背景與需求
2002 ~ 2003年, 陳明慧護理師 (Sandy Chen Stokes) 代表加州慈心關懷聯盟 (California Coalition for Compassionate Care)，針對在美華人做了一項對生命末期的需求評估，顯示在美華人缺少有關在語言和文化方面適當的生命末期資訊。這項評估的對象包括八十二位講國語與廣東話的華人和八位華人醫生。 評估發現, 因為沒有適當的中文資訊, 許多華人家庭在家人的生命末期會面臨棘手的醫療抉擇。大多數人以為他們只有兩種選擇，“不顧一切的急救”或是“放棄治療”。這種信念是因為:

• 缺乏生命末期療護的中文資訊，包括疼痛控制、安寧療護、臨終過程和事前指示

• 由於語言和文化的不同，造成和醫護人員間的不良溝通，導致經常缺乏信任

• 在華人文化裡，生命末期的話題是忌諱談論的

• 許多經歷過家人過世的參與者表示，如果當時他們有較多完整的資訊，他們會做出不同的決定。

   華人醫生注意到，華人的一些信仰和觀念對提供有品貭的生命末期護造成阻礙，其中包括:

• 相信提到死亡就會導致提早死亡

• 相信死在家中會帶來厄運，並使房子難以出售

• 即使在生命末期，仍害怕止痛藥物上癮的問題

• 不易接受讓陌生人來家裡提供醫療照護

聯盟的功能
成立於2005年12月的美華慈心關懷聯盟 (Chinese American Coalition for Compassionate Care)，有鑑於華人社區缺少關於在語言和文化上適當的生命末期中文資訊，而成立了全美唯一為華人從事生命末期服務的組織。

美華慈心關懷聯盟至今已有一百七十多位會員，代表五十多個團體。包括國家安寧和緩和療護機構 (National Hospice and Palliative Care Organization), 加卅慈心關懷聯盟 (California Coalition for Compassionate Care), 美國癌症協會加卅華人分會 (American Cancer Society-California Chinese Unit) , 阿滋海默症協會北加州分會 (Alzheimer’s Association of Northern California & Northern Nevada Chapter), 加州器官捐贈組織 (California Transplant Donor Network) , 山谷安寧療護 (Hospice of the Valley), 禪宗安寧療護 (Zen Hospice), 安樂居 (OnLok Senior Health Services) , Laguna Honda Hospital & Rehabilitation Center, 法鼓山 (Dharma Drum Mountain Buddhist Association), 及慈濟美國分會 (Tzu Chi Foundation Northwest Region) 。參與的會員們帶來了豐富的知識，技能和經驗，涵蓋了醫學、護理、社會工作、藥劑、法律、心靈、溝通和學術教育。

目前, 美華慈心關懷聯盟的活動大多在舊金山灣區和矽谷華人集中的地區。我們計劃日後擴展到全加卅、全美及其他國家，以促進生命末期療護的多元性。

為了減少新組織的開支，美華慈心關懷聯盟得到加卅慈心關懷聯盟運作上的支持。加卅慈心關懷聯盟是加州健康信託基金會 (California Health Foundation and Trust) 的一項健康服務品質推廣計劃。美華慈心關懷聯盟已在2007年8月正式成為非營利慈善機構, 所有的捐款，都可以依稅法申報，獲得免稅優惠。

陳明慧護理師是美華慈心關懷聯盟的創辦人。她專注於為在美華人提昇生命末期品質的療護，並以她的護理經驗，將生命末期的議題帶入華人社區，喚起華人社區的關注和支持。她是國家安寧及緩和療護機構全美生命末期多元化諮詢委員會委員。

成果
美華慈心關懷聯盟在2006年8月，為九十九位說中文的義工和家屬照顧者舉辦了一日培訓。內容包含了溝通、心靈 和宗教、生命末期療護和社會心理調適。這次培訓以國語講演，並提供英語同步翻譯。百分之七十的參與者評價這次培訓是非常有幫助。第二屆義工培訓已在2007年11月由台灣請到賴允亮醫師及張寶方女士做二天的培訓。

加州慈心關懷聯盟在2006年9月, 由阿姆斯壯基金會 (Lance Armstrong Foundation) 的全國甄選中，獲得 $24,000元的贊助經費。這筆基金使美華慈心關懷聯盟在九個月中完成了在大舊金山灣區的華人社區大眾、癌友和親人們的教育宣導活動。活動包括了媒體傳播、成立講師團, 並為四百多位華人宣導了有關疼痛控制，緩和療護和生命末期問題。與會者並得到了完整的中文資料。

2007年7月，國家安寧及緩和療護機構在美華慈心關懷聯盟的協助下，製作了“在美華人生命末期服務推廣指南”。

未來計劃
美華慈心關懷聯盟的成員們已確定了華人社區在有關生命末期的資訊、資源和工具等方面的需求。以下是近期目標的摘要：

義工培訓
根據2006年及2007年的培訓學員評估反應，修改校正一日培訓課程。把更多的互動訓練編入課程中，增加經驗的學習和應用。精益求精的課程將成為日後的教學模式，也可以做為其他組織培訓的現成教材。

醫療專業人員的培訓
培訓將針對服務生命末期華人病患及家屬的專業人員。課程將包括如何對病患及家屬做病情告知、如何為華人介紹安寧及緩和療護、文化和靈性問題、華人對止痛藥的看法、止痛藥與中醫藥草的相互作用、中國傳統輔助療法的角色，和華人對人工餵管的營養和水份補充問題。這項培訓將以英文為主，但是會用中文解譯，並讓參加者能用中文解釋特殊的問題。

講師培訓
在華人社區中培養有生命末期療護知識、善於表達且關懷生命末期議題的講員。

心願卡
按文化和語言差異，修譯心願卡 (Go Wish Cards) 的中文版。在華人社區評估心願卡的實用性，並推廣心願卡。使華人能透過遊戲的方式，和親友們討論生命末期的願望。

病重孩童父母的網站
與兒童安寧及緩和療護聯盟 (Children’s Hospice & Palliative Care Coalition) 的 “父母的夥伴” (Partnership for Parents) 合作，考量重病孩童父母親的文化背景， 提供適宜的中文資訊和資源網站。

期盼您的幫助
美華慈心關懷聯盟已在短時間內以有限的經費完成許多的工作。然而，要維持這份動力，我們需要尋求經費。

美華慈心關懷聯盟的需求正在快速的增長，而所有的工作完全依靠義工， 我們更要避免造成義工們的過度透支。目前的聯盟會活動包括協調聯盟會議、招募新會員、擬定及執行新企劃和申請經費。

以下的幫助將確保這些工作繼續下去:
       成為美華慈心關懷聯盟的會員
      成為美華慈心關懷聯盟的義工

                   沒有特定的一般捐款 (Unrestricted donation)
• 提供聯盟會議午餐及開會場地
• 幫忙我們發掘有興趣支助美華慈心關懷聯盟的人士
• 讓我們知道您想提供的幫忙

美華慈心關懷聯盟董事會 CACCC Board of Directors

• 李玲 Lisa Liu, Board Chair
• 陳慈倡 Grace Chen, CFP, Treasure
• 陳曉峯 Steven Chen, PhD, Secretary
• 莊雯婷 Wendy Chuang, DC
• 茱蒂‧施蔻  Judy Citko, JD
• 徐永生 Larry Hsu
• 郭瑞濛 Monique Kuo, MD
• Steve Lai, MD
• 趙菠倩 Pauline Nee, RN, MSN
• 林美娟 Sherry Shih
• 陳明慧 Sandy Stokes, RN, MSN, Executive Director
• 雷美綉 May Sung, MPH
• 黃亮瑜 Jackie Wong, LCSW
• 溫潔貞 Jeanne Wun, BA
• Edie Yau, MA

 美華慈心關懷聯盟講師團 CACCC Speakers’ Bureau

• 陳曉峯 Steven Chen, PhD
• 莊雯婷 Wendy Chuang, DC
• 龔振成 Emery Kong
• 楊開敏 Therese Kai Min Merrill
• 趙菠倩 Pauline Nee, RN, MSN
• 林美娟 Sherry Shih
• 陳明慧 Sandy Chen Stokes, RN, MSN
• James Sutikto
• 曹知行 Alex Tsao PhD
• 溫淑敏 Mindy Wen, SW
• 黃亮瑜 Jackie Wong, LCSW
• 吳圓娥 Yuaner Wu, RN, MS, CNS

Background

A needs assessment of Chinese Americans conducted in 2002-03 by Sandy Chen Stokes on behalf of the California Coalition for Compassionate Care revealed a lack of linguistically and culturally appropriate information about end of life available to Chinese Americans.  The assessment included focus groups conducted in Mandarin and Cantonese with 82 Chinese consumers and interviews with eight Chinese physicians.

Findings indicated that many Chinese families facing difficult medical decisions at the end of life simply do not have adequate information for making informed choices.  Most believe their choices are limited to only two options – aggressive life-sustaining measures or “giving up.”  This belief is fostered by:

§       A lack of information in Chinese on end-of-life care, including pain management, hospice, the dying process, and advance directives;

§       Poor communication with non-Chinese healthcare providers due to language differences and a lack of cultural competence, often resulting in the lack of trusting relationship; and

§       Discomfort and taboo in the Chinese culture when talking about end-of-life issues.  

Many participants who had experienced the death of a family member said they would have made different decisions if they had had more complete information at the time. 

Chinese physicians noted that certain beliefs and attitudes common among Chinese create barriers to the provision of quality end-of-life care, including:

§       The belief that talking about death will result in an earlier death;

§       The belief that dying in a house will bring bad luck and make the house difficult to sell;

§       A fear of drug addiction, even in the last stage of illness; and

§       A general discomfort with having strangers in the house providing care.

Organizational Capacity

The CACCC was formed in December 2005 to address the lack of linguistically and culturally appropriate information about end of life available to the Chinese community. The CACCC is the only organization in the nation devoted to end of life issues facing Chinese Americans.  

In less than two years, CACCC has grown to a coalition of over 50 organizations.  Participating organizations include the national Hospice & Palliative Coalition Organization, California Coalition for Compassionate Care, American Cancer Society – California Chinese Unit, Alzheimer’s Association – Northern California & Northern Nevada Chapter, California Transplant Donor Network, Hospice of the Valley, Zen Hospice, On Lok Senior Health Services, Laguna Honda Hospital & Rehabilitation Center, Dharma Drum Mountain Buddhist Association, Herald Cancer Care Network, Stanford Geriatric Education Center (SGEC), Hospice Foundation of Taiwan and Tzu Chi Foundation USA. More than 150 participating individuals bring a rich depth of knowledge, skills, and experience to the coalition, from fields which include medicine, nursing, social work, pharmacy, law, spirituality, community relations, communication, and academia.

Currently, CACCC efforts are focused on the San Francisco Bay Area and the Silicon Valley because of the concentration of Chinese Americans in these geographic areas.  As the CACCC grows, we plan to expand our outreach throughout Northern and Southern California as well as nationally. The CACCC serves as a model for other efforts throughout the nation to promote diversity and cultural sensitivity in end-of-life care.  The CACCC has also developed relationships with end-of-life leaders in Taiwan.

To minimize the initial costs associated with establishing a new organization, the CACCC receives operational support from the California Coalition for Compassionate Care (CCCC), a project of the California Health Foundation & Trust (CHFT).  The CACCC Incorporated in August, 2007.

The CACCC is a non-profit charitable organization qualified to receive tax-exempt donations under IRS Code Section (501)(c)(3).

Sandy Chen Stokes, RN, is the CACCC founder and Executive Director.  She is a public health nurse and a passionate and tireless advocate for quality end-of-life care for Chinese Americans.  Ms. Stokes has a wealth of experience in bringing end-of-life issues to the Chinese community.  She serves on the “Diversity in End of Life” advisory committee of the National Hospice and Palliative Care Organization (NHPCO).

Accomplishments

In August 2006, the CACCC piloted a one-day training on end of life for Chinese-speaking volunteers and family caregivers.  99 people attended this training, which addressed communication, spirituality and religion, end-of-life care, and psychosocial issues.  The training was provided in Mandarin with simultaneous translation into English.  Seventy-five percent of attendees rated the training as most helpful or very helpful. This training was developed within a mere eight months after the CACCC was first formed.  All the work that made it possible was provided on a volunteer basis.

The Second Annual EOL Volunteer and Caregiver Training was held on November 3 & 4, 2007. The training was accompanied by lectures to the general public by Dr. Enoch Lai and one of his volunteers on the EOL movement in Taiwan.

In 2006, the CCCC received a nationally-competitive grant from the Lance Armstrong Foundation in the amount of $24,000 to fund a new CACCC project.  These funds allowed the CACCC conduct outreach to Chinese-speaking cancer survivors and their loved ones in the greater San Francisco Bay Area.  Activities included conducting a media campaign, establishing a speakers’ bureau, and disseminating written materials on pain, hospice & palliative care, and end-of-life issues in Chinese. 

Last summer, the National Hospice & Palliative Care Organization turned to the CACCC for assistance with the development of the NHPCO's “Chinese-American Outreach Guide”, which is being distributed nationally.

Future Plans

The CACCC is an enthusiastic and ambitious group.  CACCC members have identified multiple needs in the Chinese community for culturally and linguistically appropriate information, resources, and tools regarding end of life.  Below is a summary of a few of the CACCC’s current plans:

• Training for Volunteers and Caregivers

Based on feedback from the two trainings, revise and refine the one-day curriculum on end-of-life issues for Chinese-speaking volunteers and family members.  Incorporate more interactive exercises into curriculum to increase experiential learning and application.  Train 300 additional volunteers and family members.  Create a train-the-trainer format, which can be used off-the-shelf by other organizations that train volunteers.

• Training for Healthcare Professionals

Develop training for healthcare providers who work with Chinese patients and their loved ones at the end of life.  Possible topics include breaking bad news, introducing hospice and palliative care, cultural and spiritual issues, Chinese views on pain medication, the interplay of pain medication with Chinese herbs, the role of complimentary therapies based in Chinese tradition, and nutrition and hydration issues facing Chinese.  The training would be provided primarily in English with explanations in Chinese to provide those attendees fluent in Chinese with examples of how to translate particular issues.

• Speakers Bureau

Develop a cadre of knowledgeable, articulate, and passionate end-of-life leaders from within the Chinese community who will provide presentations on EOL issues for organizations and groups requesting them, and for CACCC-initiated events.

• Go Wish Cards

Provide a culturally and linguistically appropriate translation of "Go Wish", an innovative “card game” approach to getting people to talk with their loved ones about their end-of-life wishes.  Conduct focus groups to evaluate the usefulness of this tool with various segments of the Chinese community.  Develop a strategy for disseminating Go Wish in the Chinese community if the focus group feedback is positive.

• Helping Parents of Seriously-Ill Children

Develop culturally-appropriate information and resources written in Chinese for parents of seriously-ill children in collaboration with Partnership for Parents (www.partnershipforparents.org).

How You Can Help

The CACCC has been able to accomplish quite a bit in a short amount of time with minimal financial support. Sustaining the momentum, however, will require financial resources. 

As the CACCC matures, its needs will grow.  Relying completely on volunteers to do all of the work runs the risk of burning out people and limits the CACCC's potential. Certain activities that need to occur simply to sustain the organization – such as coordination of coalition meetings, recruitment of new members, development of new projects, and solicitation of new grants, will eventually require paid staff.

You can help make sure this good work continues by:
       Join the CACCC.
       Become a CACCC volunteer.

• Making an unrestricted donation to the CACCC.
• Providing lunch or space for one or more coalition meetings.
• Helping us identify potential donors or grant funders who might be interested in supporting the work of the CACCC.
• Letting us know how you would like to help.

Donations, gifts and bequests to the CACCC are deductible under IRS Code Section 501(c)(3). If you are interested in contributing to the CACCC's work, please contact Sandy Chen Stokes at (530) 676-6060 or by email at executivedirector@caccc-usa.org Sandy will be happy to answer any questions you have.

Brief Bios of the CACCC Directors

Grace Chen, MBA, a certified financial planner, was president of the Asian Chamber of Commerce in 1997. Since 1988, Grace has been an active volunteer with the Tzu Chi Foundation. In 1998, as president of a Rotary Club chapter, she formed a group to care for children with special needs. She also served as a board member of the Asian Corps of the American Cancer Society in Houston, Texas. Grace is a board member of the Society of Financial Service Professionals

Steven Chen, PhD (Computer Science), a senior principal engineer for Apache Design Solution is currently a board member and vice president of the Mahabodhi Buddhist Society (MBS). Steven is a current respite program volunteer of the American Cancer Society, California Chinese Unit. In 2006, he joined the CACCC as a volunteer and served on the CACCC steering committee. Steven also serves on the CACCC speaker’s bureau. Steven received his M.S. in Electrical Engineering from National Taiwan University.

Wendy Chuang, Doctor of Chiropractic, currently practices at Natural Health Pros in Sunnyvale and serves as part-time faculty at Palmer College of Chiropractic West. Wendy has served as a volunteer locally and abroad with the Tzu Chu Foundation, the American Cancer Society, and other service groups.  She has conducted numerous health seminars for companies, senior care homes, small focus groups, and Asian community associations.

Judy Citko, JD is Executive Director of the California Coalition for Compassionate Care, a statewide collaboration of over 60 organizations, representing healthcare providers, consumers, and regulatory agencies, devoted to improving end-of-life and palliative care for Californians. Ms. Citko has nearly 20 years of experience in healthcare. Before joining the Coalition, she worked as a lobbyist and lawyer for hospitals, skilled nursing facilities, and managed care providers.

Larry Hsu, MS (Mechanical Engineering) is former President and Board Member of the American Cancer Society, California Chinese Unit. He also served as VP, Principal, and Board Member of the Fremont Chinese School. Larry was the Chair of the 2007 Confucius Memorial Ceremony. Currently he serves as a board member of Citizens for A Better Community. Larry works as an engineer for Lockheed Martin Space Systems Company in Sunnyvale.

Monique Kuo, MD graduated from Boston University School of Medicine in 1997.  After finishing her residency in Internal Medicine at Santa Clara Valley Medical Center in 2000, Dr. Kuo completed a Palliative Care fellowship at the Palo Alto VA Hospice Care Center.  She then worked at the Palo Alto and Livermore divisions of the Palo Alto Health Care System.  Dr. Kuo is board certified in Internal Medicine and Palliative Medicine.  She has been with Hospice of the Valley since 2001 and is currently one of the medical directors of Hospice of the Valley.

Steve Richard Lai, MD is a Geriatrics/Internal Medicine Physician at the Santa Clara Valley Medical Center and has served as Geriatrics Education Coordinator at the center since 2005. Steve was a Geriatric Fellow Representative to the American Geriatric Society-Ethnogeriatrics Committee from 2003 to 2005 and Director of the Geriatrics Continuity Nursing Home Curriculum at UCSF (2003-2004). Steve has given numerous lectures on subjects ranging from cancer pain management to serving uninsured patients.

Lisa Liu, a business manager for a medical group in the Bay Area, has served as board member, vice president and president of the American Cancer Society California Chinese Unit. During her term as ACS-CCU president, she launched a pilot respite program, the first such program in American Cancer Society history. The respite program currently provides services to five geographic regions in northern California. Currently, Lisa is co-chair of the second annual ACS-CACCC end-of-life training for caregivers and volunteers.

Pauline Nee, RN, MSN has been working in medical oncology for over 20 years. She is currently a nurse manager at the Kaiser Medical Center in Santa Clara. Pauline has been a volunteer for the American Cancer Society, California Chinese Unit, since 1995 and was a founding member of the CACCC. She served on the CACCC steering committee since its inception. She has translated numerous educational materials for cancer survivors and caregivers and has given many presentations on self-care during treatment for cancer.

Sherry Shih has been a Tzu Chi volunteer for 20 years and is currently the director of the Tzu Chi medical group. Sherry is also the founder of Tzu Chi’s dialysis patient support group. Sherry, a mother of three, has worked in the computer industry for over 20 years.

Sandy Chen Stokes, RN, MSN, a geriatric nurse specialist and public health nurse, is the founder and Executive Director of the CACCC. Sandy has promoted the use of the Advance Health Care Directive and other EOL issues in the Chinese media and at conferences around the nation. In 2001, she arranged to have Bill Moyer’s “Finding Our Way” series translated into Chinese and published in the World Journal. Sandy currently serves on the “Access Diversity” advisory council of the National Hospice and Palliative Care Organization.

May Louie Sung, MS (Public Health) has served the American Cancer Society in numerous capacities for over 24 years. She is currently Vice President of Health Promotions for Mission Delivery in the California Division. She also provides supervisory oversight for the California Chinese Unit located in Fremont.  May currently serves as volunteer Community Director for the National AANCART (Asian American Network for Cancer Awareness, Research and Training) funded by the National Cancer Institute.

Jackie Wong, MS a Licensed Clinical Social Worker, heads the social work department at On Lok Senior Health Services in San Francisco. She has over 14 years of experience working with the frail elderly. Jackie represents On Lok at local, county, and statewide meetings, focusing on issues such as end-of-life care and caregiver education. She also appears as guest lecturer at local colleges and universities and presents at various conferences.

Jeanne Wun, BA (Sociology) is Community Relations Manager for Hospice of the Valley. Jeanne has over 20 years of experience in sales, marketing, marketing communications and public relations with high technology companies. Prior to joining Hospice of the Valley, she was a marketing consultant for companies that included high-tech start-ups, a landscape architect, an importer/distributor, an award-winning author, and a nonprofit hospice. Jeanne is an alumnus of the Institute for Women’s Leadership.

Edie Yau, MA (Gerontology) is the Director of Diversity for the Alzheimer's Association, Northern California and Northern Nevada Chapter. With the Alzheimer’s Association since 1999, Edie designs Chapter outreach and develops special programs and publications for Bay Area Chinese, Latino and African American communities.  In the field of aging for over 10 years, she formerly worked at Kimochi, Inc. serving a diverse elder population as a case manager and later as a program manager.