“Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives
2. Materials and Methods
2.1. Aim of the Study
2.3. Participants and Method
3.1. First Thematic Area: Advance Treatment Directives and the Family
‘My will regarding my children is the following: I want them to be informed about the disease and its course by people who are close to them, in turn well educated on what to say. If it is still possible for me, I will participate myself in the conversation with them, in solitude. If not, I want them to be informed by people they know and love’.
‘I would like my children to know about the disease, but I am not sure I can find the right words to explain it to them, which is why I would prefer my psychotherapist friend to do it. After they heard about it, I would like to discuss it with them in a quiet and conscious way’.
‘I would try to explain to my children, in a simple way and through the use of metaphors, the situation and what will have to be faced. I would try not to scare them, I would try to make them understand that death is a passage and a transformation’.
‘I want to be treated for my disease, but only as I am able to eat alone and wash myself. When I am no longer self-sufficient and can no longer move, I do not want to be subjected to any kind of treatment or therapeutic relentlessness, and I do not want to be kept alive by any machine’.
‘Besides not bearing the idea of being a burden to my loved ones, I don’t want to be in such a condition that I can’t play an active role in my life. I want to breathe independently, feed myself independently, communicate without the help of external means’.
3.2. Second Thematic Area: The Importance of Reducing Pain and Suffering
‘I would like to live on my own strength and, at the moment in which they should fail, I would like not to be attached to respiratory machines. I wish I could be sedated to avoid atrocious suffering’.
‘It would be difficult to accept to be intubated and to resort to PEG, but I believe that I would not have the courage and firmness to give it up, I trust in the possibility to get used to it and have, consequently, more time to spend in the company of my family’.
‘I would accept the therapies and treatments that allow me to live as long as life is dignified. I ask not to be subjected to invasive interventions, but to be subjected to deep sedation, when my condition is critical, to ensure my dignified survival’.
‘If possible I ask to be cared for at home as long as possible with palliative care. The ideal would be to be able to spend my last days of life at home, taking advantage of nursing care. If possible, I ask to be cared for at home as long as possible with palliative care’.
3.3. Third Thematic Area: Emotions and Considerations Regarding Death, Illness and Spirituality
‘Needless to say, I am afraid! I strongly fear that I am unable to psychologically manage the burden of the idea of not existing, and the fear of leaving my children and my family without me’.
‘I ask for psychological assistance for my son so that he can understand my choice without living my absence with pain and regret, but with naturalness, perhaps with the help of specialised people’.
‘If I wasn’t able to breathe on my own, I’d require deep sedation. In this case, I think it is important that I, together with my husband, explain to our children the reasons why I am leaving this life for what is to come. I would like to do so by leaving strong in them the conviction that I love them very much, that I will always be close to them, and that we will meet again in the next life. I would like to leave them a serene memory of their mother and transmit to them the desire to live their lives intensely and the confidence in another. I would like to give them a last goodbye, but that they were not present at the moment of the sedation, that is, at the moment of death. I think it is essential that there is a moment of farewell that allows them to say everything they consider important so that they do not have the remorse of not having said something’.
‘I would like them and my husband to accompany me on the path of illness until death, hoping that it will not be too long and tormented for them. I would like, if the situation would allow it and without making my children feel too uncomfortable, that they would stay in the room with me at the moment of my death. What is most important to me is that they are surrounded by people who love them and can understand whether it is preferable to send them away’.
‘I want my family to know how things really are and to have the possibility to be close to me and to approach the mystery of death, with the help of an intelligent spiritual guide. May my death be a moment of transformation and growth for more conscious lives’.
‘But let’s all think about it for a moment, death is not so frightening, it’s not so serious, it’s not even so definitive. Everything we had together remains, even the next period together will be beautiful even if painful; let’s enjoy everything together, let’s not miss anything, that the spectre of death makes every moment wonderful and precious together. For when it will no longer make sense, let me go, let life and death take their course, let me go into a new dimension where maybe we will meet again or maybe not, but what we had together will not be erased, it will remain ours’.
‘As a Catholic and deeply believing as I am, I would like to have as much spiritual accompaniment as I can, doing whatever it takes to get the best out of the other life. I would like to do this with my family, with my spiritual father if he will be there, and with those who have shared my journey loving me’.
‘I will, however, leave a letter for each of my family members, so that in time they can accept and understand my choices, my way of life’.
3.4. Fourth Thematic Area: Opinions on the Death Education Course
‘It was an important experience of reflection on death. It is a subject on which one never dwells’.
‘It was interesting and unusual, we rarely talk about death and reflect on these issues. I was struck by the fact that we talked about illness and living wills, which are absolutely unusual topics. The idea that most impressed me is the close link between life and death’.
‘I lived the proposed experience with interest and great emotional involvement. I felt shaken internally because I seem to have become even more aware of my limits, but also of my resources. I became aware that I am small and alone, but also that I need others, especially spiritual friends’.
‘I lived this experience of DeEd with great interest. Even if I keep my distance from this topic, I have reflected on the different topics trying to understand what I agree on among the many things that have been said and done’.
‘At first I lived this experience with fear, then I realised that I had been thinking about these problems for a long time, but without having ever made them explicit to anyone. It is important to be able to confront these problems. I think I have made a decision about how I will manage the end of my life, but I do not know if my thoughts will remain the same if I have a negative experience’.
‘It was an educational experience that allowed me to reflect. It was all very intense because we tried to remove the censorship that characterises Western culture on the themes of death. The experience of DeEd was partly a revelation, partly a confirmation of my personal opinions, but I have never spoken about them before. All this has given me serenity and clarity’.
‘Thanks to this meeting of death education, I learned that there are palliative cares that can soothe my suffering. I did not know that. Knowing this thing has given me serenity and also increased my sense of freedom because now I know that I can stop the treatment and I can resort to terminal sedation’.
‘It was definitely a highly formative experience. It confirmed my beliefs about death and the meaning of life. Living life with the awareness of a finite and limited time gives a greater awareness and commitment to realise our projects and experiences. I think it is important to give the same awareness to the children, too’.
6. Limitations and Future Perspectives
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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Testoni, I.; Palazzo, L.; Calamarà, N.; Rossi, G.; Wieser, M.A. “Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives. Behav. Sci. 2021, 11, 6. https://doi.org/10.3390/bs11010006
Testoni I, Palazzo L, Calamarà N, Rossi G, Wieser MA. “Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives. Behavioral Sciences. 2021; 11(1):6. https://doi.org/10.3390/bs11010006Chicago/Turabian Style
Testoni, Ines, Lorenza Palazzo, Nicoletta Calamarà, Gabriella Rossi, and Michael Alexander Wieser. 2021. "“Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives" Behavioral Sciences 11, no. 1: 6. https://doi.org/10.3390/bs11010006