No significant differences were identified between the two participant groups in terms of their approaches to confronting the end of their lives, their initiative and motivation to engage in confrontation, or their individual wishes for support in this area. In both groups, the participants who displayed more of a dismissive attitude did not necessarily avoid death-related topics; indeed, some of them explicitly mentioned the necessity of discussing these issues. For example, one participant avoided any contemplation of his life-limiting diagnosis: “So if someone says, yes, you are running away from it, then I think, yes, you could be right, you can see it that way.” (Interview 16: D, pos. 66). However, he expressed an ambivalence toward his own perspectives “But that doesn't help, you have to talk about it. Otherwise, I don't know, then it will somehow get lost, because the process is not under control.” (Interview 16: D, pos. 128). Within this interview setting, the subjective perception of being close to death seemed to be comparable between the two groups. According to the participants, their attitudes toward death have not changed as a result of the pandemic, and most of them were cautious to avoid infection and the risk of dying from Sars-CoV-2.
Approaches to confronting the own end of one’s life and their effects
In their narrations, the participants described a variety of approaches to confronting the own end of life: theoretical education, preparing for one’s own death, talking about death-related topics, reflecting and thinking about death-related topics, and faith or and spirituality-based approaches.
Theoretical education: In both groups, theoretical knowledge regarding death and dying was often acquired through readings or literature. In some cases, the participants had also undergone further education on the topic on their own initiative. Theoretical education included films, Internet research with a potential focus on recent research results, and information sources such as physicians and specialized outpatient palliative care. This form of confrontation was usually chosen by the participants themselves, and often led to assurance. This theoretical knowledge growth resulted in new coping strategies and the development of additional points of reference for the final phase of the patient’s life.
To find out what intellectual people have thought and written about it can lead to personal growth. (Interview 6: A, pos. 133)
So I found that very important, to put myself into context with other individuals. And not to think that things happen to me alone, they (…) are to do with development or with stages of life. (Interview 6: A, pos. 133)
Scientific knowledge has the power to provide certainty. The overall positive effects also included the relieving realization that others were in a similar situation, as one participant concluded.
Ageing research (...) I find that relieving and reassuring, to see that it is part of it and that's how it is, and for you too. (Interview 6: A, pos. 137)
Preparing for death: Preparing for the end of one’s life was inevitably a confrontation with individual ideas on how to actively take control over the final phase of one’s life, and also an act of dealing with wishes for one’s estate and burial. Participants with a life-limiting disease did not take more measures to prepare for the end of life than people aged 80 and over, though in some cases they did have more concrete ideas regarding their funeral process, e.g. clothing. In the context of advance care planning, most people in both groups had drawn up a living will and described a feeling of self-determination in that they could still make their own decisions up until their deaths, and that this made them feel more secure. A sense of relief and calming effect were also achieved following the completion of advance care documents. The feeling of knowing what end-of-life processes might look like helped the participants feel less burdened. Being proactive in terms of preparing for the end of one’s life also played a role, in that many participants aimed to avoid being a social and emotional burden to others.
I don´t want life-prolonging measures. (…) I've sorted things out so far, now we just have to let things come to us. (Interview 11: A, pos. 26)
The planning of one’s own funeral, the financing for which had also already been independently arranged in some cases, was occasionally perceived as threatening and strange, but the assurance achieved through detailed planning, up to the clothing to be worn by the deceased, also had a positive effect in two ways: On the one hand, there was a feeling that “it's done” (Interview 3: A, pos. 154) and on the other hand, participants reported a sense of security that their funerals would meet their own expectations.
It was important for me to know that everything would be clean and calm and good. That those I write down are notified. (Interview 15: A, pos. 78)
For other participants, planning was simply part of the process, and did not trigger any particular feelings.
That's the way it is now. There is nothing more to say. I don't think about it all the time. That's how it is. (Interview 6: A, pos. 37)
Talking about death-related topics: The act of talking about death-related topics was mentioned frequently as a way of confronting the end of one’s life. In most cases, the participants talked to loved ones about their current situation, the feeling of being close to death due to their age or health condition, and also about their estate and funeral. Death-related topics were also discussed with friends and healthcare professionals in order to help the participants orientate themselves within the final phase of their lives, to avoid illusions, and to share their own thinking, which help them feel more light-hearted. The effects of these actions were almost exclusively described as positive; participants said the discussion was helpful and important in developing their own coping strategies and alleviating their fears.
Yes, you then feel... well, I did, at least... you then feel a bit lighter, because he had the same thoughts as I did. And so, he says, yes, we can't do anything about it anyway. It's our turn. (Interview 13: A, pos. 85)
Others described discussions of death-related topics more neutral in terms of their impact, as they possessed the conviction that death was a natural process and part of life. These participants also considered a discussion of their present circumstances and emotions unexciting but unavoidable.
The participants indicated that taking part in the interviews had enabled them to gain new insights, brought forward new concepts relating to attitude, and even resulted in improved satisfaction for them.
I'm really grateful to you for this interview, because I wasn't aware of it at all. But it really comes more from the fact that I have integrated myself like... (longer pause), yes, into the cycles on the one hand, into the natural cycles. (Interview 19: D, pos. 60)
Conversations could also provide clarification and relief through the building of trust between conversation partners the compassion of the other person becoming visible to the participant. This acted as a form of reassurance that the participants were "not alone in this process of coping." (Interview 3: A, pos. 39) In addition to serious conversations, humor was also perceived as a source of relief in one case.
There is a third person living there. That's the cancer. We named him Donald, after Trump, the ass. And if something went wrong or something, we said: I'm sorry, that was Donald. He is interfering again, the jerk. And that was helpful for me, to see it that way. (Interview 21: D, pos. 161)
A few people said that they avoided conversations with the people closest to them, or only talked about such existential topics when the occasion arose, so as not to trigger burdensome situations themselves.
My daughter never sees me like this. (cries) (Interview 5: A, pos. 102).
Personal reflections and thoughts: Part of the confrontation the participants undertook with their own was largely invisible from the outside, as it took place within the framework of the participants’ personal reflections and their own thoughts on topics such as fear of death, uncertainty regarding the future, and wishes for a dignified end of life. The participants often described feeling a sense of relief once they had established more clarity within their own thought processes and conclusions.
I'm still too attached to life for that. But I am already thinking about how to defuse it. (…) To see it more calmly. The future of death, or what's in store for me. I have to accept that for myself. (Interview 9: A, pos. 181–183)
It gave the participants confidence to believe in something and to develop their owns path and attitudes. This had the potential to determine acceptance of phases of life. Participants rated personal reflections as a potential way of making life more meaningful. One unsettling effect mentioned in very rare cases was thoughts of dying during sleep.
(…) because I think about it and don't know what it’s like, how it happens. That scares me. (Interview 2: D, pos. 37)
Some people described having had little exposure to the existential issues of death and dying as they had not been present in their lives, the focus instead being on life-related matters. The effects of these initial thoughts were generally perceived as neutral and served as a source of reassurance, it was commonly assumed that confronting this topic was a necessity.
Spirituality and faith: The participants reported turning to spirituality and faith to guide their approach to dealing with their own finitude. This approach was able to play a significant role in determining the individual's attitude toward death and dying. Several of the participants stated that believing in God and going to church helped to reduce their fear of death and dying and increase their well-being.
I pray to Jesus often, and the Mother of God, and I say, “You know exactly what is good for me and I put everything into your hands,” and then I have already really chosen a good number. Then I don't need to burden anyone else. (Interview 15: A, pos. 14)
Mechanisms of actions seemed to be based on the conviction each participant had in their own beliefs and on external guidance from a higher power; this had a facilitating effect, as it led to the belief that one can only influence the course of one's life to a limited extent. Some people had turned away from the church without losing their faith. Spirituality was said to lead to an increase of assurance in terms of resonating with oneself and one's beliefs. People reported a greater sense of well-being and self-determination even diving deeper into spiritual topics, and said that this enabled them to integrate death into their lives.
Then I go into the root system of the yew tree and that feels really nice. Yes, everything seems well-rounded and that's why I feel quiet... so especially with these ritual connections, I think that's what really helps me to feel good. (Interview 19: D, pos. 60)
Need for action in confronting finitude and wishes
Some people felt that settings in which there was an opportunity to review life and to discuss death-related topics strengthened a sense of meaning. Outside of private contexts, there were not many services that provided low-threshold opportunities with a focus on confronting end-of-life issues. (Semi-)professional approaches to confrontation were difficult to access because they were not visible enough.
It is important that this is made a bit more public – where people can find out about this, that and so on. (Interview 17: D, pos. 148)
However, it was considered very important to remember that people are also entitled to avoid the topic, and for carers and people around those approaching the end of their lives to accept this opinion.
Therapeutic settings, including group therapy, were desired not only by people with life-limiting diseases, but also by people over 80 who wanted an honest discussion with others in their own age group. Psychological support services were requested, especially after a serious diagnosis, but there was also a desire for other forms of therapy, such as art therapy.
Every tumor patient must be accompanied. That needs to be offered as a matter of course. (Interview 7: D, pos. 120)
Being able to talk to one’s next of kin, people in similar situations, and psychologically trained staff or pastoral caregivers was frequently mentioned as a need. Discussion groups were rated as desirable, but here too, a lack of accessibility was expressed.
Some people showed a great deal of uncertainty regarding what services currently existed, and for many people it was thus unimaginable to take advantage of services that focus on confronting finitude.
I don't know. What kind of services are there? Yes, how, what can I wish for? (Interview 2: D, pos. 137–139)
But I don't know where else to look. (Interview 7: D, pos. 120)
Some did not know whether they would make use of services, others categorically refused or expressed a diffuse range of ideas and wishes regarding the implementation of such services, since the idea of what contexts in which existential questions can be addressed might look like does not allow for inferable practical implications.