Chapter 11. The Diversity of Views About Death and Dying among Immigrants and Their Families: Implications for Helping Professionals

Death is the only certainty in life, but perceptions of death vary widely. Culture, religion, and society shape how individuals conceptualize death, with significant influences on the dying process. Views about death and dying can also vary within groups, and overgeneralization and assumptions among helping professionals about how individuals perceive death and their preferences about dying can hinder the wellbeing of those who are dying and their families.

The needs of dying persons and their families range from physical and mental comfort to spiritual wellbeing. Dying individuals may experience crises of meaning, and existential and spiritual wellbeing can be more important than physical and psychological wellbeing. Perceptions of death (and life) and decisions made during the processes of dying and bereavement are usually grounded in cultural beliefs and values, but helping professionals are often unaware of these. A national poll (Advance Care Planning Canada, 2019) revealed that most Canadians (80 percent) appreciate conversations with family and friends about end-of-life issues, but fewer than 20 percent have implemented an advance care plan.

Another issue is that although immigrants are now a significant proportion of the Canadian population, considerable gaps exists in the literature on access to and use of health care, palliative care, and end-of-life care services among immigrants (e.g., DeSpelder & Strickland, 2020; Gardner et al. 2018). Much more research is needed to explore views of death and dying among the Canadian population, including among the rapidly growing immigrant population.

Conceptions of Death

The process of death is more complicated than simple cessation of life. Traditionally, the absence of cardiac and respirational functions were viewed as indicators of death (Novak, Northcott, & Campbell, 2018). More recent Western medical definitions of death include at least eight criteria:

• absence of spontaneous response to any stimuli;
• completely unresponsive to even the most painful stimuli;
• lack of spontaneous respiration for at least one hour;
• absence of postural activity, swallowing, yawning, or vocalizing;
• no eye movements, blinking, or pupil responses;
• a flat electroencephalogram (EEG) for at least ten minutes;
• a total absence of motor reflexes; and
• these conditions do not change if tested again after twenty-four hours (Gire, 2014).

Some argue that brain death must include the cessation of brain activity in both the cortex (which controls consciousness and cognition) and the brainstem (which is responsible for functions such as breathing) (DeSpelder & Strickland, 2020; Gire, 2014). A person in a vegetative state with no hope of regaining consciousness with life sustained as merely “an artifact of modern technology” (Gire, 2014, 4) may be considered dead, but under the standard of whole brain death, this person is still considered to be alive (Steen, 2007). Overall, biomedical definitions of death represent the materiality of death encompassing the object (the dying individual and/or the body) and the materiality of practices (healthcare and ritual practices). However, the social and cultural constructions of death and dying play a critical role in how people make sense of it (van Brussel & Carpentier, 2014).

Awareness of death is one characteristic distinguishing humans from animals. Humans and animals instinctive engage in self-preservation to avoid death, but humans are aware of the inevitability of death (Greenberg et al. 1990; Pyszczynski, Greenberg, & Solomon, 1999; Solomon et al. 2004). Philosophers such as Kierkegaard (1844/1957) argued that knowing one is alive is tremendously uplifting, but that anxiety and terror can emerge from the tension of self-preservation and ultimate vulnerability and helplessness caused by the inevitability of death. Much human behaviour is motivated by anxiety about death, as illustrated by consumer behaviour, plastic surgery, and beliefs and practices related to death and dying (Burke, Martens, & Faucher, 2010; Solomon, Greenberg, & Pyszczynski, 1991; Tam, 2013).

Van Brussel and Carpentier (2014, 3) noted that “society – and all objects and subjects functioning therein – is the outcome of continuous processes of meaning-making” (2014, 3). They described two broad perspectives: a macro-oriented social constructionist perspective that addresses the collective construction of death and dying within a society, culture, or religion; and a micro-oriented constructivist perspective that focuses on agency and an individual’s meaning-making process. Scholars working in the field of thanatology – the study of death and dying –  study both, for example popular media, literature, and artifacts pertaining to death and dying, and how individuals construct meanings related to the ultimate loss for themselves and others (Burr, 2003). The meaning-making process, and the meanings attached to death, involve active interactions at the macro and micro levels, so any attempt to simplify views about death and dying is certain to result in misunderstandings and misinterpretations of the needs, wants, and wishes of dying persons and their families, and in turn, the delivery of inappropriate or unwanted services.

Ariès (1974, 1981) argued that death was considered “tamed” well into the early Middle Ages, but that Western attitudes about death have shifted: familiarity with death began changing to denial of death at the turn of the 20th century with the advent of modernization and industrialization (1981). As more deaths took place in medical institutions, death and dying became hidden and invisible from the private sphere. Elias and Jephcott commented: “Never before, have people died so noiselessly and hygienically as today” (1985, 85). Death and dying can now be considered a bureaucratic process, symbolized by a death certificate and institutional medical intervention (van Brussel, 2014). From a medical-rationalist perspective, death is no longer a “tamed” part of life, but an extreme of illness where modern medicine fails (Seale, 1995).

Conceptions of the Dying Process

Death is inevitable, and humans have long wondered about what makes a good death and how to have one. However, conceptions of a “good death” have varied over time and across cultures (DeSpelder & Strickland, 2020; Novak, Northcott, & Campbell, 2018). A traditional romanticized notion of the dying process might be dying quickly and painlessly at home surrounded by loved ones (Hobart, 2002). In more modern times, the dying process became more medicalized, and a good death “was foremost a death that happened without the patient noticing it, such as dying quietly in one’s sleep” (van Brussel, 2014). In contemporary Western societies, an “appropriate death” generally includes lack of pain, ability to recognize and resolve residual conflicts, satisfying realistically possible wishes, and yielding control to trusted others (Steinberg & Youngner, 1988, 13). Other thanatologists (e.g., Byock, 1997) have broadened the conditions of dying well to include end-of-life growth. Overall, the conditions for a good death now include:

• completing one’s worldly affairs
• coming to closure in personal and professional relationships
• learning the meaning of one’s life
• loving oneself and others
• accepting the finality of life
• sensing a new self and surrendering to the unknown.

The topic of death and dying still evokes discomfort in most people, but practitioners working with dying people stress that the process of dying is a natural part of life. “We depathologized the concept of pregnancy and birth, saying it was not a disease but a part of healthy living. Similar things can be said about the end of life; we need not pathologize people in order to acknowledge their mortality” (Hobart, 2002, 183).

Kübler-Ross developed a five-stage model to describe attitudes about one’s own process of death: denial (“Not me”), anger (“Why me?”), bargaining (“Yes, me, but …”), depression and mourning, and finally acceptance (“It’s okay”) (1969, 1974). The model is not rigid: some individuals may not experience all stages; some may move back and forth between several stages; some may have overlapping stages; and others do not appreciate their grief being confined by this kind of model and reject it entirely (Novak, Northcott, & Campbell, 2018).

Glaser and Stauss (1965) conducted a six-year study of dying experiences occurring in hospitals, hospices, and nursing homes with the care of healthcare professionals (i.e., virtual strangers, as opposed to the family members who would have been present in pre-industrialized times), and identified four main types of awareness related to dying in institutions:

• Closed awareness. The dying persons are kept from the truth of their health condition and thus unaware of their impending death. Healthcare workers and families cooperate to conceal the information. Believing that they will recover, the dying persons are deprived of full closure with regard to life and loved ones.
• Suspicion awareness. The dying persons suspect death is near, although healthcare providers and family keep the information from them. Tension may arise when the dying persons try to confirm their suspicions and others deny or ignore the reality with dispassionate, impatient, or abrupt responses, or fake cheerfulness.
• Mutual pretense. All concerned individuals are aware that the person is dying, but pretend they do not know. Everyone tries to avoid unintentional slips of tongue by maintaining conversations on safe topics, but the noticeable physical deterioration eventually makes pretense difficult and even impossible.
• Open awareness. The dying person, healthcare providers, and family all acknowledge the fact that death is approaching, although details such as the mode and time of death may be concealed with mutual pretense.

“To tell or not to tell” a dying person has been long debated among care providers and families. Many care providers find open awareness preferable because it allows the dying person an opportunity to bring closure to their lives, in term of both personal thoughts and their relationships with relatives and friends. Care providers may also benefit from comforting the dying person with affection and compassion without needing to pretend otherwise (Andrews & Nathaniel, 2015). The “right to know” has become a crucial element in contemporary Western medicine (DeSpelder & Strickland, 2020). It can be articulated using two sets of concepts, control and autonomy and awareness and heroism (van Brussel, 2014). Postmodernists believe that individuals have the right “to make their own decisions about what remains of their lives, they must be told the truth about their condition” (Walter, 1994, 31). Contemporary medical science makes control and autonomy possible by allowing the dying person to control the dying process to a certain degree. Within the dominant individualistic discourse, deprivation of truthful information to enable the dying person to make decisions is considered equivalent to a violation of basic human rights (Kearl, 1989; Novak, Northcott, & Campbell, 2018). However, the interpretation of control and autonomy is not homogenous.

The field of end-of-life care involves at least two main movements, which are not mutually exclusive: those focusing on the right to die and those focusing on palliative care (Table 11.1). Those promoting the right-to-die stress control and autonomy, including the practice of euthanasia (currently under the umbrella of Medical Assistance in Dying) by which the dying person has great control over the time and form of their own death. Some scholars have argued that the need for self-control during the dying process is rooted in attitudes related to deep fear and denial of death (i.e., Somerville, 2014), but many others feel that autonomy in dying enhances human dignity (i.e., the Dying with Dignity movement in Canada https://www.dyingwithdignity.ca/). In postmodern society, dignity is often related to independence, self-determination, and control, as well as “a civilised body discourse that values self-mastery and self-care” (van Brussel, 2014, 21). Even so, practitioners in the palliative care or hospice movement do not always support the “right to die.” Instead, most focus on controlling pain and symptoms to provide comfort to the dying person during the “natural” dying process, however long it may be, without active interference. The palliative care and hospice movement emphasizes facilitating the dying person in fulfilling their wishes (except for the wish to die) and assuring comfort (e.g., pain management, symptom management), rather than providing assistance in dying. The key difference between palliative care and regular medical intervention is that in palliative care, aggressive active treatment is withdrawn, but interventions with pain management and comfort remains. Control and autonomy in the dying process are less stressed in the palliative care and hospice sphere. Hobart (2002) identified three levels of control and autonomy over death: (1) voluntary active euthanasia, or clinician-administered medical assistance in dying (MAiD); (2) self-administered MAiD; and (3) sedation death (palliative care physicians ensure the dying person is free of pain to the point of sedation when death occurs) (Hobart, 2002). The decision between forgoing treatment but maintaining pain management until death occurs, versus hastening death in grievous and irremediable medical conditions to shorten inevitable (physical) suffering, is highly personal, contextual, and cultural.

Awareness and heroism are another set of concepts currently used in discourse about death. Western cultures tend to value open awareness, which involves at least three levels of conduct. First, the dying person is explicitly and accurately informed about their health condition. Second, they are informed about available options for medical intervention and care support so that they can make their own decisions or at least be part of the decision-making process. Third, they can evaluate their relationships with loved ones and determine whether, how, and when to tell others, reconcile with some, express affection, or make confessions (van Brussel, 2014). A dying person may continue or engage in a life review by which they assess their life: whether it has had meaning and purpose, tie up loose ends, reach acceptance, and prepare for death (Novak, Northcott, & Campbell, 2018). This idea of life review is closely related to Erikson’s theory of ego development (1982, 1993) according to which eight stages of psychosocial development define a person’s entire life. The last stage (age 65 to death) can involve feelings of integrity and a sense of accomplishment and fulfillment (acceptance, a sense of wholeness, lack of regret, feeling at peace, a sense of success, and feelings of wisdom and acceptance), or despair and feelings of regret (bitterness, ruminating over mistakes, feeling that life was wasted, feeling unproductive, depression, and hopelessness). Ideally, a life review will help the dying person achieve acceptance of life lived and the anticipated death.

Seale’s theory of the heroic death (1995, 1998) built on Erikson’s notion of ego development and integrity. He referred to a journey of emotional labour that involves both the dying person and people around them and described the “inner-directed heroics of the self” – meaning the action of gathering “support from family and friends and mak[ing] emotional progress in the process of denying, fighting, and accepting death” (Seale, 2002, 185). In this way, a dying person can be viewed as a “hero” who is forced to face a dangerous tragedy alone and must move through inner struggles at different phases of death awareness – shock, fear, anxiety, anger, and depression – while demonstrating great bravery and dignity in the final stage (van Brussel, 2014). Both the dying person and others view this life as completed without regret when death finally occurs (Dresser & Wasserman, 2010). The characteristics of a heroic death align with the palliative care and hospice movement: personal growth in the face of ultimate deterioration of the body as the goal, with a focus on the needs and wants of the dying person and their family and friends. The right-to-die movement also recognizes the importance of personal growth of both the dying person and others in the process – but also stresses that the care of others may not be sufficient to counterattack the suffering in late stages of terminal illnesses (Seale, 1995). From this perspective, heroic death and integrity may not be complete unless the dying person is provided with and actualizes the right to die (van Brussel, 2014).

Diversity in Views on Death and Dying

Canadian practitioners working in the fields of healthcare and social services frequently work with individuals of diverse cultural and faith backgrounds. As discussed above, open awareness of death has been considered a basic human right, and research has confirmed that patients who engage in open awareness are more likely to die in peace (Lokker et al. 2012). However, empirical evidence indicates that many (38–49 percent) dying patients in the hospital are unaware of their imminent death in the last days of life (Burge et al. 2014; Caswell et al. 2015). Practitioners have identified effective communication about the dying person’s condition, along with shared decision-making responsibilities and efficient professional care in the last days of life, as crucial to the quality of end-of-life care (Gardner et al. 2018; Virdun et al. 2015). However, some practitioners find it challenging to reveal the news to the dying person and/or their family. They can become more comfortable communicating with the dying person and family if they understand perceptions of death and dying within various cultural and religious contexts. For example, they need to be equipped with knowledge about different cultural interpretations of choice, preference, and behaviours in the dying process.

Religiosity is probably one of the most extensively examined among all cultural factors (Gire, 2014). Culture and religion are highly complex topics and change continually, so it is impossible to generate a complete, accurate, and detailed summary of all those existing in contemporary Canadian society. The following discussion explores some of the beliefs within some cultural and faith groups.

Buddhist

Many newcomers to Canada from East, Southeast, and some parts of South Asia are Buddhists. Among the many denominations, sects, and movements within Buddhism, most Buddhists believe in reincarnation: the dead are reborn, but not necessarily in human form. The ultimate goal of Buddhist practice is to escape the cycle of death and rebirth and achieve nirvana, a state of perfect peace and completion. Buddhists are taught to not fear death because it leads to the beginning of a new life. They believe that the spirit leaves the body when death occurs and lingers in a spirit world before it enters a new body, and that the dying person’s state of mind determines the state of rebirth. The body is cleaned, dressed, and prepared for the funeral by the family (if the person died at home). Funerals vary by the type of Buddhism and the cultural context of the deceased. Generally, Buddhists are not attached to any one form of disposing the body (e.g., cremation or burial); this is personal preference because the spirit is much more important and is already living on (Hsu, O’Conner, & Lee, 2009; Loddon Mallee Regional Palliative Care Consortium, 2011). Buddhism has no explicit rituals in memory of the deceased, but many Buddhism-influenced cultures practice in their own traditional ways. For example, Chinese Qingming Festival (Tomb Sweeping Day, held in late March or early April) is considered a memorial day during which Chinese people around the world conduct rituals to pay respect to their deceased loved ones, regardless of their religious beliefs.

Hindu

Most Hindus also believe in reincarnation. Rituals may begin in the last days or hours before death and can include praying, reciting scriptures, singing holy songs, and tying a sacred thread around the neck and wrist of the dying person. The deceased is usually cleansed by the family and dressed in traditional clothing, e.g., traditional Indian attire. Usually, the eldest son or an older male from the family will lead prayers and mourning for the spirit of the deceased. Hindus often choose cremation as they believe the creator, Brahma, represented by fire, releases the spirit from the body to attain nirvana. The body is considered to be unclean, so after the funeral a priest usually burns incense and spices at the deceased’s home, and mourners change their clothes after the funeral. The family usually conducts semi-formal memorial events in the years following the death (DeSpelder & Strickland, 2020; Loddon Mallee Regional Palliative Care Consortium, 2011).

Christian

Christianity includes many denominations. Most Christians believe that the person or spirit will meet God in Heaven or will wait in the spirit world for a final judgment before attaining eternal life in Heaven, joining their ancestors, and later being joined by their offspring. Clergy may visit dying persons and their families to provide comfort and support, at home or at an institution. At the time of death, a minister or priest may conduct certain rituals, such as lighting candles or saying prayers. The body is cleaned, dressed, and prepared for the funeral – sometimes by the family, if the person died at home. The funeral or mass may take place in a church, cemetery, or a funeral home. Disposal of the body varies by denomination: Protestants may choose cremation or burial, but cremation is generally forbidden or discouraged in Orthodox and Mormon religions (DeSpelder & Strickland, 2020; Loddon Mallee Regional Palliative Care Consortium, 2011).

Jewish

Jewish beliefs also vary by denomination. Most Jews believe they will join God in Olam HaEmet (the World of Truth) after death. A rabbi may offer comfort and prayers to the dying person, who is usually surrounded by family members. After death and before the funeral, a relative is expected to be with the body at all times. A special group of volunteers from the Jewish community usually prepares the body for the funeral. Cremation is usually not encouraged. Shivah is held at the family’s home after the funeral. This is a seven-day mourning ritual: friends and extended family prepare meals for those attending Shivah; some families cover all mirrors in the house and tear their clothes as an expression of mourning; and many guests talk about the deceased loved one, offering sympathies to the family by sharing positive memories (Loddon Mallee Regional Palliative Care Consortium, 2011).

Muslim

Muslims believe that after burial, the body remains in the grave and the spirit/soul continues to exist. On Judgement Day, Allah (God) will decide whether they go to Heaven or Hell. One of the reasons for Muslim daily prayers to prepare for death at any time. When a Muslim is dying, relatives and elders from the community, or any Muslim in the absence of family, surround them to pray from the Koran, their holy book. Support services that are not grounded in Islam may not be welcome and may be considered intrusive to the rituals. After death, the family will prepare the body for the funeral, including arranging the head facing Mecca (the holy city). Non-Muslims are not allowed to touch the body without wearing gloves, and those who are helping prepare the body must be of the same sex as the deceased. Cremation is not permitted in Islam, and burial usually takes place in a graveyard with prayers and readings from the Koran. Following the funeral, family and friends usually gather for three days to remember the deceased. Other family memorial activities may last for a year (DeSpelder & Strickland, 2020; Loddon Mallee Regional Palliative Care Consortium, 2011).

Cultural and Religious Influence in Coping with Death Anxiety

Some people find comfort in religions based on the idea of an afterlife. Gire (2014) found that those from cultures with these religious beliefs have less anxiety about death than others. However, even individuals from these cultures differ in terms of level, quantity, and quality of religious involvement, and the nature of religious activities. Research suggests that the higher the degree of certainty in an afterlife, the lower the level of death anxiety (Alvarado et al. 1995; Wink, 2006). Parsuram and Sharma (1992) conducted a cross-religious study comparing death anxiety among Hindus, Muslims, and Christians in India, and found that Hindus had the highest level of belief in an afterlife and reported the lowest level of death anxiety. Roshdieh and colleagues (1999) engaged in a study with 1176 Muslims in Iran, and found that those with stronger religious beliefs had lower levels of death anxiety, even in the face of war. Morris and McAdie (2009) reported that Christians had less death anxiety than Muslims, but that both Christians and Muslims had significantly less death anxiety than their nonreligious counterparts. However, not all empirical findings are consistent; for example, Rose and O’Sullivan’s (2002) results did not confirm any association between levels of death anxiety and religious belief in an afterlife.

Overall, intertwining structural and individual factors create numerous types of beliefs, which in turn affect choices and decisions around death and dying. Therefore, healthcare and social service practitioners should never make assumptions about a dying person’s wants and preferences based on their language and ethnicity, or assume that all people within one culture or religion share the same ritual practices and beliefs. Many aspects of social, cultural, and religious behaviours around death, such as funerals and expressions of sorrow, involve complex sociological, social, and psychological elements.

Practitioners also need to be aware of atheist (explicit denial of a deity’s existence) and agnostic (belief that such existence is unknown) views about death and dying. Based on her experience caring for thousands of dying individuals, Kübler-Ross (1974) reported that steadfast atheists demonstrated peaceful mindsets when facing death, just like others with religious beliefs. She noted that individuals with stronger beliefs, regardless of faith, experienced less death anxiety. Religious beliefs contain explicit, though not always consistent, descriptions of life after death, but followers may develop their own ideas about afterlife based on this ideological foundation. Thus, personal and contextual variables play critical roles in shaping level of faith. Anxiety about death can affect mental and spiritual wellbeing, especially among older adults and people experiencing a fatal illness. Healthcare and social service practitioners should try to offer effective interventions and support to dying persons and families from diverse backgrounds by being inclusive and respectful.

Practitioners’ Roles in End-of-life Care

Healthcare and social service practitioners who frequently work with older adults, individuals with fatal illnesses, and patients or residents in institutions, should be aware of the obstacles that individuals and their families of diverse cultural and religious backgrounds face in accessing appropriate palliative care and end-of-life services. They should advocate to reduce disparities in healthcare and supporting programs. They should also try to advance the quality of end-of-life care by understanding different ideas about death and dying. The goal is to ensure “a good death.” Practitioners may provide end-of life care during three main stages, as described below.

Pre-end-of-life stage. Individuals in this stage may not have developed a clear understanding of the dying process and may engage in conscious or unconscious denial of death, for example saying “If I die …” as opposed to “When I die.” At this stage, practitioners should help the patient by educating them (DeSpelder & Strickland, 2020). They might also give presentations on views of death and dying and advance directives as part of community outreach and public education for various audiences including students, paramedic and fire station staff, and older immigrants. An advance directive helps healthcare practitioners and family members understand the dying person’s wishes regarding medical intervention, for example in case of critical conditions when they are unable to communicate and medical decisions must be made (Novak, Northcott, & Campbell, 2018). It is impossible to predict every situation, so a proxy (usually a family member or a friend) may be assigned to make decisions based on the advance directive.^[1]

End-of-life stage. At this stage, death is expected to occur in months, weeks, or days. This is not a medical “problem” requiring a “solution” (Carver, 2018); the goal for practitioners is to support the dying person and help them have the best possible quality of life in their final days. Baile and colleagues (2000) developed the six-step SPIKES model to effectively support a dying person and their family, as presented below.

1. Set up: Set up the initial interview. The practitioner sets up a time to meet the patient; the timing should not disrupt treatment, visits, or rest.
2. Perception: Assess the patient’s perception. After the patient is comfortable, the practitioner might ask if they understand what is happening and their awareness of their diagnosis. The practitioner should invite the patient to reflect on what they have learned, heard, observed, thought, and felt, while listening attentively and responding with empathy. This step is critical as it will strengthen rapport and also provide the practitioner with more information to better adjust intervention strategies.
3. Invite: The practitioner should respectfully invite the patient to hear more about their condition.
4. Knowledge: After receiving consent, the practitioner should share their knowledge with the patient, telling the patient explicitly and empathetically that they are dying. Patients in this stage have frequently heard comments about their condition like “no more treatment is available” or “we’ve run out of options” – this may be the first time the patient is really informed of the news. They may react strongly and exhibit common reactions such as denial, anger, and bargaining.
5. Empathy: The practitioner must address all of the patient’s responses with empathy. The patient may elaborate on the reasons for their reactions, which may relate to family relationships, personal dreams, concerns about the dying process, and fear of death. Emotional support, attentive listening, and empathic responses are appropriate, and a gentle touch on the hand may be comforting to some patients.
6. Strategize and summarize. Some practitioners, often social workers, can help the patient plan for the best quality of life under the circumstances. Some patients may want to conduct a life review, reconnect with relatives or friends, or complete a directive or other documents. Some may want counselling with a spiritual or religious person, or to discuss information on medical assistance in dying.

The SPIKES protocol can be useful for physicians, nurses, social workers, and palliative care workers when helping individuals go through the dying process; and the six steps can be applied multiple times to evaluate emerging needs and wants, and then adjust supporting strategies accordingly.

Grief and bereavement. This final stage involves the survivors and friends of the deceased, as well as the professionals who have treated and cared for them. Grief refers to the personal emotional reactions to a loss (e.g., sorrow, depression, anger, and guilt), while bereavement is the recent experience of the loss of a loved one (Gire, 2014; Novak, Northcott, & Campbell, 2018). Practitioners may assist grieving persons in any of the four stages of mourning: acknowledging the reality of the loss; coping with and processing the pain of grief; adjusting to a world without the deceased; and finding a way to stay connected with the deceased when ready to move on (Gire, 2014). Providing support to grieving individuals requires long-term commitment, and structured organization can assure sustainability and dependability. Many not-for-profit and for-profit agencies provide various programs to address this need including counselling, spiritual counselling, support groups, and visits or conversations with volunteers.

Overall, when assessing the end-of-life wishes of patients, practitioners need to be sensitive to the specific needs of each patient. For example, patients will want to have different levels of control over the dying process: some may want medical assistance in dying (in Canada, only clinician-assisted MAiD is available, as opposed to self-administered death); others may choose a sedation death under palliative care. Both of these choices may involve explicitly rejecting active medical treatment and life extension. It is vital that practitioners avoid making assumptions about a dying person; instead, they should invite each patient to guide them in the provision of appropriate support to maximize quality of life during the final days (Gardner et al. 2018; Hobart, 2002; Hsu et al. 2009; Novak, Northcott, & Campbell, 2018).

Conclusion

Culture and religion are important elements in making meaning of the dying process, but some cultural and religious groups remain under-researched, meaning that practitioners may have limited information when working with dying individuals and their families. More research is needed to filling the gaps in certain areas of thanatology and end-of-life practice. Specifically, more research is needed to explore the social determinants affecting the quality of end-of-life care, in addition to cultural and religious factors. This body of work will provide a more comprehensive picture of how Canadians with diverse backgrounds view death and dying and end-of-life care, and thereby inform practitioners how best to meet their needs.

Useful Links and Resources

Five Regrets of the Dying https://bronnieware.com/blog/regrets-of-the-dying/

When Death Is Near https://www.virtualhospice.ca/en_US/Article/Final+Days/When+Death+is+Near.aspx

What Really Matters at the End of Life https://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life#t-265047

Documenting Her Wife’s Death on Social Media https://www.newyorker.com/video/watch/documenting-her-wifes-death-on-social-media

Living My Culture: Views of death and dying and palliative care in diverse cultures (First Nations, Inuit, Metis, Chinese, Ethiopian, Filipino, Indian, Iranian, Italian, Pakistani, and Somali) in different languages (English, Amharic, Cantonese, Farsi, Hindi, Mandarin, Tagalog, Punjabi, Italian, Urdu, and Af Soomaali). https://livingmyculture.ca/culture/

Embracing Cultural Diversity in Palliative Care https://www.youtube.com/watch?v=_pSEni3LqEY

The Role of Culture in Palliative Care https://www.youtube.com/watch?v=PhFCJ_ZSWGY

Cultural Sensitivity in Palliative Care https://www.youtube.com/watch?v=z7YHMekqmok

Finding Meaning and Purpose During a Health Crisis https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Spiritual+Health/Finding+Meaning+and+Purpose+during+a+Health+Crisis.aspx

Rituals to Comfort Families https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Spiritual+Health/Rituals+to+Comfort+Families.aspx

Spirituality and Life-Limiting Illness https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Spiritual+Health/Spirituality+and+Life_Limiting+Illness.aspx

Personal Directive — Alberta https://www.alberta.ca/personal-directive.aspx

Advance Care Planning — British Colombia https://www2.gov.bc.ca/gov/content/family-social-supports/seniors/health-safety/advance-care-planning

Healthcare Directive — Ontario https://www.cmpa-acpm.ca/en/advice-publications/browse-articles/2017/healthcare-directives-what-you-really-need-to-know

Health Care Directive — Manitoba https://www.gov.mb.ca/health/livingwill.html

Advance Medical Directives — Quebec https://www.quebec.ca/en/health/health-system-and-services/end-of-life-care/advance-medical-directives

Advance Care Directive (Living Will) — Saskatchewan https://www.saskatoonhealthregion.ca/patients/Pages/Advance-Care-Directive.aspx

Health Care Directives in the US https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Decisions/Health+Care+Directives.aspx

References

Advance Care Planning Canada. 2019. New Poll Shows That Most People in Canada Think it is Important to Do Advance Care Planning but Only Few Did. Retrieved from https://www.advancecareplanning.ca/news/advance-care-planning-canada-releases-new-national-poll-2019/

Alvarado, K. A., Templer, D. I., Bresler, C., & Thomas-Dobson, S. 1995. “The Relationship of Religious Variables to Death Depression and Death Anxiety.” Journal of clinical psychology 51, (2): 202–204.

Andrews, T., & Nathaniel, A. 2015. “Awareness of Dying Remains Relevant after Fifty Years.” The grounded theory review 14, (2): 3-10.

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