Navigating Moral Complexity in End-of-Life Decisions

By Karidia Karaboue

The text aims to explore the complex ethical and practical dilemmas that characterize end-of-life care. At the delicate intersection between the desire to preserve life and the duty to alleviate suffering, the research work explores a series of moral, legal and human decisions. This text, divided into three parts, therefore addresses the complexity of these decisions with the aim of providing ethical and practical guidance for those who face these daily challenges.

• Language: English
• Publisher: Tangram Edizioni Scientifiche Trento
• Release date: Feb 22, 2024
• ISBN: 9788864589367

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Karidia Karaboue

Navigating Moral Complexity in End-of-Life Decisions

Copyright © 2024 Tangram Edizioni Scientifiche

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First Digital Edition: March 2024

ISBN 978-88-6458-936-7

The Book

The text aims to explore the complex ethical and practical dilemmas that characterize end-of-life care. At the delicate intersection between the desire to preserve life and the duty to alleviate suffering, the research work explores a series of moral, legal and human decisions. This text, divided into three parts, therefore addresses the complexity of these decisions with the aim of providing ethical and practical guidance for those who face these daily challenges.

The Author

Research Fellow at the University of Campania. Of Italian-Ivorian origin, he carries out intense research activity in the field of Bioethics. In possession of various certifications obtained abroad, he attended training courses aimed at the continuous progression of his aptitude for research in the field of BioLaw. He obtained his PhD from the University of Campania and is perfecting his study path also thanks to participation in international courses, seminars and debates. He has written several essays of legal and medical-legal interest and developed research projects in teams made up of professional figures of different nationalities.

Navigating Moral Complexity in End-of-Life Decisions

Preface

The work Navigating Moral Complexity in End- of-Life Decisions aims to explore the complex ethical and practical dilemmas characterizing end- of-life care. At the delicate intersection between the desire to preserve life and the duty to alleviate suffering, I navigate a sea of moral, legal, and humane decisions. This text, divided into three parts, addresses the complexity of these decisions with the goal of providing an ethical and practical guide for those facing these daily challenges.

In the first part of my work, I delve into the analysis of the administration of analgesics with a double effect. Based on the doctrine of double effect, I examine the legitimacy of treatments that can simultaneously alleviate pain and hasten death. This section aims to untangle the subtle distinctions between intentions and consequences, emphasizing the importance of deep moral reflection in clinical practice. Through the examination of major theories of intentionality and the analysis of conditions defining the moral acceptability of an act, I seek to establish whether and how it is possible to ethically distinguish between analgesic interventions and acts of euthanasia.

The second chapter delves into the issue of terminal sedation, a practice that reduces the consciousness of the patient in the final stages of life. Examining the argument of the natural course of the disease and the distinction between ordinary and extraordinary means of treatment, this section assesses the causal responsibility and morality of decisions to suspend or not initiate life-prolonging treatments. Through the analysis of significant legal cases and the exploration of various ethical perspectives, I aim to better understand the moral foundation underpinning these practices, evaluating whether the traditionally invoked distinctions withstand critical scrutiny.

Finally, the third chapter focuses on an internal reflection, considering the role of fundamental distinctions in light of the moral psychology of agents and the relationship between moral integrity and the professional ethics of physicians. This section examines the essence of professional medical practice, its fundamental commitments, and their relation to the prohibition of practicing euthanasia. Through this approach, I aim to assess whether it is possible to reaffirm the role of fundamental distinctions based on broader considerations about the nature of medical ethics and the meaning of caring for patients in the terminal phase.

In Navigating Moral Complexity in End-of-Life Decisions, I commit to providing a comprehensive and reflective account of the ethical and practical challenges healthcare professionals face daily. My goal is not only to illuminate the complexities inherent in these practices but also to offer insights that can guide professionals towards compassionate and morally aware decisions.

CH1. Palliative Care Challenges: Between Ethics, Quality of Life, and End-of-Life Decisions

1.1 Ethics and Palliative Care: A Delicate Balance

The palliative care movement is currently experiencing a dual destiny. On one hand, there is an increasingly rooted perception that pain in the terminal phase is mostly unnecessary, to be fought and defeated with the available means if it reaches heights that seriously question the patient’s quality of life, or when the patient themselves deems such suffering intolerable. For this reason, in both practice and literature, there is a broad convergence on their utility and the necessity for them to be promoted at a political level, with their integration into national healthcare systems. Palliative care is now considered essential, even though controlling terminal pain is not their sole objective. In fact, pain relief is only a part of palliative care, which more generally involves a total care for the patient, and therefore does not limit itself to the control of physical pain. Here, the other aspect of palliative care comes into play, the aspect that in certain cases raises some problems. Palliative care, with its vocation to focus on the patient in their totality, with their physical symptoms but also their broader needs¹, aims to target the quality of the patient’s life rather than the prolongation of existence through the use of available medical technology. Essentially, palliative care may require doing nothing to unnecessarily prolong life or to keep the patient artificially alive with extraordinary treatments. While this aspect agrees with the rejection of therapeutic obstinacy, which seems to have become one of the points of convergence between secular and religious bioethics (although it is a highly indeterminate concept), in other respects, it can generate fear that palliative care may be identified with a kind of therapeutic abandonment. Moreover, the choice of the adjective palliative to designate this type of care generates in public opinion the idea that these interventions, especially when carried out at the end of life, are futile².

The connection between palliative care and the safeguarding of the patient’s quality of life, even at the cost of not actively engaging in their survival, is the problematic aspect of the now-recognized relationship between palliative care and end-of-life decisions.

Clarifying this relationship is important, as the identification frequently suggested between palliative care and end-of-life care is increasingly being contested. It is particularly emphasized that the attitude characterizing palliative care (the total care of the patient) should accompany the entire therapeutic process, from the very moment of diagnosis and even continue beyond death, in the form of help in grieving for the patient’s relatives. Although palliative care should not exclusively be end-of-life care, it tangentially touches the complex of decisions that can be defined as end-of-life decisions. The clarification of this relationship is crucial, also because the identification more often suggested between palliative care and end-of-life care is increasingly being contested. In particular, it is emphasized that the attitude characterizing palliative care should accompany the entire therapeutic process, from the very moment of diagnosis, and even continue beyond death, in the form of help in grieving for the patient’s relatives. Although palliative care should not be exclusively end-of-life care, it tangentially touches the complex of decisions that can be defined as end-of-life decisions.

What are end-of-life decisions? A possible definition suggests that end-of-life decisions indicate a set of complex and non-linear choices aimed at prioritizing the quality of life over the prolongation of survival. In this sense, palliative care and end-of-life decisions share the centrality of the quality of life as the primary goal of medical intervention. However, the use of the concept of quality of life can be problematic. It is now a well- established fact that providing a single definition of quality of life that is universally applicable is still a controversial issue. The internal perspective of the individual assessing their life determines a subjective judgment on the quality of their existence, dependent on moral and metaphysical assumptions, and therefore open to a plurality of definitions. Even if there were agreement on a set of goals that human beings should achieve during their lives, the viable paths leading to the realization of these purposes could be multiple. Unless one embraces the ideal of an intrinsic good of human nature and its dignity, to which actions must conform, even regarding the paths to take to realize this good, the subjective viewpoint cannot be considered merely descriptive³. Taking seriously the challenge of restoring centrality to the patient, their needs, and the values they hold, means taking this subjective viewpoint seriously and considering it prescriptive regarding the behaviors to adopt⁴. This is because the quality of life is judged by the life’s bearer based on standards and prospective plans that incorporate fundamental values and reflect the relationships with the world they engage in and through which life can possess a certain value. Ignoring these judgments can mean betraying the deepest commitment to the world and to the meaning of life that the patient, explicitly or unreflectively, considers rooted in their current view of the quality of their existence.

Acknowledging the multiple definitions of quality of life, maintaining a definition of end-of-life decisions as proposed can present some difficulties. Firstly, the emphasis placed by palliative care on the quality of life is often associated with the idea that palliation aims to accompany the dying person to the end, thus constituting a free zone or a protected sphere regarding the possibility of ending their life, either commissionally or omissively, at the patient’s request, if they judge their existence to lack adequate quality. This idea is summarized in the famous phrase according to which palliative care intends to preserve such quality, without either hastening or delaying the patient’s death. But if quality of life judgments are still important in this perspective, have a prescriptive function and are open to a plurality of interpretations, which may also include the request that death be hastened, then a real tension can arise between good palliative care practice and end-of-life decisions interpreted in the suggested sense.

Should we opt for a definition of end-of-life decisions that is limited to all those interventions that anticipate death and, according to the patient’s judgment, are the most rightful way to honor their subjective quality of life judgments? Such a definition would once again be problematic. Indeed, it seems doubtful that end-of-life decisions can be restricted to just these interventions. For example, advance directives are today increasingly considered a valid tool for medical staff to make end-of-life decisions in accordance with the patient’s wishes and preferences, which they can no longer articulate due to their clinical conditions.

However, the content of advance directives is not limited to the expression of preferences on the discontinuation of unwanted life-prolonging treatments but includes a broader range that may also encompass preferences on spiritual assistance, on the treatment of the corpse, and on the potential donation of organs for transplant. Could these latter decisions be discriminated against, indicating them as decisions concerning care planning and thus distinguishing them from end- of-life decisions? But such a distinction might prove excessively artificial; after all, it is undeniable that, regardless of when the advance directive is formulated, all these are preferences concerning the end of life and can lead to decisions.

But for example, how to consider euthanasia? It is undoubtedly an intervention that anticipates death – indeed, this might be an understatement, as euthanasia equates to ending human life, but there is broad convergence in considering that it should be excluded from advance directives. Descriptively, however, it falls within the scope of life decisions; the discussion on its moral legitimacy concerns the justifiability of including such a practice among the lawful end-of-life decisions⁵.

It seems, therefore, that the most promising solution is to include under the label end-of-life decisions also those decisions that contemplate the intentional anticipation of death (by omission or by action), upon the patient’s request or in accordance with previous desires they have expressed or in relation to the opinion of family members and intimates, if the patient is no longer able to express an orientation and has not left any written declaration. It will then be the task of bioethical and moral reflection to assess which of these decisions are also licit decisions. However, this solution must also take another step, recognizing the tension that can arise between palliative care and end-of-life decisions in this broader sense.

As mentioned, the core principle of palliative care⁶ rejects any form of intentional shortening of human life, although it manifests the need to do nothing that prolongs human existence beyond the necessary. The palliative care movement has always distinguished itself as strongly critical towards the technological imperative that characterizes modern medicine, for which it is permissible to do everything that can be done and therefore it is permissible to prolong life as long as possible with all available technological means. But palliative care is also an alternative to movements that demand the legalization of euthanasia as a bulwark against the medicalization of medicine and therapeutic obstinacy. Euthanasia would therefore be an option incompatible with good palliative care, as life, even the life of the dying, is essentially a pilgrimage. No doctor or nurse can ever be capable of deciding when the pilgrimage has come to an end.

In this framework, accepting death can never equate to the decision to end life; the implicit assumption seems to be that when one actively ends human life, an intentional anticipation of death is operated, while when one decides not to start or to suspend a treatment aimed only at prolonging life without contributing to its quality, one lets nature take its course and allows death to occur naturally. This is essentially one of the ways in which the distinction between killing and letting die has been established, or as it is traditionally called, the distinction between active euthanasia and passive euthanasia. This second formulation is now almost entirely abandoned; today, it is preferable to speak of a distinction between euthanasia and the suspension or non- starting of treatment, and thus framed, the distinction is indeed more intelligible. Indeed, the terms active euthanasia and passive euthanasia seem to suggest an overlap with the action and omission pair; however, suspending artificial respiration (a form of passive euthanasia) seems descriptively a real action. Moreover, maintaining the qualification of euthanasia for both behaviors is in contradiction with those views (like that of palliative care) that decisively reject euthanasia but accept that the decision not to employ means to prolong life beyond the necessary is made. Those who support these views might actually have difficulty describing their thesis as the acceptance of a particular form of euthanasia.

1.2 Between Medical Ethics and End-of-Life Choices: The Delicate Balance of Treatment Withdrawal

Not initiating or suspending medical treatment does not seem to therefore constitute an intentional shortening of human life, unlike active euthanasia⁷, which involves the injection of a lethal substance with the intention of causing the patient’s death. Why is it not intentional? Generally, two theses can be supported: