Social death in patients: Concept analysis with an evolutionary approach

Golnar Ghane, PhD Candidate in Nursing, a Hooman Shahsavari, Associate Professor, a, ∗ Zahra Zare, Assistant Professor, b Shirin Ahmadnia, Associate Professor, c and Babak Siavashi, Associate Professor d

Golnar Ghane

a Department of Medical Surgical Nursing; School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran

Hooman Shahsavari

a Department of Medical Surgical Nursing; School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran

Zahra Zare

b Department of Operating Room, School of Allied Medical Science, Tehran University of Medical Sciences, Tehran, Iran

Shirin Ahmadnia

c Faculty of Social Sciences, University of Allameh Tabataba'i, Tehran, Iran

Babak Siavashi

d Department of Orthopedics, School of Medicine, Tehran University of Medical Sciences, Tehran, Iran

a Department of Medical Surgical Nursing; School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran

b Department of Operating Room, School of Allied Medical Science, Tehran University of Medical Sciences, Tehran, Iran

∗ Corresponding author. Associate Professor in nursing, Department of Medical Surgical Nursing; School of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran. ri.ca.smut.anis@iravashahs_h , moc.liamg@iravashahs.namooh

This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

Associated Data

The datasets used during the current study are available from the corresponding author on reasonable request.

Abstract

Social death is an important concept that should be considered in a wide range of patients, especially in chronic diseases. Despite, there is still no clear and comprehensive definition of social death in medicine. The present study was thus conducted with Rodgers' evolutionary concept analysis method to identify the key features and provide a clear definition of social death in patients and understand its background and consequences. Considering the stages of concept analysis, an initial search was carried out in scientific databases (PubMed, Science Direct, Google Scholar, Magiran, and SID) without time limit until 2020. The search resulted in 400 articles in the first stage, which were screened according to the study objective and, all the items and points consistent with the concept's attributes, antecedents, consequences, associated concepts, alternative terms and definition were extracted. According to the results of different studies, the attributes of social death in patients can be classified into three main themes: The loss of social identity, loss of social relations (social isolation), and deficiencies related to the inefficiency of the body and various diseases. Generally, antecedents' social death in patients can be including; the factors related to the patient, Family neglect, Medical personnel's treatment of the patient as a corpse, Having no social situation. Also, there is little information available about the effect of social death on the patients themselves and their families, specialists, health care institutions and the society. Mankind's perception of social death is multidimensional and may have consequences such as bad death, disgraceful death deprivation of belonging to the society, financial vulnerability, removed or weakened legal support, stigma, and the loss of social identity. The proper understanding of social death in patients not only determines the role and importance of care in the process of incidence of this phenomenon, but also paves the way for designing an evidence-based care program for its prevention and control.

Introduction

Mankind is inherently a social being, and social roles are integral to his social existence(Králová & Walter, 2018). Therefore, given that a person's identity is associated with and exhibited through his body, losing meaningful social relationships and playing no role in the society for whatever reason can be very detrimental and devastating for the individual and leave a profound effect on his quality of life, self-esteem, personal identity, and social status(Steele et al., 2015; H. N. Sweeting & Gilhooly, 1992). From a thanatological perspective, there are different types of death, including physical or biological, psychological, and social death. Nonetheless, clinically distinguishing between the various types of death in different patients is difficult, as they are all interrelated(Borgstrom, 2017; Barney Galland Glaser & Strauss, 1966). By a general definition, physical death can be said to include physiological and biological deaths. Biological death occurs with the total cessation of vital functions of the body(Mulkay, 1992). Psychological death occurs when people become despondent and lose their faith, motivation and will to carry on with life, such that the source of mental energy, hope and motivation required for continuing living is lost, leading to a death drive(Bradbury, 2012; Prestage, 1968).

Social death is a condition that often occurs as a consequence of social isolation and the loss of social identity and role in older adults and people with chronic disabilities(Borgstrom, 2017; Králová, 2015; Williams, 2007). In some societies today, the death of very frail and sick people is considered natural and fair, since their life is given the least value and they may even be eventually abandoned by their relatives, which can lead to their earlier death(Brannelly, 2011; Caswell & O'Connor, 2015). Chronically-ill and disabled people have feature that may qualify them for experiencing social death, so that the continuing and unrecovered physical disability and disintegration of these patients pose a risk to factors such as privacy, social participation, independence, and decision-making, which once made up their life values, and the end-result will be a weakened social identity, lack of social interactions, and social deprivation of the patient and also the resentment and exhaustion of their caregivers after long-term caregiving(Borgstrom, 2015; Isaacson & Minton, 2018; Wesselmann & Williams, 2017). Accordingly, a person developing debilitating and chronic diseases with a long recovery process loses all or part of his/her social roles, which endangers his social identity and interactions, and if he/she is constantly ignored, not attended to and not properly cared for, social isolation may occur, followed by social death (Brannelly, 2011; Králová & Walter, 2018). Furthermore, a person's lack of social identity makes him look incompetent to others. These characteristics and the poor socioeconomic status of the person all come together to expel him from the society(Caswell & O'Connor, 2015). Ultimately, paired with illness, these simultaneous occurrences, which encompass several dimensions, may lead to the subject's social and psychological death(Bradbury, 2012).

Social death has a bigger structure and scope than concepts such as anxiety, body identity, and social isolation, and is not merely specific to the social sciences, and is manifested when people no longer have any hope of engaging in social roles and having social participation and are considered dead while biologically alive(Králová, 2015). Some groups are more susceptible to this kind of death. According to studies, in addition to homeless people, social death is also reported in groups of people with disability and limited mobility, dementia, low consciousness levels, and facial deformities as well as victims of massacres, those with severe burns, and people with AIDS(Bramstedt, 2018; Dageid and Duckert, 2008, Hale et al., 2013; H. Sweeting & Gilhooly, 1997). Nevertheless, theorizing about this concept in different patients is still not adequately specific and clear, and specialists in different fields dealing with distinct groups have no knowledge of the application and definitions of this concept in other fields and specialties(Borgstrom, 2017; Králová, 2015).

Nurses, as a key member of the healthcare team, play an important role in patient care and support. One of the most basic nursing responsibilities; Identify and introduce patients' experiences and perceptions to provide comprehensive patient care (Brannelly, 2011; Borgstrom, 2015). Therefore, it is essential that nurses pay attention all aspects of patients' lives in order to provide comprehensive care; So that, in addition to the biological aspects, consider the psychosocial aspects such as the patient's withdrawal from society, loss of identity and role, depression, social isolation, social death, and other consequences(Borgstrom, 2015; Králová & Walter, 2018).

Despite the importance of social death in patient care, there is still no clear and comprehensive definition of social death in medicine and nursing(Králová & Walter, 2018). Social death is an important concept that should be considered in a wide range of clinical cases, including screening for cancer and other chronic diseases, psychiatric care, grief for the sudden loss of loved ones, and chronic care for older adults and those faced with a life-threatening disease(Borgstrom, 2015). Thus, given that social death in patients has conceptual, theoretical, and practical ambiguities and complexities, the concept must first be clarified, since conceptual clarity provides the necessary foundation for theoretical expression and building a scientific basis, and emerges when the description of the concept is clear and describes the phenomenon accurately, such that it is comprehended by other people(Tofthagen & Fagerstrøm, 2010). The present study was thus conducted to identify the key features and provide a clear definition of social death in patients and understand its background and consequences so as to develop nurses’ understanding of this important concept and help them prevent its incidence in the society.

Methods

Concept analysis

Concept analysis is a concept development approach with the aim of carefully assessing the inner make-up of a complex concept and identifying its constituent parts to increase its exploratory power(Walker & Avant, 2005). Rodgers' evolutionary approach was used in the present study to clarify the concept of social death in patients. In this method, Rodgers uses an inductive approach to examine concepts within each profession's particular social and cultural context and helps further clarify the concept using a non-linear and flexible analysis process in several overlapping stages(Rodgers & Knafl, 2000).

Rodgers' concept analysis approach involves the following stages: Determining the intended concept and its associated statements and alternative terms, determining and choosing an appropriate scope and range for data collection, collecting data related to the concept's features and consistent with contextual variability, including social, cultural, interdisciplinary and temporal changes (antecedents and consequences of the concept), analysis of the data taking into account the concept's features, determining a suitable example related to the concept, and determining the hypotheses and implications of the analysis to further develop the concept( Table 1 )(Rodgers & Knafl, 2000; Tofthagen & Fagerstrøm, 2010). Therefore, considering that the concept of social death in patients has not yet been studied in medical and social sciences and health care, the present study was conducted in November 2020 to assess and clarify this concept applying Rodgers' approach.

Table 1

Steps in the rodgers evolutionary concept analysis method (Rodgers & Knafl, 2000).

Sources of data

Considering the stages of concept analysis, an initial search was carried out in scientific databases (PubMed, Science Direct, Google Scholar), and in the Persian database (Magiran, and SID). The databases were searched using the AND and OR operators in the titles and abstracts, and search keywords and MeSH terms. The preliminary search involved using the term “Social Death” in the title and abstract of articles without any time constraints, and several articles in various social and medical disciplines such as medicine, nursing, medical Sociology, anthropology and social psychology were retrieved. In the next stage, a more specific search was conducted in the noted databases using the following keywords: Patient OR Chronic Diseases AND Social Death.

The search resulted in 400 articles in the first stage, which were screened according to the study objectives. out of 148 documents were determined relevant and further assessed for inclusion. Thus, given all these steps and after reviewing the abstracts and titles, 50 articles were selected, and the full text of all those available in English was carefully reviewed and 32 articles related to social death in patient included to study. Ultimately the final articles were reviewed again by the all authors to ensure that the included articles met the criteria. To ensure the impartiality and credibility of the data and reduce bias, the process of analysis was performed by two nursing PhDs familiar with the concept analysis method and associate Professor of medical sociology, who specializes in qualitative research. Fig. 1 presents a summary of the selection process of the articles that had investigated the concept of social death in patients.

Flow chart of article selection process.

The inclusion criteria for selection were:

Scholarly articles with full text English that presented either a clear definition or at least some definitional elements

Research studies that investigated the meaning of social death in patient across different samples and settings medicine

The exclusion criteria were:

Other types of articles (letter to editor, short communication), a chapter of a book, editorial, note, conference paper, case report and news

Data analysis process

The coding procedure was performed using the Rodgers’ evolutionary method. First, the articles were studied to acquire the essence of this concept. They were then reviewed once again for systematic data collection and ensuring the coding validity. As the next step, the extracted data was classified into an Excel spreadsheet and the thematic analysis was used to specify attributes, antecedents, and consequences. Using charts and matrices, the classes were studied separately to identify key and synthesized themes, and then the findings were categorized into attributes, antecedents, consequences, associated concepts, alternative terms and definition.

In each section, data were reviewed several times to enable the researcher to submerge in them and extract the key points and labels needed to provide clear explanations of every aspect of the concept. Finally, an inductive analysis of the data about the concept of social death was carried out and the themes were identified. The data units included words and sentences given in answer to the following questions: What are the specific attributes of social death in patients? How is social death defined in patients? How is social death manifested in patients? What factors are associated with social death in patients? What are the consequences of social death in patients?

Results

The concept analysis should lead to the identification of common understanding and application of the concept. Therefore, social death in patient definitions proposed by different researchers should contain common attributes to promote the use of concept in different populations and cultures. This section first presents the attributes, associated concepts, alternative terms, antecedents and consequences(Walker & Avant, 2005) of the concept of social death in patients, followed by examples. A summary of antecedents, attributes, consequences of social death in patients provided in Table 2 .

Table 2

Antecedents, Attributes, and Consequences of social death in patients.

The factors related to the patient (include details of the disease, the individual's personal attributes, beliefs and value systems, and his economic, cultural and social status)

Loss of social identity (Rejection, being ignored and excluded by others or oneself, social withdrawal and loneliness, and the loss of personage and a valuable life)

Social death in patients: the evolution of a concept over time

Glaser and Strauss (1964) began their studies by investigating how a person's knowledge of death determines his social interactions and based their studies about social death on Goffman's theory(Barney Glaser & Strauss, 1964; Barney Galland Glaser & Strauss, 1966). Goffman's theory deals with the concept of self-abasement and refers to a chain of feelings of humility and inferiority, which, according to observations in mental hospitals, weakens the social identity of the person(Barney Glaser & Strauss, 1964; Barney Galland Glaser & Strauss, 1966; Goffman, 1961). They believed that patients who are abandoned in an institution by their family members may no longer be seen as a fully living person and merely receive dutiful care in institutions, so that, like the gradual melting of snow, these patients slowly pass away with the experience of social death. These researchers also proposed the existence of a difference between social and physical deaths for the first time(Barney Galland Glaser & Strauss, 1966).

In his studies on the social processes of mortality, Sudnow (1967) used the term “social death” and entered it into the social sciences terminology(Sudnow, 1967). Sudnow's research was conducted based on his observations in two hospitals. According to his theory, the presumed social value of dying patients determines the medical personnel's behavior and their efforts to revive the patient. Sudnow explained the differences between social death, biological death, and clinical death. He studied the behavior of others toward a person who is still clinically and biological alive but whom they envision as dead(Sudnow, 1967).

Kalish (1968) categorized the concept of death into physical, psychological, sociological, and social categories and distinguished between self-perceived social death, in which the person believes his own death, and other-perceived social death, in which others believe that the person is dead(Kalish, 1968).

Social death is a term used by Patterson (1982) for the first time to describe the concept of slavery, although he never talked about any of the above studies(Patterson, 2018). Claudia Card (2010) believes that the concept of social death must be included in the United Nations (UN) definition of genocide. She has also recounted cases such as slavery, exile, disrepute, illness, and even self-imposed isolation as other forms of social death(Card, 2010).

Sweeting and Gilhooly (1990) conducted a comprehensive review of literature on social death in the fields of nursing and sociology (H. N. Sweeting, 1991; H. N. Sweeting & Gilhooly, 1990). Then, they interviewed the caregivers of people with dementia in 1997 and found that the beliefs and behaviors of the non-family caregiver about social death differ from the beliefs of the family caregiver. Over one-third of the 95 caregivers interviewed had this belief and behaved in a way as if their sick was socially dead(H. N. Sweeting, 1991).

In a systematic meta-ethnographic review study, Jana Králová (2015) compared studies that had used the concept of social death and reported that researchers generally used the concept of social death in cases in which the person or group had experienced a profound or severe loss(Králová, 2015). The results of the noted studies indicate that social death in patient has been used in both intra and interdisciplinary fields of nursing and sociology science and is therefore a complex and multidimensional concept, and having a coherent and strong theory for it is highly important for the full understanding of this concept and the subsequent prevention of its adverse effects on patients’ health.

Associated concepts and surrogate terms

Surrogate terms help to express the concept of social death by using other descriptive words or phrases. Surrogate terms enhance the concept of social death by enlarging its contextual basis(Walker & Avant, 2005). Researchers from a wide range of disciplines have used the concept of social death in highly diverse subjects, including genocide, slavery and enslavement, exile, disrepute, dementia, illness and hospitalization, hunger, and even self-imposed isolation. A group of social researchers insisted that social death is the non-existence of the slave beyond his master, retreating from the society and regenerative self-alienation from the family and tribe in which they have been born(Borgstrom, 2015; Králová, 2015; H. N. Sweeting & Gilhooly, 1997; H. N. Sweeting, 1991; Wesselmann & Williams, 2017; Williams, 2007).

What most researchers in medical sciences mean by the concept of social death is the extreme endangerment of health(Králová, 2015). They often describe the lack of certain procedures of social death. On another note, researchers who have used the concept of social death in describing the worst situations, such as solitary confinement(Guenther, 2013) or genocide(Card, 2005, pp. 238–254), have demonstrated the lack of most or indeed all of these factors(Králová, 2015). Since these terms have been used in some studies in place of the intended concept, they were also assessed in the present review study along with the actual concept of social death.

Attributes of social death in patients

According to the American Psychological Association(APA) dictionary definition, social death becomes manifest when people come to be regarded as unfit for social participation and become corpses while still alive(Bradbury, 2012; Steele et al., 2015). Certain social groups are more predisposed to this concept, and patients, especially those with chronic diseases, are among these groups. Moreover, some researchers use the concept of social death to indicate an extreme endangerment of health. According to the results of different studies, the attributes of social death in patients can be classified into three main themes: The loss of social identity, loss of social relations (social isolation), and deficiencies related to the inefficiency of the body and various diseases(Bradbury, 2012; Caswell & O'Connor, 2015; Králová, 2015; Králová & Walter, 2018; Steele et al., 2015; H. Sweeting & Gilhooly, 1997; Wesselmann & Williams, 2017), as described below:

Loss of social identity

Chronic physical ailments lead to the attenuation of social identity, the lack of social interactions, and others hated the person(Wesselmann & Williams, 2017). A term referred to by Kellehear as embarrassing/disgraceful death(Kellehear, 2007). Social death, meaning extinction and the end of social identity, shows that death and dying are not merely a physical and bodily matter and this kind of loss is not just psychological; rather, both are inherently social(Králová & Walter, 2018; H. N. Sweeting & Gilhooly, 1992). In this respect, sociologists and medical specialists have expressed attributes that cannot be considered separate from each other(Králová, 2015).

The loss of social identity also includes three attributes: Rejection (being ignored and excluded by others or oneself), social withdrawal and loneliness, and the loss of personage and a valuable life(Card, 2005, pp. 238–254; Caswell & O'Connor, 2015; H. N. ; Sweeting, 1991; Wesselmann & Williams, 2017).

Loss of social relations (social isolation)

Social isolation means the objective loss of the person's relationships and interactions with other people, groups and the society, which deprives him of formal and informal social participation and diminishes social attachments; furthermore, it prevents his exchange of ideas and feelings with others and leads to the cessation of relationships(Aoki et al., 2018; Brannelly, 2011; Caswell & O'Connor, 2015; Steele et al., 2015). Social isolation and the loss of daily social relations can have a major role in creating conditions that are conducive to social death(Králová & Walter, 2018; Wesselmann & Williams, 2017).

Deficiencies related to physical inefficiencies and various diseases

The symptoms of social death are not just psychological, but also physical; for instance, rejection may even cause physical pain. Also, social death in patients may accelerate their psychological and physical death(Králová, 2015; Králová & Walter, 2018). In medical literature, social death has eight clinical and biological attributes, including items such as the irreversibility of the status of social death (being trapped in the present with no plans for the future), the confinement of the physical boundaries of life (e.g. staying in), misconceptions about the care needs of the body (e.g. refraining from receiving treatment), high pain threshold (e.g. reluctance to express pain), reduced personal hygiene, emotional indifference with excessive feelings of guilt, biological symptoms such as estrogen abnormalities, secondary amenorrhea, and imbalance anomalies(Bramstedt, 2018; Kalish, 1968; H. Sweeting & Gilhooly, 1997; H. N. Sweeting, 1991). Therefore, the attributes of social death have a bigger extent and structure than the concepts anxiety and bodily identity, and they are not specific to social sciences and become manifested when people have no hope of participating and playing a social role, and are considered dead when still biologically alive. Some groups and patients are more susceptible to the occurrence of this kind of death.

Moreover, certain patients, such as chronic patients with severe disability, patients with dementia, those with low consciousness levels, facial deformities and severe burns, and patients with HIV/AIDS are more predisposed to social death(Andrews & Nathaniel, 2015; Králová, 2015).

Antecedents of social death in patients

Antecedents are situations, events or phenomena for which the main concept occurs and precede the incidence of the main phenomenon(Walker & Avant, 2005). According to Rodgers, antecedent items are incidents or attributes that should form before the incidence of a concept. Antecedents help the researcher understand the social context and background of the applied concept and refine the concept(Tofthagen & Fagerstrøm, 2010). The results of the present review study led to the extraction of four antecedents. Generally, social death in patients can be the outcome of several factors, as described below:

The factors related to the patient

The factors related to the patient include details of the disease, the individual's personal attributes, beliefs and value systems, and his economic, cultural and social status(Borgstrom, 2015). Deterioration of the body may be due to aging, illness, and a variety of chronic diseases like dementia and cancer(Králová & Walter, 2018; H. N. Sweeting & Gilhooly, 1990). In these instances, although the body is weak and frail, it can still be somewhat independent, and the owner of the body tries to maintain a meaningful social identity(Isaacson & Minton, 2018).

Researchers have identified three main groups in the contemporary society whose conditions may be more conducive to social death. Group one: People with fatal and chronic diseases with a long-term recovery process, the majority of whom are kept in hospitals, care homes, and other social institutions, and although the patient is still alive, his relatives may try to have a normal life without his presence and treat him as if he was already dead. Group two: This group of people are very old and their physical and mental condition is such that death is considered natural or at least a disorder in them, since they are not valued and are often gradually abandoned in the society. Group three: This group consists of people who have suffered a personality death and have a negligible share of values in life(Králová, 2015).

Family neglect

Occasionally, when the patient is still alive, his relatives may continue to live a normal life without him, as if he does not exist and has no social identity in the view of his relatives(Barney Galland Glaser & Strauss, 1966). Under these circumstances, the family ignores and denies the patient's existence, and they carry on with their own life without any attention to the patient(Isaacson & Minton, 2018; H. N. Sweeting, 1991). Thus, the loss of character and the lack of identity caused by the family's treatment of him predisposes the patient to the experience of social death before his physical death.

Medical personnel's treatment of the patient as a corpse

Sudnow has defined social death as the treatment of the patient as a corpse when his body may still be physiologically functioning(Sudnow, 1967). This instance occurs when the physician imagines the patient is less socially durable and hypothesizes his death, such that, in some cases, permission for autopsy has been granted by an older patient's relatives before he has actually died(Králová, 2015; Sudnow, 1967). Therefore, Sudnow does not consider social death merely as the absence of a particular social behavior, and while emphasizing the increasing importance of the body as the central issue in discussing patients and the management of the process of dying, he describes methods that show how the relative social attributes of the person cease to exist in the way specialists interact with patients(Sudnow, 1967).

Having no social situation

Social death is a lot more commonplace when older adults and patients who are taken from their homes and placed in medical facilities or nursing homes. Extensive studies clearly demonstrate that older adults are worried about losing their social contacts and the absence of their family(Steele et al., 2015; H. Sweeting & Gilhooly, 1997). Social neglect usually becomes apparent when a chronically-ill older adult is abandoned by the caregivers and medical personnel, such that the doctors and nurses make less effort to establish a social rapport with the patient and merely provide medical services to him as robots(Bramstedt, 2018; Dageid & Duckert, 2008). Moreover, in most cases, these people are given the lowest priority for receiving medical services and have no place in the society for the allocation of resources and support.

Studies on mortality have examined the effects of having no roles, social identity, capital and social network as well as social deprivation, the loss of civil privileges, the loss of financial capital, and the lack of access to resources, which are among the factors related to societal functions affecting the patients' social death(Caswell & O'Connor, 2015; Králová, 2015). The lack of social identity and social status make a person appear incompetent to others. Paired with poor socioeconomic status, these features lead to the individual's rejection from the society(Wesselmann & Williams, 2017). All these conditions occur simultaneously and encompass several dimensions and may lead to the person's psychological and social death.

The lack of interaction with people with chronic diseases such as dementia is an age-old problem(H. Sweeting & Gilhooly, 1997). Influenced by certain social and personal beliefs, people who deal with these patients may ignore their rights as citizens. These conditions can thus also be among the antecedents of social death.

Consequences of social death in patients

Consequences include incidents and events that accur as the results and outcomes of a concept(Walker & Avant, 2005). Few studies are available about the effect of social death on the patients themselves and their families, specialists, health care institutions and the society(Borgstrom, 2015; Králová, 2015; Wesselmann & Williams, 2017). Consequences of social death was presented in below.

Mankind's perception of social death is multidimensional and may have consequences such as deprivation of belonging to the society, financial vulnerability, removed/weakened legal support, stigma, and the loss of social identity(Borgstrom, 2015; Králová, 2015). Therefore, one of the most important consequences of social death is the destruction of the social roles and relations of the person or group. In this respect, some studies have assessed the quality of death and life or the quality of end-of-life care or care during illness(Borgstrom, 2015; Isaacson & Minton, 2018). The patient's satisfaction with his psychological and social conditions following a physical crisis can be the main approach to the assessment of the various aspects of the process of social death in patients.

The social death of a patient may have other aspects of care related to emotional support during dying and after death for his/her family(Králová, 2015). A comatose patient or a patient with another advanced disease is no longer recognized as a socially active person (i.e. a person who is socially active or present in the society or community). Accordingly, it is possible that relatives may consider him as someone who is ready to die(Brannelly, 2011). In the West, a “bad death” due to premature social death is the fate of many patients, older adults or people admitted to nursing homes(Caswell & O'Connor, 2015).

Seal's theory of cultural estrangement (1998) refers to the fact that we enter the world with a physical body, which becomes social over time, and at the end of life, social roles disappear and only the body remains, which requires food and water. In other words, older adults today die not just once, but several times(Seale, 1998). In old age or with illness, social relations and social identity are disrupted, the body withers away and the person is not able to engage in social interactions. With the body perishing, factors such as privacy, social participation, independence, and decision-making are endangered(Wesselmann & Williams, 2017). Thus, physical ailments cause social death, and social death may lead to disgraceful death (dying with no social character and identity)(Králová, 2015).

Regarding the conditions of patients in mental hospitals, Goffman notes the prolonged hospitalizations by which the patient is sent to institutions and hospitalized there. This process is obtained through a constant de-culturalization process in which a person is not only eliminated from his natural social habitat, but also loses his social role and is still kept in the humiliating environment of the institution, where all the main components of his personal identity are lost and he inevitably is converted into a “nobody”(Goffman, 1961). A newcomer to the institution has a certain perception and understanding of himself as a result of the stable social system he has had back home. Upon arrival, he is at once deprived of these supports, and then, he begins to feel humiliated, degraded, and disrespected. In addition, a person admitted to these institutions gets stigmatized(Králová & Walter, 2018; Wesselmann & Williams, 2017).

An example related to the concept

The 75-year-old father of a family who has an underlying disease is transferred to a nursing home, where the only evidence of his existence includes monthly bills and old photos, and family members do not contact him and have fully abandoned him and only get to know how their father is when they pay his nursing home bills. This patient's paternal role has been taken away from him and has not been replaced by any other role. He does not interact with anybody in the nursing home and only sees his caregiver every day. In view of his family members, this patient is socially dead, and this perception may lead to his self-perceived social death as well. These conditions may also accelerate his psychological and physical death.

The ability to recognize and connect with others is among the most important factors determining whether social death happens or not. With the involvement of caregivers and the family, patients can stay socially alive, which can somewhat abate the difficulties of the unwanted condition in which they live.

For example, the husband of a woman in a coma with extensive brain trauma is unable to treat her as if she is socially dead and has not abandoned her; rather, he constantly talks and communicates with her, and believes that his wife still exists and has a social status. Nevertheless, if the relatives and family members fail to show their love for the patient, and instead of providing care and support, envision them as lifeless objects and merely seek to meet their basic needs, both the family and the patient will gradually become aware of their patient's social death.

In another example, Mr. Nicole, who takes care of his wife with serious spinal cord injury, says:

Some people consider living with disabled patients as living with a moving corpse, since they do not do or say anything, and just sit, eat, and sleep; they are truly like a big baby. But I can't neglect my wife, and I have to look after her and meet her basic needs. I have to feed her, put diapers on her and ensure she's comfortable. But it's not like I could sit next to her, talk to her, and try to make her laugh, because that's beyond me. My wife has no reflexes, and can't have any social activities or interactions. She makes no eye contact with anyone herself, as if she has accepted that she no longer has any place or role among us.

Discussion

Applying Rodger's model provided a systematic approach for identifying and clarifying the concept of social death in patients. This concept has been liberally used in both interdisciplinary and intra-disciplinary fields of science, but there have often been ethical barriers and practical challenges for its use in empirical research. Hence, the conceptual framework of social death still requires further studies in different patients.

The results of various studies indicate that the concept of social death has changed over time, so that a distinction can be made between the way social death is currently defined by the palliative care movement and by the right to die movement(Borgstrom, 2017; Wesselmann & Williams, 2017). Moreover, this concept has different definitions among sociologists and medical scientists. Therefore, following a systematic review of different studies, Jana Králová (2015) provided definitions from various perspectives. She has also compared the conceptual framework of social death with the conceptual framework of health and stated that the concept of social death contradicts the concept of health and requires more comprehensive research among patients(Králová, 2015).

Recognizing social death as opposed to health creates a challenge for which there is no conceptual framework of assessment and comparison. In addition, there is a theoretical and experimental need for a criterion to limit and determine the concepts of health, the health factors that are at risk and social death. Although obtaining an accurate theory means that social death should be limited to critical conditions. As Sudnow (1967) has pointed out, the aimless and vague use of a term related to any social abuse is mistaken(Sudnow, 1967). Yet, it must not be overlooked that Gordon (2011) believes that social death is “something that can be and must be eliminated”(Gordon, 2011).

The antecedents and consequences of social death determined in this analysis provide the applications needed for further research. For instance, with a view to the patient, organizational structure and family support factors, studies can identify the predictors of social death, and by identifying the antecedent factors, intervention programs can be designed to control these factors. Further studies are highly necessary for identifying the consequences of social death in patients, families and organizations and also planning the prevention of adverse outcomes.

The empirical studies conducted on social death are problematic for a variety of reasons, including the physical and social unavailability of the deceased in social terms, social concerns about the health of the deceased and also the health of the researchers, and the risk of losing other possible theories, since such research should be confined to one scientific region where the deceased exists socially(Králová, 2015). A theoretical study on the concept of social death in patients should be provided for each of these factors.

The present study used an evolutionary approach for investigating the term ‘social death’ in patients in different articles, and the results obtained indicate that social death is a multidimensional phenomenon and its conceptual framework cannot be accurately determined and demarcated. Nonetheless, to maintain the theoretical consistency of the study, the concept of social death in patients was taken to refer only to the worst conditions, in which the majority or all of the attributes of holistic health were severely at risk or lost. In general, the main attributes of social death in patients can also be considered to include the loss of social identity, social withdrawal (the lack of social relations), and the deficiencies related to the body's inefficiencies and physical disintegration following different illnesses.

Steel et al. (2015) argued that rejection as a result of chronic illness increases death ideations and social isolation(Steele et al., 2015). According to some researchers, a person's hospitalization is a type of “social burial”(Borgstrom, 2015; H. Sweeting & Gilhooly, 1997). In the course of certain illnesses and as the patient's physical conditions deteriorate, they may lose different aspects of their character and identity as well, which in a way qualify them for death. In other words, the patient may die socially and enter a personality-less territory before his physical death(Králová, 2015). Some researchers have recognized dementia as an obvious example of social death. They believe that those who suffer from dementia lose their personality and character as a result of their condition. Some societies even take old age synonymous with a “blackhole”(Brannelly, 2011; H. Sweeting & Gilhooly, 1997; H. N. Sweeting, 1991). Yet, Gilleard and Higgs (2015) have provided a contrary reasoning. In their view, these people can remain socially alive, particularly if their caregivers have an active participation in proper caregiving and support(Gilleard & Higgs, 2015). By these efforts, the hardships of the unwanted conditions in which the patient lives can be somewhat mitigated.

Kalish also described the death of older adults as the least disruptive factor in any society, since they have no status in the society and are not valued members of it(Kalish, 1968). Therefore, older patients are the most vulnerable group to social death and are perceived to belong completely to the past and have a negligible share of the present and future. From the perspective of some societies, they have very little to live for(Králová, 2015). In addition, occasionally, old age and chronic diseases have been associated with a predictable process of grief(Brannelly, 2011). Fulton also points out that family and children may have already anticipated the death of their old and sick parents for years. He argues that predicting death may facilitate the preparation and anticipation of grief through behavioral and emotional reactions(Fulton & Gottesman, 1980). Some families and societies isolate sick patients and older adults in their homes or hospitals and nursing homes as if they are already biologically dead, although they may still live for several years to come(Borgstrom, 2015). Such instances occur very often in today's industrial world, since these people are often out of sight and mainly out of mind and are unable to interact with the normal outside social world(Králová & Walter, 2018). Therefore, issues such as the greater possibility of sudden death, retirement, physical isolation, and processes of predicted grief in the relatives of the old and sick people may be regarded as factors increasing the likelihood of reaching certain degrees of social death in spite of the continuation of physical life.

A study conducted by Valeria Hornska (2018) in Slovakia investigated social death in 43 older adults in a nursing home and reported their social isolation following hospitalization. Moreover, social death has been reported in these people mostly as fear of dying alone in an environment other than their own home(Horanska & Lizakova, 2018). Older adults' social death usually happens as a consequence of a serious event in life, such as losing vision, mobility constraints and chronic illness, the loss of one's partner in life, and being in an unfamiliar environment, and if left unattended, their social death will continue until biological death also takes place(Bradbury, 2012; Králová & Walter, 2018). As a serious event in life, social death is often associated with a dramatic decline in the quality of life, and it is as if one has resigned from living and is awaiting death.

Social death is associated with a rise in mortality rates, including suicidal ideations and suicide attempts. In addition to the homeless, social death has also been reported in many other groups, such as disabled patients, people with dementia, patients with low levels of consciousness, patients with facial deformities, massacre victims, patients with severe burns, and people with HIV(Bramstedt, 2018; Brannelly, 2011; Dageid and Duckert, 2008, Hale et al., 2013). There is also a relationship between social death in patients and requests for euthanasia, which requires separate studies. Patients’ reasons for requesting euthanasia mainly include fear of the unknown, fear of death, fear of losing self-esteem, fear of missing life, fear of loneliness, and feeling hurt by the family and environment, and intolerable pain. Reportedly, the biggest reason for requesting euthanasia is the indifference and disrespect toward the individual and his persona, just as a lack of identity and personality are also observed in social death situations, since these people also feel unworthy of living(Borgstrom, 2015; Králová & Walter, 2018).

One of the limitations of the present study was the limited number of studies conducted on social death in patients due to the ethical barriers and practical challenges of conducting experimental studies on this subject. Therefore, some aspects of this concept may have not been addressed in the evolutionary process taken up in the present study. Therefore, conducting in-depth qualitative studies to further develop this concept are recommended. Moreover, since only English and Persian articles were reviewed here, relevant articles in other languages may have been neglected. Overall, the present study was an attempt at initiating the analysis and development of the concept of social death in patients, but given the small number of articles on the subject, we recommend that descriptive, experimental, and qualitative studies be conducted in full compliance with the ethical principles of research to investigate the concept of social death in patients with various diseases and in different conditions.

Conclusion

Identifying the attributes, antecedents and consequences of the concept of social death in patients can lead to the discovery of the status, importance, and application of this concept in health studies and contribute to the development of an appropriate model and theory for social death in patients by clarifying this concept. Moreover, the review of literature showed that social death may occur over time in chronic patients. Therefore, its prevention is very important and requires accounting for many factors, including the conditions of the patients and their families, the qualities of different members of health care teams and social circumstances. The proper understanding of social death in patients not only determines the role and importance of care in the process of incidence of this phenomenon, but also paves the way for designing an evidence-based care program for its prevention and control. Also, this knowledge and awareness would help nurses to pay attention to patients' experiences, problems and social issues in providing comprehensive care.

Ethics approval

This research project has been approved by a research ethics committee of the Tehran University of Medical Science (TUMS) (Number: IR.TUMS.FNM.REC.1398.217). This article is part of the first author's PhD Thesis.

Consent for publication

We do not use any personal information in this publication.