Advance Care Planning in Chinese Seniors

Introduction

While advance care planning (ACP) is associated with improved patient care at the end of life (EOL), higher quality of death, and less psychological distress among survivors, ¹ ethnic disparities in ACP completion rates have been documented and may be attributable to lack of knowledge about ACP or differences in cultural values and preferences. ^2,3 Indeed, the amount of information received by terminal illness patients about their own disease varies between countries. Some cultures may perceive the disclosure as a harmful act, violating the principle of nonmaleficence. Confronting death is a taboo across many cultures and commonly not discussed which can make providing palliative care (PC) challenging. ^4,5 In traditional Chinese culture, death was sensitive and mentioning it was sacrilegious and to be avoided. ⁴ Many Chinese families object to telling the patient a “bad” diagnosis or prognosis, which may hinder the chance in ACP discussion. ⁶ Indeed, doctors in mainland China often inform the family members instead of the patient. ⁷ Anecdotal case reports of Chinese patients in Western countries also highlight the strong objection of family members to the patient knowing the diagnosis or prognosis. ⁸

Death is an inevitable consequence of being born. As such, it is important that human beings recognize this inevitability and plan ahead for a good death. In most Western societies, most EOL care preferences can be indicated in advance in the form of advance directives (ADs). In general, an AD is a statement, usually in writing, in which a person, when mentally competent, indicates the form of health care he or she would like to have in the future when he or she is no longer competent. Older adults with end-stage diseases can write their AD to indicate clearly their preferences for specific EOL treatments, as well as the treatment settings for these treatments. Advance directives embrace living wills and enduring power of attorney for health care, and many countries have already developed legislations for AD.

Unlike other parts of the developed world (eg, United States, ⁹ the Netherlands, ¹⁰ Australia, ¹¹ United Kingdom, ¹² and Singapore), ¹³ the concept of AD is relatively new in mainland China, and there is currently no case law regarding AD. ¹⁴ However, there is growing interest and concern about the need for better EOL care for terminally ill older patients in some parts of China. For example, in June 2007, the Hong Kong Law Reform Commission issued a consultation paper on “Substitute Decision Making and AD,” detailing that doctors must comply with a patient’s AD and EOL preferences. ¹⁵ In 2013, the Beijing Advance Directive Promotion Association was established with the approval of the Beijing Civil Affairs Bureau. ¹⁴ This organization aims to promote the uptake of AD in China, inform Chinese people of their rights to prospectively define their EOL care preferences, and enhance quality of care of the dying.

We conducted multiple searches in databases, including MEDLINE, EMBASE, Cochrane Library, and conference proceedings, using the following strings: “advance care planning OR ACP AND ‘Chinese’ AND “elderly OR seniors OR geriatrics.’” We included articles with the following 3 main themes: (1) China’s current situation in population aging and PC development, (2) Chinese cultural values on death and dying, (3) AD and EOL care preferences among Chinese elderly patients.

Aging Population in China and PC

Following the global trend of population aging, China became an aging society at the end of the 20th century. The ever-growing medical demands of the elderly patients, the lag in medical insurance policy, and the late development of geriatric services make the present situation of public health in China worrying. The number of people older than 65 years in China is projected to increase from its current level of 8.9% to 23.0% by 2050. ¹⁴ Besides, the number of elderly population living in nursing homes is anticipated to rise. Currently, few (1.49%) older people live in nursing homes in mainland China, and it is anticipated that the combination of China’s “4-2-1” (1-child policy) or “4-2-2” (some couples can have 2 children if only 1 or neither of the pair has siblings) family structure and industrialization will see larger numbers of older people moving into nursing homes. ¹⁶ The impact of the 1-child policy, often leaving individuals caring for 2 parents and 4 grandparents, might lead to even more demand for outside resources to provide support. While in Hong Kong, approximately 8% of older adults are living in nursing homes at present.

Palliative care in China is in its developing stage—in a report published by The Economist Intelligence Unit in 2015, ¹⁷ which compared the quality of death in 80 countries, China was ranked 71st. Quality of EOL care was based on factors such as public awareness of PC, training for PC in medical schools, accreditation for EOL providers, analgesics availability, doctor–patient transparency, government attitude, and do-not-resuscitate policy. While Australia and New Zealand are in the top 3, 4 other Asia-Pacific countries ranked in the top 20, with Taiwan at position 6, Singapore at position 12, Japan at position 14, and South Korea at position 18. For these countries, government engagement has been crucial. By contrast, some countries that might be expected to perform more strongly, given their rapid recent economic growth, rank at low positions in the index. India and China perform poorly overall, at positions 67 and 71 in the index. In the light of the size of their populations, this is worrying.

The authors of an article published in The Asia Pacific Journal of Health Management point to cultural values and attitudes to illness and death as the main reason for the slow development of PC in the country. ¹⁸ In China, death is often considered to be a failure of medicine, rather than as the natural end of human life. Chinese people are encouraged to fight disease, based on the belief that scientific medicine can cure all diseases. As noted, in such a cure-oriented model, alleviating suffering is not valued as much as curing disease, and patients who cannot be cured feel distanced from the health-care team, concluding that when treatment has failed, they too have failed. The consequences are late or no referral to PC and dying in hospital is preferred. Besides, a lack of government funding for PC and limited education and training in this area reflect this cultural focus on curative treatments.

In Hong Kong, in contrary to mainland China, efforts have been made to promote the quality of PC and pain management. Palliative medicine achieved medical specialty status in 1998 in Hong Kong, with a curriculum and a structured training program designed for doctors interested in this field. Efforts are underway to further improve PC in Hong Kong through the formation of consultative teams in general hospitals and enhanced liaison with nursing homes. ¹⁹

Chinese Cultural Values on Death

A contemporary philosopher specializing in thanatology summarized the views on death in Chinese philosophy. ²⁰

Confucian: “willing to die to preserve virtue”:

Another famous contemporary Chinese philosopher succinctly summarized the traditional Chinese philosophy toward life and death by 4 Chinese words “zhong sheng an si,” which means “respecting life seriously and accepting death peacefully.” ²¹ The following direct quotations from Chinese philosophy classics help to illustrate the views.

Mencius said: “Fish is what I want; bear’s palm is also what I want. If I cannot have both, I would rather take bear’s palm than fish. Life is what I want; dutifulness is also what I want. If I cannot have both, I would rather take dutifulness than life…This is an attitude not confined to the moral man but common to all men. The moral man simply never loses it. ²² ”

Death in the eyes of Chinese philosophers is thus not to be feared. In Chinese culture, however, there is a special view on autonomy and family determination. The concept of “self” is a relational one in Chinese culture, and family relationship emphasizes harmonious interdependence. Individuals are part of family units, and autonomy requires family determination. ⁵ Therefore, in Chinese culture, important personal decisions, such as marriage, job seeking, or ACP in death, are often made in consultation, if not in conjunction, with family members.

Advance Directives in Chinese Elderly Patients

In a study from Wuhan (mainland China) describing knowledge and attitudes of AD in 467 nursing home residents, it was found that most (95.3%) had never heard of AD, while around a third (31.5%) preferred to make an AD. ¹⁴ Findings were similar to another study on elderly Chinese Singaporeans who attended a day care center, which found 37.2% agreed that making an AD would be necessary. ²³

In another study from Hong Kong published in 2011, ²⁴ it was found that approximately 88% of Hong Kong Chinese nursing home residents were in favor of having an AD, which was much higher than the findings from mainland China. This is attributed to the cultural and public policy differences between the 2 cities. In Hong Kong, the consultation paper “Substitute Decision Making and Advance Directives” ¹⁵ actively encourages health professionals to spend more time discussing AD with nursing home residents, so that they are familiar with the principles and importance of ACP. In mainland China, although there has been the establishment of an agency to popularize AD, a lack of necessary policy support, legislation, formal educational training, or practice guidelines makes it difficult to integrate AD and PC practices in the clinical setting. As a result, PC and symptom control is yet to be promoted as a practice specialty or as an area for clinical research.

From Wuhan study, ¹⁴ it was found that the strongest predictor of making an AD was having previously heard about it, which echoes previous research that communication about EOL care facilitates peoples’ decisions to complete at AD, ²⁵ reinforcing the need to continue to promote AD in mainly China through targeted education and media campaigns. The second predictor of AD was being able to accept or reject life-sustaining treatment, suggesting that elderly patient who can make definite decisions about their future care preferences may have more autonomy in AD completion. Thirdly, it was found that elderly patient with deteriorating health was also associated with increasing willingness to make an AD. Results suggest that physicians should broach the subject of EOL treatment preferences well before the resident’s conditions deteriorate quickly, so as to allow time to consider their AD preferences.

In a recently accepted qualitative study exploring ACP preferences of older Chinese Americans, ²⁶ it was found that Chinese older adults prefer to use indirect communication strategies, such as commenting on the circumstances of others rather than directly stating their wishes, and informal contexts, such as during a family dinner rather than formal meeting, to convey their care preferences with loved ones and may employ similar tactics when communicating with clinicians. Messages conveyed through indirect modes of communication are regarded more seriously than those expressed directly, so use of this approach may underscore the topic’s importance. ²⁷ Participants may feel that the use of this mode of communication would be less worrisome, more socially acceptable, and adequately understood by their adult children. Of note, participants expressed a strong desire to avoid discussing EOL topic with loved ones until health circumstances deemed it necessary. Similar reluctance was observed among Chinese Canadian seniors who felt premature engagement in ACP process and formal tools, such as an AD, would lead others to believe that they are “crazy.” ²⁸ Findings suggest that for Chinese elderly patients, health decline may serve as a significant sociocultural indicator of the last stage of life and the need to engage in ACP communication.

End-of-Life Care Preferences Among Chinese Elderly Patients

From Wuhan (mainland China) study targeting 467 nursing home elderly patients, ¹⁴ more than half (52.5%) would receive life-sustaining treatment if they sustained a life-threatening condition. Most of them (78.8%) nominated their eldest son or daughter as their surrogate decision maker. The proportion that rejected active treatment near the EOL was much lower than those reported in a Hong Kong Chinese nursing home study, ²⁴ which found that more than half of the residents did not want CPR (61%) and artificial nutrition (74%) to be started.

Reflecting Confucian teaching, the eldest son or daughter was favored by most elder residents as their proxy. ²⁹ The role of the eldest son or daughter is imbued within Chinese cultural beliefs, filial piety strongly influences decision-making in China. In accordance with tradition, the eldest son or daughter is obliged by filial piety to do everything to prolong the older person’s life; the opinions of family members and health-care professionals take precedence over personal opinions or preferences. Although family caregivers from Chinese family were often asked to make surrogate decisions when their elderly relatives had severe critical conditions or coma, in Hong Kong, Kwok et al found most caregivers had poor knowledge related to life-sustaining treatments, and most of them relied on their own views but not the patients’ wishes to make these EOL care decisions. ³⁰ Therefore, written documentation of EOL care preferences in the form of ADs would be needed at a time when elderly patients were still mentally competent and before they had any terminal illness. These AD documents would help their wishes to be respected when they might become terminally ill and mentally incompetent.

Preference for Dying in Nursing Homes and Community EOL Care

In the United States, there has been a marked increase in integrating hospice care into the nursing home. ³¹ Hospice residents were rehospitalized 23.2% compared with 37.6% of nonhospice residents. ³² Both ACP and AD need to be discussed early. The INTERACT program reported has reduced hospital admissions predominantly by obtaining AD that includes the decision not to be rehospitalized. ³³

In terms of preferred place of dying, study from China 10 years ago reported that nearly 90% of Chinese decedents older than 80 died at home. ³⁴ Recent Wuhan study, ¹⁴ however, found that fewer than a quarter (23.1%) wanted to die at home, while more than half (58.2%) would prefer to live and die at their present nursing home. The low percentage on preference of home death could be attributed to the increasing number of single households in mainland and fewer households comprising more than 1 generation means that fewer old people have access to the necessary family caregiver support to be able to die at home. Besides, patients in China have to pay most of their own medical costs. The financial tolls of caring for a patient near the EOL can be very substantial and limit the access for PC and hospices, especially in the rural part of China. Dying in a Chinese hospital is now more expensive than dying at home or in nursing home, which may influence their preferred place of death. On the other hand, aggressive and expensive medical care is often inconsistent with the treatment preferences of seriously ill patients. Recent systematic review indicated that facilitated ACP has the potential to reduce net costs of care, while policy holders might consider investment in professionally facilitated ACP a good use of scarce health-care resources if safeguards guarantee the openness of the planning process. In order to protect EOL discussions from undue influences of cost considerations, adequate training of facilitators, clearly defined ACP standards, and transparency concerning conflicts of interest should be ensured. ³⁵ Previously, it was thought that community-based EOL care might not be acceptable to older people in mainland China, because of traditional beliefs that their descendants will care for them and the same that their descendants will be regarded as unfilial by the community neighbors. The findings that more than half of residents nominated their present nursing homes as their preferred place to die would reinforce the need to support the future development on community-based palliative/EOL care in mainland China.

In Hong Kong, nearly all older adults with terminal diseases would receive EOL care in the hospital setting, and most of them would die in the hospital. ^4,36 In a local Chinese study, only 6 of 1300 patients under PC programs died at home, whereas the rest died in the hospital. ³⁷ In contrast, 53% of deaths attributable to chronic diseases in the United States occurred in the hospital, 24% occurred in nursing homes, and the proportion of home death was 24%. ³⁸ For patients with advanced dementia in the United States, 67% of them died in nursing homes. ³⁹ In the past, it was thought that community EOL care might have a poor acceptance among Chinese older adults in Hong Kong. However, with the finding that 59% of nursing home residents wished to receive palliative EOL care in the nursing home setting, approximately 35% would accept dying in their present nursing homes. Therefore, government legislation and health-care policy should pay major attention to the future development of community EOL care in the nursing home setting to respect the wishes and preferences of Chinese elderly residents.

Conclusion

While we need to be culturally sensitive in ACP discussion, we must understand the actual influence of culture on the patient’s own value system, attitude, and belief toward EOL care preferences. We should pay special attention to address the “death as taboo” and “family determination” with regard to Chinese culture. First of all, we should be sensitive in using the words “death,” “terminal illness,” and should accept the patient avoiding these words, taking into account that Chinese people may prefer indirect means and use of storytelling to share examples of others who have needed or used ACP. This may convey information to Chinese elderly patients in an acceptable manner. Additionally, providers should be aware that Chinese older adults may express their health and EOL care preferences in indirect and informal ways. Such messages should be considered and, when appropriate, documented in provider records. Secondly, we should involve the family early in the communication and decision-making processes, unless the patient objects. Besides, we should accept the patient delegating to family members the right to understand the details of the illness and make treatment decisions, if this is the patient’s choice. Future studies are warranted to improve ACP and PC delivery for the Chinese aging population. After all, the most innovative aspects of providing PC in China are not technical, but likely cultural.