Abstract
Ecuador, located in South America, has a population of 16 million people. According to the National Institution of Statistics in Ecuador, every year 8 out of a 1000 individuals die due to various causes. Palliative care and hospice are relatively new concepts for the Ecuadorian society. In Ecuador people usually die at home, in hospitals, or in nursing homes. In 2012, the first Ecuadorian hospice was created. According to symbolic interactionism theory, research needs to study participants’ world in order to understand the dynamic nature of human behavior. Symbolic interactionism proposes that human beings cannot be understood without the context of their interactions. Through an ethnomethodological approach, the following research aims to understand the way that individuals understand and describe death while in the local hospice in Ecuador. Results emerge from the introspection of real stories, field notes, participant observation, and informal conversations at the hospice. Based on a thematic analysis, the following study presents major themes that emphasize the dynamic process of creating meaning of death.
“A patient just arrived,” nurse Linda talks to me while I reach for a small green volunteer vest. Linda trembles.
“Follow me,” she says while grabbing my hand. My hands are shaking; I wonder if I should wear gloves. We walk into the room and there is Mr. Raul. He lies on a bed with white sheets. His legs are uncovered revealing some bruises and dark spots caused by his paralysis. Swollen hands with long yellow fingernails lay on top of the white sheets. The small “kippah” on top of his head hides his hair loss. His grey pajama shirt has a six-pointed star known as the Star of David. As Linda and I walk in the room, his wife hangs a “menorah” on the wall, emblem of the State of Israel. Mr. Raul stares at me while I come closer. One of his eyes is shut and his mouth twists to the right. He whispers something as I get closer to him. I want to fix his pillow; his head is hanging and his neck has no control over the situation.
“Let’s pray together,” a voice interrupts the scene. A man walks in the room with white hair, pointy nose, pale skin, and blue eyes. The light coming through the window reflects on a silver cross hanging at his chest. I can’t help but to gaze at the shinny symbol.
“Yes, Father please pray,” Linda begs.
“Dear Jesus, we lift up this soul to you. Embrace him in your presence,” the priest says.
“Amen, amen,” Linda repeats. Mr. Raul stares at me intensely.
Ecuador, located in Latin America, has a population of 16 million people. According to the National Institute of Statistics and Census (2013), during the year 2013, 64 thousand people died due to differing circumstances. In the South American country, the most common cause of death is related to heart and pulmonary diseases (INEC, 2013). Ecuador, however, is still developing a specific public policy in order to promote quality of care by the end of life. Palliative care and hospice are relatively new concepts for the Ecuadorian society. People usually die at home, hospitals, or nursing homes. In 2012, the first Ecuadorian hospice was created. With the help of several nonprofit organizations and volunteers, hospice was introduced as a place “where people can find comfort and support from a community that aims to walk with you until the end” (Redaelli, 2012, p. 139).
The following research aims to understand how Ecuadorians understand and describe the dying process in this culturally new and unknown scenario. Through an ethnomethodological approach, the previous narrative represents the daily interactions taken place at the local hospice where this research took place. A total of 105 people participated on daily interactions, conversations, and field notes. Doctors, nurses, priests, family members, psychologists, and patients were part of this study. Narratives were combined in order to keep confidentiality among participants and to get a deeper understanding of the particular interactions within hospice.
Theoretical Framework
Symbolic Interactionism
Symbolic interactionism, an interpretative theory, focuses on the creation of meaning based on social behavior (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). This theory aims to understand human lived experiences and how knowledge is used and expressed through social practices (Benzies & Allen, 2001; Carlson, 2013). The basic tenets of symbolic interactionism were presented by Blumer (1969), they “emphasized the interpretative process in the construction of meaning based on the richness and variety of social experiences” (Benzies & Allen, 2001, p. 543). The main goal of research, therefore, is to study participants’ world in order to understand the dynamic nature of human behavior (Athens, 2009; Benzies & Allen, 2001; Blumer, 1969; Kuhn, 1964). It is through interactions that humans construct meaning and make sense of the world around them.
Symbolic interactionism proposes that human beings cannot be understood without the context of their interactions (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). Meaning is created in relation to what has been experienced (Reynolds, 2003). Meaning, therefore, emerges from social interactions. Scholars propose three core principles of symbolic interactionism: meaning, language, and thought (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008).
Meaning is described as what is understandable and meaningful to individuals (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003). Meaning is not given in the nature of things, but it emerges in an uninterrupted process (Reynolds, 2003; Smit & Fritz, 2008). Meaning is constantly changing. It is through social interactions that individuals shape symbolic meaning. Things without lived experiences do not have a particular meaning. It is through lived experiences that humans make sense of the things around them.
Language, on the other hand, is considered the medium for humans to negotiate meaning (Benzies & Allen, 2001). Scholars argue that humans are social beings. Their interpretative process, therefore, is based on the use of socially constructed objects or symbols such as verbal and nonverbal communication (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). People have the cognitive capacity to think reflectively. Therefore, they can develop the symbolic use of language and gestures for communication of meanings (Athens, 2009; Benzies & Allen, 2001; Blumer, 1969; Kuhn, 1964). It is through language that individuals communicate meaning and engage in social agreements in order to attach meaning to particular concepts.
Thought is “[the third core principle that] allows individuals to learn without directly encountering the things to be learned” (Benzies & Allen, 2001, p. 544). To understand and create meaning, individuals have to think and reflect on previously gained experiences (Carlson, 2013; Meltzer, 2003; Reynolds, 2003). This process is also known as the “mind” (Meltzer, 2003; Smit & Fritz, 2008), which allows individuals to analyze and evaluate their surroundings. Based on the lens of symbolic interactionism, meaning is produced and interpreted through the use of symbols in social interaction. Scholars refer to it as an “interplay” between society, the individual experience, and the interaction itself (Athens, 2009; Benzies & Allen, 2001; Blumer, 1969; Kuhn, 1964).
The development of the “self” takes place in a social context in interaction with others (Benzies & Allen, 2001; Carlson, 2013). “Others” can influence the way we understand ourselves and the way we behave. “Others” may transfer norms and attitudes representative of the existing culture (Benzies & Allen, 2001). Through our interaction with society, the “role” is formed by the rights and duties attached to any given social position (Benzies & Allen, 2001; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). The “role” gives others certain expectations of how a specific individual should behave.
All social acts are based on roles, attitudes, and significant speech. “Roles and attitudes” refer to acts that each participant performs in the larger social interaction and our willingness to perform (Athens, 2009; Mead, 1934). On the other hand, “significant speech” is described as the use of expressions or gestures in social interactions. These expressions are well known and understood by the individuals who participate in social interaction (Athens, 2009; Kuhn, 1964; Mead, 1934).
Symbolic interactionism argues that the main focus of research is on the nature of individual and collective social interaction (Athens, 2009; Benzies & Allen, 2001; Kuhn, 1964; Carlson, 2013; Mead, 1934; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). Therefore, this study introduces the point of view of individuals in a specific social group (Ecuadorian hospice staff, patients who are dying in this particular institution, family members, and volunteers) and their daily interactions. Through the lens of symbolic interactionism, this research provides a theoretical perspective for studying how individuals interpret death and how this process of interpretation influences their behavior (Athens, 2009; Benzies & Allen, 2001; Blumer, 1969; Kuhn, 1964). The following research question guides this study: RQ: How do individuals, in a local hospice in Ecuador, understand and describe death?
Methodology
Through thematic analysis, this study presents themes related to the way that individuals, in a local hospice in Ecuador, describe death. Through ethnographic method, the study provides a deeper understanding of the way that individuals make sense of “death” in their daily interactions and social roles. This study includes a total of 105 participants: health-care providers, nurses, patients, family members, friends, counselors, volunteers, spiritual leaders, and psychologists in the Ecuadorian hospice. Davis, Powell, and Lachlan (2012) define ethnography as the study of culture by the immersion in the field. This method includes data collection in a naturalistic environment, which is the hospice, and the daily interactions with people who are dying and the individuals involved in this process. Field notes, observation, and informal conversations constitute the data of this research.
The sampling for this study was purposive. The Ecuadorian hospice was chosen for two main reasons. First, it is the only hospice of its kind in the country and second, it is a place where individuals interact with death and dying on a daily basis. For the purpose of this study, I traveled to Ecuador and spent 3 months (close to 300 hours of interaction) collecting data and interacting as a volunteer/researcher in the facilities of the hospice. Based on an interpretivist approach, the stories emerging within the data guided the description of specific themes.
To guarantee reliability among the analysis, field notes and informal conversations were coded separately and then emerging themes were cross-coded. Based on peer reviews and other researchers looking at the data for credibility, the main final themes were inductively compared with the theory.
The variable was “death,” which was conceptually defined as: “the termination of all biological functions that sustain a living organism” (Suriyaprakash & Geetha, 2014, p.116). The variable was operationalized as within field notes and informal conversations within the hospice, whenever individuals talked or referred to their experiences with death or dying.
All data were coded line-by-line and through thematic analysis. Emerging themes were identified in a nominal-level measurement. As Davis et al. (2012) describe it, a nominal measurement refers to unordered categories that help us classify the variable into qualitative unique and different categories. The categories do not show any kind of order or degree of intensity (Davis et al., 2012). All categories represent themes of equal interest. All data was coded and analyzed through thematic analysis.
Analysis
Six major themes were identified in terms of how individuals, in the Ecuadorian hospice, describe and understand death. Themes were inductively compared and analyzed. In the following section, each theme is described for further analysis.
Death: A Spiritual Journey
In this particular study, death was described through an overarching theme as a spiritual journey supported by different expressions of death as an ascending process. The analysis of data revealed the understanding of the religious leader as the one and only who can lift up the deceased and honor death. Individuals described death as a ritual of consecration. Family Member 1: I like to think of it as a journey, you know. A journey from life to a different reality, a different destination. Health-Care Provider 1: We celebrate life in a different way, it’s something out of the ordinary. Too holy to describe, there are no words for it. Now, let’s keep working […]. Spiritual Leader 1: We all need guidance so that we can walk towards death, you know in order to embrace it. Like a child who needs someone to hold his/her hand, you know. We are just God’s children. Family Member 2: The Father (the priest) is the one who helps people in their journey, he walks with the patient. I don’t think anyone can do it without a priest […]. Family Member 3: You know, hospice started in a church. I mean, there were people dying and other believers took care of them. Hospice is responsible for spiritual care more than just doctors and medicine.
Death: A Communal Experience
The second major theme that emerged from the data was death as a communal/shared experience. Death was described as a collective experience in which doctors, nurses, psychologists, spiritual leaders, families, and friends need to get involved. Spiritual Leader 2: We should not die alone! I always tell them (the nurses): “Never leave the patient alone!” If someone is alone it means there is something wrong, you know like lack of commitment. Nurse 1: We all have to collaborate. Hospice needs to feel like “home,” like a family. Family Member 1: Death brings people together, you know. We connect with others because they (psychologists) always invite us to therapy, group activities, counseling sessions, and things like that. Volunteer 1: Death brings us together. We get to know each other deeply. Spiritual Leader 1: We do not accept patients who are going to be alone […]. The family has to be here all the time […]. Patients need someone all the time, we have to take care of them.
Death: Identity Construction
The third most important theme was identity construction. Individuals at this particular Ecuadorian hospice, referred to themselves and the deceased as members of a family: the family of God. Individuals did not only make sense of their own experience facing death, but they identified with others. Their communal experience with death brought them together, and their religion seemed a main aspect of their identity construction process. Nurse 2: We are a family, you know. Just a big family of believers in God, Catholics who are united. Volunteer 3: We all work together as a family. We embrace every new member as part of the family […]. We remind them that we are God’s children. Spiritual Leader 1: We are a division inside the Catholic church, “Los Camilianos.” We believe in Saint Camilo and we belong to the family that takes care of the dying.
Death: Is Not the End
The fourth emerging theme was related to the idea that death is not the end. Individuals referred to death in terms of an ongoing existence. The concept of continuity supported this theme. We can continue existing in a different form, in a different condition, and in a different reality. Psychologist 1: We talk about life that is changing. Death is not the end, you know. There is hope for life, a life that goes on after death. It is just a transition. Nurse 3: There is hope. We don’t just die! There is a better future for everyone. Spiritual Leader 2: I usually tell them (health care providers) that this is a place of “life” not “death” (talking about the hospice). We cannot mention the “d” word, you know. Nurse 1: We do not talk about death with the patients, we talk about life. I chose my words cautiously.
Death: Demands to be Respected and Revered
The fifth theme that emerged from the data was the need to honor and respect death. Related to a spiritual point of view, individuals referred to death as a sacred ritual in which a transition takes place and therefore, death demands to be revered and respected. Family Member 3: It is a holy moment, you know. When someone dies, God is opening the doors of heaven and we need to honor that moment. Health-Care Provider 4: Respect for death makes us respect others. Only if we respect death we can respect the people who are dying and because of that, we should also respect this place (the hospice). Spiritual Leader 3: Death needs to be respected. It is a spiritual transcendence and we cannot play with something like that.
A Good Death
Finally, the sixth theme was related to the understanding of a good death. Participants referred to it in terms of companionship. Volunteer 2: You don’t want to be alone. Never alone, you know. If you want to die well you always need to have someone there with you. We show that we care by being there. That’s what matters. Nurse 2: You don’t want to talk about money, what’s the point of it when you are dying? Death doesn’t have a price. You want to have good final conversations about quality of life, not quality of death. What an ugly word! Family Member 4: You can’t leave without the communion and blessings from the Father, you know. The holy sacraments are important and the Father should give you his last blessing too. Then, you can leave in peace.
Discussion
Based on this study, we can see how individuals, in the Ecuadorian hospice, understand and describe death. The data revealed six major themes that described death as a spiritual journey, a communal experience, a process of identity construction, not the end but an ongoing existence, a process that demands respect and reverence, and certain qualifications that can make death a “good death.”
Through the theoretical lens of symbolic interactionism, this study presents a particular understanding of death and human social behavior based on three main components (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). First, as stated by symbolic interactionism, people act according to the meaning that things have for them (Benzies & Allen, 2001; Carlson, 2013). In this particular case, we can see how individuals behave according to their own understanding of death. They honor and revere death because they describe it as a spiritual journey and a sacred experience in which the spiritual leader has to take the lead. The process of dying is elevated to a spiritual ritual in which the health-care provider does not have the last word. The dynamics of interaction shift and the spiritual leader, in this particular case the priest, takes a higher role. The interaction with the living and the dead reveals a hierarchical order in which spirituality takes the lead. The entire performance shows the understanding of death.
Second, according to symbolic interactionism, meaning arises in the process of interaction among individuals. Meaning changes constantly and it becomes a dynamic process (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). Therefore, meaning emerges from our interactions and the way other individuals act around us. In this study, we can see how interactions promote social agreements about the meaning of death. Death is constructed in the hospice by the interaction with others. With the lack of a spiritual leader, death may take a different meaning; but because there is a spiritual figure, individuals elevate death to a collective experience where the priest guides the encounter. No matter what role individuals play inside the Ecuadorian hospice (nurse, volunteer, family member, etc.), they all have agreed that death is a communal/spiritual experience. Death involves every member of the hospice’s community and it is expressed through companionship. Death brings people together. In this study, death should not be faced alone. Being with others and dying in the presence of the community are required in order to achieve a good death.
Third, from a symbolic interactionism point of view, meanings are assigned and modified through an interpretive process that changes and redefines itself constantly. Individuals’ choices are severely restricted by social and cultural norms (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). In this particular case, we can see how the meaning of death sets the boundaries for interactions. Individuals mentioned that they do not use the word death in their conversations with patients. This kind of attitude creates a cultural environment in which certain behaviors are allowed or restricted. Interactions are limited by the way individuals make sense of death. This particular understanding is reflected by avoidance and rejection of death itself in the presence of patients. Health-care providers do not talk about death with their patients, they talk about life.
By selecting and interpreting the world around us, individuals shape their behavior (Reynolds, 2003; Smit & Fritz, 2008). In the hospice, individuals interpret death as a sacred and spiritual journey that needs to be respected. Using the wrong words or having the wrong conversations may be understood as disrespectful acts. Death requires respect and hope, hope to understand the holy and the sacred, and hope to expect an ongoing existence. Language is used in order to negotiate meaning (Benzies & Allen, 2001; Carlson, 2013). Individuals avoided talking about death with patients and some referred to it as inappropriate. Therefore, individuals used the word life instead of death during their interactions with the dying. Language was used as a tool in order to construct and negotiate meaning. This particular aspect could guide further analysis about specific conversations that patients are allowed or not to have with their health-care providers.
From a symbolic interactionism standpoint, individual interpretation of reality is related to a specific social context (Benzies & Allen, 2001; Carlson, 2013; Meltzer, 2003; Reynolds, 2003; Smit & Fritz, 2008). We should not forget that the hospice in this study is located in Ecuador and therefore, the social-cultural environment also influences the way that individuals make sense of death. The main goal of research relies on the nature of individual and collective social interactions (Athens, 2009; Benzies & Allen, 2001; Blumer, 1969; Kuhn, 1964). It is important to understand death from the point of view of a particular individual and his or her social groups. We need to consider that people in Ecuador are primarily Roman Catholic. About 89.60% of the Ecuadorian population describe themselves as Roman Catholic (Ecuador, 2014). The role of religion, in this particular hospice, may influence the way that people understand death.
According to symbolic interactionism, the development of the self takes place in a social context in interaction with others. The self evolves from interaction between individuals in the specific group one wants to become part of (Benzies & Allen, 2001; Carlson, 2013). In this study, the self was constructed through the identity of a religious group: Catholics. Individuals reframed their identity as believers of God and identified themselves with a specific group of Catholics: Los Camilianos (believers of Saint Camilo). The role, described by symbolic interactionism, is formed by the rights and duties attached to any given social position (Benzies & Allen, 2001; Carlson, 2013). In this hospice, we can see how individuals are given certain expectations of how they should behave. For example, the Father is expected to be the one who lifts up the soul of the deceased while nurses and doctors become spectators of a holy ritual. Others influence the way we understand ourselves and the way we behave.
Finally, symbolic interactionism argues that the main focus of research is on the nature of individual and collective social interaction (Athens, 2009; Benzies & Allen, 2001; Blumer, 1969; Carlson, 2013; Meltzer, 2003). Through this study, therefore, we can see individuals in their daily encounters with death and how their interactions shape meaning. Death was described as an event that affects the community and promotes the need for affiliation. We do not die alone, we die in a community, as members of a social group, and our death affects the group’s dynamics.
Limitations
This study presented several limitations. The first one was related to the sampling. Although the hospice chosen for this study was the only one of its kind in Ecuador, it does not mean that other institutions do not face death on a daily basis. Actually, many hospitals and nursing homes have recently introduced palliative care units and many Ecuadorians die in these types of institutions. Also, the hospice in this study was relatively new in the country (less than 3 years). Staff and volunteers were still in training, and the main economic contributor was a Catholic institution. The hospice survives with the generous contributions of the “San Camiliano’s Catholic division.” Future research could include more institutions in order to see and compare the way that death is understood in different cultural, social, and organizational environments.
The second limitation was related to the method of research. This study was based on ethnographic methods (field notes, informal conversations, and observation) in a natural setting. Research was done in vivo with doctors, nurses, spiritual leaders, psychologists, volunteers, family members, and patients interacting. However, it did not include self reports from specific groups. For further research, formal interviews and focus groups could be included in order to hear the voices of all participants, as the meaning of death may differ from smaller social groups inside the hospice. For example, doctors may interact in a different way than volunteers or spiritual counselors. Inside every institution, there are mini-social groups that also need to be considered.
Conclusion
This study brings into consideration the different ways that individuals understand and interact with death. In a country in which hospice is a new concept, this study introduces ways in which Ecuadorians may make sense of death. Although this research does not aim to generalize the findings presented here, this kind of study could help the promotion of quality of care by the end of life and facilitate relevant information in order to train health-care providers, volunteers, and general staff at Ecuadorian hospice. Also, by introducing research at a hospice in Ecuador, this study provides an international perspective about death and how social and cultural contexts influence our understandings and behaviors. For future research, other Ecuadorian institutions should be studied in order to analyze the meaning of death in specific contexts. Silence. I walk into the Hospice and everything is quiet. The white walls stare at me while I step into the chapel. “Good morning Father,” my voice shatters the silence. Wooden empty benches cover the place and in front of them a huge cross hangs from the sealing. A large table holds the symbols of the Eucharist to every guest. “We believe in the spiritual support by the end of life, but we embrace different religions in here,” the priest says while he faces a statue of Virgin Mary. We remain silence for a minute and then we keep walking. Now, we are on the second floor. Empty beds, empty rooms, empty halls. I can hear the echo of our footsteps as we look around the building. “Our main goal is not to be a hospital or any institution. We wanna be like a family and make our patients feel like home,” he whispers. “A home without people is just an empty house,” my mind interrupts the conversation and we keep walking. We walk towards Mr. Raul’s room. The door is closed and I wonder. No sound inside the room so I slowly open the door. The wooden door creaks, revealing an empty room. Curtains close, empty bed, new sheets, no signs of Mr. Raul. No more Jewish symbols; only a clean empty room. I stare at the room for a while. I close the door and leave. “When did it happen?” My voice comes out in a higher pitch than what I expected. “What do you mean? What happened?” The priest says. “Well … Mr. Raul is gone, so what happened?” I insist and cross my arms unexpectedly. “I don’t like talking about these things, ask for an appointment with the psychologist,” he says and leaves. Step, silence, step, silence.
Footnotes
Author’s Note
This research was submitted by Maria Jose Armendariz Dyer, Communication Studies Department at University of North Carolina at Charlotte. Now Maria Jose Armendariz Dyer is at the Communication Faculty and Languages Department, Universidad Internacional del Ecuador. This article was presented on March 14th, at the SECOLAS 2015 Conference, Southeastern Council of Latin American Studies.
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) received no financial support for the research, authorship, and/or publication of this article.
