What If Deliberately Dying Is an Occupation?

Deliberately Dying as an Occupation

In recent decades, authors have formulated different definitions of the concept of occupation. In chronological order, we now present a sample of various definitions found in the literature to set the stage for a reflection on dying as an occupation.

In 1991, Clark et al. proposed that occupations are a culturally and personally meaningful set of activities in which people engage. Wilcock (1999) asserted that the concept of occupation consists in a synthesis of doing, being, and becoming. Pierce (2001) stated the following:

An occupation is a specific individual’s personally constructed non-repeatable experience. That is, an occupation is a subjective event in perceived temporal, spatial, and sociocultural conditions that are unique to that one-time occurrence. An occupation has a shape, a pace, a beginning, and an ending, a shared or solitary aspect, a cultural meaning to the person, and an infinite number of other perceived contextual qualities. A person interprets his or her occupations before, during, and after they happen. Although an occupation can be observed, interpretation of the meaning or emotional content of an occupation by anyone other than the person experiencing it, is necessarily inexact. (p. 139)

Wilcock (2001) added that “occupation encompasses all the things that people do, is part of their being, and integral to their becoming whatever they have the potential to become” (pp. 10–11). Crepeau et al. (2003) indicated that occupations are “daily activities that reflect cultural values, provide structure to living, and meaning to individuals; these activities meet human needs for self-care, enjoyment, and participation in society” (p. 16). McColl et al. (2003) asserted that occupations change and evolve over time to meet one’s needs, are fundamental to every human being, and remain essential to health. Townsend and Polatajko (2007) claimed that “occupation is everything people do to occupy themselves, including looking after themselves (self-care), enjoying life (leisure), and contributing to the social and economic fabric of their communities (productivity)” (p. 17). Christiansen and Townsend (2010) proposed that “rituals and ceremonies, such as weddings and funerals, are occupations that have widely understood shared meaning within cultures” (p. 13). They added that “occupations are not just any kinds of activities; they have a sense of purpose to them and give meaning” (p. 87). Wilcock and Hocking (2015) offered a more detailed definition of the concept of occupation. They noted that occupations encompass not only what is meaningful to a person but also all things that one needs, wants, or is obliged to do, whether for oneself or the community or to ensure one’s well-being and safety or that of others. For Wilcock and Hocking, occupation encompasses everything one achieves while using one’s time that provides meaningfulness. Hammell (2020) suggested that occupation relates to the things that people do in their everyday lives, including things done infrequently or seasonally.

On the basis of this overview, there is controversy about how well the idea of deliberately dying fits within our understanding of occupation. In keeping with many definitions of occupation, deliberately dying may involve a group of activities that have culturally based value and meaning (e.g., arranging a funeral, getting ready for the service by showering, setting up the room with dim light and music). The association among culture, values, and occupation has been noted by many authors in the fields of occupational therapy and occupational science (Christiansen & Townsend, 2010; Clark et al., 1991; Crepeau et al., 2003; Hinojosa et al., 2017; Meyer, 2013; Townsend & Polatajko, 2007).

However, deliberately dying is neither an ordinary nor a daily occurrence, which are attributes of occupation, according to numerous authors (Christiansen & Townsend, 2010; Crepeau et al., 2003; Hinojosa et al., 2017; Taylor & Kielhofner, 2017). Indeed, deliberately dying is not a habitual occupation that is performed with consistency or regularity, elements that also define an occupation according to the Taxonomic Code for Occupational Performance (Polatajko et al., 2004), given that this occupation will happen only once.

Deliberately dying is not obviously part of the three main domains of occupation (i.e., self-care, productivity, and leisure) suggested by many authors (Crepeau et al., 2003; McColl et al., 2015; Meyer, 2013; Taylor & Kielhofner, 2017; Townsend & Polatajko, 2007), although this typology is not universally accepted (Erlandsson & Eklund, 2001; Hammell, 2004, 2009a, 2009b; Jonsson, 2008). That notion seems incongruent with the idea that deliberately dying could be an occupation. Still, during her Final Day Plenary at the 2018 Congress of the World Federation of Occupational Therapists, Hammell (2018) indicated that “human occupations should not be devalued and obscured because they cannot reasonably be labelled self-care, productivity and leisure (or as daily living, work, or play)” (35:20).

Indeed, most definitions of occupation are not consistent with the idea that deliberately dying is an occupation, yet Christiansen and Townsend (2010) argued that “rituals and ceremonies, such as weddings and funerals, are occupations” (p. 13). This description is more in line with a less normative and more inclusive vision of the concept of occupation. McColl et al. (2015) claimed that occupation is essential to health. This raises the question of whether deliberately dying could be considered an occupation from that perspective. Regarding the link between occupation and health, an increasing number of authors, including Durocher (2017), support the idea that occupations “positively and/or negatively influence various aspects of health and well-being” (p. 9). For McColl et al. (2003), meaningfulness is an important aspect of occupation, affecting health and well-being.

Therefore, some conceptual frameworks and definitions would have to be revised to be inclusive of deliberately dying as an occupation. The concept of occupation as being rooted in everyday life excludes a variety of activities that might be described as occupations. Occupations can be associated with the domains of spirituality and dignity. Something that is done only once in a lifetime is neither a routine nor infrequent; it is exceptional. Still, deliberately dying is something that people might do when weaving the fabric of their everyday lives and could then be considered an occupation.

Deliberately Dying as a Purposeful and Meaningful Occupation

Pollard (2006) indicated that an awareness of death shapes occupational decisions but shied away from describing death as an occupation:

A consciousness of death appears to involve specific occupational choices for both people who are dying and those around them. Many people will prepare for their own death and hope to be actively engaged in purposeful occupation for as long as possible. Even if dying itself is not an occupation, clearly people give the event of death an intense occupational significance. (pp. 151–152)

In his reflection, Pollard (2006) positioned a terminal illness as something that is unplanned and undesired. In contrast, deliberately dying in the face of unbearable suffering that cannot be relieved appears planned and desired. In addition, other occupational therapy authors (Keesing & Rosenwax, 2013; Mills & Payne, 2015; Russell & Bahle-Lampe, 2016) have emphasized uncertainty related to time frames during palliative care before death.

For now, we invite the reader to reflect on situations in which deliberately dying involves a series of purposeful and meaningful activities. Instead of thinking about people facing an impending, inevitable death at a proximate but indeterminate time, we would like to focus on people orchestrating their own deaths because it gives purpose and meaning to the fabric of their life—people for whom death represents a goal that they wish to achieve for various reasons (i.e., a project they appreciate for its meaningfulness). They may have made this decision because their life has lost its meaning and become a source of unbearable physical, psychological, or moral suffering. Maybe life is no longer “good” for them. A person may have accomplished as much as they feel they can do in their lifetime and simply have no desire to do more. Deliberately dying may not necessarily be linked to suffering but could be characterized as a practical (occupational) choice to cease living. Reasons are personal and idiosyncratic. Such unsettling thoughts bring to light the fine line we wish to trace between deliberately dying, whereby capable persons arrange to end their life before its natural end via officially sanctioned channels, and suicide that is unsanctioned and likely more tragic, usually completed alone, and very much worthy of prevention efforts.

Preparation for deliberately dying could be an occupation for people who are experiencing health problems, but it could also be an occupation for relatively healthy people who no longer wish to live. The best known example in the history of philosophy is Socrates, who agreed to drink hemlock (a poison) when he was innocent. The court of Athens had condemned him for ungodliness and corrupting youth. Defending democracy, Socrates accepted the verdict and drank the hemlock. It was a political and philosophical act, that is to say, Socrates deemed that it is important to live according to one’s convictions. Similarly, accusing Seneca of treason, Neron ordered him to commit suicide, which he did with his wife, thus illustrating that, following his Stoic convictions, death was nothing to him. More recently, Jacqueline Jencquel, a healthy woman age 74, publicly announced her plans for a deliberated death to promote its legalisation in France:

Jencquel: You have to set a date, at some time or another, if you want to be able to leave on your own terms. . . . For me, loss of autonomy is the end of life. . . . No way, out of the question, I don’t want that, no.

Interviewer: You can age while being happy, there are people who manage that?

Jencquel: Yes. But I am happy! I am very happy . . . I’ve done it all. I’ve done it all, I’ve traveled around the world. I had three sons, I’ve loved, I’ve known passion, but there comes a time when that too is over. (1:50–2:10)

Interviewer: How, exactly, will [your death] happen?

Jencquel: Well, I will say goodbye to everybody, I’ll have a dinner, I’ll invite my friends, my family. We will go to one of the restaurants that I like in Paris, we’ll say goodbye, and then I’ll go to Basel.

Interviewer: In Switzerland?

Jencquel: It’s three seconds, you turn the knob on the drip. . . . You have to state: “I’m lucid, I am Jacqueline Jencquel, I have lived well, this is my age, now I want to end it all” . . . I’ve been putting this off for years. I wait for this, for that. But I’m high on life! Of course, I’m high on life . . . In a way, this is a gesture of solidarity. It’s not . . . I’m not only thinking of me.

Interviewer: Is having a successful death, also having a successful life?

Jencquel: Of course. Death is a part of life. Of course. (Kobini, 2018, 4:50–6:28, as cited in and translated from Revello, 2018)

For Jacqueline Jencquel, claiming that deliberately dying is a right represented a means of resisting the hegemony through which occupations are deemed acceptable or unacceptable (Kiepek et al., 2018). In Canada, Nicole Gladu, who had postpolio syndrome, and Jean Truchon, diagnosed with cerebral palsy, fought for the right to deliberately die and succeeded in challenging laws that restrict its access to those for whom death is “reasonably foreseeable” (Rukavina, 2019; Shingler, 2019; Stevenson, 2017). Deliberately dying may provide a sense of purpose for some people—for example, in that it facilitates magnanimous acts such as organ donation (Gravel, 2019).

As illustrated in previous examples, occupation might not only be about giving purpose and meaning to life for health and well-being. It might also be considered living or dying meaningfully. Therefore, deliberately dying can be a purposeful and meaningful occupation.

Deliberately Dying in the Context of Palliative Care

Some research has described the nature of occupation among people with diagnoses that require palliative care. A study that explored occupational experiences among older Canadians with a terminal illness identified six themes: (1) living with death, (2) reworking everyday life, (3) being guided by the will of the body, (4) prioritizing relationships, (5) attending to small things, and (6) engaging existential orientations (Lala & Kinsella, 2011). Among residents, families, and staff in a hospice in the midwestern United States, Jacques and Hasselkus (2004) identified the central role of occupation in four domains: (1) continuing life, (2) preparation for death, (3) waiting, and (4) death and after death. They also found that, for the dying person, occupation and its meaning shifted from solitary to a more collective engagement.

The transferability of this research to deliberately dying is unknown, especially given that the timing of death is no longer uncertain. People in palliative care in some countries may legally choose to plan, organize, and end their lives as a way to avoid a suffering that cannot be successfully managed. It can be an occupational choice to get a grip on an ineluctable event instead of passively waiting for an upcoming death. For an actively dying person, deliberately dying might be a way to escape the final days of distress and discomfort.

Deliberately dying is generally limited to people suffering from a terminal illness and implies a medical intervention (Reel, 2018). However, important nuances exist between jurisdictions. For example, in Switzerland, if a person has a nonfatal disability, is not dying, or has a terminal illness, it is not a crime to assist the person to die if the death results from the person’s own action (e.g., by taking a lethal pill; Dyer et al., 2015), and the death does not require the approval or involvement of a physician (Borasio et al., 2016; Zulian, 2008). In Canada, the law has evolved, as evidenced in Bill C-7, which removes the “natural death has become reasonably foreseeable” criterion (i.e., the person’s condition must be terminal; Government of Canada, 2020; Société Québécoise d’Information Juridique, 2019). This decision is raising concerns for some, but not all, Canadians about unwelcome societal changes (Canadian Association for Community Living, 2019; Canadian Press, 2020a, 2020b ; Shingler, 2019).

Nevertheless, deliberately dying in the context of palliative care involves a number of desired, selected, planned, and organized activities leading to a fatal event. Deliberately dying could be considered an occupation from this perspective, even a purposeful and meaningful occupation.

Discussion

The three preceding sections lead us to six main areas of reflection that occupational therapists might consider as they deliberate on their role. First, deliberately dying as an occupation might exist along several continua (e.g., willingness to die, predictability, and temporal proximity). People may or may not, at various points in their lives, become preoccupied with death or its denial, whether they actually expect to die sooner or later. For some people, death comes quickly and unexpectedly, and they may not be prepared for it at all, in which case it is neither an occupation nor a purposeful or meaningful occupation. Others do a variety of activities to prepare for death: writing a will, naming an executor and trustee, donating their body to science, and so on. Some may even plan their own funeral because they are aware of their own mortality and may wish to reduce the burden on those around them or exert control after death. Some people may even build their own coffin as part of social clubs (Roy, 2016). People who become aware that they have a limited time to live, because of age or an illness, for example, may engage in a variety of occupations related to that knowledge. Some people affected by a terminal illness may seek assistance to die under certain circumstances, and others may choose to die for other reasons and request assistance or not. According to Hocking (2009), occupations have a temporal pattern of emergence, uptake, modification, and sometimes decline. The occupations related to death may change within living memory, as they have at least for older Western people. For example, it has become uncommon to wash and prepare a relative’s body for a funeral as might have be done just over a century ago, because occupations around death have become professionalized (Bremborg, 2006). With legal and societal changes allowing deliberate death by various means, there is now a group of people who may have specific occupation-related needs: engaging in the purposeful and meaningful occupation of deliberately dying as it is legally enshrined within specific jurisdictions.

Second, deliberately dying could be associated with the domains of spirituality and dignity because it may be one of the last potential purposeful and meaningful occupations of the life span for all human beings. The tripartite categorization of occupation (i.e., self-care, productivity, and leisure) has been criticized by several scholars because it is linked to a privileged, Western perspective that fails to capture many purposeful and meaningful activities in which a majority of humans around the world engage (Erlandsson & Eklund, 2001; Hammell, 2020; Jonsson, 2008). For instance, it is difficult to classify the spiritual activities that, according to the people who practice them, cannot be reduced to either personal care or leisure. As Hammell (2009b) asserted, “Occupation should be understood in terms of the qualities of experience that clients describe rather than those categories of self-care, productivity, and leisure, on which theorists place a high priority” (p. 109). Occupational therapists may want to consider occupations to be necessary or meaningful activities (performed singularly or repeatedly, alone or with others) that allow people to fulfill social roles, meet self-identified needs, pursue interests, engage in rituals, or find purpose, such as deliberately dying.

Third, deliberately dying may be considered from the perspective of occupational justice, which seeks to identify social, political, and economic changes to enable people to participate in occupation and experience full citizenship (Crepeau et al., 2003). In doing so, we encourage scholars and professionals to keep in mind the occupational possibilities that are promoted or discouraged because of contextual factors. Hammell (2018) emphasized that opportunities to choose occupations might be unequally distributed, and options may be constrained or encouraged by structural inequities. Because these choices are made within cultural templates, choices of occupations may be co-opted, coerced, or compelled choices of occupations (28:12). We should not forget that “the capability to choose, shape and orchestrate one’s occupation is not a universal norm, but a marker of privilege” (29:45). People might not be able to afford to travel to Basel, as planned by Jacqueline Jencquel, or the legal fees to protect anyone who aided them in the process. There is a risk of defining deliberately dying as an occupation for those who can afford to plan it well and as an unfortunate turn of events for those who cannot. Hence, deliberately dying could be seen as a privilege or a right in some cases, but there is also the potential for coercion. Without being provided with alternatives, some people may believe their lives are unalterably poor. For example, people may choose to deliberately die if they do not have adequate community supports (e.g., home care) or palliative care services. To that extent, it is critical that deliberately dying as a potential and final occupation does not become a means for policymakers or managers to reduce workloads or health care costs. There is a potential danger of abusing vulnerable people, such as those living with disabilities or those who have reached old age. Occupational therapists and their professional organizations may need to advocate in this situation.

Fourth, reflecting on deliberately dying as an occupation raises a variety of ethical conundrums. Questions about occupation are shaped not only by laws but also by specific local values and beliefs about which occupations should be enabled (Townsend, 1993). Is the refusal to take part in enabling this occupation a reflection of a form of paternalism that denies the legitimacy of deliberately dying as an occupational goal? If yes, is this form of inaction permissible, especially for those whose value systems oppose deliberately dying? What are the potential abuses of deliberately dying? Reflecting on the previous example of organ donation (Gravel, 2019), what potential ethical conflicts could arise with such new practices? As discussed earlier, some occupations affect health; deliberately dying might promote wellness for one last time. Because freely and capably planning, organizing, and performing a deliberate death is based on moral judgments and values, even where it is legal, there may exist tension around it. Occupations that are considered sanctioned or not sanctioned vary across cultural groups and within societies (Kiepek et al., 2018). Reflecting on deliberately dying as an occupation might also contribute to discussions exploring potentially harmful occupations, including the so-called “dark side” of occupation (Greber, 2013; Twinley, 2013a, 2013b, 2020). Dark occupations, such as smoking, for example, frequently involve the potential for self-harm, a label that some might apply to deliberately dying, but are still within the scope of occupational therapy. Considering deliberated death as an occupation is one step toward illuminating underaddressed and somewhat invisible occupations.

Fifth, it is possible that many deaths share some common features. For example, waiting, preparing for death, and revising everyday life might take place in various contexts but have different meanings. In contrast, “continuing life” (Jacques & Hasselkus, 2004), “affirming life” (Bye, 1998), or being “actively engaged in purposeful occupation for as long as possible” (Pollard, 2006) seem incongruent with deliberately dying and thus may challenge this perspective on occupation. Qualitative research methods could enhance the understanding of deliberately dying as a final meaningful occupation. Highlighting activities undertaken by people and their close relations when moving toward deliberately dying would contribute to debates around dying as an occupation and guide occupational therapy practitioners’ clinical practice.

Finally, a critical examination of the literature revealed several inconsistencies in the way occupation is defined. We realize that a conceptually robust definition must be neutral both axiologically (in terms of values) and normatively (in terms of judgments). For example, legality, social acceptability, and value should not be used as criteria to determine whether an activity represents an occupation. In addition, a definition of occupation must be universal and must include all the phenomena it claims to represent (Legaré & Carrier, 2009). Reducing occupation to personal care, productive, and leisure activities excludes many occupations that are rare or spiritual, such as those related to rituals or rites of passage. Moreover, a definition must be ontological; that is, it must describe the essence of the phenomena it intends to label (Désilet & Roy, 1986). For example, indicating that occupations correspond to daily activities is not enough, because defining a concept is not limited to simply giving examples (i.e., an extensional definition). It is first necessary to formulate a universal and ontological statement (i.e., an intentional definition; Laramée et al., 2009). Examples may support definitions, but they cannot replace them. Drawing on this critical review, occupational scientists and therapists might expand and adhere to definitions of occupation that do not exclude exceptional ending-life activities, including deliberately dying.

Limitations

We drew on our experiences and professional knowledge as we personally and collaboratively reflected on the information gathered for this column. Therefore, these reflections are partial in both senses of the word (incomplete and influenced by the lenses that we used). More diverse cultural perspectives on this topic would have helped build broader occupational understandings around deliberately dying.

We did not consider whether deliberately dying is moral, legal, or ethical but instead whether it could be considered an occupation. Although the sample of definitions of occupation was not exhaustive, we believe it is representative of the different definitions found in occupational therapy and occupational science literature.

We considered only the case in which someone freely and capably plans, organizes, and facilitates (either directly or indirectly) his or her own death (what we refer to as deliberately dying), according to the laws of his or her country. Although some have argued that deliberately dying represents a calculated form of suicide that is intended to end unbearable suffering (Galichet, 2014), we did not consider literature on suicide more generally. There is considerable variation in the meaning of suicide in different societies and how it is understood in different disciplines (cf. Pickering & Walford, 2000; Staples & Widger, 2012). Placing “deliberately dying” in the landscape of suicide research could be one way to deepen our discourse. A growing number of authors, including Baril (2018), have discussed suicidism, a term that refers to “a system of oppression (built from non-suicidal perspectives) at the normative, discursive, medical, legal, social, political, economic and epistemic levels, in which suicidal people experience multiple forms of injustice and violence” (translated from p. 193). Suicidism as an oppressive discourse systematically devalues the vision of suicidal people from a vitalist paradigm, thus denying them the occupational right of deliberately dying.

Reflecting on other examples of planned death could further extend the understanding of deliberately dying as an occupation. Other contexts, such as state-sanctioned death sentences; kamikaze; or other ideological, political, or philosophical suicides, would deepen our reflection.

Deliberately dying also ends things not just for the person who chooses to die but for those connected to them. For example, it could offer a release from family disgrace or torment, it could fulfill social obligations, or it may have a moral or ritual purpose in others. Further work might focus on deliberately dying in relationship to others rather than the self.

Conclusion

We have argued that deliberately dying is a process that should be considered an occupation, even a purposeful and meaningful occupation, for a person who is freely capable of consent. In these circumstances, occupational therapy practitioners have a role to play to minimize distress and discomfort and support people in having a dignified death. However, most foundational occupational definitions are neither evidently nor immediately compatible with the idea of deliberately dying as an occupation. Meanwhile, we have noted several shortcomings in the way many authors define the notion of occupation. Hence, occupational scientists’ further conceptual work should address deliberately dying as a meaningful and purposeful occupation.