Ethics in Child Health: Principles and Cases in Neurodisability

Rosenbaum PL, Ronen GM, Dan B, Johannesen J, Racine E, eds. Ethics in Child Health: Principles and Cases in Neurodisability. London, UK: Mac Keith Press; 2016 (397 pages), ISBN: 978–1-909962–63–7 Hardcover £ 39.95, € 50.00

Working for and working with children with a neurodevelopmental impairment confronts us daily with many questions of an ethical dimension. These questions concern, among others, the choice, the intensity, and the costs of treatment, as well as the task of deciding whether a certain treatment truly follows the interests of the patients and their kin. We have to answer the question how “good clinical practice” can be achieved when facing a relentlessly progressive disease course. We do not always consciously recognize these ethical questions as such but at times feel a slight unease with the sequence of events following a demanding conversation with parents or colleagues involved in the care of these children.

The volume leads us directly back to our consultation room by positioning typical clinical vignettes into an ethical framework and by repeatedly asking the question whether “good medical care” is also “ethical care.” This book is not a philosophical discourse on the principles of biomedicine or the ethics of care, nor does it give readymade recipes or recommendations of how to solve an ethical dilemma, but it encourages the reader in 31 concise chapters of respectively six to eight pages to reflect ethically on his/her professional doing. An excellent and up-to-date bibliography follows each chapter, inviting the reader to delve deeper into the relevant ethical and nonethical literature.

Remarkably the first chapter of the book “Ethics in Child Health” is written by a parent who expresses her dissatisfaction about the often unconscious tendencies of medical personnel to try to “normalize” her child rather than supporting her in her given differences. It is often the so-called noncompliant parent or families from a different cultural background who question the well-established procedures of how best to serve the interests of children in medical care. Although these children have to keep up with very demanding handicaps for which medicine often cannot offer more than a limited alleviation, their quality of life is by their own judgment often comparable to that of unimpaired children. This phenomenon, which has entered into the literature as the “paradox of disability,” is often reiterated by parents. In chapters to follow, the role of the often forgotten sibling is addressed. They are frequently asked to take on extra responsibilities for the running of family affairs. By being aware and caring for the mental and physical health of all family members, the needs of the severely handicapped child at stake can often best be served within the home setting.

Moral integrity in medicine cannot, as has repeatedly been shown in all parts of the world, be taken for granted, but it can be developed and tendered for when we make time available for “Ethical Case Conferences.” The authors describe how different stakeholder (nurses, junior doctor, social worker, managerial staff, politicians, and others) necessarily assess a certain clinical situation from their own respective viewpoint. It is only by diligently formulating their specific professional view of what they consider to be the ethically appropriate approach that a successful moral deliberation can follow. Everybody participating has the task to understand under which ethical principle the different and often conflicting positions have evolved. Final decisions should, among others, reflect the coexisting principles of autonomy, nonmaleficence, beneficence, justice, and integrity. As far as autonomy is concerned, it is reached by healthy children in a stepwise process. Children with a neurologic disease might, however, never reach the capacity for self-governance. Parents often tell us that although their children might lack decisional autonomy, they are quite capable of displaying an executional autonomy. These individual narratives should therefore be listened to carefully before a recommendation about a consequent procedure or intervention is formulated. The final aim of these conferences is to find a future course of action that will be as far as possible in line with the expectations of all the people involved. While acknowledging the difficulties on course (e.g., prognostication for the individual child), practical suggestions of how to successfully implement ethical case conferences are given.

Referring to common challenges in the neuropediatric setting (e.g., how aggressively should a cerebral palsy or a severe epilepsy be treated or how to answer to the demand for complementary/alternative medicine), the paradigm of “shared decision taking” is suggested as one of the possible answers to the multitude of propositions and the ever widening gap of what is technically feasible and what can justifiably be afforded. Withholding certain diagnostic and therapeutic procedures from a patient can, according to the authors, legitimately follow a “choosing wisely” policy if this is thoroughly and sensitively communicated to the caretakers and where possible to the patient, thereby paying respect to the individual preferences and their past experiences. As the care for children with a neurologic handicap is multidisciplinary and occurs often in health systems with sometimes very limited access to medical experts, recommendations are given of how to follow an ethical sound policy within the existing means and possibilities. Finally, we are reminded that the way in which we name and categorize a child with a neurologic disease does not only reflect our own value system but can also encourage or discourage the empowerment of the child and his/her caretaker. Telling, for example, that a child is “wheelchair-bound” bears the danger of overemphasizing the immobility at the expense of focusing on the increased access to social participation.

Although the content of the book is based on a large body of philosophical thinking, it is easy and sometimes fascinating to read. It picks you right up in your daily routine and makes you wonder how to improve. This book is recommended for therapist and doctors working in the neuropediatric field because it prompts the reader to reflect on augmenting “good clinical practice” with an ethical perspective.