Keywords

Human flourishing has been defined as a subjective and holistic sentiment related to growth, prosperity, fulfillment, and sense of life completeness (Lee & Mayor, 2022). This definition may lead to think that human flourishing is unique to people living under privileged circumstances of health and well-being, whereas people with life limiting illnesses are deprived from this possibility.

In this chapter, we reflect on the idea of human flourishing in the context of palliative care. Although people with advanced illnesses experience in a special manner the limits of human life and vulnerability, and the final stages may inevitably imply considerable suffering, we argue that it is also possible to experience this final stage as an opportunity for personal growth, to live it in full accordance with one’s beliefs and values, and to reestablish a profound connection to oneself and to others. In sum, the end of life may also be a time of human flourishing.

1 Introduction to Palliative Care

The World Health Organization describes palliative care as an approach aimed at improving the quality of life of patients and their families who are faced with a life-threatening illness (WHO, 2000). By identifying early and then addressing patients’ needs, whether physical, psychosocial, or spiritual, palliative care can prevent and relieve suffering.

Each year, an estimated 40 million people worldwide are in need of palliative care, although only 14% actually receive it (WHO, 2000). In fact, meeting the care needs of patients with advanced disease has become one of the most important challenges facing health systems today.

Palliative care emerged during the 1960s, primarily through the efforts of Dame Cicely Saunders (1965), at a time when increasing emphasis was being placed on the role of anti-tumor therapies and medical technology. Its guiding philosophy offered a counterpoint to the then widespread view that nothing more could be done for a person with a terminal illness who was facing the end of life. In stark contrast to those who saw only the futility of curative treatment, the proponents of palliative care argued that much could still be done to address the patient’s symptoms, whether physical or psychological.

People who are diagnosed with a life-threatening illness will experience important changes in different spheres of life, and their suffering may be not only physical but also emotional, social or spiritual/existential. As their physical health deteriorates and they become increasingly dependent and aware of the proximity of death, their quality of life, as well as that of their family, will be greatly affected. In such a context, it can be difficult to hold on to the notion of human flourishing.

1.1 Challenges of Today’s World

An awareness of death and of the finite nature of life is rarely a feature of public discourse in contemporary Western societies. Indeed, in recent decades, several scholars have drawn attention to what has been called the “taboo of death” (Ariès, 2005; Han, 2021; Kellehear, 2007), while others have highlighted how overconfidence in the power of new curative treatments can lead us to see life as always within our control (Conrad, 2008).

The primacy of instrumental reason (Taylor, 1994) has also contributed to an image of human beings defined essentially in terms of their productive capacity and utility. This view has become widespread within Western societies, and many studies have shown how, among patients with cancer, the feeling of being a burden to others is one of the main reasons underpinning the desire to die (Chochinov et al., 2007; Rodríguez-Prat et al., 2019). A further consequence of the instrumental paradigm is that, in the context of aging or advanced illness, people often perceive a loss of identity and dignity (Franklin et al., 2006; Street & Kissane, 2001).

2 The Core Values of Palliative Care

You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die. Cicely Saunders

As the above quote from Cicely Saunders makes clear, what lies at the heart of palliative care is a basic recognition of personal dignity and of the need for a holistic approach capable of protecting that “you.” In his classic article entitled The nature of suffering and the goals of medicine, Cassel (1982) introduced a key definition for understanding holistic medicine: suffering is experienced by persons, and relieving suffering means helping a person to be whole again.

In what follows, and drawing on the scientific literature, we will discuss a number of key values underpinning the philosophy of palliative care that can help us understand how the end of life may also be a time to embrace dimensions of human existence that might seem incompatible with life-threatening illness. As already mentioned, the final stages of life can be the opportunity of a full experience of human flourishing.

2.1 Respect for Personal Dignity

In recent decades, the concept of dignity has come to be seen as an important value in clinical practice. Indeed, numerous publications have discussed the meaning of dignity in health care, a common view being that it is an intrinsic and irrevocable feature of human life, something that people see as part of their identity and which is influenced by a range of factors (physical, psychological, spiritual, and social) that are mediated by life experiences, including illness (Rodríguez-Prat et al., 2016).

In a quantitative study conducted by our research group, we found that a perceived loss of control and functional impairment were risk factors for both a perceived loss of dignity and symptoms of depression, with the latter two factors being the main antecedents of the wish to hasten death in patients with advanced cancer (Monforte-Royo et al., 2018). These findings led us to conclude that identifying and alleviating a patient’s functional impairment and loss of control are important for preventing depressive states, a perceived loss of dignity, and a wish to hasten death. In another study involving a total of 213 patients in palliative care (Chochinov et al., 2002a), the results of a multiple regression analysis showed that the factor most strongly associated with a perceived loss of dignity was a deterioration in personal appearance, followed by a sense of being a burden to others, needing help with bathing, requiring inpatient care, and being in pain.

When seeking to define the concept of dignity, it is also important to consider the relational dimension, insofar as how a person is seen by others (health professionals, relatives, etc.) may serve to protect or threaten that person’s sense of personal dignity. Accordingly, ensure that patients’ care needs are adequately met while preserving intimacy and privacy is important for maintaining their perceived dignity.

In a systematic review and meta-ethnography, our group analyzed the relationship between perceptions of dignity and control in patients with advanced illness (Rodríguez-Prat et al., 2016). The explanatory model that emerged from this analysis suggested that the experience of all participants was shaped by their illness experience (primarily, their functional status), the social context, and the impact of illness on their personal identity. For example, we found that the loss of physical functionality, linked to perceived dependency, was the primary mediator of a diminished sense of dignity. However, the dependency that results from illness cannot be understood in isolation from the new relationship that patients must establish with their immediate surroundings, or from the construction of a new identity characterized by the need for help. Within this model, two contrary positions were observed. Those patients who emphasized awareness of an intrinsic sense of dignity maintained a positive view of themselves, despite the distress caused by their illness. By contrast, patients whose sense of dignity was based on values such as autonomy or the ability to control their circumstances found that their dignity was undermined.

Taken together, the findings reviewed above highlight the need for health professionals to be alert to the factors that may threaten a person’s perceived dignity. As illustrated by the following two quotations, taken from studies that conducted interviews in the context of palliative care, dignified care is that which helps patients to maintain a sense of their own value as persons at a time when they might easily succumb to the stigma of illness:

Our dignity has been maintained because of the care we have been receiving in the hospital. The staff has been marvelous. They have been helping us as much as they can. I think part of dignity is trying to make him feel that he is still of value (Chochinov, 2002, p. 2253).

That they can still see me as the person I once was. Not Mrs. So-and-So, not the patient, no, “me” (Choo et al., 2020, p. 7).

What needs to be fostered among professionals, therefore, are not only technical skills but also their human qualities, an attitude of openness, empathy, and compassion, and the capacity to recognize what Arantzamendi and Centeno (2017) refer to as the intangible values of the end of life. In this context, Choo et al.’s (2020) dynamic reciprocity model of dignity, which regards patients’ sense of dignity as being inextricably connected to both family caregiving and the qualities of professionals, suggests that compassionate personalized care should be informed by what they call mindful humanity.

From the perspective of dignified care, human flourishing may occur once the sick are freed from the reductionist gaze that treats them as an object (the patient) or as a medical problem to be solved. When the focus of therapeutic intervention is the person, the you that is more than the sum of its parts, then it is possible to relieve suffering and to gain greater insight into what lies withinFootnote 1, as is illustrated by the following extract from an interview with a professional in the palliative care context:

I once had a patient who told me she was had [sic] excoriating pain and she could not sleep. The first thing that I thought of was giving her a higher dose of morphine … But then she said, can you stay with me for a while? So I stayed by her bedside, and gradually, she was able to fell [sic] asleep. I realized then, all she ever wanted was some company. This understanding was so valuable … this experience worth [sic] more money than anyone could ever give me (Ho et al., 2016, p. 443).

2.2 The Recognition of Relational Autonomy

People with an advanced illness, such as cancer, experience a heavy symptom burden whose impact may be felt in numerous ways: loss of physical control or of independence in performing daily activities, the need for help both within and outside the family, etc. In a recent study about perceived control in patients with advanced cancer, we identified several areas or issues over which they wished to have some control (Rodríguez-Prat et al., 2022). More specifically, we found that subjective well-being was better among those patients who felt they had some control over the information they received about their diagnosis, prognosis, and the impact of different treatments, over their diet, and over their physical exercise.

In recent years, increasing attention has been paid to ways of empowering patients, with studies highlighting the benefits of their being active agents in their own care and in aspects related to their beliefs and values (Link et al., 2004; Walshe et al., 2017). On an existential level, autonomy, or the capacity to decide for oneself, has likewise come to be seen as a basic ethical value in the clinical context (Monforte-Royo et al., 2018). The most extreme example of this view can be found among advocates of euthanasia, assisted suicide or medical assistance in dying, the idea being that people should have the right to decide when and how they die (Downie et al., 2021).

Alongside this defense of autonomy as a supreme value, various authors have proposed a relational concept of autonomy (Gómez-Vírseda et al., 2019; Mackenzie & Stoljar, 2000). The premise of relational autonomy is that human beings do not exist in isolation from their social networks, and thus it is impossible for an individual to make decisions that do not in some way impact not only the immediate family environment but also society as a whole. In our aforementioned study about control in patients with advanced cancer (Rodríguez-Prat et al., 2022) we found that one of the things that helped patients to cope better with their illness was to include family members in their care. Insofar as this caring relationship was accepted by both parties, the receiving of help was experienced not as something negative but as an extension of the patient’s own wishes, in this case through others. Thus, although it may appear paradoxical, human beings may be freer when they acknowledge their dependence and accept the help of others:

I believe that my life is still in my hands. The thing is … I depend more on the people around me to achieve my goals [ … ]. But hey, it’s always up to me if I want to accept people’s control over me […]. Obviously I need people to help me, […] but I’m the one who decides to do one thing or another, and they cannot make me do what others want (Rodríguez-Prat et al., 2022)

Given this, it is surely alarming that one of the main reasons given by patients with advanced cancer who express a desire to die is precisely that they feel a burden to others (Gudat et al., 2019; McPherson et al., 2007). However, as Rehman-Sutter (2015), among others, has pointed out, feeling that one is a burden to others does not necessarily mean that this is the case. In fact, the participants in our recent study said that although they did not wish to make their loved ones suffer, as they perceived this as being unbearable both for them and their family, their experience had taught them that it was possible to overcome extreme situations that they would never have imagined were surmountable (Rodríguez-Prat et al., 2022). This suggests that promoting a culture informed by the notion of relational autonomy is crucial for generating new narratives in which illness is dissociated from ideas of burden and guilt.

In the context of palliative care, the possibility of human flourishing requires increased awareness of our intrinsic vulnerability and dependence as human beings. Although the tendency nowadays is to see ourselves as isolated individuals (social atomism), capable of living without reliance on significant others (Taylor, 1994), it becomes clear at the end of life that this is not in fact the case. Authors such as Agich (1993) or, more recently, Mackenzie (2008) and Gómez-Virseda et al. (2019) have highlighted the need to include a relational perspective that both normalizes and gives rights to those individuals who, for whatever reason, are regarded as dependent and vulnerable.

Although the end of life has often been described as a series of losses (Pearlman et al., 2005; Toombs, 2004), it is necessary to ensure that patients have the means to exercise some control over what is still and should be in their hands. For example, by helping them to live in the present, to plan for the short term, to adapt to each moment of their illness, to accept what can’t be changed, to express themselves within the family or to recognize that suffering and love go hand in hand, we may enable patients to retain a sense of control over their lives. A broader acceptance of the idea of natural death might also help to foster a more realistic view of control. Life can now be prolonged artificially through medical technology, but the idea that we might end our lives sedated and unable to say farewell to loved ones has come to be seen as an undignified death—and for some it is a reason why euthanasia or assisted suicide should be legalized (Battin, 1995). It is important, therefore, to reflect on the impact that medical treatments have on patients and their families. Unless strictly necessary, medical intervention is not always for the best, especially if its consequences are to the detriment of the person’s values, beliefs, or quality of life.

A final point to consider here is that ideas about care of the dying changed radically around the 1930s, when the site of death shifted from home to hospital (Ariès, 2005; Baudrillard, 1980). As a result, the responsibility for accompanying the dying was passed to doctors, as opposed to the family or the priest, as had generally been the case previously (Ariès, 2005; Walter, 1994). Within the medical context, death and dying were redefined, insofar as the emphasis now was on health, privacy, dignity, independence, and discretion (Walter, 1994). In the process, families lost touch with the caring rituals that for centuries had been employed to accompany the dying. Once the hospital became the place where life would end, it was no longer clear to relatives or close friends how they should behave in the presence of their dying loved one, and this is often still the case today in Western societies. In this respect, a renewed engagement with the ars moriendi (the art of dying) and the ethics of care would help us, perhaps, to live more in accordance with who we are: social beings whose very nature is the need for others. As Agich (1993) points out, in the classical view of therapy it is ultimately the community that heals because the function of the therapist is to reintegrate the patient into the symbol system of the community. Fostering community awareness, that includes the perspective of families, may also, therefore, serve a healing function.

2.3 Meaning in Life

Faced with the awareness of imminent death, many people begin to reflect on the meaning of life and on what their legacy will be. When we speak of our legacy, we are generally thinking of how we will be remembered after we die, of the trace we will leave behind in others, whether family, friends, or wider society (Breitbart, 2016). Meaning in life is a similarly complex concept that has both a cognitive component (ideas, beliefs) and a volitional one (the fulfillment of useful activities), and people vary in terms of which of these has greater weight for them as individuals (Guerrero-Torrelles et al., 2016). Based on his own experience and that of others in Nazi concentration camps, the psychiatrist Viktor Frankl (1991) came to believe that meaning rests on the attitude that a person chooses towards suffering.

Psychological distress in the form of depression or demoralization syndrome is common among patients with advanced cancer, with reported prevalence rates, respectively, of 5–30% (Lie et al., 2015) and 13–33% (Ramos Pollo et al., 2018). This highlights the importance of adequate assessment so as to ensure that patients’ psychological needs are addressed. Palliative care, as a holistic approach, pays close attention to existential and spiritual issues, and a variety of interventions have been developed that take into account these more intangible aspects of human life (Cohen-Almagor, 2011; Johansen et al., 2005). These include meaning-centered therapies (including logotherapy) (Güell et al., 2015; McCormack, 1998; Saunders, 1992), measures aimed at improving perceived dignity (Chochinov, et al., 2002b; Güell et al., 2015; Monforte-Royo et al., 2018), motivational interviewing, compassion therapy, mindfulness, and resilience enhancement (Branigan, 2015). Interventions such as these can make a useful contribution to the management of physical and psychological symptoms, which are better tolerated when there is a sense of meaning. It has also been suggested that a sense of meaning or purpose in life is what enables people to retain a more hopeful outlook, even when there is no possibility of cure (Chochinov, et al., 2002a).Footnote 2

In 2016, our research group carried out a systematic review and realist synthesis of the literature on meaning-in-life interventions in patients with advanced disease (Guerrero-Torrelles et al., 2016). The review identified common elements in the proposed mechanism of action of these interventions and found that a core component was the interpersonal encounter between patient and therapist. In the context of a therapeutic conversation, patients may begin to reflect on their life, connecting past, present, and future, and redefining their identity and relationship to others on the basis of new-found meaning. This can take time, and therapists must work to create a space in which patients feel safe and confident enough to talk about important aspects of their life.Footnote 3 Gradually, however, through a therapeutic dialogue characterized by an attitude of reflection, exploration, acknowledgment, awareness, and acceptance, patients may come to find meaning in the end of life. Our review also considered the strategies used by different interventions with the aim of enhancing patients’ sense of meaning in life: these included exploring concepts and sources of meaning, encouraging a sense of gratitude for a life lived, preparing and organizing farewell gatherings with significant others, leaving an intergenerational legacy, leaving a spiritual will, and resolving past conflicts (Guerrero-Torrelles et al., 2016).

Above and beyond any specific psychotherapeutic interventions that may be offered, the focus on intangible values that lies at the heart of palliative care means that the patient-professional encounter and the use of strategies that facilitate meaningful conversations in which to reflect on the legacy of a life are an integral part of everyday clinical practice. And while the emphasis within the current medical paradigm is on latest generation therapies and the promise of bioengineering, the palliative care literature continues to highlight the importance of compassion, attentive listening, active presence, and meaning-in-life interventions (Brown-Johnson et al., 2019; Saracino et al., 2019). Contrary to the view that a point is reached when nothing more can be done for a person with a terminal illness, it is, in fact, possible to provide accompaniment and care until the very end of life.

2.4 Towards a New Vision of the End of Life: The Esthetics of Care

In the print and other media, the end of life is often portrayed in purely negative terms. A qualitative analysis of newspaper articles referring to palliative care in our country, Spain, found that they mainly concerned socio-political issues such as proposed end-of-life legislation or controversial legal cases (Carrasco et al., 2019). The authors also noted that there was rarely any description of what palliative care involved or of how it might benefit patients and families. Indeed, in both Spain and other European countries, the media focus tends to be on extreme cases of patients with incurable diseases, commonly portrayed as examples of a life without dignity in which death would be preferable to suffering (Rodríguez-Prat & van Leeuwen, 2017). Accordingly, the photographs, videos, or articles that are published often serve to encourage the view that death is a taboo and that suffering is inevitable. This equating of the end of life with suffering and a loss of meaning may be more acute in countries that have legalized euthanasia or assisted suicide (Van Brussel, 2014). Influenced by a narrative that associates the end of life with a loss of meaning and dignity, and with the sense of being a financial, emotional, and social burden, a person may indeed conclude that ending their life is the only option. But is this the only possible narrative? Might we not consider the dying process as a normal and natural stage of life? Can we, as a society, learn to tell a different story and see the end of life, too, as a time of (inter)personal connection in which meaning can be found?

In research that has explored the experiences of health professionals or volunteers in the sphere of palliative care, one often finds statements such as those below, in which life and its end are referred to as a gift, as a thing of beauty, as an encounter with something real:

But I experienced a lot of great gifts from these people, which was also very helpful for me in many ways … I think everybody has a way to shine […] it was a very moving experience and he did it [he died] with such ahh (takes time to think) beauty, it was amazing (Rodríguez-Prat & Wilson, 2021).

I worked Downtown in the oil and gas industry and found that there was no sense of reality working Downtown, so I wanted to, I guess, get more in touch about what reality is, which is here […] I guess you come down to the very bottom of things here and see that there’s a lot of goodness and there’s a lot of kindness and people make home for all different cultures (Rodríguez-Prat & Wilson, 2021).Footnote 4

As these quotes illustrate, the end of life may be experienced as a time of transformation, of great emotional intensity, and this raises a number of important questions. How is it possible for the end of life to become an esthetic experience, to be seen as something beautiful or sublime? How does palliative care relieve existential suffering? How is it that palliative care can be a cathartic experience, not just for patients but also for families and health professionals?

Barbara Carper (1978) defined four fundamental patterns of knowing in nursing: empirical, personal, ethical, and esthetic. In palliative care, the esthetic dimension is revealed through engagement with a range of profound—and seemingly paradoxical—emotions (e.g., pain and love, fragility and connectedness, loss and reconciliation) that lead those involved towards an encounter with the reality of human existence and with universal values (Siles-González & Solano-Ruiz, 2016). This kind of knowing has also been referred to as ontological evidence, and it implies that true reality can become visible in all its beauty and goodness (Eriksson & Martinsen, 2012).

Esthetic experience occurs at the intersection between sensitivity and understanding, the instinctual and the conceptual, and it is reflected in the values, feelings, and ethical and cultural principles that inform our approaches to care. If ethics and esthetics are inseparable, as is implied in the Platonic principle of “good is beautiful” (Siles-González & Solano-Ruiz, 2016), then we may experience the beauty in human life by taking care of others. Never more so, perhaps, than at the end of life, where we may encounter the esthetic dimension through caring for a sick relative, offering consolation in a time of suffering, or coming to recognize the intrinsic dignity of another person.

By shaping a new narrative that stresses the importance and possibility of living meaningfully until the very end, we may help to shift societal attitudes towards a more positive view of death. As human beings, experience teaches us that we are often capable of bearing more than we imagined, and that, perhaps to our surprise, we can be happy despite it all. The work of philosophers such as Havi Carel or Kay Toombs, both of whom have reflected deeply on the experience of illness, is illuminating in this respect. In her paper entitled Can I be ill and happy?, Carel (2007) argues that illness induces adaptability and creativity, such that a person may become able, for example, to confront loss, transcend suffering, reformulate the self, and show courage in the face of adversity. The psychologist Marie de Hennezel (1996), a pioneer in palliative care in France, has similarly written of how beauty can be found at the end of life if it is lived with awareness and intimacy. Through their writings, all three of these women bear witness to how pain and love, fragility and connectedness, loss and reconciliation may indeed co-exist, because they reflect different expressions of the same reality.

3 Summary

The premise of palliative care is that the end of life is an important stage of human experience, one in which a person has the opportunity to write the final chapter of a life lived. Enabling this requires a holistic approach that takes into account the different dimensions of selfhood: physical, psychological, social, and existential. In Table 1 we summarize some implications for practice.

Table 1 Implications for practice
Full size table

Although respect for personal dignity has come to be considered a basic human right, some have argued that, in the medical context, the concept is often used vaguely or merely as a slogan of little value (Macklin, 2003). In this respect, models of dignity in care, in which what it means in practice is more clearly set out, can help to shed light on how best to safeguard the intrinsic value of each person.

A recognition of relational autonomy is also crucial for empowering—as far as is reasonably possible—those individuals who will, inevitably and progressively, begin to lose their faculties as a result of illness. Educational and support programs in which patients and families are listened to and where they are given the tools they need to achieve all that is still achievable may help to improve patients’ subjective well-being and strengthen bonds within their immediate social environment. Similarly, providing a space for patients in which they can reflect on all that gives meaning to life, share their legacy, express gratitude for a life lived, and forgive others or ask for forgiveness may enable a sense of inner peace to emerge as they approach the end. Facilitating this dialogue, this kind of conversation between professionals (physicians, nurses, psychologists, social workers) and patients and families is an important part of palliative care, and the resulting encounter often has a transformational effect on all those involved.

Finally, it is essential to promote not only research into how to improve the quality of people’s lives as they approach the end but also a new paradigm in which death and dying are treated as a normal part of living. It is here that recognition of the esthetic dimension can help us to approach and embrace the limits of our existence, a place where love and suffering, togetherness and separation are inextricably entwined. By so doing, we may take the final step towards human flourishing, the ideal to which we aspire.