Good Death Research Paper Example

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Abstract

During 1960s, the hospice movement which aims to make a Good Death possible was launched by Saunders. By the next decade, hospice care was expanded to America and Europe and later to Asian and African countries. This research paper will address the challenge of whether and how some of the global bioethical principles can be applied to achieve a desirable Good Death for people of diverse sociocultural contexts.

Introduction

During the 1960s, complaints about care for the dying increased as a result of technological progress in sustaining life, the lack of patient choice on how lives should end, and distressing and inadequate pain management (Callahan 2012). The knowledge that death was often a bad experience for the people involved was the ﬁrst step in the development of hospice care, aimed at improving patient care at the end of life and achieving a desirable Good Death. Cicely Saunders distinguished hospice care from other streams of health care and founded St Christopher’s Hospice in 1967 in the United Kingdom. By the next decade, hospice care was expanded to America and Europe and later to Asian and African countries. The term “palliative care” was introduced by Balfour Mount in 1975. Several studies on the understanding of the Good Death made it clear that there was a signiﬁcant difference between the responses of patients and primary caregivers in their views on quality of life. This difference in attitudes to death has important clinical implications because effective communication and care is best achieved when care receivers and caregivers share a common understanding of patients’ experiences. Ten Have (2013, p. 3783) indicated that “care and communication, rather than medical intervention, should be given priority, and the unique person of the patient rather than bodily mechanisms should receive attention. This type of criticism is closely related to emerging bioethical critique of mainstream medicine around the same time.”

The concept of the Good Death is commonly understood to have two meanings. The anthropological and sociological literature has focused on the meaning of “to die well” while the medical, philosophical, and legal literature has often linked Good Death to the debates around euthanasia. This research paper on the Good Death will focus on the ﬁrst meaning and explore the history and values of the Good Death. In the light of global bioethics, the conceptual framework and core components of the Good Death will be reviewed and analyzed. Also discussed is the challenge of whether and how some of these global bioethical principles can be applied to achieve a desirable Good Death for people of diverse cultures.

Good Death: History And Values

In China, the concept of the Good Death ﬁrst appeared in the Book of History (Shang Shu) in ancient China more than 2,000 years ago. The Book of History is one of the Five Classics which was compiled or edited by Confucius. It stresses that if an emperor governs the country by moral principles, his people will be blessed by heaven with the ﬁve blessings – longevity, wealth, serenity, the love of virtue, and Good Death. The latter means dying naturally of old age, without pain and suffering, with psychosocial comfort and acceptance, and with peace in mind. Conversely, if an emperor did not fulﬁll his role properly according to the will of heaven, his people would be persecuted with six sufferings including bad death. In Western culture, the Good Death has been variously deﬁned by different disciplines. The following terms have been employed: appropriate death, healthy death, correct death, tame death, happy death, peaceful death, good dying, and dying well. In spite of the variation in adjectives, all of the above phrases point to a common possibility – that it is possible to die in a way that is consistent with one’s value and principle (Mak 2007).

The Good Death: Multiculturalism And Religions

Despite the hospice development and its inﬂuence on health care and health-care systems, the concept of the Good Death is inadequately deﬁned and understood; in particular, the social and cultural aspects have not been well attended to. Coward and Stajduhar (2012) commented that “Westernised beliefs and approaches alone are inadequate to helping us gain religious understandings of a good death in hospice palliative care” (p. 5). As the majority of the world’s population is afﬁliated with some religious traditions, the following section will explore the conception of the Good Death from some major cultural religious traditions: Christianity, Hinduism, Islam, Buddhism, Confucianism, and Taoism.

Christianity

Saunders’ viewpoint on the Good Death originated from her medical experience and Christian commitment, which facilitated her whole approach to the terminally ill. She addressed some of the key concerns, including symptom control, the need for psychosocial and spiritual care, and speciﬁcally the need to resist any form of euthanasia (Saunders 2006). From the GrecoRoman world, the early Christians inherited an attitude toward death, which they accepted as a universal phenomenon and as something not to be feared. Further, they believe that a Good Death signals entry into heaven. Suffering can be regarded as a means of transformation, linked to the suffering and redemptive mission of Jesus.

Hinduism

Similar to Chinese culture, it is difﬁcult to separate religion and culture in Hinduism. Dying is surely a sociocultural event as Hinduism emphasizes addressing the religious needs of the dying. To die a Good Death, Hindus believe that one needs a proper state of mind, through detachment from the ﬁnite and ﬁxing one’s mind and heart on God. In practice, they desire to recite and hear sacred sounds, to create a sacred space, and to perform religious rituals such as administrating sacred water from the River Ganges for purity and cleanliness. Also, they want to have the company of their family at the moment of death.

Islam

In Islam, the time and nature of death are determined by God. Therefore, what is needed is preparation for death to make sure that the dying person is in the proper religious frame of mind and ready to pass on to the afterlife. Dying a Good Death, one ought to maintain spiritual tranquility and minimize spiritual pain through prayers and certain religious rituals. For example, Muslim practices include praying ﬁve times daily, ritual washing before prayer, and special food arrangement. After the person dies, his or her body must be washed and dressed by members of the same sex and buried facing Mecca on the day of death or the following day.

Buddhism

Buddhism originated in India in about 500 BC with Gautama Siddhartha. The Buddhist teachings instruct people to accept that life is basically impermanent and full of suffering and death is only a transformation. The goal of life is to perfect oneself so that one achieves total liberation of oneself from the cycle of births, death, and rebirth. This is a belief shared by Hinduism as well. According to the law of karma, the quality of the next lifetime depends on the quality of life spent in this lifetime. The accumulation of good karma will be rewarded by a happy rebirth, which is also important for having a Good Death. Buddhism teaches acceptance of the inevitable, ever-changing character of life and death. Such acceptance will bring about a new peace of mind when the Buddhist dies.

Confucianism

The Confucian concept of personhood has had a great impact on bioethics. Confucius (551–479 BC) considered righteousness to be a basic requirement of a good person (ren), who would not seek to stay alive at the expense of injuring virtue. A good person is expected to fulﬁll social roles and respect the senior, and being ready to die for righteousness is an example of a Good Death. Rather than individual autonomy, obligations or duty is central to Confucian culture. Confucians consider a person a “relational self,” for whom social relationships, rather than rationality and individualism, form the basis for moral judgment. The Confucian view of Good Death is that of continuous remembrance and affection on this life and care until the end.

Taoism

Similar to Confucians, Taoists believe that everything in the world is produced by the cosmic way (tao), which provides harmony and balance of body and mind. The process of death was a natural transition from a conscious state to an unconscious one, from a life body to a death body. According to Lao Tzu and Chuang Tzu (399–295 BC), the eternal way of the universe is much wiser than any person can possibly be. Many people assert their egos and try to substitute their own limited knowledge for the wisdom of the universe. Such action would create fear and suffering. For Taoists, the Good Death is the notion of mutual interpenetration of life and death (Mak 2001).

Good Death And Global Bioethics: Framework And Elements

From the contemporary literature of Eastern and Western countries, both caregivers and patients agree on several elements contributing to a Good Death. First, the dying person should be comfortable and free from pain and symptoms. Acceptance of one’s mortality is the next prerequisite for ﬁnal departure if one is to die with a sense of inner freedom and without narcissism. Therefore, a person usually refers to have a Good Death when he or she is about to die in old age and when he or she has completed his or her unﬁnished business. Third, the patient needs to experience a sense of personal control until the end of their life. He or she is allowed to make his or her own decisions regarding care in the remaining part of life. Fourth, the dying person needs to be hopeful, so that he or she can wait actively instead of passively. Fifth, both caregivers and patients maintain that family and social support are signiﬁcant for a Good Death in that it can provide emotional comfort, hope to live, and a better chance of accepting their death. On the other hand, patients’ personal and public preparations, such as funeral arrangements, are common preparations before a person’s death. In several studies, dying people agree that having an awareness of dying is an essential ﬁrst step of achieving a Good Death (Mak and Clinton 1999; Graham et al. 2013).

Consistent with ﬁndings of the previous studies, seven elements have been identiﬁed to form the foundation of The Theory of Harmonious Death. The relation-based theory of Harmonious Death is developed from in-depth interviews of Chinese hospice patients (Mak 2007). These core elements include being aware of dying (death awareness), maintaining hope (hope), being free from pain and suffering (comfort), experiencing personal control in decision-making (control), maintaining social relations (connectedness), preparing to depart and bidding farewells (preparation), and accepting the timing of one’s death (completion).

The Theory of Harmonious Death has a strong moral-spiritual emphasis as the patients rooted their views on what it meant to die a Good Death in their moral tradition: Confucianism, Buddhism, and Taoism. The dying patients are concerned about their harmonious relationships with heaven or god(s), medical practitioners, and the family until they die. Accordingly, these seven elements are grouped under three relationships. First, the dying patients’ death awareness and hope have close associations with their concepts and beliefs about heaven, life, and death, so these two elements are important in their relationship with ancestors and god(s). Second, the dying patients have a concern about their relationship with medical practitioners, who occupy a dominant position in determining their comfort and experience of personal control. Third, the dying patients would maintain a harmonious relationship with their families while maintaining the three essential elements of connectedness, preparation, and completion. Accordingly, the necessary evidence-based practical guidelines are developed to facilitate the hospice patients achieving a desirable Good Death.

In the light of global bioethics, the characteristic elements of the Good Death: death awareness, hope, comfort, control, connectedness, preparation, and completion are further analyzed and reviewed.

Death Awareness

More explicit notions of what it means to die a Good Death have arisen from the research work of psychologists, sociologists, and anthropologists such as Glaser and Strauss’ (1965) study on the four levels of awareness of impending death. In closed awareness, the patients do not recognize that they are dying, but everyone else does. In pretense awareness, the patients pretend they do not know that they are dying. When the patients suspect what others know and attempt to verify the suspicion that they are dying, this is suspected awareness. Open awareness exists when the patients are ready to talk about their condition and death openly. The awareness of death has strengthened people’s appreciation of the uniqueness of life.

Having an awareness of dying is an essential ﬁrst step toward achieving a Good Death. The episode of breaking/receiving bad news of the diagnosis of a life-limiting disease, such as cancer or HIV, could be regarded as the ﬁrst crucial reference point in the patient’s illness. Medical practitioners often control the amount of information about patients’ conditions and thus their death awareness. Therefore, the decision “to tell or not to tell the truth (of the diagnosis and or the prognosis)” to the patients has been an ethical dilemma for health-care professionals. Medical practitioners have to recognize the value of truth-telling and patient’s right to know, so that they will not conceal information from the patients. Only when the patients have a sense of autonomy over the information of their condition and develop an awareness of dying will they be able to adjust to changes that occur as a result of their illness.

Hope

People need to be hopeful. At the time when patients develop their awareness of dying, they may lose hope and sense of control of the future. First, there is a hope for cure and for comfort and life to be prolonged. Hence, the immediate hope for patients is to seek medical treatment that offers them a cure or that prolongs their lives. Traditional medical treatment was a popular choice because it promotes health and longevity. Second, dying individuals need to have social and emotional support to maintain hope. Third, choosing to hope can be an expression of self-determination, and the presence of autonomy reinforces the sense of hope. Lastly, hope can include a spiritual element. For people with religious faith, they perceive the Good Death as following more religiously oriented belief of hope in entry into heaven. Health-care professionals need to have a sound knowledge on hope so that they can assist the patients to instill realistic hope and attainable goals at the end of their life journey.

The patients also make adjustments, which included adjusting to the institutional environment, changing their lifestyles, and psychological adjustments. The outcome of these adjustments further reinforced their social connectedness with their caregivers as their mutual emotional/ social support sustains hopes of the person and their family. Their adjustments also reinforced their spiritual connectedness with their ancestors and god(s).

Comfort

Dying patients hope to die with minimal pain and suffering. They frequently refer to pain as a physical painful experience and suffering as an emotional feeling. Most patients are anxious about the uncontrollability of pain and symptoms and the inability to face their own deaths (Callahan 2012). It was chronicity that made pain so intolerable and depressing. This is the concept of “total pain” which includes physical, emotional, social, and spiritual dimensions. So the medical practitioners need great competencies in assessing and managing various forms of pain and suffering if the intention is not to use palliative sedation to end patients’ lives. People may also cling to some religions for spiritual comfort. Meanwhile, the health professionals need to be aware that patients may experience unresolved suffering even if they receive attentive care, as they see death as meaningless, ask for euthanasia, attempt suicide, and even commit suicide. This vision also advocates self-determination and autonomous decision to end one’s life, controlling the method, timing, and circumstance. Some criticize euthanasia as a symptom of the medicalization and secularization of palliative care (Wood 2002, p. 162).

Control

Control is the autonomy to make decisions. During the end of life, people’s autonomy is often threatened. Loss of control will produce feelings of fear, anxiety, depression, guilt, hopelessness, loneliness, and loss of dignity. In some countries, people respect the medical practitioner as the “ruler” of their lives; patients often play the passive and obedient role of the sick person. They may also believe that heaven or god(s) controls their lives and death. Several researchers agree that a Good Death is one in which the person experiences some degree of mastery or control. The shift to the palliative mode has moved the power base in the relationship between healthcare professionals and the patients, from professional domination to increased personal autonomy by patients. Ethical debate within palliative care has adopted the principles of bioethics, which is signiﬁcantly autonomy-centric.

In reality, the dying persons are not always involved in making decisions about their care plans as the required information may be controlled by medical practitioners and their families. The patients are concerned about two decisions: where and with whom they will die. When the dying persons are accepting their death, they need the opportunity to discuss and make appropriate decisions, such as making a will and advance care directives.

Connectedness

Dying a Good Death, patients need to maintain connectedness with their families. Patients experience spiritual contentment and are ready to die because they feel their families value them. Effective communication is signiﬁcantly important in maintaining a good family relationship. Strong family connectedness provides psychosocial and spiritual comfort to the dying patients (Graham et al. 2013). For example, from the Confucian perspective, the living and the dying continue their harmonious relationships through the practice of ancestor worship and ﬁlial piety. Filial piety consists in serving older relatives while alive, in burying them when dead, and in making offerings to them after death according to the established rules. Meanwhile, Buddhism, Taoism, and Hinduism often assist in family-centered ceremonies and sacriﬁces.

Preparation

Preparation refers to a state where dying persons, having accepted that they are dying, make provisions for their departure. People take time to prepare themselves emotionally for dying. They often make one or more preparations. These preparations could be classiﬁed as personal and public preparations. Personal preparations include the following: organizing material affairs (e.g., bank accounts, will, and life insurance), resolving conﬂicts, leaving moral instructions, satisfying remaining wishes, and giving gifts. Funerals always mean a public farewell to family and friends. Many patients regard funeral arrangements as signiﬁcant life events. Appropriate preparations for death often strengthen social connectedness between patients and their families and, consequently, afﬁrm their social identity and human dignity.

Completion

For dying patients to experience a sense of completion before they die, they need to show better acceptance of the timing of their death under four circumstances. First, they have completed their social roles, which often represent their priority of maintaining family connectedness. The accomplishment of these obligations could also mean substantiation of a meaningful and responsible life. Second, they die in old age, therefore their deaths are perceived as good and natural. Third, they have religious faith. Their faith or beliefs help them to maintain eternal hope of a better life after death. Fourth, the dying persons experience meaningful lives that further sustain their hope and control for a better future. These circumstances always reﬂect the existence of harmonious family relationships. In this way, they may also feel spiritual comfort and acceptance.

It should be noted that the Good Death is not a linear process, such as those proposed by KublerRoss, Weisman, and Pattison. People, who are confronted with their imminent death, need not achieve all elements of dying a Good Death or necessarily in that order. Rather, it is a dynamic process. Palliative care is indeed an exercise of compassion. Mother Teresa reminded people that the poor and dying people do not need people’s sympathy and pity. They need love and compassion.

Good Death And Global Bioethics: Future Challenge

Since 1948, international human rights law is justiﬁed on the assumption that people do have equal basic rights because these derive from the dignity which is considered inherent to every individual. It is related to the fundamental right of everyone to enjoy the highest attainable standard of physical and mental health (International Covenant on Economic, Social and Cultural Rights Article 12).

What is the legacy of the hospice movement, launched in 1967, today? In collaboration with the Worldwide Palliative Care Alliance, the World Health Organization (WHO) recently published the Global Atlas of Palliative Care at the End of Life. For the ﬁrst time, the Atlas highlights the inadequate worldwide provision of palliative care: only 20 countries worldwide have palliative care integrated into their health-care systems, and only 10 % of those who need palliative care are currently receiving it (Connor and Sepulveda Bermedo 2014). In response to the demand, the WHO is now exercising its authority and political inﬂuence by including palliative care as part of the deﬁnition of Universal Health Care in 2013. The WHO Global Action Plan for the Prevention and Control of Non-Communicable Diseases 2013–2020 includes palliative care as one of the areas proposed to member states.

In the process of globalization, bioethics is criticized for its insufﬁcient attention to cultural diversity and pluralism. Researchers, philosophers, and health-care professionals argue that “rights-based” Western bioethics, which focuses on “rights” unaccompanied by a “duty,” has not sufﬁciently taken into account the indigenous and traditional values of their country (Chattopadhyay 2011). In some countries, medical practitioners may deliver paternalistic care to their dying patients and discuss the care plan with the family instead of the patients themselves. The notion is clear especially in situations of breaking and receiving bad news, making medical care decisions for the family member and in the informed consent process for the terminally ill individuals (Qiu 1987).

Having reviewed the understandings of a Good Death in hospice palliative care in six major religious traditions, Coward and Stajduhar (2012, p. 308) conclude that, “in some traditions, there is important disagreement with Western biomedicine’s norm of the individual autonomy of the patient when it comes to telling bad news, making treatment decisions and obtaining consent. In many cultural and religious traditions, the identity of the dying person is collective with the family rather than individual and autonomous.” This explains the large difference in the way these most sensitive matter needs to be handled so that a Good Death for all parties concerned (patient, family, and caregivers) may be realized.

The UNESCO Universal Declaration on Bioethics and Human Rights makes reference to cultural diversity in Article 12 which states, “The importance of cultural diversity and pluralism should be given due regard.” Therefore, bioethical issues should be viewed within the sociocultural context in which it arises. The scientists and health-care professionals have to be aware of the contrasting approach to issues of autonomy, human rights, and truth-telling in disclosing the diagnosis of a life-limiting disease, which are to be found in Western and Eastern societies. As they make decisions on treatment options and refusals at the frontline, they should be morally and culturally competent to care for patients whose cultural and language backgrounds (and cultural knowledge, values, and beliefs) are different (Johnstone 2009). They should also maintain an open intercultural dialogue when facing bioethical issues.

Conclusion

The characteristic elements of the Good Death, embedded with moral and spiritual values, include: death awareness, hope, comfort, control, connectedness, preparation, and completion. Based on a sound understanding of the Good Death, the ethical principles of global bioethics, and compassionate caring, “dying a Good Death” will move from the status of sophisticated arguments to practical engagement (Ten Have and Gordijn 2013). The mission to provide palliative care for every person in need will be achieved only when the policy makers, clinical experts, and multidisciplinary bioethicist team in every country collaborate and implement the Global Action Plan 2013–2020 as proposed by the World Health Organization. Further support from professional and national organizations on education, practice, and research is essentially crucial.

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