The end of life seen through the eyes of the patient – a qualitative study through individual in-depth interview

Introduction

Cecily Saunders’ introduction of the concept of total pain [1], which included physical, emotional, social and spiritual dimensions of distress, changed the way healthcare professionals approached the subject of suffering experienced by terminal patients at the end of life [2]. All the distinguished aspects interact with each other and constitute equivalent components. They can play a significant role especially in the context of chronic illness and the dying period. The high level of anxiety associated with the disease has a negative impact on the patient’s daily functioning, changing the quality of his life [3]. This group of patients is accompanied by a wide variety of symptoms involving both physical and psychological aspects. These can be assessed using simple scales such as numerical rating scale (NRS) for a selected symptom or assessed comprehensively using the Edmonton symptom assessment system (ESAS) [4, 5].
Therefore, taking action by medical and non-medical personnel to recognize all these symptoms, especially anxiety, assess it and then attempt to “name” it by the patient is an essential step. Naming the anxiety and obtaining information from the patient on how it is perceived, as well as finding its source during the conversation, may allow the patient to reduce its level. Such an approach seems to be the standard for working with a chronically ill/dying patient recommended by, for example, the European Association of Palliative Care (EAPC). These measures are recommended by the EAPC as enhancing the patient’s quality of life and quality of care [6, 7]. It is worth mentioning that this is not always a simple task, often related with emotional costs experienced by staff and patient’s families or widespread compassion fatigue [8–10].
One type of anxiety, found among patients where the risk of death is high, is fear of death, raising existential questions in patients and their caregivers about the meaning of suffering and illness, reflections on dying itself or the life after death.
It would seem that a properly conducted conversation and interview with the patient, accompanying conventional treatment and ongoing pharmacotherapy, psychotherapy ought to be sufficient to effectively alleviate anxiety and other symptoms of the patient [11].
Unfortunately, this is not always successful. The reason may be the stereotypes accumulated over the years, which, due to cultural conditions and personal experiences of both healthcare personnel and the patients themselves, remain taboo topics. The article addresses the delicate and intimate issues related to thinking about dying, fearing one’s own end of life, and examines factors which reduce the anxiety among patients and assesses concomitant symptoms.
According to the dictionary, taboo means what is not spoken of, because it is forbidden [12]. Human concerns in the context of dying and death can be treated as such, having particular relevance for people with life-limiting illnesses [11, 13].
It is commonly believed that it is better not to talk about it in front of a seriously ill person, in order not to evoke unpleasant emotions and to protect the patient from triggering end-of-life anxiety. We treat it as if the patient is unaware of his situation and life, his own mortality, or incapable of self-reflection [14]. For the patient, this topic is extremely important and urgent, especially in the context of disease progression.
The subject of death is indirectly or intentionally avoided in many social situations. This may be, for example, an attempt to “protect” children from sadness and the irreversibility of the phenomenon [13]. Death itself is considered an issue that is difficult to talk about, often not accepting it as something natural and human.
A skillfully conducted conversation builds a relationship with another person and can even have a therapeutic function [6]. Authentic presence and skillful listening to the other person can significantly reduce fear and anxiety and bring relief, also in the area of other symptoms. If conducted factually and subtly, it proves to be a powerful therapeutic tool [15].

Material and methods

Aim and the research questions

The aim of the study was to analyze and describe the issue of death from the perspective of palliative care patients in the advanced stage of illness and identify triggers and mitigating factors of the death-related anxiety. This study was also aimed to analyse if and to what extent the interview and discussion with patients about their experiences and thoughts about death and dying influence their well-being and coexisting symptoms. Based on aims of this study, the following research questions were posed:

1. Do patients want to talk about their end of life and death?
2. With whom do they want to discuss such topics?
3. What do patients think and feel talking about death and dying?
4. What emotions do patients have talking about death and dying?
5. Do patients fear of death and dying?
6. What triggers and mitigating factors of the death- related anxiety do patients have?
7. What is the well-being of patients before conversations about death and dying?
8. What is the well-being of patients after conversations about death and dying?
9. What are the differences in patients’ well-being before and after talking about death and dying?

Participants and procedures

The study included 15 patients with cancer in the advanced stage of their disease. The criteria of inclusion were:

• being a palliative care patient,
• patients who, after an initial conversation, agreed to discuss the topic of dying and their own death.

All participants were the patients of the Blessed Father Jerzy Popie³uszko Hospice in Bydgoszcz in Poland, as well as in the homes of patients under hospice care. Patients were informed of the purpose of the study and the method of performing the tests. Each patient was given the opportunity to refuse to participate in the study without any consequences at each stage of the study. The patient who expressed willingness to participate in the study was asked to provide formal written consent. The study was conducted over a period of 3 years (2014–2017).

Methods and procedure

Due to the research questions posed and the purpose of the study, a triangulation of methods was used. Qualitative methods with an individual in-depth interview were used to explore patients‘ opinions and feelings in the context of death and dying, allowing us to explore patients’ individual experiences and the context of their experiences. The study also used a quantitative pre- and post-test method using the ESAS test.
Individual in-depth interview method
In the belief that quantitative research would not yield such in-depth knowledge of the subject (flattening of the information and not taking the context into account), the interviews were conducted using an individual in-depth interview. The method chosen for the qualitative study involves a direct conversation between the patient and the interviewer under conditions that ensure intimacy and the ability to freely express thoughts and feelings [16, 17]. The authors’ scenario was prepared by psychologists, doctors and students.
The patient who expressed willingness to participate in the study was asked to provide formal written consent. The scenario asked about emotional state, knowledge of one’s own illness, previous communication with doctors and family members/guardians, perception of their own death before and during the illness, insightful assessment of pain and other symptoms, detailed analysis of one’s own end of life, spiritual aspects and relationship with loved ones, fears and negative emotions while thinking about their own dying.
The examination was conducted according to the questions listed in the script. Each interview lasted about an hour, taking into account the condition and state of the patient. The conversations were recorded, transcribed by suitably prepared persons from the research team. After that, the research team have been working over the transcribed conversations in order to assign statements to the categories established earlier. A content analysis of the available material was used to describe and identify the data obtained. According to the methodology of sciences, “content analysis is the study of text messages, both written (…) and oral. The analysis aims to reduce the content of the whole text to its most important meanings: most common words, key themes, predominant grammatical and semantic forms” [18]. In some studies, this technique is called an implicit analysis, which involves “analysing what has been written or said” [19]. The analysis of the most common utterances makes it possible to determine what is most important and how this is defined by subjects. Categories were established to properly analyse the raw material, which at a later stage of the material analysis enabled the identification of statements. The categories adopted were: reasons for thinking about death, fears related to death, death perceived as a relief, spiritual aspect, coping with death-related thoughts, preferred place of one’s own death, relational aspect, conversations about death with healthcare professionals.
The level of pain and other symptoms was assessed during interviews according to ESAS.
The patient interviews were conducted by a medical student, initially under supervision, at the Department of Palliative Care of Collegium Medicum in Bydgoszcz (Nicolaus Copernicus University in Toruñ). The student had previously undergone a volunteer preparation course designed and organized at the hospice.
Edmonton symptom assessment system
Before and after the interviews, a quantitative assessment tool was used. The aim was to find out whether the level of perceived well-being before and after the interviews changed, and whether talking about existential and spiritual issues raised or lowered patients’ well-being. To this end, the study used the ESAS scale [4, 20]. Patients specified the intensity of the following symptoms on a questionnaire on a scale 0–10: pain, fatigue, nausea, depression, anxiety, drowsiness, appetite, mood, shortness of breath and other problems (self-indicated in the last item). Edmonton symptom assessment system has good internal reliability (Cronbach alpha 0.79) and it can be used in research [20].
The scheme and stages of the study are presented in Figure 1.
The study was approved by the Bioethics Committee of Collegium Medicum Nicolaus Copernicus University (KB 559/2013).

Data analysis

The following methods of data analysis were used to present the results:

• inference statistics were used to calculate the degree of well-being before and after the interview: M – mean, SD – standard deviation,
• the content analysis was used to recognise the patients’ expressions and perspectives of death and dying.

For quantitative analysis, Statistica program was used. Qualitative strategy: code applications, transcriptions, coding and interpretation according to the theoretical categories have been done by the research team comprising 2 physicians, 3 psychologists, 1 student of medicine.

Results

In-dept interviews – content analysis

These interviews were analyzed by consistency with the theoretical categories adopted in the methodological section. The categories with examples of patients’ statements are collected in Supplementary Table S1.
Category 1: reasons for thinking about death
One of the first questions patients participating in the study were asked was – what causes you to start thinking about death? Being informed by a doctor that one is at the end of life does itself trigger thoughts about death. Our aim was to determine whether there are factors, which further exacerbate their frequency. Most often, patients indicated their current health status, disease progression, concomitant illnesses, additional ailments, age, awareness of hospice stay, as well as experiences related to the death of others. Below there are listed some of the statements made by the surveyed respondents:

• Well, unfortunately, I compare myself to... a car. The best brand, the most expensive model at some point wears out. I see myself wearing out. I am aware of it;
• My shortness of breath – that at any moment I can just not get air and that’s it;
• Experience, listening, meeting people who years – I don’t know how high they were – died. He fell asleep, gave no sign, did not speak – the person died;
• I live alone, then such thoughts come upon me;
• Ha, ha, ha... well, sometimes I can’t cope with the pain;
• For example, that I am... in a hospice. That’s the only care and refuge for me at the moment, that if anything happens, I’m not alone. Respondents also said that there were times when such thoughts occurred spontaneously, at times when they were left alone in the room, in the evening before bed time:
  • Well, I guess when I lie down in the evening before going to sleep;
  • ...as I’m lying like this, I’ll think about it from time to time.
  What also drew attention in some patients was the awareness that death is a natural part of life. Conviction that passing is natural and nothing is eternal: Someday a person must disappear from this life (…) It is inevitable.

Another reason for thinking about passing away was witnessing the death of another patient: I think it’s more like this. Well, because when I came here there were four people dying next to me (in the room). It’s been quite a lot of experience. This should be brought up by other people... there should be someone, someone with whom a person can talk to as with another person on this subject, right? To be able to at least express your fears, concerns?
The quoted excerpt from the conversation shows that death-related events witnessed by hospice patients trigger their desire to discuss death-related topics. The patient, who uttered these words, was already in one room together with four other patients who had passed away. The mere fact of death did not make him feel anxiety or fear, but he needed the opportunity to talk to someone, so that he could share his observations and thoughts regarding the experience. During the interview, the patient emphasized that he had not thought about death before, and only the situations he witnessed in the hospice provoked him to do so. Still, he expressed the need to discuss it with another person.
Category 2: fear of one’s own death
Patients were then asked: What comes to mind when you think about your death?, and answered: I’m just afraid, and I don’t know what this death is.
Death as a phenomenon still remains incomprehensible and triggers anxiety that could be observed during interviews. The time needed to formulate a response differed for each patient. They also specified what they wanted the moment of death to look like.

• Well just that I wouldn’t have to suffer and cause someone pain. And that someone would be kind to me;
• ...not to be away from home...;
• How is it there? How to end this world? To get off this world with the least amount of suffering...
• In the slightest consciousness and with calmness. Responses to the question: Is there anything you fear in death? can be divided into three main subgroups: fears about death itself, suffering and loneliness.
• Do I know... death itself?
• Yes. I am afraid of possible suffering. I’m afraid of going somewhere – if I go somewhere at all – what will happen to me?
• I wouldn’t want to die alone.

The concerns mentioned by the patients indicate how important it is for patients to spend their last days in the most comfortable conditions possible. In addition to the need for loved ones to be present at the time of death, there was also an expectation that those present should remain calm, especially when death occurs. Sometimes the concern about the comfort of dying was so great that the person would prefer to be alone at the time of death:

• So that no one would interrupt me. That’s why I would want to be all alone, lying down. Without interrupting death;
• I’m afraid that I wouldn’t suffer; that I wouldn’t consciously die, that I wouldn’t know that...or that this death would be joyful like that; that I would, for example, lie down asleep and not wake up again, or that I would see everyone around me smiling. Well in this way... this is how I imagine. I don’t imagine – like, for example, my neighbor who died 3 months ago; he, for example, was howling, moribund – really very agonizing.

Category 3: death as a relief
The statements were very much influenced by the patient’s current condition. If there was intense pain, then there was a desire for death to bring it to an end.

• May it come as soon as possible and be as painless as possible;
• To die without pain – just to fall asleep...

However, there were also times when the anxiety was not present at all, or the fear of pain was stronger than the fear of death. The patient indicated that he sees death as a positive aspect: ... well it has its... positive side – it is just that death will also take away the pain.
If death was supposed to liberate from pain, therefore it was expected, even desired that the patient answered the question: I don’t fear it.
The patient in this case also had the wrong conception about the type of medical measures taken at the hospice: I thought hospice would make death easier for me. And it turns out that they... don’t really cure, but they ease it..., on call they will come.
Category 4: spiritual aspect
Faith in God also influenced the way of answering. In this case, spiritual needs and anxiety about how one lived one’s life came to the forefront:

• That at the top St. (ed.) Peter will open the door for me and say down there – you didn’t deserve it;
• I am very happy that the priest has forgiven my sins and I hope to meet the Lord;
• As I think to myself about death, I wonder if we, as humans simply, have a soul... well, and if there is life in eternity.

It is not possible to answer some of the patients’ questions, such as: what happens to us after death? However, when such questions are raised, it may be appropriate to try to transfer them back to the patient.
Category 5: coping with thoughts of death/factors reducing the fear of death
Our goal was to find out how the patient perceives the end of his or her own life, and to try to determine how respondents coped with this difficult situation. So we asked: how do you deal with this fear? The answers varied among the patients:

• Am I coping? I don’t want to let it (…) run away from it (…);
• I push away (…);
• Surrender to what is to come!;
• Well, somehow it doesn’t particularly depress me;
• I don’t know, I’m even surprised that it’s like this, that I accept this somehow – (…) With such great calmness? – Yes, yes. Such great calmness.

The patients surveyed mainly presented strategies of avoiding thinking of their own death and the fears associated with it. There were also people who indicated that they were not depressed by the situation and even felt inner peace.
Category 6: preferred place of death
Respondents most often indicated that they would like to die at home, although after a moment’s thought they also added that in a hospice.
Because here (in a hospice) it is really GREAT, there is an understanding of the person, an approach at every moment.
The patient’s own experience of witnessing other people’s death, often those close to them, greatly altered their approach and their choice of companions, as well as the place of dying. (…) I wouldn’t want to die at home, so as not to contaminate the house with this specter of death.
The statement highlights how important it can be to discuss with the patient the topic of dying in one’s own bed, as the conversation was recorded at the patient’s home, where he was under hospice care.
For some patients, the questions were surprising as they had never considered the issue of where and with whom they wished to die. They gave answers only after being asked to think it over during the conversation and say the first thought that comes to mind.
Category 7: impact on interpersonal relationships (conversations about death with loved ones)
Often the patients’ desire was for someone to be present with them at the time of death, and they most often mentioned the people with whom they had maintained the best contact throughout their lives.

Ideally, it would be one of the children. (…) someone I know who was kind to me during my life or in my last moments;

I won’t say no – because yes, I would like it. Maybe my husband. And if not him then, at least one of the daughters;

Preferably a son. But it can also be my brother’s daughter. (…) A person close to me. The need for the presence of someone close at the time of death was often accompanied by concern about their behavior and emotional state at the time of death. This resulted in resistance to possibly involving others in the event of death, even if they were people the patient would like to have next to him at such a moment. I think so. (…) I don’t know how those children of mine would behave. Because my sister would panic again. But still – so that someone would be there? Yes, so that someone would be there.
This statement also shows the importance of the role of the family at the time of dying, and how important it is for the therapeutic team to prepare them properly – so that they can show support while not prolonging the agony.
Among the responses, however, there were quite different opinions, both in relation to the place and the presence of people: (…) that not at home! Not at home (…) – And in the hospice? – Yes, in a hospice, in hospital. Not some kind of euthanasia, but just in the hospital. Not among the family – And would you like a person to be present with you at the time of death? – But not a close one, a stranger. There could be, but rather not either – You would prefer alone – Yes, because why should he walk/live with it later... because I, when I was by my daddy’s side, so many years he’s already dead, and I can still see him with those eyes like that... then why should that person remember me like that?
Thoughts of death sometimes caused grief before leaving this world and anxiety about not being able to fulfill some promises: (…) just that I wouldn’t want to die yet; I would like to keep the word I gave to my granddaughter that in 10 years I will be at that wedding.
Category 8: conversations about death with healthcare professionals
At the end of the survey, the patients were asked: do you think medical personnel should discuss the topic of dying?

• Well, I don’t know. Every patient would perceive it differently...;
• I think yes. It’s a taboo subject in my opinion. But it would probably be easier for some to understand the meaning of death, the meaning of passing away;
• In my opinion – yes!;
• They should;
• Well, maybe it would be worth talking about these topics...
• In some sense, yes. To possibly prepare this person. But I think this is debatable.
• Because one either prefers that someone experiences it completely unconsciously, or that consciously... right... so I can’t answer that question;
• Rather not;
• No, there is no need for that;
• I, in relation to myself, would not want to. (…) No, no. As long as I’m aware that I’m facing it. I think that I would feel more depressed then. It’s enough for me to think about it myself;
• Do I know? It depends on the patient himself. I think so.

Patients’ opinions on the subject are divided, indicating their doubts and varying degrees of willingness to engage in conversation.

Scores on the Edmonton symptom assessment system scale before and after the interviews

Analyzing the patients’ responses it was observed that most often the conversation reduced the intensity of listed symptoms (Fig. 2). The level of pain fluctuated slightly, possibly in favor – a decrease of 1–2 points on the 11-degree NRS was observed. Although its level was not high (4/10 on average according to the NRS, it can be concluded that concentration on the conversation reduced the pain sensation. Only in one of the patients, the level of perceived pain increased, which can be explained by the length of the interview (57 minutes) and the forced sitting position adopted by the patient – he did not wish to walk during the interview and simultaneously indicated that moving reduced the distress.
Paradoxically, the subjects’ fatigue decreased after the interview. During its course, they became more animated, interested in the topic, also due to the fact that they often recounted their memories. Nausea was absent in most of the patients, except for one, in whom it decreased during the interview. Before conducting the study, patients reported that they had been nervous about the topic of the interview, which was later reflected in the results as anxiety and depression decreased in most patients. Drowsiness, if present before the study, generally remained the same. Scores on the ESAS scale before and after the interviews are shown in Table 1.
After the interview, patients were eager to return to the interrupted activities and undertake normal, everyday actions. Mood, if lowered before the survey, either remained unchanged or improved after the interview. Interestingly, similarly to pain, the level of dyspnea changed. If dyspnea was present at the beginning, patients reported a reduction after the interview. At the time of the interview, patients were equipped with the medications they used as needed – in case of dyspnea or pain. The necessity to administer them did not arise even once. In the “other problems” category, patients reported a wide variety of symptoms that had worsened or caused recent discomfort, however, in most subjects they remained unchanged. One person did not complete the interview, refusing without giving a reason.

Discussion

Patients’ attitude towards death and passing away varies and in most cases is associated with fear and uncertainty. Respondents most often indicated that they would like to die at home [5, 21]. In order to provide comprehensive care, it is necessary to pay attention to every element – from patients’ physiological needs, through psychological and social, to spiritual, which is included in the very definition of palliative medicine [22, 23]. Raising “terminal” topics can be difficult and involve a lot of stress, both for the patient and the medical personnel. However, studies show there is a strong correlation between patients’ quality of life and healthcare professionals’ interest in their spiritual needs [24–26]. When asked whether doctors should discuss existential and spiritual topics with them, the majority of patients responded ‘yes’ [27, 28], it was also reflected in the responses during the interviews. As Hebert et al. present, respondents expected the doctor to respect faith and elements related to it as meaningful to the healing process [29]. Resistance on the part of healthcare professionals is also an important factor. The biggest problems include the initiation of the conversation [30], as well as organizational aspects, such as lack of time or appropriate setting for the conversation [31, 32]. It is important to properly educate medical personnel, including students of all medical specialties on how to skillfully communicate and manage the emotions that may accompany such conversations [33].
The hospital personnel themselves admit to insufficient knowledge and preparation in talking about death and passing away [34]. Therefore, it is important to place as much emphasis as possible on training clinical communication skills already in medical schools [22, 35].
One part of the analyzed material is a record of patient statements, their individual experiences, verbal transformation of thoughts, feelings and potential fears while talking about death and dying. However, it should be remembered that there remains a whole non-verbal channel, which would probably add expressiveness to the statements of the people studied. This is an “under-reported” area of the study, to which no interpretation can be attributed [36, 37]. In our study, patients provided very personal content, thoughts, and sometimes even intimate content. It was a free flow of thoughts and words as a natural reaction to the questions asked.
In addition to focusing on the patients’ words, one ought to be sensitive to all the information passed between the lines. Some statements are accompanied by tears, emotion or a longer moment of reflection, and even though the patient’s statement seems laconic or poor in vocabulary, it can contain a very strong and deep meaning that only makes sense if we look at the message as a whole. The perception of death and dying may also depend on upbringing, the environment in which one has lived, which may also affect the ways of defining or assigning meaning to words that may mean something different to the patient than to the employee. The concepts of “death” and “dying” may hide various fears and concerns of the patient so they need to be asked – heard – explained [38].
Many patients receiving palliative care struggle with fear of death (thanatic anxiety). The way this anxiety is experienced and dealt with has a key impact on the picture of the patient-doctor/other medical personnel (professionals) relationship. The complexity of individual relational relationships of the doctor (medical personnel) affects the course and quality of the treatment process in the context of the experience and perception of fanatic anxiety (life situation, physical and psychological predispositions, skills, knowledge, self-awareness of the therapist) [39, 40].
Quoting Boyle et al.: death has ceased to be a natural process only to become a failure of modern medicine, we would like to point out the reason for treating the conversation about death and dying as taboo [41]. Today, evidence-based medicine, focused on positive outcomes and affirming life, finds no room for death, respecting it and perceiving as a natural process, as well as patients’ depleting physiological reserves. We are able to extend life, but have we met the challenge of its quality? Due to advances in technology and the development of modern therapeutic methods, it has been possible to postpone death, but as a result, it has become unnatural, almost absent in human life [26]. Therefore, it should be restored anew to its proper place in human existence, with the status of a natural phenomenon, and as much tamed as possible.
In the case of serious, life-threatening or life-limiting conditions, death becomes a topic we consider more often. Generally, healthy people are afraid to talk to terminally ill patients about the impending end of their lives, usually attributing their own fears and anxieties to them. As a result, according to the study, issues related to death were rarely, and sometimes not at all, raised by patients or their loved ones. Death, being an important and inevitable aspect of life, causes fear and anxiety [38] and the inability to talk freely about it raises many fears and understatements, which can affect the comfort of the patient in their last moments.
The patient’s ability to speak out about death and dying may allow for improved end-of-life care. In the study presented here, after the interview was completed, patients self-reported feelings of relief and a reduction in the intensity of anxiety they felt compared to before the interview. During the interview, the researcher learned about the patients’ beliefs and was able to clarify many statements, judgments and decisions previously made by the patient. Such knowledge can lead to a better understanding of the patient, as well as help the specialist prepare for the next steps, both regarding the interview and the progressive disease. It is possible that the key is the proper reference to the topic and the proper conduct of the conversation by a team properly prepared for such a conversation, in order to be able to freely and in an unforced manner raise the issue of death and dying.
Among the surveyed, the conversation about death was more likely to be undertaken by those patients who, during the interview, categorically expressed that such topics should not be raised by medical personnel. It is possible that the most important factor is to have the conversation conducted by a qualified team, in order to raise the issue skillfully and in an unforced manner [42–45].
For every patient who agreed to participate in the study, there were 4 who refused to participate. Possible and probable reasons for this are defense mechanisms, such as denial, often used by people who are unable to face the seriousness of the disease. Studies show that denial improves physical and mental health, as well as reduces the fear of death and the frequency of visits to the clinic [46]. Therefore, each time the topic of death is raised with a patient, it should be preceded by an assessment of the patient’s attitude to the topic and willingness to discuss it, in order to avoid iatrogenic errors [46].
Although some patients did not express a desire to participate in the study, it was worth asking again, after giving them time to consider. Such a suggestion can be repeated, as the willingness to discuss the topic may depend on the patient’s mood and emotions at the moment [22]. This was the case for three patients who agreed to an interview when it was proposed again. One should not resign after the first refusal and each member of the caring team must be prepared to engage in such conversations [47]. This will make it possible to reduce the patient’s level of perceived fear and anxiety and even invisible barriers to relationships with staff and loved ones or medical personnel [48]. The time of day to address the topic also seems to be important [49]. During the day, when all healthcare professionals are available at the hospice, patients are preoccupied with daily affairs and may not want to discuss thoughts about death. It is easier for them to share in the evening hours, when they are alone with their thoughts. A good example is the statement of one patient: although you can close your eyes, it is impossible to close your thoughts. We may also encounter difficulties due to organizational reasons in the form of multi-bed rooms or presence of family members during visits to the patient’s home. Healthcare professionals should be particularly sensitive to the patients’ behavior, since it depends on the patient who they will trust, and it may be the person spending the most time with them, such as a nurse [50]. Therefore, it is crucial to ensure the right conditions and conduct the conversation in seclusion or a natural setting, such as the patient’s home. It provides intimacy and allows to discuss very personal issues.
Reducing the level of anxiety and fear associated with dying can mitigate the patient’s total pain. In case of intensified anxiety, even properly administered symptomatic treatment will not be successful, as the symptoms of the disease will be exacerbated by other factors, e.g. unresolved family issues [51]. This is also an important issue from a medical point of view, as it may explain why, despite the application of adequate treatment, the therapeutic effect is small or nonexistent. Actions aimed to control total pain are included in the model of holistic approach to the patient and constitute the basis for appropriate and adequate multilevel care. Patients who participated in the study did not feel depressed after the interview and returned to their rooms in a better mood, which was also reflected in the results obtained in the ESAS scale.
It is also worth mentioning that some participants did not show any fear of death at all. This contradicts the common opinion that all dying people suffer from anxiety. Therefore, medical personnel should not assume in advance that conversation about death will cause anxiety. On the other hand, if healthcare workers themselves have such fears and have not coped with the subject of death, they may transfer the anxiety indirectly or even directly to the patient. Each patient should be treated individually. It is unacceptable to generalize in advance and act “in the best interest of the patient” if we do not know their views on the subject, as it can be the cause of many misunderstandings and conflicts. We need to realize that there is no universal way to either conduct such conversations or guide the terminally ill patients through the process. Accepting one’s own mortality and understanding of death is so highly variable that each time the conversation becomes a “dive” into each patient’s cognition and richness of experience.

Limitations and future directions

The study has some limitations. For example, it would have to be expanded to include more respondents. Obviously, the period of the SARS-CoV-2 pandemic made it impossible to resume and continue the survey. The stage of advanced cancer of the participant could be also limitations, because of their death it would not be possible to repeat the study to examine of well-being of patients after some time. It could also yield different results with constructed a different scenario with questions and categories. Research using a scale of fear before and after interviews could give information about the level of fear of death mentioned by patients during interviews. Results of such study could be more useful for palliative care practitioners.

Conclusions

Death has always been a fear-inducing topic. People have been curious and simultaneously terrified by the unknown, which has been reflected in culture and art. Sigmund Freud noted that libido and Thanatos – the instincts of life and death – have always clashed in people. The fear of death and passing away is greatly intensified, especially if it involves ourselves or our loved ones. Avoiding the topic together with lack of knowledge in this regard is an invitation to anxiety – an opening to uncertainty and even terror. Learning about the inner richness of reflections based on one’s experience and the proximity of death provides insight into how individual the process is. It also makes clear the need for an equally individual approach to the art of communication in this regard.
The possibilities offered by modern medicine have completely changed the course of human life. We live longer and better than ever. The question remains, however, whether the process of aging and dying under the control of modern healthcare has also obtained a better quality. The results show also that opportunity to talk about one’s existential and spiritual reflections on the end of life strengthens people, increases their well-being and reduces anxiety. This can serve as an invitation to staff and families of oncology patients to engage in conversations about these issues with their patients and loved ones.

Disclosures

1. Institutional review board statement: Not applicable.
2. Assistance with the article: None.
3. Financial support and sponsorship: None.
4. Conflicts of interest: None.

References