Dying Fit or Not—Physical Activity as Antidote to Death?

Abstract

Physical activity has increasingly gained attention within palliative care. This article aims to explore how the idea of physical activity influences patients with advanced cancer and health-care professionals’ interactions. The empirical material was gathered as part of an anthropological field study about palliative care needs among 16 patients with advanced cancer, consisting of observations and interviews with patients, relatives, and professionals. Two of the patient cases were analyzed, inspired by Goffman’s theory, showing how patients and health-care professionals interact in relation to physical activity. The findings show that patients played roles either embracing physical activity or distancing it by postponement. Professionals played expert roles of duty and attachment, stressing the importance of physical activity. Thus, they accepted a minimum of physical activity when patients were close to death. Professionals regarded patients’ absence of physical activity as a lack of desire to live; patients regard it as a way to live.

Keywords

physical activity advanced cancer patients health-care professionals role-play stigmatization

Physical activity has become a mantra in Western societies that influences the logic of health-care and health-care professionals’ practices. People are recommended to exercise to prevent or treat diseases and to prolong life. This applies to all ages: children (Tammelin et al., 2017), adolescents (Smith & Haycock, 2016; Warden et al., 2014), middle-aged (Kishida & Elavsky, 2015; Warburton et al., 2006), and elderly people (Volkwein-Caplan & McConatha, 2018).There is a special focus on active or successful aging because physical activity is supposed, implicitly, to undo old age and keep death at a distance (Katz & Marshall, 2018; Lassen, 2014; World Health Organization, 2002). This perspective on active or successful aging has received critique. First, it is difficult to define success and for whom what is successful (Jeste et al., 2013; Martin et al., 2015). Second, elderly people might experience themselves as successfully aging without meeting the objective criteria for successful aging by exercising (Jeste et al., 2013; Montross et al., 2006; Vahia et al., 2012).Katz and Marshall (2018) show how the successful aging body is depicted as measurable, manageable, and optimizable in function, despite these bodies to a certain extent being in decline and unable to be optimized any longer. This declining process could be seen as a threat to the culturally rooted anxiety toward aging and dying (Katz & Marshall, 2018). The recommendations for physical activity among elderly people might indicate a discomfort accompanying the witnessing of another’s body disintegrating and losing control. This implicit attitude of wanting to maintain as much control over and functionality within a body in decline might be comparable to the attention given to physical activity related to seriously or terminally ill patients.

The growing tendency toward recommending physical activity to patients with advanced cancer (Jensen et al., 2014; Lowe et al., 2016) can also be seen as a strategy to structure everyday life and give those patients a sense of control (Gulde et al., 2011). The emphasis on being physically active encompasses almost all aspects of being seriously ill. Often, physical activity is used to supplement medical treatment and care in the oncological field. Health-care professionals prescribe physical activity to patients as preoperative preparation (Loughney, 2017; Nilsson et al., 2016), during curative cancer treatment (Gokal, 2015), in rehabilitation (Lahart et al., 2018), and during advanced cancer treatment and palliative care (Lowe et al., 2016; Nyatanga, 2017). Many studies point to the mental and physical benefits of exercising on a regular basis, including maintaining physical skills for practicing self-care, which is linked to quality of life for the individual and reducing health-care expenses in the short and long term (Lowe et al., 2016; Wiskemann et al., 2016). Despite this, a review of 63 studies on physical activity and rehabilitation after adjuvant treatment of breast cancer shows that it is impossible to draw conclusions on physical activity regarding cancer-related and all-cause mortality or cancer recurrence. Physical activity interventions may have small-to-moderate beneficial effects on quality of life, but this must be interpreted cautiously owing to very low-to-moderate quality of evidence, heterogeneity of interventions and outcome measures, imprecision of some estimates, and risk of bias in many trials (Lahart et al., 2018). However, none of these studies explore the context for practicing or recommending physical activity to patients with advanced cancer, living close to death.

Health-care professionals play an integral role in promoting health-enhancing behaviors including physical activity not only to inactive citizens but also to patients with cancer and other chronic diseases (Loprinze & Beets, 2014).Studies show that nurses often stress the importance of exercise to obtain symptom management and quality of life, while physicians relate physical activity to the reduction of risk and mortality (Smith-Turchyn et al., 2016). These perspectives on health benefits are related to their professional roles and competences. However, it is a complex task to recommend physical activity as individual lifestyles, including habits for physical activity, also depend on social class and social preferences (Macintyre & Mutri, 2004; Shakya et al., 2015). Studies show that health-care professionals report numerous barriers to their ability to discuss with patients what they perceive to be the benefits of physical activities and related behavioral changes. These barriers are at a personal, professional, cultural, and structural level (Gulde et al., 2011; Smith-Turchyn et al., 2016). On a personal level, physical activity is linked to a hope for a future and signals not giving up. However, those who do not feel motivated or capable of physical activity might obstruct and be considered unfit for life. Cultural differences in attitudes toward mobility also perform barriers toward participating in physical activities. On a professional level, barriers exist in the form of a lack of competence to suggest relevant exercises or activities, which also depends on the professional’s cultural skills (Parry et al., 2017; Redzovic & Eide, 2017).On a structural level, the organization of physical activities might not meet the need for quick and effective referral and can create barriers for patients attending activities because of self-payment or dependency on transportation (Gulde et al., 2011; Smith-Turchyn et al., 2016). This article aims to explore how rationales of physical activity influence patients with advanced cancer and health-care professionals in their interactions. Based on two cases, this article focuses on how the idea, that physical activity is essential for a healthy life, has implications for patients with advanced cancer in regard to their self-perception and their relationship with health-care professionals.

Materials and Methods

The empirical material was gathered as part of a larger anthropological field study about palliative care needs among 16 patients with advanced cancer in Denmark from 2010–2016. The study included interviews and participating observations with these individuals, their relatives, and one they appointed to be their contact professional in this study. The main focus of the study was concerned with patients’ coping strategies when confronted with death. This meant that being physically active might or might not be part of their priorities and concerns. In several situations, physical activity was prominent, either as part of the person’s everyday routines or as a strategy introduced by health-care professionals to obtain or regain vital aspects of self-care. In this article, we selected two different patient cases, which were able to show how patients with advanced cancer acted upon health-care professionals’ recommendation or acknowledgment of physical activity. These cases were analyzed using the inspiration of Erwin Goffman’s sociological concepts of “interaction,” “identity,” “roles,” and “stigma” to explore how interactions in relation to physical activities took place (Goffman, 1955, 1963, 1967, 1990). The cases were not representative of the total empirical material in the study, but they exemplify different strategies to “physical activity,” which can contribute to understanding the complexity of “physical activity” as an important factor in life and treatment in modern society today (Sudmann & Glasdam, 2019).

Recruitment

Patients with advanced cancer were recruited from medical care settings, consisting of one oncological ward, two palliative care units, and one medical ward at hospitals, a rehabilitation center, and organizations supporting people with an ethnic minority background. The patients all had palliative care needs. They gave consent for the researchers to contact a relative and a professional such as a health-care professional or chaplain who were informed about the study by phone. Overall, 16 patients with cancer, 15 relatives, and 15 health-care professionals were included.

Procedures of Interviews and Observations

The study consisted of both in-depth interviews and field observations. Observations were conducted on four hospital wards and in the homes of the patients, located throughout Denmark. The fieldwork proceeded over a year, 2011–2012. The study materials consisted of handwritten observation notes and 64 interviews with patients, relatives, and professionals. Interviews were recorded on a dictaphone and transcribed verbatim. They lasted between 24 and 170 minutes with an average of 75 minutes. The participants were interviewed twice within a 3-month period if their situation allowed. Almost half of those included in the study died within the 3 months. The interview situations offered a unique opportunity to observe how patients acted in everyday life regarding physical activity, both at home and in health-care settings. Overall, the field observations contained elements from patients’ treatments and hospitalizations, family visits, social events, and funerals. The field notes were kept in handwritten journals and on the computer. The mean time for following a person was 15 months but varied from 3 weeks to 6 years depending on the death of the person. After the planned field study period of 1 year, the patients were followed by occasional observations and follow-up phone calls until their deaths.

Analytical Strategy

Two cases were carefully chosen from the entire empirical material to show different strategies within the patients’ attitudes toward physical activities and their bodies in a process of deterioration. The cases were based on interviews with the patients, their relatives, health-care professionals, and on observations of the interactions taking place between them. The cases focused on how the meeting between the infirm body and the “ideal body” promoted by the health-care system took place in medical or homecare settings and how these meetings could provoke stigmatization of the actual deteriorating, dying body. The analytical strategy drew on Goffman’s theories concerning role-play and interactions with a special interest in the construct of identity in relation to stigma (Goffman, 1955, 1963, 1967, 1990). Goffman introduced a conceptualization of identity in his study of human interaction using metaphors borrowed from dramaturgy (Goffman, 1990). He analyzed interpersonal interactions and how people perform in order to project a desirable image using theater to illustrate individuals’ contrasting front stage and back stage behavior. During interactions, those participating were viewed as actors (Goffman, 1990). An actor is conscious of being observed front stage by an audience and will perform in accordance with certain rules and social conventions (Goffman, 1990) to avoid losing face while maintaining the desired self-image (Goffman, 1955). An actor’s behavior will often be different in a private, back stage environment where no performance is necessary. Back stage is a space, without public view, where actors can allow themselves to use the language they desire, wear preferred clothes, and interact or refrain from interacting with whomever they want. Back stage informs or constructs the characters presented front stage, while the performance can be regarded as self-presentation (Goffman, 1990). Rituals and institutions both influence the character of people’s behavior through microsocial expectations and norms (Goffman, 1967). Goffman distinguished between degrees of formality in situations. Thus, in formal meetings, there is typically a clear plot, which is the case in most health-care settings where interactions take place due to hospitalization or prescheduled encounters. In the cases, we looked at interactions between health-care professionals and patients regarding physical activity. We focused on the roles that they played both front stage and back stage when the plot was about physical activity. Goffman proposed four categories of roles that can be expressed in situations. The role of duty is taken upon the individual as a necessity. The role of attachment is preferred by the one playing it. The role of embracement is taken voluntarily because it is interesting. Finally, the role of distance is taken by a person when they do not want to put on a specific role (Goffman, 1990). We used the four categories to identify the types of interactions taking place between health-care professionals and patients in their negotiation of physical activity.

The idea of an infirm body being close to death influenced these roles. Several sociologists have claimed that death is still perceived as a taboo in Western societies (Bauman, 2013; Jacobsen, 2017). Even though other sociologists argue against death as a cultural taboo (Walter, 1991, 2008), most people would be reminded of their own mortality by witnessing a dying, decaying body (Jacobsen, 2017). The emotional reactions for most people brought up in a rationalized Western context are not to speak openly about death as a naturally occurring event (Jacobsen, 2017). These reactions form a threat of exclusion as it is leaving the dying at a risk of experiencing loneliness and alienation (Elias, 1985). When a person has a characteristic distinction from others and when those characteristics are socially undesired, the person can be regarded as bad, dangerous, or weak. These characteristics are conceived as stigmas and cover both social identity and personal identity especially if their disqualifying effect is pronounced (Goffman, 1963). Stigmas and stigmatization are social processes in which an individual’s normal social identity is destroyed because of environmental reactions, categorizations, and more. Through a categorization process, people who hold nonculturally accepted attributes or behaviors are placed in impaired social stereotypes (Goffman, 1963). Goffman distinguishes between three forms of stigma, respectively, (a) bodily abominations that refer to different forms of physical deformities; (b) blemishes of individual character perceived as weak will, domineering or unnatural passions, treacherous and rigid beliefs, and dishonesty; (c) tribally-based stigma, for example, on race, religion, or national affiliation (Goffman, 1963).

Inspired by Goffman’s framework, we analyzed the two cases by asking the following questions of the empirical material:

Which signs of taken-for-granted values and ideas about physical activity appeared in the empirical material among the different actors?

How did these values and ideas relate to the actors’ identities and roles?

What influence did these values and ideas have for patients with advanced cancer?

Ethical Considerations

In Denmark, the Danish National Committee on Health Research Ethics only assesses biomedical studies such as clinical trials or psychosurgery. In this sense, an approval from the Danish National Committee on Health Research Ethics was not a legal requirement as anthropological fieldwork is rooted in the social sciences and is considered neither a trial nor a surgical procedure (Hoeyer et al., 2005). The study followed the principles of the Helsinki Declaration (World Medical Association, 2013) and adhered to the principles of situational research ethics as a considered ethical code of conducting anthropological fieldwork (Oeye et al., 2016). In accordance with the Act of Processing Personal Data, the study was approved by the Danish Data Protection Agency, J. No. 2013–41-1712.

Findings

Case 1: A Socially Stigmatized Person as Patient

Social Characteristics of Mary

Mary was in her late 50s when she was diagnosed with cancer. Throughout her adult years, she felt stigmatization about her body. She was from Kenya. In the 1970s, she came to Denmark at the age of 24 because she married a Danish man. He died after 10 years of cohabitation. She was infertile and had no children, and this was her biggest sorrow, adding suffering to her life. One of her sisters who also lived in Denmark ridiculed her for her infertility, going so far as calling her “a mule” because mules are not able to reproduce. Infertility was regarded as shameful for her and her African family. To compensate for this stigma, she took care of her siblings’ children, supporting them economically and emotionally. Apart from this interaction, she had limited contact with her family living in Kenya but met her family in Denmark on a regular basis. She lived in a flat located in a so-called deprived neighborhood. She lived among other ethnic minorities where the Muslim community was prevalent. The children often threw stones at her balcony where she had a crate of empty beer bottles. She thought this might be partly related to her religious identity as a Christian and their Muslim upbringing and partly because of her African ancestry. A close relative explained that: “It began when some of the children in the yard asked if she was Muslim. When she answered that she was Christian, they started throwing stones.” According to Goffman, her flat and family life could be regarded as her back stages. However, it sometimes changed to her front stage when children threw stones at her balcony or when officials, such as health-care professionals, showed up.

Mary was born a Catholic. Her mother converted to the Baptist Church in her late adulthood, and Mary was raised to be tolerant toward different Christian congregations. In Denmark, she sought to become a member of the local Protestant congregation of the Church of Denmark. The church did not give her the community she sought so she began hanging out with “the people of the street” and suffered with alcohol abuse. She also smoked frequently until she was diagnosed with cancer. Otto, her best friend, said that in this period of her life, Mary was very unhappy: “It was normal that she would phone at 3 am, saying ‘I’ll kill myself’.” Then, he would pick her up from the pub and drive her home. According to Otto, Mary stopped drinking after some years, which was related to participating in a Danish language course. Mary enjoyed this course where she also met other people in the same situation as herself. Otto expressed how joyful Mary was by saying: “When I met her at the bus stop [after the lessons], she would be dancing down the pavement.”

Mary’s identity was marked by the experiences of being stigmatized, which influenced the roles she played both front and back stage. Back stage, at home and in family relations, she felt stigmatization concerning her religion and her infertility. On the front stage, in public spaces, she felt stigmatization concerning exclusion from a religious community, her alcohol abuse, the place she lived, her ethnicity, and language. In relation to Goffman’s three categories of stigma, she was exposed to tribal stigma related to her ethnicity and religion, stigma of bodily abomination related to her infertility, and stigma due to blemishes of individual character related to her alcohol abuse. Overall, her identity was already marked by different stigmas before she received her cancer diagnosis. This influenced her way of perceiving her role as a patient, including how to meet expectations of physical activities, which had never taken up much of her attention in everyday life. She mostly focused on physical activities as part of household duties or in relation to work during the time she was cleaning for others. In addition, physical activity could be an expression of joy and amusement, for instance, dancing. Physical activities with the sole purpose of keeping fit were not priorities in her life.

Lack of Physical Activity Corresponded to Lack of Will to Survive

Mary had been treated with radiotherapy and chemotherapy for throat cancer, which Otto related to her previous drinking and smoking habits. Mary was enrolled in palliative care because of severe treatment-induced pain. The treatment had caused a fistula between her larynx and esophagus. In general, her physical condition was weak. She suffered from recurrent pneumonia caused by the fistula where food transferred to the larynx during coughing or eating. She found that her condition and general performance fluctuated: “Sometimes I’m fine, sometimes I’m bad, so right now I’m feeling bad. Last week I was well – it differs.” She had daily visits from a homecare nurse, changing her back stage into her front stage, where the interactions took place through her role as a patient and the nurse’s role as a health-care professional. Mary had a strong desire to travel to Kenya to visit her mother for the last time. Her mother was an old woman and was not able to travel to Denmark. Health-care professionals used Mary’s longing for her mother as a motivation for daily physical activities that included walking and shopping. They put pressure on Mary to be physically active, which supported Mary’s desire to visit her mother. The homecare nurse said: “It is also quite realistic that she would be able to do it [travel to Kenya], if she is willing to do the work it will require for her to get there.” However, even those few activities felt almost impossible for Mary to overcome. She explained: “I went shopping yesterday – only a short walk. But then I couldn’t sleep during the night because of the pain.” When interacting with the homecare nurse, Mary often played the role of distance, not by being impolite, but simply by postponing the physical activities that the homecare nurse had recommended. Often, this frustrated the homecare nurse because she was medically informed that there were no physical obstructions preventing Mary from being physical active. The nurse’s job required her to take on a role of duty regarding the recommendations for physical activity. This placed her in an inextricable field of tension between the health-care system’s expectations and the patient’s wishes. The X-ray showed that the tumor was not progressive. Health-care professionals, who interacted with Mary, attributed Mary’s aversion to physical activity to mental problems and the fear of dying. They believed it was Mary’s own responsibility to stay alive, as articulated by the homecare nurse, who most often visited Mary: “If she wants to return to life, then she has to believe that there is still a life to live for her, and then set some new goals.” Health-care professionals perceived Mary’s distancing and postponing as problematic. Therefore, they interacted with her by playing their duty role and, at the same time, a role of attachment sympathizing with the prevailing idea of physical activity. They saw it as part of their role to motivate Mary to be physically active in order for her to actively participate in everyday life and prevent depression and isolation. Because they could not convince her about the importance of physical activity, Mary did not play the expected role of being responsible for her own health and life. As a result, health-care professionals understood her low level of physical activity as a lack of will to live and found that Mary was not motivated enough to become physically fit to visit her mother. This became part of their interaction and contributed to a stigmatization of Mary’s physical and mental condition, labeling her as a patient who had given up on life. From the perspective of professionals, the role of being “the good patient” was related to a willingness to live that was connected to the rationale of staying physically fit. Mary knew that her physical condition was determining her chance to say goodbye to her mother: “I want to visit my family, but they [professionals] say if I don’t get well then I can’t travel. Therefore, I have to pray to God so I can eat some good food and get the strength to travel.” Mary put an emphasis on eating to strengthen her physical condition. She related her weak, physical condition to a lack of appetite and difficulties with eating: “It hurts a lot. I can’t sleep at night and I can’t eat properly.” Mary’s way of handling pain, sleep, and hunger regarding her physical weakness, through her role of distancer, was in opposition to health-care professionals’ roles of duty and attachment, which focused on her activity level as an indicator for her survival.

Lack of Physical Activity Related to Forthcoming Death

The responsible doctor at the palliative care unit agreed with the views of the homecare nurses. She found that Mary’s low level of physical activity was a lack of motivation related to a lack of understanding of her own life situation, thus ascribing a role to Mary characterized by distancing herself toward the norms. Reflecting on Mary’s lack of commitment regarding physical activity, the nurse did not explicitly relate it to norms belonging to Mary’s original ethnic background. She connected it with a lack of knowledge:

I think Mary herself was the biggest obstacle, and I think it is likely to be related to a poor understanding rather than a lack of will or some sort of reluctance. She did not have that. I do not think she really understood.

However, Mary’s experience with physical activity as pain-provoking was not taken into consideration when interacting with her at home or in the clinic. Consequently, the doctor’s perception of Mary’s lack of motivation due to a lack of knowledge meant that she seemed unwilling to be physical active. When Mary was pushed by health-care professionals, she agreed to be physically active in the future but never in the present. Her friend explained it in this way: “Then she would say: ‘I’ll try to do it tomorrow’, and when the healthcare professional would answer: ‘Well, it’s nice weather today, you just go down the stairs and up again’, Mary would answer: ‘Naaah, not really’.” Health-care professionals found this avoidance difficult to handle. They tried to engage her and make her embrace the need to be physically active—both as a practice to regain strength to fulfil her desires in life and as a manifestation of a will to live. Embracing the role of being physically active became a synonym for staying alive for health-care professionals. Mary chose to communicate indirectly about her resistance toward physical activity to avoid a confrontation of opposing understandings on the professional’s front stage. During the field study, Mary never explained to the professionals how she thought food was the most important factor for the body to function best. Nor did she explain to them that she considered it inappropriate to provoke the body to physical activity that triggered pain. By contrast, she played the wannabe role of being active in the future. Through this role, Mary contributed to health-care professionals’ convictions about her unwillingness to participate in her own survival. In that way, Mary supported the idea that human health coincides with being physically active, which is embedded in modern Western societies.

Demands on a Physically Active Hospitalized Patient

During hospitalization, Mary was also confronted with expectations about physical activities. It was difficult for her to accept encouragement to be physically active, which seemed to her to be at variance with her expectation to be supported and cared for. It could be simple tasks, like having a glass of water served instead of having to get out of bed herself. Mary perceived those nurses to be unfriendly, coldhearted, and careless toward patients, and she regarded them as problematic and demanding.

Some of them are very rude. They do not like people. It is very bad. We go there because we are ill, or else you would not go there. They want you to do things yourself, even when you cannot, or else they get annoyed with you.

Understanding the importance of physical activity differed significantly between Mary and health-care professionals. This ultimately forced Mary to take the role of a physically active hospitalized patient as she respected the authority of health-care professionals.

Mary’s resistance and response to the professionals’ requirements for physical activity was emphasized by the importance of eating to get physically strong and to be able to visit her mother in Kenya. Mary tried to play the role of “the good patient” who wanted to live by an agenda of nutrition.

Case 2: A Patient Already Oriented to Physical Fitness

Social Characteristics of Lisa

Lisa was a woman at around 60 years old. In many ways, Lisa had experienced hardship before being diagnosed with cancer. Lisa suffered from aggressive juvenile arthritis that left her unfit for work. In addition, on her mother’s initiative, Lisa took tranquilizers during her adolescence because of anxiety. Summing up her physical condition Lisa said: “So as a matter of fact, I have cancer, an ear disease, arthritis and anxiety [with panic attacks]. That is four diseases.”

When young, Lisa was physically attractive, interested in fashion, and attended parties where she liked to dance. She was granted lifelong welfare benefits, so she had enough money and was incapacitated but privileged. Her ex-husband, who still took care of her during her cancer, found the retirement devastating to her self-confidence: “Because she never had anything to do. She was always sitting at home. Moreover, she needed social activities. Her focus became her physical appearance and the dog.” In her youth, she tried to hide her receipt of welfare benefits: “I told someone that I was working at the library, others that I worked as a housekeeper. Some people commented on the difference, saying that I shifted jobs quite often.” Lisa was afraid of being judged by potential boyfriends and their families. Nevertheless, she married a man whose family accepted the disability. However, most people’s reaction left her with a sense of stigmatization. She compensated by focusing on external body expression and was slim and fashionable. According to Goffman, such strategies were used at the front stage to pass as normal, leaving a discrepancy between Lisa’s actual and virtual social identity.

Through adulthood, Lisa developed and struggled from alcohol abuse. She blamed her ex-husband as part of the reason. She managed to hide her consumption of alcohol for a long time. Her ex-husband explained:

Some bottles fell out of the trunk. That was when I discovered it. I told her, I would leave her, if she kept drinking. However, I couldn’t. It became a habit where I would repeat myself, and she would continue drinking.

Lisa stopped drinking when she got cancer. However, she was not able to quit smoking. One of Lisa’s professional caregivers, connected to the psychiatric system, who had known Lisa since she finished her first cancer treatment, reflected on Lisa’s life and conceived her as a lonely person: “She has her God, her dog and her own company. There is no one to talk to.” When the caregiver began to visit Lisa, Lisa sat alone at the kitchen table not knowing what to do with herself. At that time, Lisa was declared cured. However, she still suffered from disturbing thoughts, cried, did not want to go out, and so forth. She was afraid of relapse. The professional caregiver focused mainly on helping her return to her daily routine, which included taking up her interest in her appearance. They went to the hairdresser, went shopping, and started to see a beautician on a regular basis. Lisa’s motivation could have stemmed from wanting to pass as normal. Her former life experiences with having both bodily and moral stigmas made her hyperaware of her appearance and the roles she could play that would not expose her illnesses or weaknesses in unwanted situations. Even though Lisa had been minimally physically active for many years, her third relapse changed this.

Physical Activity Corresponded With the Will to Live

By Lisa’s third relapse, 14 years after the primary diagnosis, she struggled to keep fit. Her daily routines included walking her dog several times a day and running at the same spot on the kitchen floor for 15 minutes every morning. In addition, she did garden work when the season allowed it. During this time, she had a period where she made an extra effort. She exercised for 2 hours each day and ate more vegetables and fruits than ever before. The professional caregiver witnessed this change: “I asked myself, does she do this to be sure that she gets everything from life that she can.” Lisa explicitly explained the change when she interacted with health-care professionals other than her caregivers. Front stage, she wanted to show that she had become even healthier. It was important to her to be able to continue walking her dog. Furthermore, she wanted to make it obvious to everyone that she really wanted to stay alive. She played the role of being physically active as part of her front stage performance by talking about and demonstrating her activities. For example, “when she visited the doctor for a check-up, she walked up the stairs to the second floor with the nurse who was attending the consultation” (field notes). The doctor took on the role of attaching the medical norms on physical activity, acknowledged her physical efforts, and appointed her as an expert on how to manifest lifestyle changes. Lisa was thereby empowered to continue her healthy lifestyle and succeeded in embracing her role as a patient who voluntarily put extra effort into securing her own survival. However, this effort did not affect her anxiety about dying. Even though her cancer was stable, Lisa was afraid of progression. The doctor played the role of an expert and advised her to live with this anxiety as part of the side effects of cancer. The doctor focused on the benefits ascribed to physical activity and not on her anxiety to maintain the quality of her life.

Immediately after this consultation described earlier, Lisa lit a cigarette and excused herself by saying: “My hairdresser says that smoking cannot be that bad.” She explained that smoking was the last sin she allowed herself to have but did not mention it to the doctor at the consultation. By excusing herself, she played the role of the patient embracing the legitimate norms of health-care professionals. It was important to her to be conceived of as a person taking care of her own life even though she kept her smoking habits silent. She hid smoking at front stage performances as it could actualize moral stigma. She knew smoking could influence cancer negatively, and she feared the criticism of others regarding her choice.

Demands on Appearance as an Alternative to Physical Activities

Lisa tried to keep up her level of physical activity even when the cancer progressed again. She was offered palliative treatment and a new kind of chemotherapy that could help to stabilize her disease. During the treatment, she experienced side effects that manifested in vomiting and having diarrhea at the same time, which made further treatment impossible. Lisa was in despair, but she continued her daily physical routines of walking the dog and running on the floor. After a while, she received experimental medicine followed by a period of fatigue, hopelessness, and depression. She felt like giving up: “I feel empty inside.” During this period, she became less physically active. Lisa resigned herself to the role of distancer, although, previously, she had had a role embracing the health ideals of physical activity. Her level of physical activity thus functioned as an indicator for whether she played the role of someone fighting for survival or someone able to maintain a good quality of life.

During the last stages of her life, Lisa was both at a hospice (treated for constipation, loss of fluids, and anxiety) and at home. At a home visit by a nurse from the palliative care unit, who did not know Lisa particularly well, Lisa was confronted with expectations concerning her appearance.

The nurse told me that I looked untidy. I just got out of bed and did not have a shower. I thought it was an odd thing to say to a patient with cancer. Didn’t she realise that the energy you have is not sufficient for everything you need to do?

Lisa’s home, her back stage, was transformed into front stage. Despite this, the health-care professional realized Lisa’s condition and did not persuade Lisa to be physically active. Lisa expressed an expectation about prioritizing physical activities around appearance so that Lisa could still embrace the role of a patient striving to live. However, to Lisa, others’ acceptance was of greater importance than the actual deed of being physically active or trendy. Therefore, this interaction left Lisa with a sense of being stigmatized as she was not acknowledged for having played the role of embracement or at least been seen as normal most of her life.

Discussion

The main findings of the analysis of the two cases will be discussed in relation to the idea of physical activity as essential for a healthy life and the way that this idea influenced the interactions between terminally ill patients and health-care professionals. Both Cases 1 and 2 show how health-care professionals presented the idea of physical activity as good, important, and necessary for staying alive or maintaining quality of life, no matter which (cultural) preferences, habits, and attitudes the individual had. As seen in Cases 1 and 2, health-care professionals tried to motivate patients to be physically active in order to prevent progression of cancer, to keep patients capable of partaking in daily routines, and to stimulate patients’ abilities to take care of themselves. However, as exemplified in Case 2, health-care professionals’ focus on physical activities diminished when a patient came close to death. Research regarding elderly people, which by definition are close to death, shows the same pattern (Sudmann & Glasdam, 2019). At the same time, physically active patients might be less dependent on health-care professionals than physically inactive patients. This gives an implicit economic rationale for motivating patients to be physically active. The economics of palliative care is a high priority in the Western world (May & Cassel, 2018). This priority exists in close connection with a neoliberal ideology where politicians, health-care bureaucrats, and health-care professionals increasingly require answers to questions about whether health-care interventions work as intended and are cost-effective (Oeye et al., 2015; Wallin, 2009). The dominant neoliberal values are closely connected to an understanding of public health as health promotion. Different health-care professions are informed by humanistic values but are predominantly constituted by an individualistic, medical rationale in health-care settings (Glasdam et al., 2020; Wackerhausen, 1998). However, the professional mentality of health promotion does not distinguish between motivating a seemingly healthy citizen in need of physical rehabilitation and people close to death. The ideals for the living are transferred to those at the end of life (Cohen & Deliens, 2012) and that can raise problems at an individual level as seen in Case 1. The idea of physical activity can put pressure on patients in palliative care by the patient as in Case 2 or by professionals as in Case 1. The expectation of behaving as a “good” patient seems to correspond to staying physically active. Patients who meet these expectations by being self-responsible and taking initiatives receive recognition from health-care professionals as exemplified in Case 2. Patients who do not meet these expectations can feel pressured to be physically active. This pressure apparently occurs when there is an unspoken disagreement between the professional and the patient about the capability and the priorities of the patient, as shown in Case 1. This disagreement could also be related to attitudes toward the infirm body. When the professionals in the present study recognize that a person is close to death, there is a shift in their understanding that the patient must be physically active toward the patient’s ability to keep up appearances as seen in Case 2. Even though there is an adjustment of the expectations from the professionals toward physical activities when death is approaching, the episode points to beliefs that bodily decay and the evidence of disease are something that need to be disguised rather than tolerated and accepted (Timm, 2008). Western society rewards good looks (Cavico et al., 2012) which is why appearance management is promoted, for example, in the form of fitness or other physical activities (Dworkin & Wachs, 2009). This effectively puts bodily control into focus, even in the process of dying.

Seemingly, some patients strive to practice physical activity to gain recognition. However, they can also be motivated by the struggle to survive as seen in Case 2. The idea of physical activity as an antidote to death is widespread. Humans have often sought to manifest physical strength and to stay alive as long as possible as a way to strive for immortality (Brown, 2017). Due to the domination of a healthy discourse stressing the importance of physical activity, other strategies for survival are not recognized as good, for example, focusing on nutrition as a main indicator for a desire to survive as seen in Case 1. The logic of health promotion in the form of physical activity gives the idea that one can do something to prevent or delay dying (Bauman, 1993). This striving to stay physically fit camouflages the realization of one’s mortality. Therefore, recommendations for physical activities tend to ignore the decaying and dying body as part of a natural life course.

Taken-for-granted values of physical activity also influenced interactions between health-care professionals and patients. Both Cases 1 and 2 illustrate a power asymmetry where health-care professionals decide what seems beneficial for the patient. In Case 1, the frustration over the patient’s wish not to take part in the recommended physical activities exemplifies health-care professionals’ assurance that they know best how to practise a life worth living while being close to death (Banerjee, 2008). However, resistance takes place in the form of nonadherence. In Case 2, taken-for-granted values are exchanged through the interaction whereby the norms of society come into play (Sercu & Bracke, 2016).When health-care professionals are not conscious of the power asymmetry, they risk stigmatizing (Goffman, 1963, 1990), as shown in both Cases 1 and 2.Whether something is conceived as stigmatizing depends on the context. Therefore, stigmatizing acquires certain meanings (Pescosolido et al., 2008) and, as illustrated in Case 2, can lead to adherence to recommendations and ideals for physical activity but also lead to obstruction of recommendations as in Case 1.This interaction between patients and health-care professionals mirrors the dynamics of both context and individual experiences of different types of stigmas. Health-care professionals are informed by the structural approach to make the population fit and less costly, while the patients have their own lives, routines, and habits and risk being stigmatized when not obeying the orders of health-care professionals. This is especially the case when responsibility for their own survival may no longer be reflected in maintaining everyday activities but has been transformed to meet society’s demands for healthy living (Sudmann & Glasdam, 2019)—a way of living that is supposed to fit everyone without regard to a person’s life circumstances, lifestyle, routines, and culturally informed habits.

The method of this study should also be discussed. Anthropological methods are suited to adapt to the context of those being studied, including palliative care (Engström, 2012; Raunkiær, 2007).Ethical dilemmas appear regarding how researchers can intrude into a private sphere and how patients, families, and professionals accept this intrusion. Therefore, the researcher was keenly aware of the participants’ well-being and needs and adjusted her observations in response to actual circumstances. Both interviews and observations were carried out with an awareness of language, presence, and genuine interest. It seems to be an advantage to use cases to inform the clinical practice and to study different aspects of Western culture’s attitude toward death and dying because it allows the researcher to reflect on the context, the meaning of the context, and the influence of the idea of physical activity in the research (Flyvbjerg, 2006). Simultaneously, the use of cases in this article has limitations due to transferability of the findings, and further research is needed to explore whether the findings can be generalized to other cases. Using Goffman’s theory as an analytical lens makes it possible to minimize and break with the preconceptions of the researchers. By moving one’s preconceptions to a theoretical perspective, it is possible to be stringent and transparent in the analysis with a limited disruption of the researchers’ own, unconscious preunderstandings. Goffman’s perspective also challenges faith in the seemingly self-evidence of truths presently valued in the thoughts and practices of the health-care system and contributes to understanding the influence those values have on the interaction between health-care professionals and patients within palliative care.

Conclusion

This article showed how patients with advanced cancer and health-care professionals could interact in relation to physical activity. The idea of physical activity was regarded by health-care professionals as essential for living functions and was an underlying shared mental concept that framed the plot in meetings between professionals and patients front stage, in hospital, at hospice, or at home. The two patients in the analyzed cases had experienced different types of stigma that influenced their identity and the roles they played toward physical activity. Often, health-care professionals had the role of duty because of their employment in the health care system and attached the role as experts, and in this role, they stressed the importance of physical activity. In present study, patients played roles as embracers or distancers by postponing activities back stage instead of refusing them front stage. Health-care professionals changed their attitudes and accepted limited physical activity when patients were close to death. Physical activity risked becoming a discriminatory parameter and a synonym for staying alive and postponing death. It appeared as a quality of life issue for health-care professionals but not always for the patients it involved. Under certain circumstances, physical activity seemed to be regarded as an antidote to death, for instance, when striving to stay physically fit when being terminally ill. Also, when it camouflaged the realization of one’s mortality. Thereby, the recommendations for physical activities risk ignoring the decaying and dying body as part of a natural life course. The question is whether physical activity has become the “new religion” of secularized societies where health-care professionals act as “health priests” with little attention to the patient’s circumstance and lifestyle. The study adds important knowledge for health-care professionals in palliative care by showing how interactions between health-care professional and patients were influenced by general societal trends regarding physical activity. The study calls for further research on opportunities and consequences for palliative patients of recommendations and performance of physical activities. The research should include perspectives of health-care professionals, patients in palliative care, and their families as an extension of the present study in order to strengthen the generalizability of the findings presented. Further studies with a particular focus on power relations between health-care professionals and patients in palliative care in relation to physical activity seem important.

Footnotes

Acknowledgments

Thanks to all participants in the study. Thanks to Penny Bayer (UK), Cookie Echsner-Rasmussen (DK), and Frederik Pahus Pedersen for language proofing.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The research was supported by The Research Fund of The University of Southern Denmark, The Danish Cancer Society (R13-A662-09-S3), The Health Foundation (2011B146), and the University of Southern Denmark.

Author Biographies

Hanne Bess Boelsbjerg, PhD, is post doc at the Faculty of Medicine, Interacting Minds Centre, Aarhus University and Elective Surgery Center, Silkeborg Regional Hospital. Her field of research is within medical anthropology with a strong focus on cancer, palliative care and patients in an ambiguous state of consciousness. Here she explores the existential and spiritual issues related to coming closer to dying. She has mainly edited and written publications for a Danish audience.

Stinne Glasdam, PhD, is associate professor at the Faculty of Medicine, Division on Nursing, Lund University. Her field of research is medical sociology, focusing primarily on conditions considering cancer, antibiotic resistance and elderly. Furthermore, she is interested in professionalization strategies and ethics in the medical field. She has written many national and international publications.

ORCID iDs

Hanne Bess Boelsbjerg

Stinne Glasdam

References

Banerjee

(2008). Disciplining death: Hypertension management and the production of mortal subjectivities. Health, 12(1), 25–42.

Bauman

(1993). Scandal of death. New Statesman and Society, 6(248), 21.

Bauman

(2013). Mortality, immortality and other life strategies. Polity Press.

Brown

(2017). The future of death and the four pathways to immortality. In Jacobsen

M. H.

(Ed.), Postmortal society. Towards a sociology of immortality (pp. 40–56). Routledge.

Cavico

F. J.

Muffler

S. C.

Mujtaba

B. G.

(2012). Appearance discrimination, “lookism” and “lookphobia”. The workplace. Journal of Applied Business Research, 28(5), 791–802.

Cohen

Deliens

(2012). A public health perspective on end of life care. Oxford University Press.

Dworkin

S. L.

Wachs

F. L.

(2009). Body panic: Gender, health and the selling of fitness. New York University Press.

Elias

(1985). Loneliness of the dying. Blackwell.

Engström

(2012). The clinic moves to the home: Nursing institutional practice in specialized palliative homecare [Doctoral dissertation]. Uppsala University.

10.

Flyvbjerg

(2006). Five misunderstandings about case-study research. Qualitative Inquiry, 12(2), 219–245.

11.

Glasdam

Ekstrand

Rosberg

van der Schaaf

A.-M.

(2020). A gap between the philosophy and the practice of palliative healthcare: Sociological perspectives on the practice of nurses in specialised palliative homecare. Medicine, Health Care and Philosophy, 23, 141–152. https://doi.org/10.1007/s11019-019-09918-2.

12.

Goffman

(1955). On face-work: An analysis of ritual elements in social interaction. Psychiatry: Journal for the Study of Interpersonal Processes, 18, 213–231.

13.

Goffman

(1963). Stigma. Penguin.

14.

Goffman

(1967). Interaction ritual: Essays on face-to-face behavior. Anchor Books.

15.

Goffman

(1990). The presentation of self in everyday life. Penguin.

16.

Gokal

(2015). Effects of physical activity on cognitive and psychosocial functioning in breast cancer patients undergoing chemotherapy: A randomised controlled trial [Doctoral dissertation]. Loughborough University.

17.

Gulde

Oldervoll

L. M.

Martin

(2011). Palliative cancer patients’ experience of physical activity. Journal of Palliative Care, 27(3), 296–302.

18.

Hoeyer

Dahlager

Lynoe

(2005). Conflicting notions of research ethics. The mutually challenging traditions of social scientists and medical researchers. Social Science & Medicine, 61(8), 1741–1749.

19.

Jacobsen

M. H.

(Ed.). (2017). Postmortal society. Towards a sociology of immortality. Routledge.

20.

Jensen

Baumann

Stein

Bloch

Bokemeyer

de Wit

Oechsle

(2014). Exercise training in patients with advanced gastrointestinal cancer undergoing palliative chemotherapy: A pilot study. Supportive Care in Cancer, 22(7), 1797–1806.

21.

Jeste, D. V., Savla, G. N., Thompson, W. K., Vahia, I. V., Glorioso, D. K., Martin, A. S., Palmer, B. W., Rock, D., Golshan, S., Kraemer, H. C., & Depp, C. A. (2013). Association Between Older Age and More Successful Aging: Critical Role of Resilience and Depression. American Journal of Psychiatry, 170(2), 188--196. https://doi.org/10.1176/appi.ajp.2012.12030386

22.

Katz

Marshall

B. L.

(2018). Tracked and fit: FitBits, brain games, and the quantified aging body. Journal of Aging Studies, 45(2018), 63–68.

23.

Kishida

Elavsky

(2015). Daily physical activity enhances resilient resources for symptom management in middle-aged women. Health Psychology, 34(7), 756–764.

24.

Lahart

I. M.

Metsios

G. S.

Nevill

A. M.

Carmichael

A. R.

(2018). Physical activity for women with breast cancer after adjuvant therapy (Protocol). Cochrane Database of Systematic Reviews, 1. https://doi.org/10.1002/14651858.CD011292.pub2

25.

Lassen

A. J.

(2014). Active ageing and the unmaking of old age: The knowledge productions, everyday practices and policies of the good late life [Doctoral dissertation]. Copenhagen University.

26.

Loprinze

P. D.

Beets

M. W.

(2014). Need for increased promotion of physical activity by health care professionals. Preventive Medicine, 69, 75–79.

27.

Loughney

(2017). The effect of neoadjuvant cancer treatment and exercise training on physical fitness and physical activity levels before elective rectal surgery [Doctoral dissertation]. University of Southampton.

28.

Lowe

S. S.

Tan

Faily

Watanabe

M. S.

Courneya

K. S.

(2016). Physical activity in advanced cancer patients: A systematic review protocol. Systematic Reviews, 5, 43.

29.

Macintyre

Mutri

(2004). Socio-economic differences in cardiovascular disease and physical activity: Stereotypes and reality. The Journal of the Royal Society for the Promotion of Health, JRSH, 124(2), 66–69.

30.

Martin, A., Distelberg, B., & Elahad, J. (2015). The Relationship Between Family Resilience and Aging Successfully. The American Journal of Family Therapy, 43(2), 163--179. https://doi.org/10.1080/01926187.2014.988593

31.

May

Cassel

J. B.

(2018). Economic outcomes in palliative and end-of-life care: Current state of affairs. Annals of Palliative Medicine, 7(Suppl 3), S244–S248.

32.

Montross, L. P., Depp, C., Daly, J., Reichstadt, J., Golshan, S., Moore, D., Sitzer, D., & Jeste, D. V. (2006). Correlates of Self-Rated Successful Aging Among Community-Dwelling Older Adults. The American Journal of Geriatric Psychiatry, 14(1), 43--51. https://doi.org/10.1097/01.JGP.0000192489.43179.31

33.

Nilsson

Angerås

Bock

Börjesson

Onerup

Olsen

M. F.

, … Angenete

(2016). Is preoperative physical activity related to post-surgery recovery? A cohort study of patients with breast cancer. BMJ Open, 6, 1.

34.

Nyatanga

(2017). Physical exercise for those living with and beyond cancer: Changing perceptions in palliative caring. British Journal of Community Nursing, 22(6), 308.

35.

Oeye

Sorensen

N. O.

Glasdam

(2016). Qualitative research ethics on the spot: Not only on the desktop. Nursing Ethics, 23(4), 455–464.

36.

Oeye

Mekki

T. E.

Skår

Dahl

Førland

Jacobsen

F. F.

(2015). Evidence molded by contact with staff culture and patient milieu: An analysis of the social process of knowledge utilization in nursing homes. Vocations and Learning, 8(3), 319–334.

37.

Parry, S. M., Knight, L. D., Connolly, B., Baldwin, C., Puthucheary, Z., Morris, P., Mortimore, J., Hart, N., Denehy, L., & Granger, C. L. (2017). Factors influencing physical activity and rehabilitation in survivors of critical illness: A systematic review of quantitative and qualitative studies. Intensive Care Med Intensive Care Medicine, 43(4), 531--542.

38.

Pescosolido

B. A.

Martin

J. K.

Lang

Olafsdottir

(2008). Rethinking theoretical approaches to stigma: A framework integrating normative influences on stigma (FINIS). Social Science & Medicine, 67, 431–440.

39.

Raunkiær

(2007). At være døende hjemme: Hverdagsliv og idealer [To be dying at home: Everyday life and ideals] [Doctoral dissertation]. Lund University.

40.

Redzovic, S., & Eide, A. H. (2017). Culture and participation (1st ed.). Routledge. https://doi.org/10.4324/9781315628554-5

41.

Sercu

Bracke

(2016). Stigma as a structural power in mental health care reform: An ethnographic study among mental health care professionals in Belgium. Archives of Psychiatric Nursing, 30, 710–716.

42.

Shakya

H. B.

Christakis

N. A.

Fowler

J. H.

(2015). Self-comparisons as motivators for healthy behavior. Obesity, 23(12), 2477–2484.

43.

Smith

Haycock

(2016). Families, youth and extra-curricular activity. Implications for physical education and school sport. In Dagkas

Burrows

(Eds.), Families, young people, physical activities and health. Critical perspectives (pp. 181–192). Routledge.

44.

Smith-Turchyn

Richardson

Tozer

Mcneely

Thabane

(2016). Physical activity and breast cancer: A qualitative study on the barriers to and facilitators of exercise promotion from the perspective of health care professionals. Physiotherapy Canada, 68(4), 383–390.

45.

Sudmann

T. T.

Glasdam

(2019). Medikalisering af hverdagsaktiviteter gennem brug af fysisk aktivitet [Medicalisation of everyday activities through physical activities]. In S. Glasdam & H. B. Boelsbjerg (Eds.), Folkesundhed – Bag om intentioner og strategier [Public health – Behind strategies and intentions] (pp. 276–289). Gads Forlag.

46.

Tammelin

Syväoja

Bugge

Froberg

(2017). Different solutions from Finnish and Danish school systems for increasing school-day physical activity and supporting learning. A top-down or bottom-up approach. In Meeusen

Schaefer

Tomporowski

Bailey

(Eds.), Physical activity and educational achievement insights from exercise neuroscience insights from exercise neuroscience (pp. 317–334). Routledge.

47.

Timm

(2008). Foranderlighed og forgængelighed – Kropsforståelser af syge og døende mennesker [Changes and impermanence. Understanding of body among severely ill and dying persons]. In M. H. Jacobsen & M. Haakonson (Eds.), Memento mori, døden I Danmark I tværfagligt lys [Memento mori, the death in Denmark in a cross-disciplinary light] (pp. 50–64). Syddansk Universitetsforlag.

48.

Vahia, I., Thompson, W., Depp, C., Allison, M., & Jeste, D. (2012). Developing a dimensional model for successful cognitive and emotional aging. International Psychogeriatrics, 24(4), 515-523. https://doi.org/10.1017/S1041610211002055

49.

Volkwein-Caplan

McConatha

J. T.

(Eds.). (2018). Ageing, physical activity and health. International perspectives. Routledge.

50.

Wackerhausen

(1998). What is natural? Deciding what to do and not to do in medicine and health care. Aarhus University.

51.

Wallin

(2009). Knowledge translation and implementation research in nursing. International Journal of Nursing Studies, 46, 576–587.

52.

Walter

(1991). Modern death: Taboo or not taboo? Sociology, 25(2), 293–310.

53.

Walter

(2008). The sociology of death. Sociology Compass, 2(1), 317–336.

54.

Warburton

D. E. R.

Nicol

C. W.

Bredin

S. S. D.

(2006). Health benefits of physical activity: The evidence. Canadian Medical Association Journal, 174(6), 801–809.

55.

Warden

S. J.

Mantila Roosa

S. M.

Mariana

E. K.

Hurd

A. L.

Fleisig

G. S.

Pandy

M. G.

Fuchs

R. K.

(2014). Physical activity when young provides lifelong benefits to cortical bone size and strength in me. Proceedings of the National Academy of Sciences, 111(14), 5337–5342.

56.

Wiskemann

Hummler

Diepold

Keil

Abel

Steindorf

, . . Thomas

(2016). POSITIVE study: Physical exercise program in non-operable lung cancer patients undergoing palliative treatment (Report). BMC Cancer, 16(1), 2725–2737.

57.

World Health Organization. (2002). Active ageing: A policy framework.

58.

World Medical Association. (2013). WMA Declaration of Helsinki – Ethical principles for medical research involving human subjects.