In his celebrated book Being Mortal: Illness, Medicine, and What Matters in the End Atul Gawande writes:
People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives. (Gawande 2014, p. 155)
Reading through Gawande’s well researched book and also taking into account other studies of what matters in the end of life and what type of situations can lead patients to express a wish to die (Müller-Busch 2015), we end up with a list like this:
Intolerable pain. Not being able to breathe. Constant nausea. Leaking urine and faeces. Not being able to do basic things, such as eating, going to the toilet, reading, and moving around. Becoming dependent upon or a burden to close others. Not having a place and purpose in the world any more. Losing one’s memory and sanity. No longer being in control. Losing one’s dignity.
What are these painful experiences about? What do they consist in? I would like to propose that, from a phenomenological point of view, they could all be viewed as different moods of suffering involving different levels of what the phenomenologist refers to as a being-in-the-world:
Suffering is an alienating mood overcoming a person and engaging her in an embodied struggle to remain at home in the face of the loss of meaning and purpose in life. It involves painful experiences at different levels that are connected through the suffering-mood but are nevertheless distinguishable by being primarily about (1) my embodiment, (2) my engagements in the world together with others, and (3) my core life values. (Svenaeus 2014, p. 413)
That feelings—I am using this term in an all-encompassing sense—in the form of moods are not only bodily sensations but, more importantly, make for meaningfulness by opening up a life world of objects, actions, thoughts, communication, and so on, is a thematic developed by phenomenologists such as Max Scheler, Martin Heidegger, and Jean-Paul Sartre (Freeman 2014; Solomon 2006). Different things show up in the life world because of the mood a person is in, and they do so through a certain background meaning structure, often referred to by phenomenologists as the person’s being-in-the-world. Human animals have a much richer world than other animals because the things that show up to them through moods are interwoven in patterns of meaning that have developed into what we might call a culture: a system of human-made significance that is articulated and communicated in and through a language.
Why are the phenomenological issues of mood and being-in-the-world important from the perspective of suffering and end of life ethics? Because they provide clues for understanding how physical suffering is connected to the other types of suffering which feature in the list of what may lead persons to express a wish to die: frustrated life plans and broken narratives. Many other things than physical pains can make a person suffer: to not get what you want, to get what you really do not want, to not become who you want to be, or to become who you really do not want to be, for instance. Wishes and strivings for certain goals in life are surely also forms of feelings, but as emotions they include, in contrast to pain, specific thoughts. They are ways of presenting not only the whole world but also specific states of the world as what is to be desired by the person who has them (Goldie 2000). The thoughts in question can be more or less conscious to the person having the emotions. The ways we live and embody ideals and values in life are not always very well reflected but rather subconscious. Having said this, how are we to think about a “life plan”, or a “life narrative”, and the way they can be frustrated for a person? How explicit are the goals we set for ourselves in our lives?
The most intriguing part of the phenomenology of suffering is perhaps the way a person’s suffering is both determined and potentially changeable by way of the core life values she embodies. What does this mean? If I am a concert pianist, the sudden painful inability to move my little finger is much more important to me than if I am a librarian. In the same way, finding out that my wife has been having an affair is much more devastating if I believe in life-long faithful marriages than if I believe that the ideal of monogamy is a destructive illusion. The moods we live in embody such life priorities and evaluations by the way they make things in our life appear as more or less significant to us. Charles Taylor, in Sources of the Self, analyses the way our personal beings, are built up by way of such evaluations. Most important are those priorities he calls “strong evaluations”, evaluations about the things that makes a human life worth living beyond satisfying the basic needs of food, drink, sleep, safety, love and sex (Taylor 1989, 4 ff). The moral philosopher Ronald Dworkin calls the same things “critical interests” (1994, 199 ff). These strong evaluations concern moral matters: what responsibilities I have for the life and flourishing of other persons. They also, however, concern questions about what a good life means for me and how I attain self-respect in the eyes of others:
To understand our moral world we have to see not only what ideas and pictures underlie our sense of respect for others but also those which underpin our notion of a full life. And as we shall see, these are not two quite separate orders of ideas. There is a substantial overlap or, rather, a complex relation in which some of the basic notions reappear in a new way. This is particularly the case for what I called above the affirmation of ordinary life. In general, one might try to single out three axes of what can be called, in the most general sense, moral thinking. As well as the two just mentioned—our sense of respect for and obligations to others, and our understandings of what makes a full life—there is also the range of notions concerned with dignity. By this I mean the characteristics by which we think of ourselves as commanding (or failing to command) the respect of those around us. (Taylor 1989, pp. 14–15)
In tracking the origins of the modern concept and experience of selfhood, Taylor, in addition to this preliminary outline of the territory of strong evaluations, spends considerable time articulating the importance of self-expression for our ways of being constituted as persons (selves) in the modern era. Protestantism and romanticism are his major sources in stressing the importance of spelling oneself out by way of a form of creative work (Taylor 1989, p. 374). The artist, the genius of the Romantic era, creating her works of art and herself by making her inner nature visible to us in the form of a painting or a poem, is exemplary in this regard. From this image it is not a very long leap to a model of the self—the person—as constituted by a life narrative, a model we find in contemporary cultural theory and medical ethics (Schechtman 1996). Taylor’s strong-evaluation idea about what essentially matters to us in life and how we may flourish is also consonant with research in developmental psychology about how we attain a sense and concept of selfhood together with and in the eyes of others (Rochat 2009, 86 ff). Our feelings of who we are and what matters to us in life are to a very large extent dependent on the way we connect to others and their views on us. The story of a human life is from the very beginning a narrative that attains meaning for a person in the eyes of others.
The idea that a person (a self) is a narrative obviously has to be interpreted in some metaphorical way to make sense (see many of the essays in Gallagher 2011). Human lives are not stories, written or told, in the strict sense of the word. The life of a person, however, clearly has a temporal structure by including a beginning and an end, and also a cohering structure in the way that the life must make, at least minimal, sense to the person in question and to others attempting to understand her. When we strive to understand life events involving persons we turn to stories. The narrative structure is where the cohesiveness of a human life comes from: it is not enough to have temporal continuity; one also needs to develop a narrative to explore and to show who one is (Goldie 2012; Ricoeur 1992). The question of personal identity in this extended sense is connected to the core life values we identify with. The most important values as regards self-identity are the ones Taylor identifies as demanding strong interpretation: values regarding the treatment of others; values regarding the content of a good life; and values regarding the identification of oneself as someone worthy of respect in the eyes of others (Taylor 1989; see also Taylor 1991). These three zones of core life values are interconnected, and they demand, at least to some extent, self-reflection. But core life-narrative values do not come about only through philosophical reflection; they become embodied by living in the world and sharing it with others from the very start. Strong evaluations are always dependent upon a life form, a horizon of attuned understanding that one has grown into through the support and influence of others and they can thus be more or less implicit or explicit for a person. Core life values are, nevertheless, always core life-narrative values, because they are only possible to comprehend and/or formulate by way of stories about a person’s life (Goldie 2012, Chapter 6). A human life is not a narrative but rather it is imbued with reason and coherence through stories that can be more or less true to the life of the person they are about (Goldie 2012, Chapter 7).