In his introduction to the equivalent of this chapter in the second edition of this book, G. R. Dunstan 1 pointed out the increasing role and understanding of ethical principles in paediatric cardiology. At that time, it might have been tempting to think that the specialty had encountered all the ethical issues it could reasonably expect to face. Not so. The last few years have seen new ethical issues emerge, and new thinking is needed. These issues include improved prenatal diagnosis, more genetic and epidemiological information, the increased use of mechanical circulatory support and a reduction of available organs for transplantation, and, with the evolution of the Internet, the rise of the expert patient or family. Interactions between physician, parents and child are complex and challenging. They have been described poetically 2 as ‘a dance with three partners’, in which the physician must learn both to lead and to follow. Ethical treatment in the context of a child within a family must take into account all relevant aspects. The physician must be aware not only of the consequences of the diagnosis but also of the quality of life after treatment, as well as its quantity. The physician must help the family understand the consequences of decisions both to treat and not to treat. As the Royal College of Paediatricians and Child Health pointed out in 1997, 3 generally the physician will ask, ‘How shall we help this baby to live?’ Sometimes he or she must ask, ‘Ought we to help this baby to live, given the means we have and the predictable outcome?’
In many countries and cultures, legal frameworks have evolved to attempt to deal with these developments and changing relationships, and these are usually expressed as changes to the rules for obtaining consent. Yet there is variation in practice, and as ethical behaviour remains, at least in part, culture-dependent, the reader is reminded that the general points made in this chapter are delivered from the perspective of United Kingdom residents with a largely European bias. We have attempted to highlight different practice where possible.
International and intercultural differences in economic and political factors also influence clinical practice, and these may have significant ethical implications over which the physician may have little control. For example, if a country has major problems with water supply, or an excessive incidence of malaria or acquired immunodeficiency syndrome, it may be considered unethical to offer treatment to children with hypoplastic left heart syndrome. Not to do so in, for example, the United States might induce the opposite interpretation. This ethical relativity must always be understood and allowed for.
Despite the evolving success of our relatively young specialty, one of the most distressing aspects of our work is the persistent uncertainty of long-term outcome. Uncertainty is very difficult to cope with, and if combined, as it often is, with a series of interventions involving considerable risk, it is not surprising that families find uncertainty stressful. The physician has to exercise informed judgement in the face of this uncertainty, in partnership with the family. 4 In every aspect of the above discussion, a key element is the relationship developed between physician and family, a relationship which must be built on trust. It is all about communication.
COMMUNICATION WITH PATIENTS AND FAMILIES
Paediatric cardiology presents specific difficulties in communication with families. Not only are congenital heart disease and its treatment difficult to understand, but the language we professionals use is beset by shorthand and abbreviations, for example, hypoplast, VSD, DORV, SVR, and so on. Even if we use these only between ourselves at the bedside, they can have the apparent effect of excluding the family, and thus lay us open to accusations of elitism or paternalism. Those of us dealing with children need to understand these problems, but as has been pointed out in an excellent recent review, 5 few of us have had any explicit training in such three-way communications. This chapter is not the place to teach the basics, and we recommend this piece of work 5 as a good foundation. Much of it is common sense. For example, making sure the environment is child- and family-friendly, peaceful and calm. Always make a point of introducing yourself. Always be well prepared, making sure you have read the notes. Ask questions, listen, share information, explain carefully with visual aids or models as needed, and always ensure that the family understands by asking them to report back to you what you have said. Good understanding is expressed by maintaining eye contact, the asking of questions, and a positive body language, such as is achieved by leaning forward. Poor understanding can be inferred from opposite behaviours. Our own anecdotal observations demonstrate the fact that even these basic techniques are patchily applied. In our own unit, we have found role-play and video analysis helpful in reversing the practice of bad communication. A key question you might ask yourself is, ‘Would this standard of care, or communication, be acceptable to me or my family?’ If the answer is ‘no’, then you should take responsibility and change your behaviour. Other good summaries of these basic aspects of effective communication are presented elsewhere, 6,7 and in the Framework of Competencies for Basic Specialist Training in Paediatrics, published in October 2004 (Available at: http://www.rcpch.ac.uk/doc.aspx?id_Resource=2429 ).
CONSENT
The principle of informed consent, aimed at the lawfulness of health assistance, reflects the concept of autonomy and decisional auto-determination of the person requiring and requesting medical or surgical interventions. 8 Evidence exists that forms of consent probably existed in classical cultures, and are certainly implied in that fundamental element of the Hippocratic oath: ‘First, do no harm’. Informed consent requires the giving of information, the certainty of the understanding of that information, time for reflection, and the actual giving of consent for the therapeutic intervention. Whilst there is variation in the mode of application of these components in different countries, particularly in the need for the signing of consent forms, which are compulsory in the United Kingdom and the United States, but not currently needed in Sweden or Belgium, the basic principles are consistent.
The concept of consent has changed over time. 9 Until the 1970s, consent was a rather paternalistic process. The doctor knew best, and was not afraid to say so, and society accepted this role. Society trusted doctors, who were perceived as figures of professional authority to whom respect was owed for their knowledge and wisdom. As decisions became more complex, and doctors less well trusted, this paternalistic model began to fade, and was replaced by one reflecting the autonomy of the patient in decision-making. This model presumes that the physician can translate his or her knowledge and experience in a manner that allows patients and families to grasp the implications and nuances of a particular decision. Sadly, this presumption has proved impossible to achieve, since as has been pointed out, 9 you would need to be able ‘to infuse the patient with the contents of a textbook and the accumulated experience of the physician’ for this really to be possible. Thus, a new model has emerged, that of shared decision-making. This model assumes that the physician and family will, and can, evaluate the available options in a systematic way, arriving at a clear and logical decision aware of the burdens as well as the benefits of treatment. The model still assumes a high degree of information availability, but more accurately reflects the realities of current practice.
There are three situations in paediatric cardiology that need to be considered in understanding the potential of the last model in our practice. These are prenatal counselling, a previously undiagnosed postnatal surgical or medical emergency, and an elective procedure to someone after regular clinical review.
Prenatal Counselling
In this situation, the family, previously happily looking forward to a new child, are suddenly thrust into a situation in which anxiety, sadness, guilt, and numbness dominate their emotions. In the midst of this psychological turmoil, they are expected to grasp the complexities of the congenitally malformed heart, acquire some understanding of the treatments and their consequences, and begin to understand concepts of risk and uncertainty, which are difficult enough under the happiest of circumstances. It is not surprising that families are vulnerable to the imposition of the preferences of the medical team involved. The impact of cultural influences on the given advice, or the response to it, has been described in the context of hypoplastic left heart, comparing religious and pro-life America with more secular and pro-choice Europe. 10 Such a societal bias to a pro-life stance means that abortion or termination of pregnancy is likely to be chosen much less frequently. This is just an example of the need to provide information in as many ways as possible to aid understanding. In fetal practice, nurse specialists, professional counsellors, and specific physicians combine to aid the family in making their decision. Most families will also search the Internet, consult friends or other family members, and require time to decide with regard to termination or continuance of pregnancy. The mother, particularly, will experience all sorts of emotions at this time. Because she lacks the medical knowledge of the physician, her assessment of risk must be even less certain than the professional view.
The duty of the doctor is not done when a factual explanation has been provided, and a request made for the mother’s consent or decision. Should things not turn out well, her burden of regret or loss will be heavier than that of the professional. It is not to her good if she adds to it a burden of guilt. Guilt may be lessened or avoided if she can feel that her decision had the warrant of the approval or support of her doctor. Certainty cannot be required. Indeed, it is unattainable. But if a doctor feels sufficiently encouraged by the data to suggest the procedure in the first place, there seems to be no reason why, without over-reaching, that encouragement cannot be shared with a responsible parent. The same consideration is apt, although it is not the only one, in discussing the option of terminating a pregnancy after the detection of grave fetal abnormality. It has even stronger force when a medical decision is taken, as licitly it may be in ethics and in law, to desist from further efforts to keep alive a severely ill baby. Doctors have to learn to live with such decisions. Parents should not be obliged to. Most teams have no problems understanding parents who opt for termination if they so wish, but in societies which have adopted a primarily pro-life stance, this may become a significant source of tension. Such tension is more evident in the postnatal emergency example.
Postnatal Medical or Surgical Emergency
In this setting, and in the absence of prenatal diagnosis, the parents are confronted with new and shocking information, and little time to decide. The cardiologist or surgeon is aware that a procedure can be performed, palliative or otherwise, which will undoubtedly permit life, but which may often form just one step in a longer-term strategy of uncertain outcome but with certain shortening of life. The doctors will know little of the family circumstances, and less of their personalities and beliefs. Information may be given, but may well be less understood than when more time is available. The family will have little time to consult elsewhere, or to conduct their own Internet research. This is a situation closer to the old paternalistic model, and places specific demands upon those obtaining consent. Attempts to transfer an understanding of risk, uncertainty, and predicted outcomes should be made, and great care must be exercised in trying not to impose treatment for which there may be little or guarded enthusiasm. Unit policy may be invoked as a rationale for treatment, but in the absence of family context, this could be interpreted as persuasion rather than consent. Again, the quality of the consent process is dependent upon a team of people, usually doctors and nurses, being willing and able to take the time to help the parents understand the problem, along with the consequences of any decision. Sympathy, care, and understanding are key elements in the process. We find it wise to think of creating a relationship which allows for questioning and mutual respect.
There is no substitute for the truth, and certainly no place for lies, yet we know that huge bias exists in the information provided to parents by physicians. 11 Physicians promote treatments that they believe work, that are done well in their own institution, and yet whose results may bear little relationship to their estimates of outcomes. Thus, both doctors and patients may base decisions on estimates of outcome and risk that may have little accurate foundation in fact. We could argue that it is like the partially sighted leading the blind. Over the coming years, we need to place the outcomes of our work into the public arena in much more interpretable and accessible forms to improve the quality of this process of consent.
Elective Treatment after Regular Review
In this situation, consent is more clearly and appropriately a chronic process, in which the family and child are gradually educated over time by their cardiologist and his or her team in the vagaries of the condition and its treatment. Such understanding evolves with exposure to echocardiography, sharing images and explanations, review of pre-prepared patient information, and, in the current era, parent- or child-driven Internet research. As an example, in our clinic only recently, a child was busy searching the Internet on his iPhone as the interview with his parents proceeded. The subsequent questions from the child were profound, searching, and relevant.
After such longer-term, chronic evolution of understanding of what is going to happen, and with the resultant greater opportunity to build a relationship, the subsequent consent to a procedure might be considered to be a formality. Sadly, this has not been our experience. Often, cardiologists have indeed taught the family the general issues associated with treatment, and the benefits and significant risks of the procedure to come may well have been covered. But the surgeon obtaining consent at a pre-admission clinic, or the day before surgery, may well be faced with a situation in which, for the first time, the family is asked to confront such specific risks as cerebral damage associated with open-heart surgery, the risk of delayed closure of the chest, mediastinitis, long stay in the intensive care unit, and so on. The obtaining of consent turns into a litany of risk, rather than a confirmation of an understood balance of risk and benefit. This becomes even more of an issue if consent is also being sought for any or several research projects, since research governance mandates specific and detailed consent for all studies. At this time, it can be very difficult for a family to see the wood from the trees. They are anxious, having thought that the procedure had been decided, and have come to terms with it. Then, suddenly, the benefits of the procedure may be lost in the welter of risk which they are forced, by the legislation of consent, to hear. It seems that the process of consent may sometimes become a burden all of its own, and great care should be exercised to avoid that. Whenever possible, time should be allowed between the consent and the procedure, allowing a period for reflection, further questioning, and confirmation of understanding. Once again, the pressures on hospitals to be efficient may make such demands difficult to meet, but in our view such difficulties should be overcome by the process of change, rather than by bad practice in obtaining consent.
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