The ethical and existential dimension of palliative care

Palliative care can be considered as an ethical response to an existential event. It is ethical because spending time and resources on people with an incurable illness is a way of “aiming at the good life, with and for others, in just institutions”, as ethics can be defined (1). It is a deliberately chosen response to human suffering that is embedded in the Hippocratic tradition and moral considerations on human vulnerability, mortality, and suffering. Moreover, palliative care as we know it is based on a specific (morally relevant) idea of what a human being is: a social being, that cannot live, thrive or survive without being connected to other human (or nonhuman) beings. In palliative care, human beings are seen as multidimensional: having a physical, psychological, social and spiritual dimension to their being in the world. This multidimensionality is the basis of the central imperative of palliative care to relieve the suffering of patients and close ones with an interdisciplinary approach. Palliative care is teamwork: it requires the collaboration of people coming from diverse educational backgrounds working together, honouring the uniqueness and autonomy of the patients and close ones.

At the same time, palliative care is a response to an existential event. Being diagnosed with an incurable illness, people are confronted with what many consider the most basic cause of anxiety in human life: their own death (2). Being confronted with one’s own death (or that of a close one) shakes the ground of one’s entire existence. It is an incomprehensible annihilation and loss of what we are most attached to: our human identity or ’self’. An event like this transcends the here and now and raises questions about the whole of one’s existence. Therefore, a confrontation like this can be called ‘existential’.

In this editorial, we will explore the ethical and existential dimensions of palliative care by discussing what they entail, why they are important for good patient care, why they can be difficult to integrate from the perspective of medicine, and how they can be understood and worked with. To begin with this, let us first return to the existential dimension of palliative care.

Human existential concerns

In the literature on the existential dimension of life, the question of death is not the only challenge we have to come to terms with as human beings (3). A second big question is the problem of human freedom. As human beings, we have free will and can, to a large degree, lead the life we want to lead. When we are confronted with the limitation of our earthly existence, however, many people are confronted with the question whether they really have led the life they wanted. The famous five regrets of the dying (4) reflect a broadly shared experience that looking back we may find that we have set the wrong priorities in life (like working too hard instead of spending time with family and friends) or discover we have an unlived life.

A third big existential theme in life is the fear of isolation. Human beings are social beings who need contact, connectedness and touch to thrive. Being diagnosed with an incurable disease sets us apart from the rest of humanity and confronts us with the fact that we are ultimately alone as human beings. Loneliness and isolation are a big cause of suffering in contemporary Western society and the loneliness of the dying (5) is no exception to this, reflecting the existential loneliness we can all feel at times.

Last, but not least, man is a self-interpreting animal (6) and primarily a meaning-seeking creature (7). Human beings cannot live without meaning as is shown by the self-inflicted death rates of those who experience a deep and long meaninglessness in their lives (8). If we do not see a point in living anymore, and a fundamental meaninglessness takes over, we are confronted with a deep existential abyss that can be a source of intense suffering.

When confronted with the perspective of one’s own death, one is catapulted into the existential dimension. And thus, while asking oneself ‘how long do I still have?’, the big life questions come up: What am I going to do now? Why me? Why do I deserve this? What is the meaning of life and death?

Why is it important?

Existential questions are not easy to respond to. Natural science has no answer or solution to them and neither does medical science. These questions ask for personal answers for which there are no guidelines or manuals. They belong to the dimension of psychology or spirituality, to the realm of social science and humanities. Is it then the task of medicine to be preoccupied with them? In palliative care, considering the interdisciplinary approach, the answer is clearly affirmative for at least three reasons: (I) total pain; (II) patient’s autonomy; (III) the therapeutic relation.

• Existential questions are part of the multidimensional tangle of causes of suffering known as ‘total pain’ (9). Finding no meaning in the situation of suffering one finds oneself in contributes to a large degree to the predicament one experiences. Thus, understanding the situation a patient in palliative care goes through, necessarily implies an understanding of the existential dimension of what is happening. Although not medical by nature themselves, existential questions are medically relevant.
• The central role of patients’ autonomy and shared decision making in palliative care puts a lot of pressure on patients. The personal answers patients give to the big existential questions of life are important orientation points for the medical decisions that are to be made. The more people are helped to tell us who they are, the more they become aware of their authentic self, the better they are likely to make decisions that align with this authenticity.
• The therapeutic relationship is an important element of a patient feeling validated, recognized, and supported. Hence to be treated by a compassionate clinician who is able to react from knowing the existential dimension of suffering in their own life, is of great importance to any patient (3). Moreover, compassion works both ways: it is not only beneficial to the patient but is also helpful for the clinician, as it includes the awareness that, as human beings, we share vulnerability, finitude, and failure (3). Compassion can contribute to alleviating moral distress among healthcare professionals (10).

Why is it so hard to work with?

Once we realize how central the ethical and existential dimensions are to palliative care, we might ask ourselves what makes them so hard to work with. One big difference between the ethical and the existential, on the one hand, and the realm of medicine, on the other hand, has already been mentioned: medicine is based on natural science, which is considered to produce objective or ‘value neutral’ knowledge and is aimed at explaining causality. This kind of knowledge allows for a univocal descriptive language. The ethical and existential, however, belong to the realm of the social sciences and humanities: they focus on understanding and interpreting the world, work with equivocal and metaphorical language, and use evaluative or normative language (3). When we really care about and for patients, the big challenge of palliative care is to bridge the gap between the different disciplines and paradigms on which these are based. Both paradigms are indispensable to address total pain, but they work in completely different ways. Let us go a little deeper into the question of why the existential and ethical dimensions are sometimes difficult to work with from the perspective of medicine, and how one can find orientation in them.

Shift from seeking solutions or answers to finding responses

The existential dimension is sometimes hard to work with because the ultimate concerns of life present themselves as polarities and even paradoxes. The confrontation with the perspective of our own death does not ask for a straightforward way of reacting. It pulls us apart in two different seemingly opposed directions at the same time. On the one hand, we are asked to accept our mortality and realize that dying is part of being human: it is a process that is built into our bodies at a genetic level. On the other hand, this realization invites us to embrace life more fully and intensely since it is finite and vulnerable. How to respond to the polarity of life and death is a personal quest every human being must go on themselves.

A similar polarity we find between human freedom and responsibility. The paradox is that if we live our lives without making choices, we will not really discover what life is about and who we are. Only by making choices and owning them, only by accepting our responsibility in the world do we take a position in and contribute to the network of other human beings we call society. We can only become a free authentic self by accepting the limitations that come with any authentic choice, because choosing one direction excludes all other directions.

Regarding the ultimate concern of isolation, the paradox is in the polarity between loneliness and connectedness. All human beings need to go through a process of separation and individuation to become an individual separated from their mother. This individuation enables connectedness with other individuals. Only if one learns to be alone and stand on one’s own feet, can one build mature and authentic relationships in which the other person is not instrumentalized to fill a deficit or compensate for an existential anxiety.

And lastly, genuine meaning in life can only be found when we are prepared to go through the process of accepting the meaninglessness of bare existence. Meaning in life is not something one can control, plan, fix or create. The experience of meaningfulness emerges as an aesthetic or ethical resonance with something or someone who speaks to us in a way that transforms our understanding of the world and ourselves.

Although all disciplines working in palliative care are confronted with the existential dimension, two disciplines are most explicitly working with the existential dimension of pain and suffering. Psychologists bring knowledge about the cognitive and emotional dimensions and schemata in the human mind that enable, complicate or block mental processes. Chaplains bring expertise in the different spiritual and religious traditions in which human beings search for meaning and connectedness in life. The knowledge of both disciplines is important and complementary. They overlap in many ways and the best psychologists and chaplains have integrated knowledge from each other’s fields. They are aware that there are no definitive answers or solutions in the existential dimension of life, but there can be an increase in awareness and a transformation towards a more authentic way of living the existential polarities of life.

An invitation to the personal, subjective, but also universal

How does all this relate to the ethical dimension of palliative care? As explained in the beginning, palliative care is an ethical response to an existential event. Ethical dilemmas do not merely come up in medical practice. In a sense, every patient may find dilemmas in themselves: more than a single voice, the human person is like a choir in which different and often conflicting emotions, thoughts, viewpoints, and convictions are present at the same time.

The ethical dimension can be hard to work with in practice because moral understandings are not fixed but can change over time, both on a personal, cultural, or societal level. In the field of palliative care, e.g., in recent decades we have witnessed discussions in many countries around the question of whether it is morally good to end suffering by intentional and active termination of life on a patient’s request. Within the field of palliative care, physician-assisted suicide is seen by some as contrary to the palliative care intention, whereas others consider it to be a step forward in the development of palliative care towards more patient autonomy. How are we to understand the dissensus around fundamental issues like this within a shared palliative care field? Does it mean that moral understandings are purely subjective or culturally relativist? Is ethics in the end a matter of personal opinion that can change over time, just like our taste in music or fashion?

The question of the foundation of ethics (‘How do we know what is morally good?’) has been discussed over many centuries in philosophy and different philosophers have come up with a variety of answers. None of these answers has been accepted universally and unconditionally. The reason for this is understandable from the perspective of the humanities: ethical reflection is an activity of the human mind, and like every other mental activity, it is dependent on psychological processes, cultural understandings and shared societal norms. What is clear and convincing in one cultural context and era is not necessarily so in another. At the same time, ethical norms do not seem to be completely subjectivist and relativist as they are deeply rooted in our biographical development and there are shared moral understandings, such as the Golden Rule (‘treat other like you want to be treated yourself’) that we find in all cultures (11).

Does this make ethics a matter of consensus, making it subjective and relativist after all? Yes and no. Ethical discussions in caring practice arise from the confrontation of different moral understandings of people who are equal in dignity. Because they are deeply rooted in the biography of people, moral understandings express what is important and meaningful to people. Moral understandings express the way people search for a meaningful life in connectedness with other human (and nonhuman) beings. The fact that moral understandings are subjective does not make them less important and sacred to the person who holds them. And thus, every ethical discussion can be seen as a common exploration of what is sacred to both conversation partners. This connects ethical explorations and discussions to the existential dimension of palliative care: they confront us with our deeply personal and shared navigation through the existential polarities of human life. They are an invitation to develop our understanding and sensitivity to the authentic responses fellow human beings have found in their search for a meaningful life.

The shared human quest to make sense of life and death

Palliative care is an ethical response to an existential event. Working in palliative medicine points beyond professional medical expertise and interdisciplinary collaboration towards a shared human quest to make sense of life and death. Exploring the ethical and existential dimension of what patients and families are going through is an ethical and existential practice itself: it touches upon the most intimate and sacred people experience in life and opens a space to explore one’s own response to the big questions of humanity. Recognizing these ethical and existential dimensions empowers clinicians to accompany patients with humility, curiosity, and moral clarity.

Acknowledgments

None.

Footnote

Provenance and Peer Review: This article was commissioned by the Guest Editors (Eva Oldenburger and Johan Menten) for the series “Multidisciplinary and Holistic Palliative Care” published in Annals of Palliative Medicine. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-97/prf

Funding: None.

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-25-97/coif). The series “Multidisciplinary and Holistic Palliative Care” was commissioned by the editorial office without any funding or sponsorship. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. Ricoeur P. Oneself as Another. Chicago: University of Chicago Press; 1992.
2. Yalom ID. Existential Psychotherapy. New York: Basic Books; 1980.
3. Guldin MB, Leget C. Loss, Grief and Existential Awareness: An Integrative Approach. London: Routledge; 2024.
4. Ware B. Top Five Regrets of the Dying: A Life Transformed by the Dearly Departing. 1st ed. London: Hay House UK; 2011.
5. Elias N. The Loneliness of the Dying. Oxford: Basil Blackwell; 1986.
6. Taylor C. Sources of the Self. Cambridge (MA): Harvard University Press; 1989.
7. Frankl VE. Man's Search for Meaning. 4th edition. Boston (MA): Beacon Press; 2006.
8. Allen AR. Meaninglessness, depression and suicidality: A review of the evidence. In: Menzies RG, Menzies RE, Dingle GA, eds. Existential Concerns and Cognitive-Behavioral Procedures: An Integrative Approach to Mental Health. Springer; 2022:261-81.
9. Saunders C. Care of patients suffering from terminal illness at St Joseph’s Hospice, Hackney, London. Nursing Mirror 1964;vii-x.
10. Crego A, Yela JR, Riesco-Matías P, et al. The Benefits of Self-Compassion in Mental Health Professionals: A Systematic Review of Empirical Research. Psychol Res Behav Manag 2022;15:2599-620. [Crossref] [PubMed]
11. Walker MU. Moral Understandings: A Feminist Study in Ethics. 2nd ed. Oxford: Oxford University Press; 2007.