Abstract
Drawing upon ethnographic research developed in two Portuguese palliative care units, this article seeks to analyse end-of-life practices, namely how they are perceived and negotiated among the various actors involved. Over a period of 10 months in these units participant observation and in-depth interviews were conducted with 20 family members of patients with a life-threatening illness and 20 health care professionals. Against this backdrop, aspects related to the concept of a ‘good death’, the management of pain and suffering, and the loss of consciousness were explored. The main findings pointed to an appreciation, both by professionals and family members, of an holistic intervention that guarantees the patient’s physical, psychological, social, and spiritual well-being, where the relief of physical symptoms is of particular importance and palliative sedation emerges as a mechanism that allows the patient to achieve a ‘good death’ (without suffering and in a peaceful way).
Introduction
The philosophy and practice of the modern hospice and palliative care movement advocates that caring for patients with a life-threatening illness necessarily involves respectful and compassionate care (Clark and Seymour, 1999). This movement has sought to humanize the dying process by recognizing that suffering is far broader than ‘physical matters of sensation’ (Clark, 1999: 734). At the root of this belief is the development of concepts such as ‘total pain’. The term has been used to characterize the multidimensional nature of pain in patients with a life-threatening illness by integrating the physical, psychological, social, and spiritual elements (Clark, 1999; Krawczyk et al., 2018). Thus, for a comprehensive and effective pain treatment, a complete assessment of these domains is necessary (Mehta and Chan, 2008). Indeed, palliative care professionals are trained to believe that through person-centred and holistic care they will be able to address the various existential needs of their patients (McNamara et al., 1994). Thus, meeting the definition advanced by the World Health Organization (WHO), in 2002, where it is mentioned that palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
However, the ideal of a ‘dignified death’ – also referred to as a ‘good death’ – proposed by the advocates of the modern hospice and palliative care movement has been questioned. A ‘good death’ has been a key concept since the development of the movement and the establishment of palliative care as a medical and nursing speciality. In general, the notion of a ‘good death’ may be used to describe the historical and philosophical influences which have converged into the modern ideology of hospice and palliative care. Indeed, it was a way to reject the institutionalization and medicalization of patients with a life-threatening illness (Clark and Seymour, 1999; Hart et al., 1998). In this light, a ‘good death’ involves a pain free death; death at home, surrounded by family and friends; death as personal growth; death according to personal experience; an aware death, in which personal conflicts and unfinished business are resolved; and open acknowledgment of the imminence of death. (Clark, 2002: 907)
Critics of hospice and palliative care also suggest that the ‘good death’ concept ends up constructing a ‘socially approved form of dying and death’ (Hart et al., 1998: 72; Zimmermann, 2007). This notion does not appear to recognize individual diversity, being too rigid, and thereby might not be suitable for all dying people (Howarth, 2007). However, in discussing a ‘good death’, it should be taken into account that it is not fixed since it changes according to several factors such as time, situation, role, and experience (Graven and Timm, 2019; Kehl, 2006). The ‘good death’ has instead been described within the hospice and palliative context as an ideal situation for those involved in the dying process. While hospice and palliative care staff appear to be conscious of the factors that inhibit ‘good deaths’, their stories tend to demonstrate a high level of idealization (McNamara et al., 1994). In this regard, the role played by nurses in providing a ‘good death’ is particularly interesting because of the centrality they assume in mediating various relationships (with patients, families, and other health care professionals). The role that they generally assume as care coordinators reflects the importance they have in palliative care practice (Glasdam et al., 2020; Hernández-Marrero et al., 2019; Sekse et al., 2018).
Hospice and palliative care have also been criticized for prioritizing the medical response to physical suffering in the face of the complex bodily realities of dying. This medical response appears to offer a more certain response to the bodily realities of dying than the social, psychological, and spiritual counselling which is at the heart of the notion of ‘total pain’ (McNamara, 2004). Lawton (2000), for instance, offered a powerful critique to hospice and palliative care by acknowledging that suffering has been exclusively seen as the experience of physical pain. By highlighting the impact that the bodily realities of dying has upon a patient’s sense of self, Lawton questioned if it is in fact possible to ‘die with dignity’ within hospice and palliative care contexts (p. 179). In her work, Lawton (2000) had been particularly critical of the use of palliative sedation within the hospice setting, arguing that it promotes a form of social death for the patient. Within social sciences literature, the term social death refers to when an individual is treated as dead although being biologically alive (Sudnow, 1967). As will be outlined in this study, even though the use of palliative sedation is not a consensual practice, leading to several dilemmas (Seale et al., 2015), it might bring certain benefits for patients with a life-threatening illness.
Overall, the voices of those involved in the care of patients with a life-threatening illness have not been sufficiently heard and thus there is a need to listen to these voices in order to understand if the psychological, social, and spiritual components of the supposedly person-centred holistic approach of palliative care (McNamara, 2004) are in fact being neglected. The aim of this article is to analyse end-of-life practices, namely how they are perceived and negotiated among the various actors involved in the dying process. We take as a point of departure the sociological point of view that death is a relational experience, where constant negotiations take place between the various agents involved in end-of-life care (Borgstrom et al., 2019).
Methods
The study
The data analysed within the current article are drawn from a broader study that intended to understand the bodily experiences of patients with a life-threatening illness in Portugal. This study was part of a PhD undertaken by the first author of the article. An ethnographic approach was developed in palliative care units to understand the impact that the process of bodily deterioration and decay had on the self and identity of patients with a life-threatening illness. Fieldwork was carried out during a period of 10 months in two palliative care units in the Lisbon area, Portugal. In-depth interviews were conducted with 20 family members of patients with a life-threatening illness (namely, cancer) and also with 20 health care professionals. In-depth interviews were complemented by participant observation, as this enabled a deeper understanding of the phenomenon under study to be obtained. These two techniques have been found to be the most suitable for conducting research on a sensitive topic, such as death and the dying process (Lawton, 2000; Liamputtong, 2007).
The sample
Twenty-eight family members were invited to participate in the study. Eight refused explaining that they felt emotionally tired and/or wanted to spend time with their loved ones. The 20 who agreed to participate were aged between 41 and 78 years. Wives were most significant, followed by daughters and husbands. Of the 21 professionals approached, 1 refused explaining that she was too busy to take part. These professionals were aged between 23 and 64 years and belonged to different professional categories (such as nursing, medicine, psychology, social work). In the broader study interviews were also conducted with 10 patients with a life-threatening illness. The findings presented here are, however, based on the accounts provided by family members and palliative care professionals. Asking patients with a life-threatening illness about the meaning and definition of a ‘good death’ seemed to us to be unethical as they were in a vulnerable position and this question could arouse in them problematic feelings. Moreover, by bringing to the fore such a question patients could become suspicious about their condition, and as discussed in a previous article most of them were not aware of their prognosis. Also, the majority of patients with a life-threatening illness in Portugal did not have sufficient knowledge about the meaning and significance of palliative care (Hilário, 2020).
Ethics
Ethical approval was granted by the Royal Holloway, University of London, the host institution of the main researcher at the time. There was no need to obtain ethical approval from Portuguese health authorities as fieldwork took place in two private health care units. Written informed consent was obtained from all the participants on the understanding that their participation in the study was voluntary, that they could end their participation at any time without consequences, and that their information would remain confidential.
Procedural aspects
As the study was for a PhD, data collection, coding, and analysis were conducted by the main author who was a PhD student at the time. The interviews followed a topic guide and lasted between 40 and 90 minutes. All interviews were recorded on a digital voice recorder after obtaining the participant’s permission. The interviews were transcribed verbatim in Portuguese and imported to Atlas ti5. The interview data collected were triangulated with the data collected from observations offering an in-depth understanding of the phenomena under study (Walshe et al., 2004). In addition, thick description demonstrated the richness of the data collected and helped to show that the accounts of the participants were reliable and internally valid (Payne and Williams, 2005). A constructivist approach was adopted and a thematic analysis as proposed by Braun and Clarke (2006) was developed. A preliminary list of themes was produced through an open coding procedure. Then, the themes were condensed. Finally, through a selective coding procedure the themes were reduced to the core topics presented in the findings section of this article: the ‘good death’, pain and physical suffering, and the loss of consciousness. Selected quotations translated into English will be used here to illustrate the findings.
Findings
In the first part of the findings section, we highlighted the meaning and definition of a ‘good death’ from the point of view of family members and palliative care professionals. The physical, psychological, social, and spiritual dimensions of the care given to those who were very ill and at the end-of-life were also discussed in the second part of the findings section. In the last part, we aimed to understand if palliative sedation was in fact used by palliative care staff to benefit patients, and the extent to which this practice enabled the provision of a ‘dignified death’.
The ‘good death’
A ‘good death’ was described by almost half of the family members as one without suffering. Their comments, when talking about a ‘good death’, were similar to those of the sister-in-law of a 78-year-old woman with ovarian cancer, when she was asked about what she thought might be a ‘good death’ for her loved one: With the least suffering possible. I think it is the only thing we can ask for. Health is only a miracle. So with the least suffering possible. (Angela, sister-in-law)
For some family members a ‘good death’ for their loved one was one in which they would die suddenly, as the following excerpt from the interview with the wife of a 66-year-old man with brain cancer shows: A sudden death. A death without knowing. A death without suffering. Is the one (death) that I wish for my husband. (Antonia, wife)
A few family members expressed the wish for their loved one to die while asleep. The son of an 85-year-old man put it this way: When my father is asleep. The candle reaches the end. He is asleep and then . . . (Aaron, son)
There were some parallels between the ‘good death’ definitions presented by family members and those presented by staff members. A death without suffering was also popular with a few members of staff. Indeed a few members of staff described a ‘good death’ as one in which the patient dies free from pain and without any apparent distress. They made comments similar to those of a physiotherapist, who also recognized the importance of saying goodbye to loved ones, and who stated that she believed that, so far, they had been able to provide a ‘good death’ to patients: A ‘good death’ is one in which the person dies free from pain. One in which the person dies without distress. One in which the person says goodbye to other people. I think this is very important. I think we have been able to provide this to people. (Chris, physiotherapist)
In addition to being without pain and any apparent distress, a few members of staff described a ‘good death’ as one which is accompanied by loved ones. For example, a nurse stated, A ‘good death’ for me is to be pain free. To be without uncontrolled symptoms. To be as peaceful as possible. To be surrounded by family. We have some patients that due to some circumstances die alone. I don’t think any of us would like to die alone. (Cecilia, nurse)
More than half of the palliative care staff described a ‘good death’ as one in which the patient dies in peace, calmly, and quietly. Their comments were akin to those of a spiritual and religious counsellor, who also acknowledged a sense of preparedness towards dying: Feel peaceful. Feel quiet. Feel calm. Feel ready. This is dying well. (Charlie, spiritual and religious counselor)
A ‘good death’ was also described by a few members of staff as one that the patient wants. A head nurse put it this way: A ‘good death’ is one where the person decided right up to the end what he wanted. Even if this means that the person will suffer until the end. A ‘good death’ for me is not only one in which the patient is pain free. It is the one that the patient wants. It is the one that he chose. (Charlotte, head nurse)
In fact, there seem to be several ‘requirements’ for a ‘good death’ to be achieved, where the management of pain and suffering of patients through the relief of symptoms stands out. The patients feeling comfortable, at peace and maintaining their dignity were aspects highlighted by family members and health care professionals. In addition, the patients being able to say goodbye to their loved ones and being with them in the final moments were also mentioned. The last quote presented in this section is also particularly interesting because it brings the will and agency of the patient to the debate around ‘good death’. The ideal of personal choice is in accord with the ‘good death’ model proposed by the founders of the modern hospice and palliative care movement (McNamara, 2004; Seymour et al., 2015), albeit this situation was complex within the end-of-life contexts analysed due to the fact that the majority of the patients did not knew about their impending death.
Pain and physical suffering
When asked about the importance they give to the management of pain and the control of symptoms more than half of family members indicated that this was a priority for them and one of the most important aspects of palliative care practice. They made comments akin to those of a son of an 85-year-old man with rectal cancer, who expressed his satisfaction with the competency of the members of the palliative care team and the increasing efforts developed by them to help his father and minimize his pain:
Is the control of pain and the management of symptoms something that you consider to be important?
It is very important! My father has many pains. The pain is terrible in this phase. I don’t know if you have heard of cases like this but the pain is terrible. Here they minimise this. They did not remove it completely . . . How can I say this? They put it [the pain] to sleep.
Do you think here they give some comfort to your father?
Yes indeed. They gave him comfort. The treatment here in terms of comfort from the pain is wonderful. My father is not alone here. When he is in pain he rings the bell. Obviously he is not alone. He rings the bell. The staff may not be available immediately because they are with another patient but they know what is going on. Here the staff are very competent. I have to mention this because it is true. The doctors, the nurses, the care workers are all great people. When they are available they come to my father and help him. They give him what they have to give. For my father the pain is terrible. When he is in pain he asks for everything, he even asks to go away [to die].
(Aaron, son)
This was even more magnified in the comment made by the husband of a 67-year-old woman with an occult tumour and bone metastases, who openly criticized the care given to his wife while she was at the hospital: It is as different as day and night. There [at the hospital] her arms were always shaking. Here they control it. They control her pain. Of course, sometimes she has some pain. They have to change her because she is in that position. But it is not the same thing as when she was there [at the hospital]. It is nothing like what happened there. I don’t want to criticize the hospital. Maybe here they are more specialized in this type of treatment, in people with these kinds of diseases. When I went to the hospital I was always anxious. Because I didn’t know how I would find her. I was always anxious. I feel peaceful here. Because I know I will find her more or less well. I know that the doctors and the nurses here will do their best to relieve her suffering. They will take care of her until she dies. (Albert, husband)
Also, more than half of the members of staff mentioned that the management of pain and symptom control was a top priority as they believed that without it, it was not possible to work on the other aspects of care. They made comments akin to those of a nurse: I think it’s crucial that pain is controlled so we can have another type of intervention. It’s like a pyramid. I don’t want to prioritize what is most important in palliative care but symptom control is very important. If the symptoms are not controlled and the patient is in pain, we cannot work on the psychological and social aspects. We cannot work with the family. Relationships can be compromised. We cannot work on the other aspects if the symptoms are not controlled. (Carl, nurse)
Our fieldwork observations revealed that the staff continually re-evaluated patients’ symptoms and when necessary took measures to control them. This was particularly evident when a patient’s death was close and certain symptoms such as breathlessness and delirium tended to escalate. In addition to pain control and symptom management, the staff were also likely to pay attention to other dimensions of care. Indeed, almost half of the members of staff stressed the importance of the psychological, social, and spiritual aspects of palliative care, as the following extract from an interview with a spiritual and religious counsellor suggests: Not only older people but also younger people are in profound suffering. It is the separation of family. It is the job they have lost. The life projects that they will not end. It is the question: what have I done to deserve this? Why has this happened to me? The feelings of guilt that they sometimes have because they have managed their life badly. People who smoked or drank a lot. They question: Am I here because I have indulged in this behaviour? We have to work on this. Then there are people who only see the bad things they have done in life. We have to help them to value all the good things that happened in their lives. (Capri, spiritual and religious counsellor)
A nurse put it more strongly by arguing that one of the things which differentiates palliative care from other medical specialties is the importance given to the psychological, social, and spiritual aspects: Palliative care has to go beyond the control of symptoms. It has to be concerned with all the psychological questions. With people’s suffering. With the family. The meaning that the person can give to this moment. How they can integrate this in their life. I think this is one of the best things about this kind of care. I don’t believe that symptom control happens in hospitals as it does here. They are very far from this type of care. Especially concerning the psychological questions. All the questions around death and life. Of people saying goodbye. This I have found only here. I haven’t found it anywhere else. I think this is the best aspect of this type of care. (Claire, nurse)
A few members of staff expressed a strong belief about the relationship between the physical and the psychological, social, and spiritual aspects of care as according to them one aspect inevitably influences the other and vice versa. They made comments similar to those of a head nurse: All the areas: the physical, psychological, spiritual; all these dimensions of the person need to have the same priority. Some dimensions are not more important than others. Because they all interact with each other. A person who is suffering spiritually is someone who will have more uncontrolled symptoms. The opposite is also true. A person who is in pain probably cannot have a good spiritual journey. I think one thing influences the other and vice versa. (Charlotte, head nurse)
The story recounted by a nurse about an 80-year-old woman with non-Hodgkin’s lymphoma who suffered from mutism (i.e. a psychiatric disorder in which a patient who is normally capable of speech is unable to speak) at the time of admission into the palliative care unit illustrated how the psychological support offered by the palliative care staff reduced patients’ suffering and improved their well-being: We have a lady here that when she was admitted into the unit was very prostrated. She was almost in a coma. From time to time she opened her eyes. Now she is using a wheelchair. She was bed-bound for so long that we couldn’t make her walk. But she now eats in the living room. She interacts with the patients. She eats by herself. She speaks with us. We were told at the time of her admission that the symptoms she was experiencing were not controlled. That she was dehydrated. But this did not explain why she suffered from mutism. This was voluntary. She was giving up. When she came to the unit we thought that she was going to die soon and at this moment this is not so. She gets up every day, she says what she wants to eat, she interacts, she has a good time. This was very much related to the psychological support we offered to her. We realised that her condition was due to her psychological state. I am not saying that she might not have been depressed but that several things could have been avoided if she had had the proper support previously. She is now not the same person as she was at the time of her admission. (Carla, nurse)
In addition, the story recounted by a spiritual and religious counsellor showed how the social support offered to patients by the palliative care staff might help to reduce their suffering: I remember that we once had a lady here whose daughter had a cognitive deficit. The lady also had a problem. She was extremely aggressive. However, after we talked with her, one day she told us, in her simplicity: I never thought that you would treat me so well, that you would speak to me. We had just talked to the lady as kindly as we talk to other people. ‘Please sit here with us’. We used language that she could understand. That kind of thing. And the fact that we sat with the patient and listened to her, heard her crying, and did not try to answer questions that often don’t have answers, and cried with her too, this helped her. (Capri, spiritual and religious counsellor)
Palliative care professionals seemed to prioritize the management of pain and physical symptoms. Nevertheless, this does not mean that the other aspects of care were neglected. Indeed, the findings of this study showed that the staff tried whenever possible to address the other dimensions of care – psychological, social, and spiritual – as they believed in an interaction between them and in doing so they appear to recognize the importance of the notion of ‘total pain’. However, the findings also suggested that sometimes it was not possible for the staff to attenuate patient’s physical symptoms and to address the psychological, social, and spiritual aspects. When that was the case, palliative sedation appeared to offer a certain relief for patient’s suffering.
The loss of consciousness
The use of palliative sedation was understood by several staff members as a practice primarily used for the benefit of patients who were very agitated and confused, and were in pain or who had uncontrolled symptoms, and then for the family, who were distressed due to the physical and emotional suffering experienced by their loved one’s impending potential death. For instance, a physiotherapist commented that although sedation may help families who feel anxious due to a patient’s agitation and/or confusion it is not primarily used with this intention, but instead to help the patient to be calmer and to die in his or her own time without distress: I think sedation is beneficial to a patient when he/she needs to be calmer. We will not sedate a patient because family members are concerned because he/she is agitated. But we will sedate the patient if he/she is very agitated and then we will calm him/her and thereby his/her family. This has to be measured by the team. It is not only one person who decides that we will sedate this patient. Of course not! Well it could be the case that the patient asks to be sedated at the end to be calmer. We do not practice euthanasia. But we help the person to be calmer. To be peaceful. That he/she could die in his/her own time without suffering. This is really important. (Catherine, physiotherapist)
This was further magnified in a comment made by a head nurse, who stressed the relationship between palliative sedation and the provision of a ‘dignified death’. She stated that it may help the patient to die in a peaceful way and allow the family to experience a peaceful death: I think it’s an ally. There are times when sedation is essential for the patient and the family. With sedation we are able to provide patients with a ‘dignified death’. This is because we reduce their suffering. I don’t know if sometimes we worry more about the patient that is dying or more about the family that remains. The suffering of those who are living cannot be taken away. The inevitability of death is always present. Maybe it’s important to help those who stay to see some dignity. To see that the patient is no longer in delirium. To see that the patient is no longer in pain. Sedation is often used when the suffering of the soul is huge. Maybe sedation is essential to calm everyone, especially families. (Charlotte, head nurse)
Some patients, when they were sedated, ended up losing their ability to interact with significant others. The story of Bianca, a 71-year-old woman with a chordoma (i.e. rare skin cancer), illustrates this point well. Following her admission, Bianca became very agitated and confused. She suffered from delirium. Bianca was heavily sedated by the staff so she could be more peaceful and as a result she was no longer able to interact with her loved ones. Bianca’s oldest son (Alphonso) reported his concern about his mother’s lack of interaction to a nurse (Carl), who was on duty when he came to visit his mother for the third time after she had been admitted into the in-patient unit. He acknowledged that it was very difficult for him to accept that his mother was no longer able to recognize him: When I arrived at the palliative care facility this morning Alphonso and Carl were talking near Bianca’s room. Alphonso was very disturbed and Carl tried to calm him down. Bianca’s son said to Carl: ‘For me it’s very difficult to see my mother in this state. She cannot even recognize me. I think she is worse since she has been here. Before she came here, she was able to recognize me. Now she can’t’. Carl responded: ‘I understand. We had to give her some tranquilizers because she was very agitated and confused, as you know. She is calmer now. I know she is not able to communicate but you can still be with her. Hearing is the last thing you lose. So she can still hear you. We will do our best to help your mother. (Extract from field notes)
Although patients were sedated their family members continually tried to interact with them. This was particularly evident in our fieldwork observations. The patients who were not sedated, but due to their illness had lost the awareness of themselves and their environment, were not abandoned by their family members as they visited them regularly. Furthermore, the staff did not treat these patients as if they were already dead. An example of this is the fact that the staff continuously spoke about patients in team meetings and expressed a strong desire to relieve their physical, psychological, social, and spiritual suffering. Also, when the staff were in the presence of their patients, they tried to engage them in conversation and explained to them the procedures they were doing, whether it was changing a diaper or giving medication.
The findings of this study also indicated that palliative sedation was to a certain extent supportive of a ‘good death’. For instance, the story of Beatrice, a 68-year-old patient with an occult tumour (i.e. a tumour that was hidden or so small that it couldn’t be found), helped to illustrate this issue. Beatrice confronted the palliative care team about her prognosis 4 months after being admitted to the in-patient unit. The doctor, upon her request, disclosed the fact that she had a terminal illness. In the weeks that followed, Beatrice began to be very anxious and confused. Despite the strong efforts made by the staff, they were unable to address Beatrice’s suffering and she became delirious. Beatrice’s husband was very concerned with the situation and stressed this in a conversation he had with us: ‘There is no cure. There is no chance of her getting better. So, my only wish is that she does not suffer’. The staff decided to sedate Beatrice so she could be calmer. The decision to sedate Beatrice was also a difficult one for staff: on the day that Beatrice had been sedated we found a nurse crying in the staff room. When we asked the head nurse about what had happened she told us that it was painful for this nurse to watch Beatrice’s suffering and to acknowledge that Beatrice’s existential suffering was so intense that they had had to sedate her to minimize it. She died 2 weeks after being sedated. According to the staff, sedating Beatrice helped her to die calmly and to achieve to a certain extent a ‘good death’.
Discussion
This article aimed to contribute to a better understanding of the possible indignities experienced by patients with a life-threatening illness and the ways in which palliative care is able to maintain or restore a patient’s sense of dignity in the face of dying and its bodily realities. The findings outlined here suggested that in the weeks and days prior to their deaths some patients were likely to experience a loss of consciousness which was in certain cases induced by palliative sedation. This was understood by the staff as a practice used to relieve patients’ suffering – namely their existential suffering – when no other options were available (Fainsinger et al., 2000; Gonçalves et al., 2003; Rietjens et al., 2007). The findings convincingly showed that the relief of suffering was a central element in the ‘good death’ definition of the actors involved in the dying process and that palliative sedation was key for this relief.
Palliative sedation was a practice openly criticized by Lawton (2000), who argued that this inevitably leads patients to experience a form of social death. However, Lawton’s (2000) argument is not in accord with our findings, as although some patients had lost their ability to interact with others – due to a certain extent to palliative sedation – they continued to be treated as a person by both family members and palliative care professionals. Also, unlike previous research by Murphy et al. (1988) and Mwaria (1990) with patients in a coma or in a persistent vegetative state, we did not find in our study sufficient evidence to suggest that the patients were in a socially ambiguous and isolated position – what Turner (1969: 93) inspired by the work of Van Gennep (1960) defined as a ‘betwixt and between position’.
Palliative sedation has been applied in the research context to benefit patients as it enabled them to die during a deep sleep and thereby it helped to achieve the ‘good death’ ideal highlighted by the advocates of the modern hospice and palliative care movement (Seymour et al., 2007). The preference for a death in one’s sleep could to a certain extent be explained by the desire to avoid distress (Aleksandrova-Yankulovska and Ten Have, 2015). The ideal of a ‘good’ or natural death – that is, death in which medical intervention is kept to a minimum (Mak and Clinton, 1999) – is challenged by the use of palliative sedation. This confirms Seymour’s (1999) findings that the meaning of a ‘good death’ is subject to a process of interpretative construction and reconstruction. Although it is a controversial topic that has generated several debates (Bruinsma et al., 2014; Raus et al., 2014; Seale et al., 2015; Seymour et al., 2015), within the context analysed, the use of palliative sedation is indeed supportive of a good way of dying. Evidence suggests that palliative sedation actually helped patients to die during a deep sleep, thus reinforcing the ideology of a ‘good death’ (Seymour et al., 2007).
Unlike the patients in Lawton’s study (2000), the patients in this study were not sedated heavily to render them ‘docile’ and thereby to maintain what Strauss et al. (1982: 254) have described as the ‘sentimental order of the ward’. We are not saying that palliative sedation was not beneficial to the organization itself as it helped the staff to do their work more effectively and to provide to patients a ‘dignified death’. Instead, in line with the extant research concerning hospice and palliative care (Fainsinger et al., 2000; Gonçalves et al., 2003; Rietjens et al., 2007), we argue that the primary reason for the use of palliative sedation was to benefit patients who were experiencing extreme suffering. The staff in this study were aware that sometimes they were not able to minimize patients’ suffering (in particular their existential suffering). This, most of the time, was not related with the bodily realities of dying per se but with patients’ life circumstances. Hence, in these situations palliative sedation appeared to be the best option as it enabled patients to die calmly and with dignity.
Like the extant research that has explored the features of a ‘good death’ for hospice and palliative care professionals (Lawton, 2000; McNamara et al., 1994; Payne et al., 1996), a ‘good death’ was considered by the staff in this study to be one in which the patient died free of pain, without distress, peacefully, quietly, and with family support. Although a few members of staff outlined the ideal of personal choice for the achievement of a ‘good death’ (McNamara, 2004; Seymour et al., 2015), we found that this situation was rather complex as most of our patients were not openly informed about their impending potential death (Hilário, 2020). The findings of our study confirm that even when agency is constrained and open discussion of death does not occur, therefore, challenging hegemonic conceptualizations of the ‘good death’, other forms of a ‘good death’ might emerge and take place within end-of-life care (Daniels-Howell, 2020). In this regard, it is important to mention that the concept of ‘good death’ is contextual and, therefore, can be related to the individual’s life history, values, beliefs, as well as the meanings and senses that they attribute to life and death (Graven and Timm, 2019; Kehl, 2006; Timmermans, 2005). Indeed, previous research has shown how individual biographies and family structures are deeply interwoven within the process of death and dying (Borgstrom et al., 2019; Broom and Cavenagh, 2010; Broom and Kirby, 2013; Kellehear, 2008).
It has also been argued that in order to die well patients should have their physical, psychological, social, and spiritual suffering reduced (McNamara et al., 1994). We nevertheless found that physical suffering was one of the most important aspects that families wished to be addressed. We noted that the management of pain and the control of symptoms were central preoccupations for family members and often precipitated palliative care admission. Palliative care offered to patients, and their families, the possibility of achieving a degree of control over their decaying and deteriorating bodies (Broom and Cavenagh, 2011). Although the staff gave prominence to the medical responses to pain and to uncontrolled symptoms, as they believed that without the effective management of pain and symptom control it would not be possible to address the other dimensions of care and thus reduce patients’ suffering, they tried to address as well the psychological, social, and spiritual dimensions as they strongly believed in an interaction between them.
The findings presented here are to a certain extent similar to the findings of McNamara and Rosenwax’s (2007) study, where physical pain was described by bereaved relatives as something that was quite problematic for patients at the time of death. Like the staff in James’ (1992) and McNamara’s (2004) studies, most of the staff in this study were likely to give prominence to the medical responses to pain and to uncontrolled symptoms. In contrast to Lawton (2000), we did not find that the staff proposed a close and seemingly exclusive relationship between physical pain and suffering. Although the management of pain and symptom control were a central issue for the staff in our study, they did not believe that the suffering experienced by patients could solely be reduced or eliminated through these methods. This aligns with the notion of ‘total pain’ proposed by the founders of the modern hospice and palliative care movement. Indeed, the findings suggested that suffering was ‘far broader than “physical matters of sensation”’ (Clark, 1999: 734) pervading every aspect of the patient’s remaining life (Bendelow and Williams, 1995). Thus, there is a need to recognize that suffering is a personal experience (Wilkinson, 2005) and that it might be difficult for palliative care professionals to enter into this realm.
Limitations
The study was limited in several respects. First, because of the sensitive nature of the topic, we decided not to interview patients themselves. We took the decision to interview instead family members, as we believed that they were an important source of information about patients’ experiences of the process of death and dying. Nevertheless, by not interviewing patients we are not able to say that our findings represent a ‘pure’ sociological view of their own representations. Second, although the study offers valuable insights on the perspectives of family members of patients who suffer from advanced cancer, the findings cannot be ‘generalized’ to the relatives of patients who suffer from other type of conditions. Third, the observational range of the study was limited to certain events, illustrating a partial picture of the realities of the process of death and dying at the palliative care units analysed. Fourth, the study was conducted in palliative care units in Portugal and due to Portuguese cultural specificities (e.g. its familistic culture) the study is not transferable to palliative care units in other countries.
Conclusion
This article explored how those involved in the care of patients with a life-threatening illness perceive and interact with end-of-life practices. The data collected suggested that both palliative care professionals and family members believed that palliative care should be integrated within the scope of an holistic vision that guarantees the patient’s well-being at various levels (physical, psychological, social, and spiritual). Although the relief of physical symptoms acquires centrality, the staff from the palliative care units analysed also sought to address the psychological, social, and spiritual dimensions as they strongly believed in an interaction between them. Within this context, sedation is characterized as an instrument that makes it possible to achieve a death in a peaceful manner with less suffering, thus fulfilling the requirements of a ‘good death’. Even though sedation is used in order to avoid the patient’s suffering, it is a controversial and contextual practice, in which the patient’s consciousness and ability to relate to others are at stake. However, our findings demonstrated that the patient continues to be a part of a relational dynamic, both with family members and palliative care professionals. To conclude, the findings suggested that end of life is both a personal and relational experience, as such palliative care professionals should articulate their technical knowledge with their sensitivity (emotional work) to be able to treat the patient and the various dimensions that characterize them.
Footnotes
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The first author would like to acknowledge the financial support of the Portuguese Foundation of Science and Technology (FCT) through an individual doctoral grant (SFRH/BD/43293/2008).
