Once again, it is the time of Ching Ming Festival, with drizzling rain. However, it is also the warm spring season, where all things revive, and vitality abounds. Every April, when we think of those who are no longer with us, we cherish even more the presence of those who are still alive. Birth , aging, illness, and death are part of life. How to enjoy the final moments of life has been a topic that Professor Helen Chan from the Nethersole School of Nursing at the Chinese University of Hong Kong (CUHK) has pondered for nearly 20 years.
Hong Kong takes pride in its longevity and was once leading the world in life expectancy for seven consecutive years. While pursuing an increase in average lifespan, it is equally important to pay attention to the resources and support for end-of-life care, ensuring the quality of life in the final stages. In this edition of Cubic Zine, we feature Helen and her team’s pioneering work on Advance Care Planning (ACP) in Chinese-speaking regions, examining its effectiveness and international impact.
The Dilemma at the End: Remove the Lifeline or Lie as a “Living Dead?”
The concept of “Advance Directives” was first proposed in 1967 by Luis Kutner, a lawyer advocating for human rights, during a conference of the Euthanasia Society of America. Subsequently, due to the court ruling on whether to withdraw ventilators from a vegetative patient (see the Karen Ann Quinlan case), California became the first state to pass the Natural Death Act in 1976, protecting the right of individuals to establish a “Living Will” and allowing them to decide whether to continue life-sustaining treatment (such as CPR and mechanical ventilation) in the event of terminal illness or unconsciousness. If individuals unfortunately fall into a coma due to severe illness in the future, medical staff will cease the provision of life-sustaining treatment(s) that the patient had previously refused. However, this does not equate to euthanasia. Although both aim to reduce the patient’s suffering, euthanasia involves directly ending a patient’s life through medical means, which goes against healthcare ethics and is deemed illegal in most countries. On the other hand, stopping futile life-sustaining treatment is to allow the patient to pass away naturally.
However, the experience in the United States reflects a simple push for signing legal documents could not promote prior discussions between individuals and their families or healthcare providers regarding end-of-life care. Similar court cases have continued to occur over the next twenty years. Therefore, the concept of ACP has started to gain attention, hoping that individuals can communicate their preferences for future medical or personal care with their families before signing Advance Directives.
In the early 2000s, the promotion of ACP in Western countries was still in its early stages. When reading limited literature on the subject, Helen noticed, “The Western approach is very straightforward. They would ask right from the beginning: Do you want to receive cardiopulmonary resuscitation? What kind of treatment do you think you should receive at the end of life? I feel that we cannot ask these questions in our Chinese culture.”
Implementing ACP in the Chinese community is not an easy task. Contemporarily, the interpretation of the Chinese cultural concept of “filial piety” focuses on prolonging life. When a patient is critically ill, most people still insist on exhausting all treatment options, fearing that giving up treatment will deprive the patients’ sense of hope and leave regrets. People often find themselves caught in this dilemma. At the same time, Chinese culture tends to be tabooed about the topic of “death,” and communication styles are often indirect and subtle. Simply copying Western practices will not work.
Helen’s development of a localized version of ACP focuses heavily on a person-centred approach, adapting to the culture and communication styles of the Chinese community. Nurses or social workers act as intermediaries and establish mutual trust through conversations with the individuals, gradually leading into the main topic. They then invite the individual’s family members to get involved and assist the individual in expressing their thoughts to their loved ones.
Shirley, a member of the team who studied gerontology before becoming a social worker, describes ACP as “not just about medical decisions but also about reflecting on one’s entire life.” In interviews with individuals, nurses or social workers first guide them to reflect on their past life experiences, such as their health conditions and the circumstances of their loved ones’ deaths. This prompts personal reflection on their values regarding end-of-life care and allows them to envision their future preferences for care. Helen encourages colleagues not to worry about being accused of wrongdoing. She says, “When we broach the subject of end-of-life care, some patients or family members may find it difficult to accept or even become angry and complain about us. But if we gather the courage to say a few words, it can help the family prepare psychologically. If the responsibility of decision-making is left to the family, they may carry guilt for a lifetime.”
Turn Low Points into Turning Points in Life
Having worked in nursing homes and geriatric wards, Helen witnessed many older adults receiving futile life-sustaining treatments and participated in numerous resuscitation efforts. “I come from a nursing background, and graduating back then was like being unemployed. Luckily, I was hired as a nurse in a nearby nursing home. Many older adults living in the nursing home were bedridden, in a vegetative state, relying on treatments like nasogastric tube feeding to sustain their lives. Later, when I had the opportunity to work in a hospital, I witnessed a different scenario: personally performing resuscitation for many critically ill elderly patients, which made me reflect on the meaning of resuscitation. When I and my family grow old, should we also accept such a life? How can we improve end-of-life care?”
Helen joined CUHK in 2009. Her research project is titled “Let Me Talk”. Its Chinese name 「吾」可預計 was inspired by conversations with the older adults, where they expressed the sentiment that “things in the future cannot be predicted.” 「唔可預計」 means unpredictable. By changing the negation 「唔」 to the traditional Chinese expression of personal pronoun “I” 「吾」, it transforms the negation into an affirmation, emphasizing personal control over life and empowering individuals to decide how to conclude their own lives.
Helen went through a dark period when she lacked funding and resources, causing team members to leave, and faced a lack of understanding and support for her research. She encountered rejection when promoting her work to various nursing homes. However, she remained steadfast in her commitment to advancing end-of-life care, dedicating her time and employing her own methods, aiming to achieve results and demonstrate the value and significance of this research to the world. “I know exactly what I want to do. So, over the years, I have overcome these obstacles. I will persist in my original intention.”
The Knowledge Transfer Project Fund (KPF) illuminated Helen’s darkness and brought a glimmer of dawn. “I really appreciate the Office of Research and Knowledge Transfer Services (ORKTS). It dares to try different things. When I couldn’t secure funding through other channels, I mustered the courage to apply for KPF, and I’m grateful for the opportunities it has given me.” Through two phases of KPF funding, the “Let Me Talk” Project established its own website, produced short films to raise public awareness about the topic, and developed evidence-based ACP training courses.
From Family Welfare Society to Legislative Council
Under Helen’s strong advocacy, an ACP project by the Hong Kong Family Welfare Society (HKFWS) was launched in 2017. Helen provided training for nurses, social workers, and other colleagues involved in delivering the service. She also collected data from participants before and after receiving the ACP service through questionnaires, and the data analysis helps to improve the service. In 2021, with additional funding support of Vera Ruttonjee Desai Charitable Fund, the project expanded its services. Participants can now sign the “Three Instruments of Peace,” which include Advance Directives, Enduring Powers of Attorney (EPA), and a will. The EPA authorizes an appointed person to manage the financial affairs of the grantor when the grantor is mentally incapacitated.
Since Advance Directives only take effect in end-stage illnesses, persistent vegetative state or irreversible coma, or end-stage irreversible life-limiting conditions, the FWS’ project specifically targets three groups: individuals aged 60 or above with life-threatening illnesses, those aged 80 or above, and recipients of comprehensive social security assistance or low-income individuals. Hong Kong is expected to complete the legislative process for The Advance Decision on Life-sustaining Treatment Bill this year, granting autonomy to all individuals aged 18 or above to determine their end-of-life decisions. The bill includes advance medical directives (AMDs), do-not-attempt cardiopulmonary resuscitation (DNACPR) order, following the principle of “cautious making, easy revoking.” “Cautious making” ensures that two witnesses are present during the signing process, while “easy revoking” allows the maker of the decision to revoke the previously signed instructions at any time when they are mentally competent.
According to the legislative work plan in early January of this year, the bill is scheduled for the second and third readings in the second quarter of this year. After the legislation is passed, there will be a transition period of one and a half years, during which education and promotion will be conducted among the medical and social welfare sectors and the general public. On April 26, Helen will also give a community lecture to raise public awareness about Advance Directives and share her experiences.
Signing Documents with Warmth
During the Legislative Council Bill Committee meeting, concerns were raised by some legislators about the possibility of patients lacking communication with their family members before signing the documents. This concern arises because the signing process only requires one doctor and one impartial witness. If family members do not understand the patient’s intentions, they may question the decisions made by the patient in the documents, thus placing the burden on healthcare professionals. In response, Dr. Doris Tse Man-wah, chairwoman of the Hospital Authority Clinical Ethics Committee, emphasized that the signing process will involve the patient’s family members to allow them to personally hear the patient’s intentions.
While promoting ACP, indeed, Helen aims to facilitate communication among family members: “I didn’t start by promoting the signing of these documents. If we only focus on signing the documents, there will certainly be many disputes, just like legal battles over wills. So, what I am striving to promote is family sharing and communication.”
In the implementation of ACP by HKFWS, Charis, who is involved in the project, admits receiving numerous consultations every day regarding signing the documents. “What we want to achieve the most through the project is not just signing a lot of documents, but ensuring that there is communication between the people expressing their intentions and their family members. Only when family members know their intentions can they make decisions that truly align with the person’s wishes.” John, a team member who has worked in the accident and emergency department, also expressed his thoughts from a clinical perspective: “Even without legal documents, if family members are willing to speak up at the hospital and tell the doctors, ‘My parents wouldn’t want this,’ it can actually ensure that the older adult could receive good end-of-life care.”
Dr. Cheryl Yeung, a team member, shared stories she has heard in her service. She mentioned an old lady living alone with early-stage dementia and having ten children. Each evening, one of the children would have dinner with her, taking turns because they were all concerned about her loneliness. This heart-warming example deeply moved Cheryl: “In each person’s life story, I have gained a lot. Witnessing how they can understand each other better through ACP and have a clearer idea of how to navigate the future path brings great joy and satisfaction as healthcare professionals.”
The Trend of “Self-Determined End-of-Life” Is Growing
In 2008, Helen published her doctoral thesis, analyzing the effectiveness and insights of the Let Me Talk project (predecessor to the current version). The project offered ACP for 121 older adults living in local nursing homes, guiding them to reflect on their life experiences through storytelling (My Story). This helped them clarify their perspectives on life (My Views) and plan for their final journey (My Wishes). It became the first ACP program tailored for the Chinese community and has since been adopted in other Asian regions.
In 2011, the Ministry of Health in Singapore launched an ACP program called “Living Matters.” It is implemented by the Agency for Integrated Care (AIC), an independent organization under the Ministry of Health. ACP can be conducted in hospitals or online. The program handbook they developed is divided into sections such as My Reflections, My Views, My Care Goals, and My Next Steps. It allows individuals to proactively assess their own situation and plan their care, with the option to upload this information to the national electronic medical records.
During the initial implementation phase from 2011 to 2015, only 5,100 Singaporeans established ACP. However, with increasing publicity efforts and a more open societal discussion about “death,” as of the end of May 2023, over 36,600 Singaporeans have established ACP.
Taiwan officially implemented the Patient Right to Autonomy Act on January 6, 2019. This Act empowers patients with the opportunity to be informed and make choices. Patients can ensure a dignified end-of-life by signing an Advance Decision that safeguards their wishes in five clinical conditions. The patient expressing their wishes must undergo ACP consultation in the hospital with immediate family members up to the second degree of consanguinity. The consultation team consists of one doctor, one nurse, and either a psychologist or a social worker. Each consultation typically lasts 60 to 90 minutes.
On January 6 this year, Taiwan had the 5th anniversary of the implementation of the Patient Right to Autonomy Act. Over 60,000 people have signed the Advance Decision, but this accounts for less than 1% of the adult population. Insufficient human resources for the consultation teams pose a significant challenge to the operation. Even with a considerable number of people voluntarily signing after the pandemic, the existing manpower is struggling to cope.
The Beijing Living Will Promotion Association was established in 2013 to promote the concept of end-of-life care planning in various provinces and cities in China. In 2022, Shenzhen also enacted legislation on Advance Directives, respecting individual’s decision of rejecting life-sustaining treatment in the late stage.
Actively Promoting ACP Development in the Asian Region – Diligently Bringing People Together
As a behind-the-scenes advocate for over a decade, Helen is delighted to see the legislative work on Advance Directives in Hong Kong progressing rapidly. She says, “Legislation provides us with many new opportunities. I am very grateful to be able to participate in this process during this time. But I think the most important thing is the team. Even if I speak tirelessly, it is not enough with just me. Our future direction is how we can effectively promote this matter.”
Helen will continue to devote herself to public education, planting seeds in more individuals. She also hopes to involve more stakeholders from the business, legal, and media sectors alongside healthcare and social work collaborations to provide conducive conditions and environment for the seeds to flourish. With the passing of time, she patiently awaits their rooting, sprouting, and coming to fruition.
Additional Information:
JCECC Community Talk Series on “Advance Decision on Life-sustaining Treatment Bill”
Seventh Session：
| Date： | April 26, 2024 |
| Time： | 4- 5:30pm |
| Venue： | Room 202, 2/F, Duke Of Windsor Social Services Building, 15 Hennessy Road, Wanchai, Hong Kong |
| Speakers： | Background and Introduction of “Advance Decision on Life-Sustaining Treatment Bill” Mr. Albert Lam, Consultant for Health, Health Bureau |
| Experience on Advance Medical Directive Professor Helen Chan, Professor, The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong | |
| Moderator： | Ms. Lucy Lee, Lecturer, JCECC Project |
| Programme Rundown： | Click here |
| Target： | General public from the Hong Kong Island District |
| Fee： | Free |
| Language： | Cantonese |
| Registration: | Click here |
Edit by: CUHK ORKTS and Huang Xiangkun (Calvin) – CUHK students (Global Studies), Inno Ambassador
