This chapter provides an introduction to rehabilitation ethics. We begin by presenting a fictitious case study that serves to illustrate how ethical considerations can arise in the context of rehabilitation care (Case Study 93–1). We then briefly define ethics and distinguish it from related concepts, before identifying four key sources of ethical challenge in rehabilitation practice. These ethical challenges are illustrated in reference to the case study. Finally, we canvass ethics resources that can help support the professional judgment of rehabilitation clinicians in situations of ethical uncertainty or disagreement.

Arising from its origins as a philosophical discipline, ethics focuses on the elaboration and discussion of right, good, or virtuous actions and the values and principles that underlie them. Ricoeur has expressed that “the aim of ethics is the good life, with and for others, in just institutions.”¹ This vision of the purpose of ethics helpfully illustrates some key features of ethics in the context of health care: A central “aim of ethics” is to promote and sustain attitudes, practices, and policies that are judged to be exemplary or laudable.² Ethics focuses on the “good life”; although there are multiple and competing interpretations of what counts as the right or good way to live.^3,4 Ethical frameworks share a commitment to seeking to identify and advance the right and the good, even the virtuous life.⁵ In health care contexts, the latter parts of the quote from Ricoeur are especially salient. Ethics is particularly concerned with relationships, with what each person owes to others and how we act “with and for others.”⁶ Such interactions include relationships with patients and with other members of the health care team. Ethical relationships are further influenced by the structure and form of “just institutions” such as hospitals, clinics, and health systems.⁷

Ethics can be differentiated from legal and clinical standards, although these normative disciplines are related and complementary in important ways. First, laws compel obedience to established standards, and do so through the possibility of sanctions. In contrast, ethics encourages and seeks to support high standards through an attention to ethical rights and duties, consequences of actions, virtues or the development of moral character, and an awareness of the values at stake in a particular situation. These features reflect three main families of ethical theories in the Western tradition: (1) deontological ethics that focus on the ethical rights and duties that human beings have toward each other, (2) consequentialist ethics that are concerned with the consequences of actions on human welfare and happiness, and (3) virtue ethics that are centered on the virtues that human beings must develop in order to act in an exemplary manner.²

While clinical standards often take account of ethical considerations (e.g., in respects to privacy or scope of practice), they are primarily focused on what is “right” or “good” from a technical perspective, rather than a normative one. Ethics and ethical analysis, therefore, make distinctive and important contributions to health care practice that are interrelated with legal and clinical standards without being reducible to these other approaches. In this way, ethics provides a unique and complementary lens to guide clinicians’ attitudes, decisions, and actions.

In the case of Mrs. Belawan, clinical standards provide guidance on how to assess the risk of aspiration and tailor treatment recommendations to minimize these risks. However, from a legal perspective, Mrs. Belawan has the right to refuse to follow the team’s recommendations. An ethics perspective here can offer insight as the rehabilitation team seeks to navigate this contested and challenging situation. It draws attention to considerations from the perspectives of ethical rights and duties (deontological ethics), likely consequences for different people involved or affected by the situation (consequentialist ethics), and questions of virtuous action and moral character (virtue ethics). Ethical analysis will also lead clinicians to consider the values and beliefs of Mrs. Belawan and her family.

Sources of Ethical Guidance

A key challenge for ethics is to articulate and assess the sources of guidance to support judgment and careful appraisal of what values are at stake in a situation. Such guidance should also support individuals to get their moral bearings in situations of uncertainty or disagreement. Clinicians, managers, patients, and others may draw on a range of ethical reference points.

An assessment of what duties are held in respect to a particular situation so as to respect the rights of patients is critical. For clinicians, these may include duties of care, obligations to protect patient safety and confidentiality, as well as to uphold the patient’s dignity, amongst other commitments. Such ethical duties may be articulated in codes of conduct or codes of ethics. This ethical perspective has its roots in deontology, a duty-based ethics associated with Emmanuel Kant⁸ (contemporary work in this tradition includes Dworkin,³ Rawls,⁹ and Nussbaum¹⁰).

Ethical analysis can also focus on the assessment and weighing of likely consequences. This way of thinking about an ethical issue derives from consequentialist or utilitarian ethical theory, and has its origins in the work of Bentham¹¹ and Mill¹² (recent influential authors in this tradition include Singer⁴ and Smart¹³). From a consequentialist or utilitarian perspective, the good action is broadly viewed as the one that optimizes outcomes and minimizes the losses for the well-being and the happiness of the most people.

In seeking ethical guidance, clinicians may also look to moral role models. Examples of such role models may include individuals whom they judge to be exemplary in terms of their attitudes and conduct. Clinicians may seek to emulate these role models’ actions or dispositions, or to ask them for guidance when they are unsure of what is ethically justified. In so doing, they adopt a vision of ethics that is inspired by the ethics of the ancient philosopher Aristotle¹⁴ (contemporary accounts of virtue ethics include MacIntyre,⁵ Foot,¹⁵ and Hursthouse¹⁶). Additionally, virtue ethics encourages clinicians to consider the values of patients and their own professional values in order to guide their actions. In doing so, interventions will have the potential to be meaningful to both patients and professionals.¹⁷

Ethical analysis may also be guided by attention to mid-level principles such as familiar biomedical ethics precepts of respect for autonomy, beneficence, non-maleficence, and justice.¹⁸ Other principles include fidelity and reciprocity. It is often fruitful to examine a challenging ethical situation using multiple ethical lenses.^2,19 Examples of this include considering the case from the perspective of stakeholders’ rights and duties, consequences, virtues, and values. Doing so can help illuminate different facets of a situation in a way that fosters a more rich and nuanced understanding of what is ethically at stake. This multifaceted way of exploring ethical challenges can support ethical reflection and deliberation, and ultimately lead to sound ethical decision-making in practice.

When Mrs. Belawan’s situation is considered from a deontological perspective, the team would want to reach a decision and act in ways that respect her rights (e.g., her right to quality and scientifically-based care, right to information, right to refuse treatment, right to be treated in ways that protect her dignity, etc.). Following a consequentialist approach, the team would weigh the positive and negative consequences that are likely to result from different clinical options and would seek to support Mrs. Belawan’s safety and quality of life. Guided by a virtue ethics perspective, the team would take time to listen to Mrs. Belawan’s story and consider her goals, aspirations, and understanding of the situation, so that interventions are respectful of her values and beliefs. The team might also seek to uphold the four principles of medical ethics. Some implications of this approach might be the following: with regards to the principle of autonomy, the team would ensure that Mrs. Belawan has all the relevant information needed for her to make an informed decision, would not unduly pressure her, and would support her in her decision-making process. To respect beneficence and non-maleficence, the team might try to find ways to adapt the preparation of the foods that Mrs. Belawan especially values, while ensuring that the texture of the food is safe. To respect justice, the team would strive to meet Mrs. Belawan’s needs while meeting the needs of other patients, bearing in mind that similar needs require similar responses (addressing concerns of fairness and equity).

Since the mid-1980s there has been growing literature related to the ethics of rehabilitation care.²⁰ An important consensus in this domain has been the importance of recognizing ways in which the ethics of rehabilitation is different from and similar to other domains of health care. Furthermore, an effort has been made to determine what can be learned from ethical dilemmas outside of rehabilitation and what should be looked at differently in rehabilitation settings.

Rehabilitation seeks to optimize human function and incorporates attention to social, mental, and physical health and wellbeing.^21,22 Since rehabilitation has a different aim—promoting or restoring optimal functioning²³—compared to curative health care strategies, the need to account for these differences in our understanding of rehabilitation ethics should not be surprising.²⁴ As a way to illustrate the ethical terrain of rehabilitation, we will identify some characteristics of rehabilitation care and suggest how these might relate to ethical issues. As we discuss these issues, we will refer to the dysphagia case study with which we started the chapter.

The Participatory Nature of Rehabilitation Care

Rehabilitation is distinguished by its participatory nature.²⁴ Much of rehabilitation involves care that is done with or by patients, rather than to or for them. Thus, a patient who is undergoing occupational, physical, or speech therapy after a spinal cord injury will only improve if they are actively engaged in their therapy sessions. Ethical challenges may arise related to the extent that rehabilitation clinicians are justified in seeking to persuade patients to participate.

Extreme efforts at persuasion or coercion are ethically problematic. This connects with the nature of informed and free consent in rehabilitation. It is more likely to be a continuous and ongoing process due to the evolving nature of care, and also the evolving sense of identity and capacity for decision-making.²⁵ This is especially true for patients who have experienced a sudden disabling condition or who are experiencing a slow deterioration in their functional abilities due to a degenerative condition. The participatory nature of rehabilitation care also gives rise to opportunities to adopt a shared decision-making process with the patient (and, potentially, their family) with regards to setting functional goals and objectives for social participation. It is worth noting that while families can be extremely important sources of support for patients, ethical challenges may also arise such as if families seek to override the patient’s own wishes.

Ethics in rehabilitation seeks to enhance patient collaboration and self-determination. Commentators have argued that the nature of rehabilitation care invites an understanding of patients as experts regarding their own health care experiences and needs, and as partners with clinicians.²⁶ This approach is in counter-distinction to more paternalistic models in which clinicians presented themselves as the sole experts regarding patients’ health and health conditions.

Informed, free, and continuous consent is a central consideration in the case of Mrs. Belawan as she refuses to follow the recommendations of the team to modify the texture of her food. Her active participation in the discussions regarding this issue is required. She also has to know the risks that it entails, and the implications of her choice on herself and others (such as her children). The participation of Mrs. Belawan’s daughters in this decision-making process should also be handled respectfully and carefully: the team should seek to learn more about the current family dynamics and power relationships, while, if acceptable to Mrs. Belawan, encouraging their full participation into the process. In short, the important thing here is to avoid a paternalistic approach and involve Mrs. Belawan and her family as much as possible in these decisions that, after all, are most consequential for Mrs. Belawan.

Rehabilitation Teamwork

According to Blackmer, rehabilitation places a “premium on teamwork to help a patient achieve his or her goals” due to “its emphasis on maximizing a patient’s physical, emotional and psychosocial wellbeing and independence.”²⁷ The nature of teamwork in rehabilitation care tends to involve a wider range of clinicians and take on a more horizontal (less hierarchical) form of collaboration than in many other contexts. Although not unique to rehabilitation, these facets of rehabilitation teamwork can render it either a support for ethical patient care, or can be a source of ethical challenge.²⁸ With a wide range of perspectives and professional expertise within a team, patient care in rehabilitation, including ethical deliberation, can be enriched. On the other hand, the diversity of perspectives can lead to challenges. Patients and families, for example, may be more likely to get mixed messages if team members disagree, especially if team coordination is weak. Teams may also revert to a form of “group think” that undermines the potential for problem solving and creativity.²⁷ Teamwork can also bring forward issues of professional boundaries in care, when some of the roles of professionals could overlap. Such a situation can lead to disagreement over the right modalities to use, or the most appropriate progression of steps to attain or maintain functional gains.