Article Category: Review
Pubblicato online: 03 ago 2022
Pagine: 123 - 133
Ricevuto: 02 set 2021
Accettato: 23 nov 2021
DOI: https://doi.org/10.2478/fon-2022-0018
Parole chiave
© 2022 Min Liu et al., published by Sciendo
This work is licensed under the Creative Commons Attribution 4.0 International License.
China is now faced with an increasingly aging population. The number of patients with chronic or advanced illnesses keeps growing year by year and brings great challenges to the society and to individuals.1 WHO has reported that 80% of older people would be living in the low- and middle-income countries by 2050.2 According to data from the National Bureau of Statistics of China in 2018, the Chinese population aged 60 years or over numbered 249.49 million, and this accounted for 17.9% of the total population.3 While recent rates of improvement in cancer survival continue, the number of patients with chronic non-curable diseases has also been increasing, leading to untimely dying and death.1 Accordingly, there has been increased awareness that dying in a way that meets the individual's expectations is of high importance to one's dignity and autonomy.4
Since the first palliative care research center was built in Tianjin in 1988, patients with a terminal illness with limited life expectancy are longing for this peaceful way to leave the world.5 However, recent studies indicate that poor communication about personal values, beliefs, and preferences for future treatment and care could ultimately lead to some unexpected issues,6 for example, not following the preferences of patients who received the end-of-life treatment and care. In Chinese hospitals, it is common to see patients die slowly and painful deaths, whose real feelings and preferences finally go away with them. Studies of patients who regretted their end-of-life decisions have underscored the importance of patient autonomy and communications with health care providers.7 As a key aspect of palliative care, advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them, and their health care providers, concerning the individual's values, beliefs, preferences, and future treatment and care, including end-of-life care.8 It is associated with several benefits of patients, family, and health care providers, mainly including knowing patients’ values, beliefs, and preferences, respecting their autonomy and dignity, improving the quality of both life and death, and reducing the psychological burden of the family and the professional.7,8 It is also the sole way to enable individuals to have appropriate end-of-life treatment and care based on their preferences.6,7,8
At present, many developed countries have endorsed ACP into national health systems and recognized it as a core indicator for high-quality palliative care.9,10,11,12 However, there is a paucity of research regarding ACP in the mainland of China, and the health care system still faces many challenges that need to be addressed.1 First of all, the topic of death remains a taboo in traditional culture. Nearly all Chinese are educated to regard death as an enemy and public education on dying and death has been scarce.13 As termination of life-sustaining treatments is forbidden by Chinese law, communication around end-of-life preferences and decisions is thought to be a challenge even for experienced professionals. For Chinese doctors or nurses, keeping the patient alive is their duty even if the treatment no longer offers benefit.13 Second, as an important element of family coping in China, family cohesion means the integrity of a family and it indicates the obligations and responsibilities of family members.14 For millennia, family is believed to be the solid foundation of an individual's existence, and its breakdown can be hardly accepted by any Chinese; therefore, considering ACP puts a tremendous strain on family members. Third, filial piety (Xiao) which is the core pillar of Confucian ethics is also a highly valued virtue in their perceptions, which provides the moral underpinning for Chinese patterns of parent-child relations and socialization, and views regarding death in offspring are deeply influenced by it.15 It entails to take care of one's parents, to bring a good name to their parents, and to worry for parents’ sickness and death; therefore, it is difficult for children to tell the truth to their parents as end-of-life decisions are always made by children instead of the patients themselves. However, a survey conducted among Chinese elderly adults showed surprising results: 80.9% of respondents wanted to know the truth regarding their disease condition from doctors rather than from family members, and more than half of them were in favor of health care autonomous decision-making; only 8.9% expressed willingness for life-sustaining treatment such as cardiopulmonary resuscitation, ventilators, and tracheostomy.1 These unexpected data indicate the transformation of awareness and attitudes toward death among Chinese people and encourage them to have more conversations to explore patients’ values, beliefs, and preferences.
The unignorable demands for knowing the truth, expressing the living will, and self-decision making indicate that it is imperative to implement ACP that is suitable for the Chinese to protect patient autonomy and dignity and to provide end-of-life treatment and care decision-maker of their preferences. This review aims to clarify the relevant concept and suitable population for ACP, to describe the current situation of implementation in high-income countries and in China, and to provide better suggestions for the future development of ACP in China.
ACP is a broader, less legally focused concept than that of advance directives (ADs).16 It encompasses not only preparation of legal documents but also discussions with family members and physicians about what the future may hold for people with serious illnesses, how patients want their beliefs and preferences to guide medical decisions, what steps could alleviate concerns related to finances, family matters, spiritual questions, and many other issues.17 ACP is usually followed by the completion of ADs that serve as legal documents directing treatment decision-making and/or appointing surrogate decision-makers. An AD is a statement, usually in writing, in which a person explains how he wants medical decisions about him to be made when he is no longer competent.6 The most common types of ADs are the living will and the durable power of attorney for health care (also known as the medical power of attorney).18 A living will is a legal document signed by the patient that is used to state future health-related decisions if the patient is terminally ill or permanently unconscious. A durable power of attorney for health care is a written document that allows an individual to appoint a reliable person to be a proxy or agent to make health care decisions when physicians certify the individual to have lost the decision-making capability. Since ACP aims to set goals and plans with respect to medical treatments and other clinical considerations, communications between the professional and patients are fundamental for the implementation of ACP.6,8 Sometimes professionals need to revisit patients and families to modify the previous ACP conversation records as the individual's preferences and circumstances may change over time.8
ACP was developed for people with advanced cancer and incurable chronic diseases, but now it is also suitable for any person who is ready. ACP can be done by everyone regardless of health condition or age.19 The American Institute of Medicine suggests that individuals at any age and health status should have the opportunity to participate actively in the ACP process, so that they can consider the situation of death ahead to make sure that the professionals provide the appropriate end-of-life care decision-maker in keeping with their values and preferences.9 For those who are not able to describe their values, beliefs, and preferences, there should be someone who knows them very well and can make health care decisions for them. For example, the Health Care Consent Act in Canada provides a hierarchy of possible automatic substitute decision-makers (SDMs) that the patient can choose from and name one or more than one person to act as the SDM by preparing a document called a power of attorney for personal care when not capable.20 The decision-maker (Figure 1) is the SDM hierarchy in Canada.
Figure 1
The SDM hierarchy in Canada. Abbreviation: SDMs, substitute decision-makers.
ACP originated from ADs in the early stage in America. The initial form of ADs was a living will that was proposed by the Euthanasia Society of America in 1967 and aimed to make sure that one's health care wishes are known formally.6 ADs were first enacted in the Natural Death Act in California in 1976 and most states had adopted the relevant laws accordingly by the end of 1986.21 After the completion of ADs documentation had been snowballed for a few years, its shortcomings became apparent. It was difficult to know how patients and families wanted their beliefs and preferences to guide decisions, and what steps could alleviate concerns related to finances, family matters, spiritual questions, and other issues that trouble seriously ill or dying patients and their families. Then in 1991, the Patient Self-Determination Act was enacted by the federal government. The act required health care provider organizations to provide written information regarding ADs, maintain written policies and procedures, keep documents in the individual's medical record whether or not the individual had executed the ADs, and provide education for medical staff and the community on issues concerning ADs.6 This Act promoted the development of ACP in the United States. Many states even merged ADs and the durable power of attorney for health care into a single document to address unwanted medical encounters and make sure that ACP influenced the way most American adults planned for health care decisions. Furthermore, the community conversation on compassionate care that was launched in New York encouraged everyone aged 18 and older to start early ACP discussions.9
Since 2008, the National Healthcare Decisions Day (NHDD) has been held by the U.S. government on April 16 to motivate citizens to select a health care facility to prepare ADs through ACP conversations, and the Conversation Project had also been launched to guide the implementation of ACP.22 The process of ACP in the United States includes the following steps: (1) Get ready: make patients start thinking before ACP with a few open questions; (2) Get set: use scales to help patients figure out how their end-of-life care to be, whom, when, where the patient will feel comfortable and what to say in the conversation; (3) Go: conduct the first conversation with the health team and family members that explores the patient about the most important things in life, particular concerns about health and the last phase of life, loved ones, treatment and care preferences, health care proxy, disagreements or family tensions, the place to receive care and the time to transfer; (4) Keep going: collect the thoughts about how the patient first talk went and think about what will be talked in the future conversations, then have the patient considered to choose a health care proxy and completed the Ads, which has its official forms online. Currently, laws supporting ADs through ACP and the appointment of a health care agent have covered every state and the district of Columbia in the United States.23
In England, the ADs to refuse treatment are legally binding under the Mental Capacity Act 2005, which aims to protect and empower people aged 16 or over who may lack the mental capacity to participate in ACP conversations to make their own health-related decisions.10 A national guideline for ACP was co-published with concerted efforts from the Royal College of Physicians, the National Council for Palliative Care, and many other health organizations in 2009 to inform health and social care professionals on how best to manage ACP in clinical practice.24 In the United Kingdom, people can have ACP conversations with a solicitor, independent financial adviser or professional will writer, doctors and nurses who know the patients’ medical history and health conditions, family members, and friends. Many charities, such as Marie Curie and Citizens Advice, offer a free will-writing service for people aged 55 or above.25,26 People who want to make wishes and decisions can get standard AD forms from these charities and the charities can also help the ADs documentation people have done to be legally valid. ACP in the United Kingdom is in the process of 27 (1) initiation of conversation; (2) discussion of important issues; (3) documentation of wishes; (4) storage of the documented wishes; and (5) access and execution of the documented wishes.
ACP in Australia encourages people to document any special living wishes in an AD and to legally name SDMs. Although relevant legislation varies among the states and territories of Australia, it is supported greatly by both the statute law that is determined by legislation and the common law that is determined by judges’ decisions.28 The ADs Department of Health funded by the Australian government has established an ACP education capability framework to provide ACP training to health professionals, including medicine, nursing, applied health, and individual support workers.29 The ACP process in Australia generally includes 6 steps: (1) Identify: identify those who are most likely to benefit from ACP so that they may participate to the greatest extent possible in managing their treatment and care as their condition deteriorates; (2) Assess: anticipate a person's likely needs so that the right treatment, care, and support can be provided at the right time; (3) Discuss: discuss how to have the discussions and what topics may be covered; (4) Plan: incorporate the person's values and goals of care into their treatment and care plans and document the outcomes of ADs, enduring power of attorney, acute resuscitation plan, and statement of choices; (5) Coordinate: alter practice care at the end of life by the multidisciplinary team of health professionals to meet a person's individual needs as they change over time; and (6) Review: review ACP regularly to ensure currency, consistency, and appropriateness with a person's circumstances, needs, goals, and preferences.30
The earliest statute regarding ACP in Singapore was the Advance Medical Directive that was enacted in 1996. Although it addressed a lot of legal issues in medical decision-making, it did not adequately cover the broad spectrum of ADs and explore the values and preferences underlying these decisions for an individual.31 The local ACP framework for the living matters. It was adapted from the Respecting Choices model based in the United States and was first piloted in Tan Tock Seng Hospital by the Agency for Integrated Care in 2009.32 The next year, the Mental Capacity Act, which introduced assessing people's mental capacity and identifying the appropriate proxy decision-maker, came into effect and made ACP a national program.31 The program supported by the Ministry of Health could be done in most hospitals, selected polyclinics, and community care providers.33,34
There are three types of ACPs in Singapore: the general ACP is for relatively healthy individuals or individuals with early chronic disease; the disease-specific ACP is for a patient with progressive, life-limiting illnesses with frequent complications; the referred-plan-of-care ACP is for a patient with more advanced illnesses and may pass away within a year. Regardless of the type of ACP, a nominated health care spokesperson should be involved in the discussion. Normally, the first step to start the ACP discussion is talking with the participant's loved ones under the guidance of an ACP workbook that reflects individual preferences and wishes. The individual needs to complete the ACP workbook ahead, then mail or share the document with the doctor. After that, the patient can make an appointment for an ACP session. A formal completion can be done at ACP service centers and the list of the centers can be found online easily. ACP allows participants to make decisions on Cardiopulmonary Resuscitation (CPR), care goals for medical intervention if there is a potentially life-threatening crisis, preference of place of care, and even death. All preferences will be updated in the National ACP Information Technology (IT) system that is linked to the National Electronic Health Record.35 The ACP facilitators are generally trained, health care providers, and people can do ACP with or without their involvement. There are also many free resources online to help individuals, their families, and professionals to have an ACP discussion.36 As ACP is not a legal document, there is no need for the presence of lawyers for its discussion.
As the fourth most populous country with a population of 270.6 million in the world, Indonesia is now undergoing a transition and gradually becoming an aging society.31 Palliative care is not well known in Indonesia, although it has been implemented there since 1992 and integrated into its national policy in 2007.37 Together with other services such as end-of-life care, symptoms management, and psychological support, ACP will be introduced as one of the palliative care services implementations in the new draft of the Ministry of Health Regulation on Palliative Care.31 A lot of efforts to provide basic palliative care knowledge and skills have been made by the government, for example, initiating education sessions of palliative care, and developing training programs for health care professionals.38 The local nongovernmental organizations such as the Rachel House Foundation and Indonesian Cancer Foundation also collaborated with Singapore International Foundation (SIF) to launch a 3-year palliative care training program for medical professionals.39
However, there is little formal education or training available for ACP, nor public advocacy to promote the implementation of ACP in Indonesia. Not surprisingly, in most parts of the country, the lack of integration of palliative care service, the sociocultural influence on health care decision making, and a lack of public awareness of ACP affected the smooth implementation of ACP.40 At present, the only recognized and widely used written documentation of ACP in Indonesia is the do-not-resuscitate (DNR) form. It is evident that research on ACP in Indonesia is urgently needed, and much remains to be done concerning ACP.41
Although palliative care first began in Malaysia in 1991, the development of palliative care has been sporadic and lacking standardization.42 In fact, there is no equity for palliative care in this country. All hospitals providing services are located in urban areas, and services in rural areas are non-existence.43 In 2019, the Malaysian Ministry of Health (MOH) launched the National Palliative Care Policy and Strategic Plan (NPCPSP) 2019–2030 that highlighted the development of palliative care in Malaysia. Although ACP has been regarded as a key indicator of the high quality of palliative care,8 it is neither well known nor well utilized in the routine clinical practice in Malaysia. Early in 2007, Htut et al.44 conducted a qualitative descriptive study of 15 elderly Malaysians on ACP and ADs. Most felt that the future was best left to fate and to God, and none had made any contingency plans for severe future illness due to religious and cultural sensitivity. In 2016, an Advance Care Planning Questionnaire (ACPQ) had been developed by Lai et al.45 to help assess the awareness and attitude of Malaysians toward ACP. A recent study also verified that the majority of Malaysian patients have poor knowledge of ACP, and very few had ACP in writing.46 Therefore, the Malaysian health care system still faces many challenges for the implementation of ACP, which need to be addressed.
Taiwan, China, was the first place to develop ACP and its quality of death index was at position 6 in the world and ranked 1st in the Asia-Pacific countries.47 Early in 2000, the Natural Death Act respecting terminal stage patient autonomy and protecting their rights to refuse unnecessary life-sustaining interventions through written ADs was enacted.48 Although the act provided a safeguard for patient autonomy and improved the quality of death, survey shows that only a small percentage have completed ACP. 49 To encourage the public to plan ahead, the government published a directive for making hospice palliative care and life-sustaining choices ahead to help citizens sign AD documents through ACP and then propagandize it in hospitals and communities.48 In addition, the Patient Right to Autonomy Act was issued in 2019. It was the first patient-centered medical law in Taiwan, China, as well as the first specific legislation in Asia. The Act motivates adults aged more than 20 years with normal capacities to complete ADs and name a reliable person to be a health care proxy through ACP. After that, many hospitals in Taiwan have carried out ACP and some have even set up dedicated ACP clinics.50 Patients can choose any organization nearby to have ACP conversations and get more information regarding them from the website, the electronic billboard, and from leaflets in hospitals. According to Taipei City Hospital, an ACP conversation with a participant took approximately 60–90 min and cost 2000–4000 yuan per time; ACP sessions are held by a medical team consisting of a physician and a nurse, plus a social worker or psychologist.51 Before ACP is started, a social worker provides information on ACP to people and guides them to fill in ACP handbooks, then schedules the appropriate time and place of ACP conversations after handbooks have been given. The ACP conversations are mainly focused on exploring living wills, introducing ACP and ADs, and discussing AD documents such as the condition of medical crisis, life-sustaining treatment, artificial nutrition, the site of care, and health agents.48 The process of ACP is shown in the decision-maker flow diagram in Figure 2.
Figure 2
The process of ACP in Taiwan, China. Abbreviations: ACP, advance care planning; ADs, advance directives.
Hong Kong, China, is a unique district with a combination of Western beliefs of autonomy and traditional Chinese beliefs of collectivism, and these conflicting beliefs are posing challenges for the implementation of ACP. Early in 2006, the Law reform commission of Hong Kong posted a document of Surrogate Medical Decision-Making and Advance Directives and encouraged citizens to make ADs ahead, following their willingness and preferences prior to the time of losing the decision-making capacity.52 However, the time was not ripe for the legislation of ADs because of insufficient public awareness. Therefore, the government published the public consultation paper in 2009 aiming to introduce the concept of ADs to citizens in Hong Kong, which promoted the advent of ACP greatly.53 After years of governmental and nongovernmental propaganda, the Hospital Authority (HA) Guidelines on ACP was enacted by the hospital authority in 2019. The guideline clarified the background, scope, purpose, initiation, process, and outcome of ACP and provided some standardized ACP forms and practical guidance like follow-up actions for clinicians on conducting ACP discussions.54 A public beneficial association also launched the end-of-life care project for the elderly and provided a huge amount of funding to 48 care facilities in Hong Kong to push for better development of ACP in the long run.55 The ACP process in Honking was conducted by a medical team led by nurses based on the following steps:56 (1) My story: make patients share the most unforgettable experiences and build a trust relationship between medical staff and patients; (2) Talk about diseases and pain: find out the disease cognition of patients and how they adapt to the physical, psychological, social, and spiritual influence so that nurses can understand the treatment expectation of patients; (3) Life perception: explore how these experiences influence patients’ current life values; and (4) Medical preferences: understand the willingness and preferences of end-of-life treatment and care. With increasing confidence in the public acceptance of ACP, the population that took ACP varied from patients with serious illnesses to frail older adults, the sites of enforcement changed from hospitals to various care settings, and the implementation of ACP was tending to be more widespread.
Although palliative care in China has more than a 30-year long history and ACP is a significant aspect of palliative care, China has shown a low awareness of ACP in the native populations.1 As ACP is in its concept popularization stage in the mainland of China, it is extremely urgent to improve the awareness of the public. A Chinese female professor created a public benefit website of Choices and Dignity in early 2006 to encourage people to write down 5 living wishes and consider ADs.57 The website aimed at death with dignity and life autonomy, giving a detailed explanation of the concept, scope, legal status, and functions of ADs and introduced a broader concept and potential benefits of ACP to the public. Similarly, a representative of the People's Congress put forward a proposal of establishing AD centers during the two sessions in 2012,58 which was also a landmark event in ACP. In recent years, terminal stage patients have received unprecedented attention, but research about ACP is mainly targeted at literature reviews and progress and lacks corresponding clinical experiences, discussions, and empirical research.59,60 As ACP is the most effective way to respect patient preferences through shared decision-making, there is no need to develop the legal supporting structure for ACP in China.
ACP has a unique focus on having proactive and explicit attention to individual autonomy, the maintenance of dignity, the quality of death of the patient, family members, and health care providers. Although there are so many potential benefits of ACP, research on it remains limited in the mainland of China. A recent survey conducted among community-dwelling older adults in Beijing showed that more than half of the participants expressed willingness to make their own health care decisions and 39.4% of them wanted to document in an ACP so that their values and preferences could be respected in the future.1 The huge demand for ACP highlights a need to learn from the successful implementation of ACP in high-income countries and to summarize the factors promoting and impeding the development of ACP in mainland China. As coming from the same origin, strategies from Taiwan and Hong Kong can be particularly useful to initiate ACP conversations in mainland China. Therefore, we conduct this review to clarify the relevant concept of ACP and its suitable population, describe the current situation of implementation in high-income countries, and provide better suggestions for the future development of ACP in China.
Normally, national policies for palliative care are the foundation for the implementation of ACP. In 2020, the National Health Commission published the 13th Five-Year Plan for Healthy Aging to require the establishment of a palliative care system and the satisfaction of end-of-life patients’ needs. However, as the demand for patient autonomy and human rights is increasing greatly, there has been considerable awareness that palliative care is unlikely to help patients reflect, plan, and make decisions for future health care needs or to reduce tensions and conflicts between patients and professionals,55 but can be done in the form of ACP that enables individuals to define goals, values, beliefs, and preferences for future medical treatment and care, to discuss with their family members and professionals, to make own end-of-life decisions, and to reduce unnecessary medical crisis and legal issues.61 Although there is no specific legislation against or to support citizens to make ADs through ACP in China, the Chinese Medical Doctor Declaration requires physicians to respect the patient's autonomy and to provide sufficient real information about health conditions to assist patients to make their own medical decisions. Legal and policy support from the government is indispensable for establishing a model of ACP that is focused on patients’ life autonomy and dignity.
There are a number of cultural factors hindering the development of ACP in China, such as death taboo, familism, filial piety, and doctors’ authority. First, death is the biggest taboo topic among Chinese people and it is commonly regarded as the gravest of all misfortunes. Talking about death in public is prohibited because the Chinese believe that it can beget bad fortune and brings the inevitability closer than it perhaps already is.62 Then, familism is ingrained in China and a family has the responsibility for taking care of its members; therefore, patients tend to leave medical decisions to their family without considering personal values, beliefs, and preferences, which mainly manifests as prioritizing the needs of the family higher than that of individuals. However, in Confucian teachings, filial piety which is also highly valued in society often puts a lot of psychological pressure on family members, especially children, when it comes to decision making. As a virtue of respect for one's ancestors, parents, and elders, filial piety means to be good to one's parents, to display sorrow for their sickness, and to prevent their death, so initiating ACP discussion would be very hard for family members.15 Furthermore, with absolute trust in doctors and self-perceived incompetence in understanding treatment details, most patients and family members would like to make end-of-life decisions in consultation with the doctor. However, by considering the requirement of medical practitioners’ law and unnecessary medical disputes, many Chinese doctors are reluctant to and unable to address patients’ medical, informational, and emotional needs and to withhold futile life-sustaining treatment.63 Accordingly, it is naturally committed that family centered decision-making is an essential part of the rescue process in the clinical practice. Thus, ACP should be tailored culturally to adapt to the Chinese current situation and the interconnectedness of families should be highlighted.
Overall, the topic of ACP is quite new in the mainland of China, and it requires a nuanced approach that not only emphasizes governmental policies and regulations, cultural influencing factors, and the involvement of families but also recognizes the awareness and acceptance of the public. A previous survey showed that approximately 56% of Chinese participants want to quit specific life-prolonging interventions by the end of life, but only 15.3% of them have heard of an ACP.1 The absence, inaccessibility, or inaccuracy of information about ACP is the main reason contributing to current poor self-awareness and preferences, which prevents people from planning end-of-life treatments and care ahead.34 Researchers from Hong Kong announced that the concept of ADs could be well accepted by citizens if appropriate education for specific groups or even the public were conducted.64 Similarly, a study among Chinese advanced cancer patients also showed that people who are better educated and have religious beliefs tend to participate in ACP conversations. Therefore, to popularize ACP and make sure patients and their families feel involved in planning their future treatment and care, training and education for the public and the professional in health care settings and communities is a prerequisite in the mainland. It has been recommended that the media, ACP advocates, health care providers, family, and friends are all good channels to help to know ACP.33
As patient autonomy is highly valued year by year, China is struggling to meet the demand for ACP among people with terminal diseases. This article reviewed the successful experience of high-income countries, low- and middle-income countries, clarified the relevant concept, the suitable population, and the effectiveness of ACP, described the implementation outside and inside mainland China, and provided better suggestions for the future development of ACP in China. The clinical implication of this review is that we need to deliver high-quality hospice and palliative care to satisfy end-of-life patients’ demands and expectations overall, which will include ACP when the time is right. Compared with Western countries, China is still facing issues relating to policy approaches, public advocacy, availability of end-of-life care, and professional training, which are essential when implementing ACP in the mainland. Therefore, improvement in governmental policies, legislations, public education and advocacy, and professional training may contribute to resolving these challenges. Meanwhile, tailored cultural beliefs also need to be integrated to adapt to the local environment, and research should continue into areas where ACP remains deficient.