PhD candidate Andrea Rodríguez Prat presents her thesis
In the context of the end of life, it is not infrequent for some patients to express the wish to hasten death as a manifestation of suffering related to multiple factors. Some studies have highlighted the importance of the sense of personal dignity and autonomy or control as related factors. However, these concepts are often used ambiguously. Maintaining a certain level of control over the circumstances is a way of reducing suffering for this loss of autonomy. However, it is unclear what relationship exists between perceived dignity and autonomy in light of patients’ experiences.
In the same way, various authors have linked the philosophical reflection and the empirical studies carried out in the field of health sciences. In this sense, medical anthropology and philosophy have grown as sciences and have reflected upon the experience of illness from the point of view of patients and healthcare professionals. In particular, phenomenology has provided valuable philosophical themes for clinical reflection and key structures to understand the world as a lived experience by an intentional subject capable of determining its meaning.
This doctoral thesis aims to examine the wish to hasten death, perceived dignity and autonomy in patients at the end of life in more detail and to reflect upon them from a point of view of empirical data and philosophical-anthropological reflection, through five studies.
The objectives of these studies were: to carry out a systematic review and meta-ethnography of the primary qualitative studies about the relationship between perceived dignity and autonomy in patients at the end of life and about the experience of the wish to hasten death from the perspective of people with advanced illness; to analyse the experience of perceived dignity and autonomy in light of the qualitative studies published from a phenomenological perspective, in particular the philosophical notions developed by Kay Toombs; to examine the contemporary notions about phenomenology and anthropology of illness and dying bearing in mind medicalisation, the values and moral assumptions of patients who express the wish to hasten death in light of the qualitative studies published about this phenomenon; and, specifically, to compare the phenomenon of voluntary stopping eating and drinking in light of the results of the qualitative studies about the wish to hasten death.
The findings point to the fact that, through the analysis of the studies about dignity and autonomy, all participants’ experiences were affected by the fact that they suffer from an illness, by the influence of the social contact and by the impact of personal identity. Based on the categories found in the systematic review, we observed that it is possible to carry out a phenomenological reflection through notions of objective-lived body and through the structure self-body-world-others.
The wish to hasten death in patients with advanced illness cannot be understood without the experience of suffering given that, this is a necessary requisite for its emergence in this population. Behind each expression of the wish to hasten death, there are reasons and meanings which allow us to understand the wish to hasten death in the patients that present it.
The analysis of the verbatims from the qualitative studies about the wish to hasten death allow us to observe a socio-anthropological dimension about the experience of suffering and dying which presupposed the attribution of a value to life in the framework of medicalisation which helps to understand from a biographical and social point of view the meaning of the desire to die.
Voluntary stopping eating and drinking can be understood as an expression of the desire to die in light of the qualitative studies about the phenomenon that should be addressed clinically as a manifestation of non-implicit suffering.
In conclusion, it can be said that dignity is perceived as a multidimensional and dynamic quality and is experienced as a form of personal identity. Analysing the experience of patients through the verbatims of the qualitative studies, from an empirical and phenomenological point of view helps to better understand the illness in terms of experience.
Furthermore, it can be concluded that the expression of the wish to hasten death in patients with advanced illness suggests a need to explore the reasons, meanings and functions attributed to this wish in order to understand the nature of this wish in each patient and to be able to design individualised care plans.
The impact of medicalisation is present in the experiences of patients who express the wish to hasten death and it regulates representations of suffering, the process of the end of life and death. Knowing and understanding these patients’ experiences, their values and their assumptions can contribute to them regaining the value that they give themselves and generate a positive impact on the social imaginary.
Bearing in mind that both the expression of the wish to hasten death and the expression of a perceived loss of dignity are influenced by various factors, developing care plans that take into account the “phenomenological perspective” as well as the biography of the patients would result in an improvement of quality of life.