2019 Taipei Declaration on Advance Care Planning: A Cultural Adaptation of End-of-Life Care Discussion

Abstract

Dear Editor:

Every person has the right to attain a high-quality humane health care from birth to death. To assist a patient achieve high quality of life toward the end of life and ensure high quality of dying and death (e.g., a “good death”), it is imperative to honor patient's rights of autonomy and respect their preferences regarding care decisions in health care circumstances. Advance care planning is an initiative to respect patient's values and ensure quality care in accordance with his or her preferences, usually followed by the completion of advance directives, serving as a significant means to preserve patient's dignity at the end of life. It is widely recognized as an indicator for high-quality palliative care¹ and endorsed by many professional bodies (e.g., American, British, and Australian medical associations) around the world.²

Advance care planning is a process that enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and/or other closely related people, and health care providers.^3,4 Advance care planning addresses individuals' concerns across physical, psychological, social, and spiritual domains. It may encourage individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account, should they, at some point, be unable to make their own decisions. Advance care planning is a tailored culturally adapted development and implementation in a compassionate Asian society, emphasizing the importance of family involvement in an individual's decision making in terms of future medical care. An influence of the cultural factor of filial piety should also be highlighted; nevertheless, advance care planning should be prospective and should not be jeopardized despite cultural difference.

In this declaration, various roles/stakeholders and tasks of advance care planning will be introduced in the hope for ethically sound implementation in the future (Table 1).

Table 1.

Recommendation of Tasks for Each Role in Advance Care Planning

Role	Tasks
Individuals	From an individual perspective, one should be informed of the right to decide for future medical care, including the life-sustaining medical treatments (e.g., cardiopulmonary resuscitation, intubation, antibiotics, blood transfusion, renal dialysis, artificial nutrition, and hydration), when becoming terminally ill according to the laws and/or guidelines. Before such decision making, a patient should receive sufficient amount of relevant medical information, including prognosis, from clinicians. Advance care planning should be conducted when the person has decisional capacity. Patients are advised to appoint a certain family member(s) (including those important to the person) in advance as representatives to speak on behalf of the patient based on patients' preferences, should they, at some point, be unable to make their own decisions.
Family members	It is necessary to acknowledge the importance of the family members and the emotional environment of the patient especially in Asia. The needs of the family members and close caregivers throughout the course of the illness must be recognized and attended to. The family members are encouraged to participate in advance care planning discussions between the patient and clinicians, as the patient may lose decisional capacity in the future. Family members are expected to remind, help, and/or accompany the patient to share his or her goals and preferences for future medical care, and consider advance directives, if appropriate, through the process of advance care planning when one of the family members is diagnosed with incurable disease.
Multidisciplinary professionals	Palliative care is usually provided by multidisciplinary teams of health care and nonhealth care professions. Continuity of care is paramount. To ensure quality care and patient's informed decision making, clinicians should conduct discussions with patients and their family members if appropriate on the patient's medical conditions and future care based on patient's readiness. As patient's preferences can change over time, clinicians should assist the patient to share his or her preferences regarding care and conduct advance care planning discussions regularly as needed. Clinicians should document the contents of such discussion every time. The team should provide care consistent with the patient's preferences, such as facilitating a patient's wishes to die at home, if applicable and possible. The medical care team members must actively remind patients, especially those with terminal illness to consider advance directives through the process of advance care planning and choices of life-sustaining medical treatments (e.g., cardiopulmonary resuscitation, intubation, antibiotics, blood transfusion, renal dialysis, artificial nutrition, and hydration). Social workers should help arrange places of care and/or services based on patient's preferences and assist the patient and family to register and complete advance directives through available resources such as advance care planning clinic, as per local and legal jurisdiction.
Educators	From the cultural perspective, the Asians traditionally regard death as a taboo and are reluctant to face and discuss the topic. Therefore, it is crucial to provide clinicians and the general public with appropriate learning opportunities about dying and issues that arise during illnesses involving decisional capacity. Thanatology and ethics should also be included in all levels of education especially for medical professionals. The professional societies ought to take responsibility to better educate physicians, nurses, and other health care professionals with the skills necessary to improve the quantity and quality of meaningful advance care planning discussions.
Researchers	More research and guidelines in the fields of advance care planning and palliative care are warranted to serve as references for various stakeholders such as the clinicians, educators, and policymakers for future implementation in Asia. The strategies for conversation and culturally sensitive model of advance care planning delivery should be a research priority before the implementation in clinical settings.
Policymakers	Governments, health insurers and health care organizations should secure appropriate funding and organizational support for advance care planning. In addition, patient autonomy-related laws should be encouraged to recognize advance care planning process (such as surrogate decision making and advance directives) as a legally binding guide in medical decision making.

Advance care planning honors patient autonomy in terms of health care decision making and thus enhancing high quality of life toward the end of life, as well as ensuring high quality of dying and death of the terminally ill. The Asian Delphi Taskforce for Advance Care Planning is actively undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper for the Asian population will be published in the near future. It should be tailored to the Asian cultural context and local jurisdictions. We recommend that all National Medical Professional Associations develop a national policy of various roles and tasks on palliative care and advance care planning based on the recommendations in this declaration.

Footnotes

Acknowledgments

Authors thank Taiwan Medical Association for arranging the conference, Ms. Joyce Chee and Ms. Trudy Giam for all the editing and proofreading, and all the support from Asia Pacific Hospice Palliative Care Network.

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