CHOOSING THE RIGHT PROSTHESIS
Michelle A. James, M.D.
Many of us, as health care providers, feel that the discipline of health care ethics is esoteric, and really not relevant to our everyday practice. However, when we consider that an ethical dilemma occurs when a choice must be made but the best choice is unclear, or the people involved in making the choice disagree about what is best, we can see that all of us face ethical dilemmas regularly. Furthermore, to sort through these ethical dilemmas we all use some form of ethical analysis: a method by which the best choice in a given situation can be determined.
Health care ethics as a discipline emerged in response to the complexity of some of the health care decisions faced by patients and practitioners. Understanding and putting this discipline to use in our daily practice can help our patients and make our work more satisfying. I will illustrate how formal ethical analysis can help the health care provider, patient, and patient's parents decide which prosthesis is best for the preschool age child with unilateral congenital below elbow deficiency (UCBED).
Health Care Ethics
Health care ethics is founded on principles. These principles are general ideas that reflect our common values, as applied to the provision of health care. The principles of health care ethics include: 1
- Respect for autonomy. The health care provider respects the autonomous choices of patient or their surrogate decision-maker (for example, the parent).
- Nonmaleficience. The health care provider should not harm patients.
- Beneficence. The health care provider is obligated to act for the benefit of the patient. This principle may conflict with respect for autonomy (for instance, when what the health care provider thinks is best conflicts with what the patient or parent thinks is best) and with justice (see below).
- Justice. The health care provider treats patients fairly. This principle is the most difficult to fulfill (because health care resources are limited), and the most elusive (because the definition of what is fair is so subjective).
The enumeration of these principles gives us a starting point and a common ground, but principles do not solve ethical dilemmas. For instance, what if the parent of a preschool age child with UCBED wants a myoelectric prosthesis because of the "high tech" image and the appearance of the terminal device, but the physician thinks a body powered prosthesis with a hook terminal device would help the child's function more? Respect for autonomous choice would dictate prescription of the myoelectric prosthesis, beneficence would dictate prescription of the body powered prosthesis. Justice might direct the prescription of the less expensive body powered device, if this would choice would allow more children to receive prostheses. Ethical analysis helps balance these principles and bring them down to earth; it is a tool that provides a structured approach to decision-making, and helps us identify, analyze and resolve ethical dilemmas in clinical medicine.
One very useful technique of ethical analysis has been described by Jonsen et al, in Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine,4 This technique is based on the way clinicians approach problems. Using this method, the characteristics of the dilemma are classified into one of four categories:
- Medical Indications. The diagnosis, and the treatment options which are available and consistent with the goals of medicine, determine these. The goals of medicine include improving function, promoting health, preventing and curing disease, preventing death, and educating and counseling the patient. Treatment that does not further these goals is futile, and is not indicated. Medical indications take precedence over all other categories, at least when resources are not extremely limited. If medical indications clearly favor one treatment over another, there is no ethical dilemma.
- Patient Preferences. For children too young to choose, the parent is the surrogate decision-maker. Most children with normal cognition can make a stable, reasonable choice by age nine years.9 Even if a certain treatment is medically indicated, in most cases in health care, reasonable patient or parent preferences are honored; for instance, a parent may decide not to have their child use a prosthesis. The health care professional has no obligation to provide non-medically indicated care, regardless of patient or parent preference.
- Quality of Life Issues. Improving quality of life is the most fundamental goal of medicine, but measuring quality of life is prone to bias and fraught with inaccuracy.
- Contextual Features. These impact on the case, but do not fit into the three categories above. Funding for care is the most prominent contextual feature. Contextual features are usually, and ideally, of secondary importance to medical indications, patient preferences, and quality of life issues.
After classifying the issues of the case into these four categories, the practitioner can summarize and balance them. At this point, the best course to follow usually becomes clear.
Choosing a Prosthesis: An Ethical Dilemma
Those of us who care for preschoolers with congenital UCBED frequently encounter parents who want a myoelectric hand prosthesis for what we may perceive as the "wrong" reasons (high tech image, terminal device looks like a hand, the more expensive alternative must be better). If the physician and parents disagree about which prosthesis is best, this is an ethical dilemma. Using the ethical analysis tool described above, we will first classify the relevant issues.
- Medical indications. The "best" prosthesis for a child with UCBED is unknown. The two types of prostheses most commonly prescribed for preschoolers ready for their first active prosthesis at Shriners Hospital Northern California (SHCNC) Upper Extremity Prosthesis Clinic are body-powered with a hook terminal device, and myoelectric powered with a hand terminal device. A literature review discloses several small studies, which show that neither type is clearly superior. Both types have advantages and disadvantages. (See Table 1). 2 68357 Unfortunately, many children with UCBED abandon the use of a prosthesis altogether. For most pre-schoolers, a lightweight more durable prosthesis is desirable; therefore the available data arguably support prescription of body powered hook prosthesis as the first active prosthesis. Most practitioners caring for children with UCBED agree that pre-schoolers are less bothered by the appearance of their affected arm than parents are, but that even at a very young age, children's self-esteem is affected by their parents' negative reaction to their malformation. Patient/Parent Preferences: Preschoolers are too young to make a reasonable choice about type of prosthesis. Most parents, at least initially, prefer the "high tech" myoelectric power source, and the appearance of the hand terminal device.
- Quality of Life: The child's quality of life will be better if she learns to use her prosthesis well, which she will do best if she wears it regularly. Thus whichever prosthesis the child is most likely to wear regularly will improve quality of life most.
Contextual Features: Myoelectric prostheses cost two to five times as much as body powered prostheses. Even body powered prostheses cost more than most families can afford. If a third party payer is funding the prosthesis, they may place restrictions on the type of prosthesis prescribed, or the number of prostheses supplied during childhood. In the Shriners Hospitals system, although funding may be available for either type of prosthesis, it is not unlimited and cost cannot be completely ignored.
Medical indications support the body-powered hook, but not unequivocally. When medical indications are equivocal, patient preference and contextual features become more important. Quality of life issues support prescribing the prosthesis most acceptable to the parents, since this is the prosthesis the child is most likely to wear and learn to use well. In a system such as Shriners Hospitals, cost, as a contextual feature, supports restrictions by the payer on type of prosthesis.
Thus, ethical analysis supports allowing the parents to choose the prosthesis, with restrictions based on cost. The stringency of these restrictions will depend on the resources available. If no funds are available, no prostheses can be supplied. If available funds are sufficient to buy every child a body powered prosthesis, but insufficient to buy a myoelectric for all, the type of prosthesis prescribed may be restricted. If funds are available to supply either type of prosthesis to each child, the restrictions may be minimal. In this situation, the practitioner can ethically justify requiring parents who choose a prosthesis requiring higher maintenance to comply with those maintenance requirements. If parents choose the myoelectric hand, they are choosing a prosthesis that requires more frequent maintenance and repair. They must be able to comply with these requirements, or their child will not have the opportunity to use the prosthesis effectively. If they cannot reliably attend clinic or bring the myoelectric prosthesis for repair, their child will be given a body-powered prosthesis instead, which requires less maintenance. Similarly, if the child cannot demonstrate effective use of the myoelectric prosthesis after adequate training, she will be given a body-powered prosthesis, which is slightly more effective.
|Body Powered Hook||Myoelectric Hand|
|Precision pinch||Better fine manipulation||Worse fine manipulation|
|Comfort of suspension||Less comfortable (harness)||More comfortable (no harness)|
|Appearance||Less satisfactory||More satisfactory|
|Frequency of repair or adjustment||Infrequent||Frequent|
Luckily for the practitioner and the child (although not for the funding agency), the child will need a new prosthesis every 1-3 years, in order to accommodate growth. Each time the child outgrows a prosthesis, the practitioner can reassess the medical indications and the patient preferences, and if appropriate, change the prescription. For instance, if the parents who have trouble maintaining the prosthesis care more about the hand terminal device than the power source, their older, stronger child is a candidate for a body powered hand prosthesis.
In order to simplify the process, this analysis has been limited to the preschooler whose parents are choosing the prosthesis. A similar analysis could be performed for a situation in which an older child who has not used a prosthesis for several years requests a myoelectric prosthesis. In this case, however, the payer could be justified in making more severe restrictions, because available data (medical indications) show that a child with UCBED who has not worn a prosthesis for several years is very unlikely to become a successful user of any type of active prosthesis. In addition, ethical analysis is much simpler when a set amount of money is available to fund prostheses for a known number of children.
Ideally, ethical analysis would not be necessary to assist with prosthesis choice. If the medical indications for the various types of prostheses could be better characterized, they might determine prosthesis prescription. Better information about medical indications will require further study of function and satisfaction with the various types of prostheses available. If well-designed studies of adequate numbers of prosthesis users show that neither type proves superior, and confirm that many children with UCBED abandon the use of a prosthesis when they are old enough to make a reasonable choice, the principle of beneficence would require us to direct our efforts to the development of a better prosthesis.
Michelle A. James, M.D. Certificate in Health Care Ethics University of Washington, Seattle WA
Associate Clinical Professor of Orthopaedic Surgery, University of California, Davis School of Medicine
Assistant Chief of Orthopaedic Surgery Medical Director, Upper Extremity Prosthesis Clinic
Shriners Hospital for Children Northern California 2425 Stockton Blvd. Sacramento CA 95817 (916)453-2049 Fax (916)453-2373
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