:6.
傅伟勋.死亡的尊严与生命的尊严[M].北京：北京大学出版社,2006：100.
1 Justin Amery. Children's Palliative Care in Africa [M]. Oxford University Press, 2009:1.
1 S. K. Chaturvedi. Ethical dilemmas in palliative care in traditional developing societies, with special reference to the Indian setting[J]. Journal of Medical Ethics, 2008(34):611.
2 Chiu Tai-Yuan et al. Ethical dilemmas in palliative care:a study in Taiwan [J]. Journal of Medical Ethics,2000 (26): 357.
①参见Hank ten Have & Rien Janssens eds. Palliative Care in Europe, Concepts and Policies:Biomedical and Health Research [M]. Amsterdam:IOS Press,2001:6-7.
②陈家忠.中国临终关怀之父——崔以泰[J].今日科苑,2010(2)：8-12.
李义庭,李伟,刘芳等.临终关怀学[M].北京：中国科学技术出版社,2000：4.
陈春燕,罗羽,谢容.当前我国临终关怀模式存在的问题及对策,护理管理杂[J].2005，5(2)：27.
①何国平、张静平主编：实用社区护理[M].北京：人民卫生出版社,2002：442.
②何国国、张静平主编：实用社区护理[M].北京：人民卫生出版社,2002：443.
③参见施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：前言.
①参见孟究武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社，2005：18.
①全称为“耶路撒冷、罗得岛及马耳他圣若望立军事医院骑士团”(the Sovereign Military Hospitaller Order of St. John of Jerusalem of Rhodes and of Malta),足中世纪最著名的军事修会之一。最早成立于十军东征之初,为病人和穷人提供帮助。
②Cathy Siebold. The Hospice Movement [M]. New York:Twayne Publishers,1992:16.
③Cicely Saunders. Foreword, in D. Doyle, G. W. C. Hands and N. Macdonald, eds, Oxford Textbook of Palliative Medicine 2nd edn.[M]. Oxford:Oxford University Press,2005.
①孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社，2005：24.
②转引自李义庭.临终关怀学[M].北京：中国科学技术出版社,2000：6.
③参见孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：24-25.
(?)具体分析见第六章,第一节。
(?)本研究的范围是中国大陆的临终关怀研究,台湾和香港的发展明显领先于大陆。1982年香港天主教医院首先开始了临终服务，为晚期癌症病人提供善终服务活动。1987年7月,香港创立了善终服务会。1990年3月,台北马偕医院建立了第一家临终关怀安宁病房。目前,两地的总体发展水平高于大陆。
(?)参见施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社，2010(10)：2.该老年护理院现已经更名为“上海市浦东新区老年医院”。
(?)这家医院的前身是南汇县结核病防治院,成立于20世纪60年代,所以其医疗服务是其首要的功能。
(?)李嘉诚基金会.守在日落的那一边[OL].[2013-2-26]http://www.lksf.org/zh-cn/TheFinalScene.
(?)陈露晓,薛红玉主编.老年人的生死心理教育[M].北京：中国社会出版社,2009：80-81.
① David Clark. Palliative Care History: A Ritual Process [J]. European Journal of Palliative Care, 2000,7(2):51.
② Bert Hayslip, Joel Leon. Hospice care [M]. Sage Publications, 1992:235.
③参见孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：23.
1倪长江,李静.对死亡的看法与认识：日本关于临终关怀的哲学伦理基础[J].国外医学护理学分册,2003,22(6)：299.
①参见李义庭,刘芳主编.生命关怀的理论与实践[M].北京：首都帅范大学出版社,2012：99.
②参见："Hospice". Wikipedia. http://en.wikipedia.org/wiki/llospice.
③参见："Hospice". Wikipedia. http://en.wikipedia.org/wiki/Hospice.
①刘英团.“临终关怀”让生命有尊严地谢幕[N].燕赵晚报,2012年11月21日。http://www.sd.xinhuanet.com/news/2012-11/21/c_113748662.htm.
②National Audit office. Results of Censuses of Independent Hospices & NHS Palliative Care Providers, End of Life Care [R]. London:the Stationery Office, 2008: 2.
1伊丽莎白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：23.National Audit office. Results of Censuses of Independent Hospices & NHS Palliative Care Providers, End of Life Care [R]. London:the Stationery Office, 2008:21. http://www.nao.org. uk/publications/0708/end_of_life_care. aspx.
Paradis, Lenora Finn & Scott B. Cummings. The Evolution of Hospice in America toward Organizational Homogeity[J].Journal of Health and Social Behavior,1986(27)375.
Geoffrey Mitchell. Palliative Care:A Patient-Centered Approach [M].2008:1-2.
Thompson, Ian E. et al. Learning about death:a project from the Edinburgh University Medical School [J]. Journal of Medical Ethics, 1981(7):65.
1 Higginson, Irene et al. Palliative care:views of patients and their families [J]. British Medical Journal,1990, 301:279.
(?)同上
(?)伊丽莎人白·库伯勒-罗斯著,邱谨译.论死亡和濒临死亡[M].广州：广东经济出版社,2005：12.
Smaje and Field. Absent minorities? Ethnicity and the use of palliative care services[C]. In:Hockey J, Small N, editors. Death, Gender and Ethnicity. London:Routledge, 1997: 145.
2 Jonathan Koffman, Richard Harding & Irene Higginson. Palliative care:the magnitude of the problem[C] in Palliative Care:A Patient-Centered Approach, ed. Geoffrey Mitchell. Radcliffe Publishing Ltd.,2008:23.
3 National Audit Office. End of Life Care[R].2008:4.另参见Jonathan Koffman, Richard Harding & Irene Higginson. Palliative care:the magnitude of the problem[C] in Palliative Care:A Patient-Centered Approach, ed. Geoffrey Mitchell. Radcliffe Publishing Ltd.,2008:11.
(?)需要注意的足,这些统计数之间有些存在交叉,例如,288家可以提供居家医疗服务的机构中包括127家居家临终关怀服务机构。参见Facts and Figures. London:Help the Hospices [OL]. [2013-01-26].http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/
。见本章第二节,不再赘述。
(?)施水兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海： 上海科技教育出版社，2010(10)：4.
①施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：196.
②Jane McCusker & Anne M.Stodda rd.Effects of an Expanding Home Care Program for the Terminally Ill[J]. Medical Ca re, 1987, 25(5):374.
参见王平,李海燕.死亡与医学伦理[M].武汉：武汉大学出版社,2005：73.
参见史宝欣主编.生命的尊严与临终护理[M].重庆：重庆出版社：2007：116-118.
①[美].J.S.霍尔德＆.J.A克兰顿著.临终精神关怀手册[M].上海译文出版社,2006：1.
②[美]J.S.霍尔德＆J.A克兰顿著.临终精神关怀手册[M].上海译文出版社,2006：3.
1 Kathleen Garces-Foley. Buddhism, Hospice, and the American Way of Dying [J]. Review of Religious Research, 2003,44(4):342.
Kathleen Garces-Foley. Buddhism, Hospice, and the American Way of Dying [J]. Review of Religious Research, 2003,44(4):341.
3李晋.“向死而在”——佛教、医学与临终关怀[J].社会观察,2007(9)：23.
Help the Hospices. Hospices at the heart of local communities:Briefing on hospice care for adults in England [R]. London:Help the Hospices,2010:2.
Irene J. Higginson, Jarman B, Astin P et al. Do Social Factors affect where patients die:an analysis of 10 years of cancer deaths in England [J].Journal of Public Health Medicine, 1999(21):22-28.
①李义庭,李伟,刘芳等.临终关怀学[M].北京：中国科学技术出版社,2000：132.
② Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:15.
③ Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:17.
④参见冯沪祥.中西生死哲学[M].北京：北京大学出版社,2002：147-149,190.
1孟宪武.优逝：全人全程全家临终关怀方案[M].杭州：浙江大学出版社,2005：35.
(?)李晋.“向死而在”——佛教、医学与临终关怀[J].社会观察，2007(9)：23.
① Grarica, Diego. Palliative Care and the Historical Background[C] in Hank ten Have and David Clark eds. The Ethnics of Palliative Care:European Perspectives, Buckingham:Open University Press, 2002:30.
1倪长江,李静.对死亡的看法与认识：日本关于临终关怀的哲学伦理基础[J].国外医学护理学分册,2003,22(6)：299.
中国生命关怀协会.“创建社区老年临终关怀服务模式研究”调研报告[R].2011(1)：8.
① Hank ten Have & David Clark. The Ethics of Palliative Care:European Perspectives [M]. Buckingham:Open University Press, 2002:6.
② Help the Hospices. Hospices at the heart of local communities:Briefing on hospice care for adults in England [R]. London:Help the Hospices, 2010:1. http://www.helpthehospices.org.uk/EasySiteWeb/6atewayLink.aspx?alld=49806.
③ World Health Organization, WHO definition of palliative care (OL]. [2013-2-16]. http://www.who.int/cancer/palliative/definition/en/.
① World Health Organization, WHO definition of palliative care [OL]. [2013-2-16]. http://www.who.int/cancer/palliative/definition/en/.
② Chris G A Wood, Sally White, Caroline S Bradbeer. ABC of palliative care:HIV infection and AIDS [J]. BMJ, 1997, 315:1434.
①参见施水兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：5.
②参见施永兴,王光荣.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010(10)：5.
③参见Chiu Tai-Yuan et al. Ethical dilemmas in palliative care:a study in Taiwan [J]. Journal of Medical Ethics,2000 (26):353-357.
①中国老龄事业发展基金会北京松堂关怀医院简介[OL].[2013.2-171.http://www.stghyy.com/yyjs2.asp
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③英国十1940年初开始研究医疗保障等福利计划,有关福利国家整体设计的《贝弗里奇报告》于1942年发表,贝弗里奇主张社会保险要覆盖所有公民,但同时又要充分考虑不同收入人群的生活差异和他们并小相同的保障需求,既要全民覆盖又要分离实施。1946年议会通过了国卫生保健法,直至1948年正式实施。参见：任阵,黄志强等.中国医疗保障制度发展框架与策略[M].北京：经济科学出版社,2009：226.
①即现在的特拉福德综合医院(Trafford General Hospital)。
②英国法律规定,每周收入在80英镑以上的人,需缴纳医疗保险金,其比例大约为10%。
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① Facts and Figures. London:Help the Hospices [OL].[2013-2-5]. http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/
② Marie Curie Cancer Care, "Impact Report: 2008-2009",2009:55. NHS实行的足医疗服务分级制,由初级卫生保健信托基会(Primary Care Trust)和中级卫生保健信托基会(Secondary Care Trust)两部分组成。20世纪80年代以来,英国开始推行医疗体系的内部市场化改革,将筹资付费与服务监管分离开来,由两个机构承担。全国按地区设置了152个初级卫生保健基金,居十国民健康服务系统的核心,掌握了NHS大约80%的资会,成为最大的医疗服务购买者。到了21世纪,英国政府又实行了与商业保险合作,称为“服务外包”(Framework for procuring External Support for Commissioners. FESO。卫生部根据不同商业保险公司资质的评估,最终认定了14家商业医疗保险公司可以初级卫级卫生保健基金提供管理服务。部分术誉好、实力雄厚的保险公司司可以受托承担基会管理,在确保居民医疗服务前提下,保险公司获得部分结余资金作为管理收入。参见：“商业保险参与医疗保障管理的经验及启示,”中华人民共和国财政部社会保障司,2010年3月11日。http://sbs.mof.gov.cn/zhengwuxinxi/diaochayanjiu/201003/t20100311_275453.html.中级卫生保健信托基金中主要有两部分：影响较大、水平较高的地方性或者全国性专科医院,例如玛丽·居里癌证中心就是其中的一个代表,另外一类是大学医学院附属医院,属于教学科研型医院,以救治重大疾病或者疑难病症患者为主。
③ Marie Curie Canter Care. Report and Accounts 2010/11[R].Marie Curie Hospices office, 2011:21. http://www.mariecurie.org.uk/Documents/WHO-WE-ARE/Strategic-Plan/annual-report-accounts-2010-2011.pdf.
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'National Audit office. Results ofCensuses of Independent Hospices & NHS Palliative Care Providers, Fnd of Life Care End of Life[R]. London:the Stationery Office.2008:10. http://www.nao.org.uk/publications/0708/end_of life care.aspx.
② Marie Curie Cancer Care.Impact Report 2008/09[R].2009:55. http://www.mariecurie.org.uk/Documents/WHO-WE-ARK/Strategic-Plan/Nov09-Report-and-Accounts-1109.pdf.
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21977年,西班牙的莫塔拉医院(Mortals Hospital)成立家庭护理小组,专门提供居家临终关怀服务。
(?)德国最早的临终关怀机构成立于1983年的科隆大学附属医院的临终关怀科(Palliative Care Unit University Clinic, cologne),意大利最早的是1980年成立的全国肿瘤研究所米兰和弗罗里亚尼(Floriani)基金会的镇痛病区,属于全另性“护理之家”计划的一部分。
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②需要注意的是，这些统计数之间有些存交叉,例如,288家可以提供居家医疗服务的机构中包括127家居家临终关怀服务机构。参见Facts and Figures. London: Help the Hospices [OL].[2013-2-5]. http://www.helpthehospices.org.uk/about-hospice-care/facts-figures/.
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②这足英国医疗保险补偿机制中的一部分,医院与卫生主管部门或者全科医生签订的一种合同,作为医院提供医疗服务获得资余补偿的依据。总额预算合同要求医院在一定数额资金的支持下为区域内的居民提供一系列的医疗服务。在此类合同中,一般会对队院医疗服务的数量和类型进行具体的规定,只要没有特别说明或者约定,一般就意味着医院提供医疗服务后能够得到足够的资金支持。
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①此机构2003年由十政府十地规划而被迫搬迁,至今未能重建。
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1根据《上海市闸北区卫生系统临终关怀服务规范及要求》,政府给予政策的支持：2007年对新增安宁护理病床予每床1万元的启动经费。2008年区卫生局对开展临终关怀安宁护理的安慰按照安宁护理收治患者的数理给予每人次2000元的补贴。参见施水兴,王荣主编.中国城市临终关怀服务现状与政策研究[M].上海：上海科技教育出版社,2010：185.上海市卫生、财政、人保、医保、民政、红十字会、慈善基金会等7家单位联合下发了《关于做好2012年市政应付实事舒缓疗护(临终关怀)项目的通知》等文件,将临终关怀纳入2012年的政府重要工作,明确了各个部门的职责任务。市区两级财政均把实事“舒缓疗护”项目列入年度预算,项目经费支出2148.73万元,主要用于舒缓疗护病区的的准化建设,例如病房等硬件设施。经费中的一部分用于为贫困居家患者癌痛用药自费部分提供补助。但是没有像闸北区 2008年那样的具体补贴规定。参见中国生命关怀协会.上海市实事“舒缓疗护”项目实施情况及相关建议[EB/OL].(2013-2-19)[2013-3-30].http://www.cnaflc.org/contents/38/13900.html.
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① Help the Hospices. Annual Report[R].2012:12. http://www.helpthehospices.org.uk/about-us/annual-reports-/.需要说明的是,除了“帮助生命末期关怀组织”的筹资之外,各个临终关怀机构还会各自接受捐赠,所以这些数据会存在一定的差别。玛丽·居里临终关怀院的固定捐款人已达到109,000,他们定期通过银行账户或其他形式进行捐款。2010-11年度,遗产捐款达到2050万英镑。参见Marie Curie Cancer Care. Report and Accounts 2010-11[R].2011:5. http://www.mariecurie.org.uk/Documents/WHO-WE-ARE/Strategic-Plan/annual-report-accounts-2010-2011.pdf.
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