Chinese Medical Sciences Journal, 2018, 33(4): 210-215 doi: 10.24920/003525

观点

缓和医疗在中国综合性三甲医院的实践

宁晓红

中国医学科学院北京协和医学院北京协和医院老年医学科,北京100730

Implement the Palliative Care in Medical Practice of a Tertiary Comprehensive Hospital in China

Xiaohong Ning

Department of Geriatrics, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College, Beijing 100730, China

收稿日期: 2018-10-7   接受日期: 2018-10-9   网络出版日期: 2018-01-07

基金资助: 北京协和医学院教改立项课题.  2015zlgc0120

Corresponding authors: E-mail: ningxh1973@foxmail.com

Received: 2018-10-7   Accepted: 2018-10-9   Published Online: 2018-01-07

Fund: SupportedbytheEducationalReformProjectofPekingUnionMedicalCollege.  2015zlgc0120

摘要

为重病和末期患者实施缓和医疗服务的地点和方式可以是多样的,包括医院诊疗到居家护理。在大陆地区,缓和医疗的理念还没有完全融入医疗实践中。目前大部分的重病和末期患者主要在医院接受治疗。在北京协和医院,缓和医疗实践已经在临床,教学,科研等多个领域得到了长足的发展。本文对北京协和医院缓和医疗的发展情况进行概述,包括团队建设、教育培训、临床实践、科研情况以及如何寻求支持等方面。我们期待能够探索一条适合大陆地区文化和社会背景的有效的末期患者照顾模式。

关键词: 缓和医疗 ; 临床实践 ; 教育 ; 团队建设

Abstract

The locations and modalities of palliative care services to patients with severe/end-stage illness can be diverse, ranging from general hospitals to home-based care. The concept of palliative care hasn’t been fully applied to medical practice by care providers in mainland China, where the seriously ill or terminal patients mainly receive medical care in hospitals. The implementation of palliative care in medical practice has developed greatly in Peking Union Medical College hospital in terms of clinical patient care, education, and research. This article gives an overview of it, and the experiences in team building, promotion, support seaking and fund raising were also discussed in this article. We hope to explore an effective dilivering model of palliative care for end-stage patients that is adaptive to Chinese culture and social environment.

Keywords: palliative care ; medical practice ; education ; team building

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本文引用格式

宁晓红. 缓和医疗在中国综合性三甲医院的实践[J]. Chinese Medical Sciences Journal, 2018, 33(4): 210-215 doi:10.24920/003525

Xiaohong Ning. Implement the Palliative Care in Medical Practice of a Tertiary Comprehensive Hospital in China[J]. Chinese Medical Sciences Journal, 2018, 33(4): 210-215 doi:10.24920/003525

PALLIATIVE care is an emerging medical care service in mainland China. In the past decade, it has been gradually known and accepted by Chinese medical professionals and the publics. However, no delivery model for palliative care has been demonstrated to best fit the medical system and social environment of mainland China.

The practice of palliative medicine in Peking Union Medical College Hospital (PUMCH), one of the most acknowledged tertiary hospital in mainland China, started when Dr. Xiaohong Ning completed her study on hospice and palliative care in Chinese Taiwan in 2012. Currently, PUMCH plays a leading role in promoting palliative care in mainland China. Here we give a glance to the implementation of palliative care in this tertiary hospital, hoping to throw a light for developing or improving palliative care practice in a typical hospital in China.

TEAM CONSTRUCTION

Core members

Initially, one doctor and three head nurses who were interested in end-stage patients care, or who had experienced sorrow and confusions in caring end-staged family member were invited to join the team. The proficiency of our core team member was great boosted by the Quality End of Life Care for All (QELCA) training program,1 which was sponsored by the Beijing Living Will Association. Dr. Ning was the first trainee of QELCA from China. Through this training project, 8 doctors and 5 nurses at PUMCH from department of geriatrics, emergency, anesthesia and pain, nutrition, physical rehabilitation and international medical center have mastered the concepts and primary practical skill of palliative care, and are proactive to incorporate the concept of palliative care into their daily clinical practice. Particularly, a senior dietitian has played an excellent role in disseminating palliative care concepts in hospitals after training.

Points to share

It is crucial to find the right person who has passion and internal initiatives. Involving them in, boosting their ability, and stitching them together are important.

Team building and cultivating

Doctors and nurses who face the dying patients in their daily work and are also interested in making the dying better were invited to join in a WeChat networking group on palliative care, where they share, interact and support each other. They were from the department of cardiology, nephrology, GI, hematology, neurology, neurosurgery, ER, ICU, etc. Besides, psychologists, nutritionists and volunteers are also invited to join us.

We had a social worker who volunteered in part-time providing social supports to patients and their family members in the geriatric department. She also serves as the leader of the volunteer team, which play an important role in ensuring smooth and effective work of the whole team.

An aromatherapist has participated as a volunteer, who has taken care of end-stage patients for years. The aromatherapist also trains our nurses, thus they can help patients with aromatherapy after training. Some of these nurses have become licensed aromatherapists working actively in our team. The funeral staffs were also invited. They initiatively joined us hoping that our team can give them professional instruction in the final stage of hospital death.

With the extensive involvement of the hospital staff, the concept of palliative care has been recognized across the hospital, not only by medical professionals, but also those in rear service department of the hospital. Upon these efforts, palliative care has been acknowledged and supported by leaders of the hospital. The Palliative Care Nursing Group was established in 2017, and the Hospice and Palliative Care Team at the hospital level was formally established in September 11, 2018. Thus palliative care service has been delivered formally on a team-working base, which is a great milestone of palliative care service in the hospital.

Points to share

It is important to have extensive involvement across the hospital. Being known and recognized by not only physicians and nurses, but also supervisor and the support crew of the hospital can provide rich supportive resources for continuous progress.

EDUCATION AND TRAINING PROGRAMS

Team member training

We strive to provide supports for team member to participate various training programs, such as those in the United Kindom, Singapore, Chinese Taiwan, Chinese Hong Kong. We also invited lecturers specialized in palliative care from the United States and Chinese Taiwan to bring the up-to-date knowledge to us.

Education for postgraduates and undergraduates

In February 2014, an optional course named “Palliative Medicine” was officially launched in Peking Union Medical College (PUMC) for postgraduate students. The course starts in spring once a year, with 40 credit hours in total, including lectures, role-playing and clinical placement. There are 30-40 students each year who complete this course.2,3 This course has been highly evaluated by the students.4

In September 2015, we launched the Ubiquitous Massive Open Online Course System (UMOOC),5 which provides a more flexible and convenient training platform for students and teachers. It was designed to become a compulsory course for postgraduates of clinical medicine. The course was awarded the First Prize of Online Course in Beijing. We also designed a two-hour group-based palliative medicine course for postdocto-ral students in 2016.

With the mature of training programs for postgraduates, the “Palliative Medicine” has been implanted in the fundamental subject of the Diagnostics and as an optional course for internship undergraduates of PUMC from April 2018. Clinical cases of end-stage patient were presented and discussed in group-based learning. Thus, the concepts of palliative care and hospice were delivered ahead to the undergraduate medical students.

Continuous medical education

The core team hold a national palliative care training program 1 or 2 times each year. Teaching formats include lectures, case-based discussions, and problem solving consultation. About 400-600 participants national-wide receive palliative care training through this continuing medical education (CME) program each year. Trainees include physicians, nurses, visiting physicians, social worker, volunteers etc. Outside specialists in the field from Taiwan China was invited to join in the lecturer team, which enhanced the quality of training.6 Sponsored by the Beijing Health Planning Commission and National Health Commission in 2017, we carried out a pilot training programs to cultivate trainer in the field of hospice and palliative care in China,7,8 which greatly improve the overall quality of training across the country. Investigations on appropriate educational approaches in palliative medicine in mainland China have been conducted.9-12

Points to share

Education is time-consuming but has long-lasting effects. Training programs for medical students and professionals at various levels of their career life actually promote the progress of palliative care in both academic and social societies. The educational system and the strong teaching ability of a tertiary hospital can empower the development of palliative care greatly.

CLINICAL PRACTICE

Outpatient service

At present, patients in advanced or terminal stage who seek for symptom control and general supports usually come to the geriatric clinics for palliative care service, as there hasn’t a clinic dedicated for palliative care at PUMCH. There have been over 1110 patients and 1890 visits in total that Dr. Ning has seen in her clinic since 2016. Among them about 72% were patients with malignant tumor. There are a few doctors who are able to provide service in terms of symptoms control for end-stage patients, Advance Care Planning (ACP), and help with communication among family members.

A dedicated clinic for palliative care is crucial in order to expand the service to more patients who need palliative care. However, challenges exist for hospital regarding the issue of cost benefit, as these services are usually time consuming with low charges according to the on-going fee-scale in Chinese medical system.

Inpatients service

Hospice ward has not been established in PUMCH. Terminal patients are hospitalized isolately in a variety of departments, including ICU and ER. In the department where our palliative team member works, for instance, the department of geriatrics, international medical center, and gynecologic oncology, the concept of palliative care has been gradually accepted and partially implemented in the practice. When the staff in other departments feel difficult in the management of their patients, they are apt to seek in-hospital palliative care consultation for help.

Since 2014, the request of in-hospital consultation for palliative care has grown remarkably, exceeding 120 times by far. Initially, these requests were mainly for the symptom control, and recently more are for spiritual pain and difficult communications. The in-hospital consultation helps primary care team members to overcome helplessness, helps patients to alleviate symptoms and reach social, mental and spiritual peace. It also helps the family members who are struggling with suffering. Importantly, it eases doctor-patient tension to a great extent. At present, 3-4 doctors in palliative team are competent of initial consultation. It is urgent to strengthen their expertise to meet the increasing requests of consultation.

Points to share

Clinical practice is the cornerstone-the foundation of palliative medicine. In the care service of outpatient clinics and in-hospital consultation, patients and their families benefit from the services we provide, which in turn bring more end-stage patients coming to us for help. Additionally, the in-hospital consultation is also an opportunity to get medical staff learn and understand the palliative care in their practice, which in turn bring more clinical demands for consultation.

CLINICAL RESEARCHES

There are a few research projects going on currently in the field of palliative care at PUMCH. Some are in collaboration with the National University of Singapore, as well as the Asian American Foundation. We are also exploring the community-based hospice care where tertiary medical center serves as the supporter of care provider in community. Main research interests have also been focused on education module and current palliative care status in mainland China.13-20

Points to share

The importance of research lie in that hospital leaders, policymakers and peers can better understand the value, role and benefits of palliative care, so that they can bring more resources for further development. Therefore, research and article-based communication are very important in the long run, although many professionals in this field would commit themselves more in caring patients.

SUPPORTING SYSTEM

Financial support

The Fund for Palliative Care was launched by Peking Union Medical Foundation21 in December 2013, how-ever, the fund-raising seems hard, very limited donation has been recieved from some team members and one patient’s family by far. Dedicated personnel for fundraising is needed. In 2018, we initiated a public welfare project on an online self-helping platform, entitled as the "99 Charity Days", hoping to absorb social fund to support our team.22

Charity foundation from non-profit organizations is an important support resource. Beijing Ren-Ai Charity Foundation, an organization aiming at helping people to die peacefully,23 has supported us in an extensive way in the past two years. The Inspirational Scholarship, established by Beijing Living Will Promotion Association in cooperation with St Christopher's Hospice of UK,24 fund an advanced training program in palliative care, which has educated some pioneers in the field of palliative care in China, including Dr. Ning herself.

Support other than funding is also very important. The Educational Department and the Youth League Committee of PUMCH have been giving us immeasurable assistance to our education program and volunteer team.

Points to share

It has been always said that hospice care worldwide is in shortage of financial support, and there is no exception for us. It is not practical to solely rely on support from government. Fortunately, there are people and organization who share the same passion and values, and always try to understand and support us in various ways. The available resources should be integrated and well utilized in the future. Only in this way can we survive and develop along with the difficulties of social environment.

Social media

The team members of the palliative care at PUMCH actively participate in the public propaganda through public media, such as newspaper, 25-27 magazine,28 and TV shows.29 We also build an official WeChat platform "Henian Yuan", facilitating communication and releasing useful information in the community. The involvement of media makes an extensive social effect and has been a great push to the palliative care movement in mainland China.

Points to share

The power of the media is strong. Looking back the past five years, the concept of palliative medicine being widely spreaded, understood and accepted by the society can be attributed to the friendly and active help from social media. They are actually an indispensable part of our team. In the future, social media can take roles in educating publics about life, death, and Advanced Care Planning.

CHALLENGES

To implement the palliative medicine in a tertiary hospital in mainland China is quite challengeable. Compared to the total population of 14 billions in mainland China, the population of professionals in the field of hospice and palliative care is so sparse.30 The concept and the benefits of palliative care have not been understood by all hospital staff, especially it has not been well recognized by hospital leaders and the government yet. Resources put in the care service for the seriously ill or terminal patients do not bring profits to hospitals financially, which is a very important issue even for non-profit hospitals in China. Besides, the general publics have not fully understood the benefits that patients can get from palliative care, and some misunderstandings exist among them, especially the perception and the attitude towards death.

SUMMARY

The development of palliative care in PUMCH provides an example of implementing palliative care in a comprehensive hospital in China under the circumstance of Chinese culture and social environment. This may serve as a model for Chinese hospitals to develop palliative care practice, or to improve the quality of existing palliative care service. Our next work task is to explore the appropriate strategies to implement palliative care in the entire hospital, and to promote the acceptance of the concept in a board field of medical societies.

Conflict of interests statement

The author has no conflict of interest disclosed.

The authors have declared that no competing interests exist.

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react-text: 112 The number of people living with HIV in the USA increased by 50% to 1.115 million persons from 1996 to 2006 and may exceed 1.5 million by 2015. The rising caseloads are straining the HIV care system, while recession and the unknown fate of health reforms are sources of uncertainty. HIV care in the USA evolved within a fragmented healthcare system. Unique community-based support and education... /react-text react-text: 113 /react-text [Show full abstract]

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Abstract Background China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Methods Case study of three palliative care programs in Chengdu, Kunming, and Beijing. Results The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient-based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Conclusion Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. Implications for Practice With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were able to overcome various barriers to implement palliative care. Lessons from these programs may help to accelerate the progress of palliative cancer care in China. 摘要 背景 . 中国是世界上人口最多的国家, 但获得姑息治疗的机会极为有限。更好地了解中国姑息治疗项目的开发以及如何克服提供服务的障碍, 将告知我们如何将姑息治疗进一步纳入中国肿瘤学实践中。在这里, 我们将介绍三家中国机构姑息治疗项目的开发和基础设施, 以这些为例讨论加快中国癌症患者获得姑息治疗的策略。 方法 . 成都、昆明和北京三地共三个姑息治疗项目的案例研究。 结果 . 中国姑息治疗的三个示例分别来自于一个纳入了成都市姑息治疗的所有主要分支机构的综合性项目、一个昆明市主要基于住院病人的项目和一个北京市早期开发姑息治疗时的小项目。尽管面临有限的培训机会, 死亡和濒死的污名以及缺乏支持临床实践的资源和政策等众多挑战, 但通过有远见的领导、与其它国家合作获得姑息治疗经验、尽责的工作人员和坚持不懈, 这些项目能够克服许多障碍, 为晚期疾病患者提供姑息治疗服务, 并在中国推进这门学科。 结论 . 尽管存在几个综合性项目, 但姑息治疗在中国仍是有限的。我们的研究结果可能会鼓舞中国其它医院的姑息治疗项目开发。

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Objectives. To investigate the preferences of ACP and healthcare autonomy in community-dwelling older Chinese adults. Methods. A community-based cross-sectional study was conducted with older adults living in the residential estate of Chaoyang District, Beijing. Results. 900 residents were enrolled. 80.9% of them wanted to hear the truth regarding their own condition from the physician; 52.4% preferred to make their own healthcare decisions. Only 8.9% of them preferred to endure life-prolonging interventions when faced with irreversible conditions. 78.3% of the respondents had not heard of an ACP; only 39.4% preferred to document in an ACP. Respondents with higher education had significantly higher proportion of having heard of an ACP, as well as preferring to document in an ACP, compared to those with lower education. Those aged <70 years had higher proportion of having heard of an ACP, as well as refusing life-prolonging interventions when faced with irreversible conditions, compared to those aged ≥70 years. Conclusions. Although the majority of community-dwelling older Chinese adults appeared to have healthcare autonomy and refuse life-prolonging interventions in terms of end-of-life care, a low level of “Planning ahead” awareness and preference was apparent. Age and education level may be the influential factors.

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Abstract OBJECTIVES: Chinese people are generally unfamiliar with the concept of advance care planning or advance directives (ACP/ADs), which raises dilemmas in life-support choice and can even affect clinical decision making. To understand and address the issues involved better, we investigated the awareness of ACP/ADs in China, as well as people's attitudes toward medical autonomy and end-of-life care. DESIGN: A multicenter cross-sectional survey, conducted from August 1 to December 31,022016. SETTING: Twenty-five hospitals located in 15 different provinces throughout mainland China. PARTICIPANTS: Pairs of adult patients without dementia or malignancies, and a family member. MEASUREMENTS: Participants self-filled anonymous questionnaires, and the data collected were analyzed to relate patients' sociodemographic characteristics to their awareness of ACP/ADs and attitudes to health care autonomy and end-of-life care. RESULTS: Among 1084 patients who completed the questionnaire, 415 (38.3%) had heard about ACP/ADs. Having been informed about ACP/ADs, 995 (91.8%) were willing to find out their true health status and decide for themselves; 549 (50.6%) wanted to institute ACP/ADs. Regarding end-of-life care, 473 (43.6%) chose Do Not Resuscitate, and 435 (40.1%) wished to forgo life-support treatment if irreversibly moribund. Patients predominantly (481, 44.4%) chose general hospital as their preferred place to spend their last days of life; only 114 (10.5%) favored a special hospice facility. Patients' main concerns during end-of-life care were symptom control (35.1%), followed by functional maintenance and quality of life (29.8%), and prolonging life (18.9%). More highly educated patients had significantly greater awareness of ACP/ADs than less well educated ones (χ 2 02=0259.22, P02<02.001) and were more willing to find out the truth for themselves (χ 2 02=0258.30, P02≤02.001) and make medical decisions in advance (χ 2 02=0255.92, P02<02.001). Younger patients were also more willing than older ones to know the truth (χ 2 02=0238.23, P02=02.001) and make medical decisions in advance (χ 2 02=0218.42, P02=02.018), and were also more likely to wish to die at home (χ 2 02=0296.25, P02<02.001). Only 212 patients' family members (19.6%) wanted life-support treatment for themselves if irreversibly moribund, whereas 592 (54.6%) would want their relative to receive such procedures in the same circumstances; a similar discrepancy was evident for end-of-life invasive treatment (18.3% vs 42.7%). CONCLUSIONS: Awareness about ACP/ADs in China is still low. Providing culturally sensitive knowledge, education, and communication regarding ACP/ADs is a feasible first step to promoting this sociomedical practice. Copyright 08 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

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