(p. 157) Second Chances: Decision Making in Pediatric Transplantation
When I first met Grace, I had the feeling of meeting an old soul. Although my job focused on helping and supporting her, I sensed that she would be the one teaching me. Grace had a way about her that seemed sweet and engaging, but also fiercely courageous, with a strength that belied her tiny frame. She was insightful beyond her years. There are some people you never forget, and Grace is one of them.
Grace was 13 years old and contending with end-stage cystic fibrosis (CF). If she didn’t receive a lung transplant, she would likely die within the year. I met her because the medical team had asked me to conduct a psychological assessment as part of her pre-transplant evaluation. Before children can qualify for the lung transplant list, they must undergo a series of evaluations (medical, physical therapy, psychological, social work) to ensure that they present as good candidates for transplant and can manage the lifelong post-surgical medical regimen.
As part of a pre-transplant evaluation, I typically meet with the child, the child’s parents or caretakers, and the medical team. My goal involves assessing the child’s psychological functioning and identifying symptoms (i.e., depression, anxiety) that could affect the child’s adjustment to the transplant process and/or that might benefit from treatment. Inclusion of the family also becomes important in the assessment process, particularly in the (p. 158) case of a child. Parents or caretakers often take charge of medications and scheduling, as well as providing the child’s primary support as he or she navigates the illness. The medical team often provides a history of the patient’s management of the illness to date, including difficulties with adherence to prescribed treatments or medical recommendations.
I decided to meet with Grace first. She was an absolute delight—warm, funny, and insightful. Grace evidenced no signs of psychopathology; she was not depressed, exceedingly anxious, or behaviorally dysregulated. She was a good student who loved spending time with her peers. Grace impressed me with her knowledge of CF and her understanding of what a lung transplant really entailed. She had grown up around other kids with CF and had watched some go through the transplant process. Grace knew kids who had done well after surgery and kids who had suffered multiple complications, even death. She understood the full implications of her decision to pursue a transplant, and she felt confident that she wanted to take that course. Grace had battled CF her whole life, and she knew that she had started to lose the fight. She wanted to receive a transplant so that she would have more time with her family. Grace described so many things she still wanted to do, including graduating, going to the prom, and becoming a nurse. She said to me, “I’m just too young to die.”
Upon meeting with Grace’s family, I discovered that they were very loving and kind, but that they were having difficulty helping Grace meet the many demands of her illness. The family had limited financial resources and four other children in addition to Grace. They described their life as both chaotic and stressful. Grace’s mother had a history of anxiety and depression. Grace’s parents often worried about losing their jobs and how they would provide for the family. Grace’s illness required adherence to a strict medication schedule, regular clinic visits, physical therapy, and overnight feedings delivered through a G tube. The family found it extremely difficult to supervise and monitor this regimen, and Grace found it challenging to manage it on her own. As a result, Grace did not receive the full “dosage” or benefits of her treatment, and she often became sicker than necessary.
The medical team expressed significant concerns about Grace and her family’s difficulty with adhering to her medical regimen. These issues had existed for many years, and Grace’s already precarious health status had deteriorated further because of inconsistent treatment. Although the team acknowledged how challenging maintaining a demanding medication and treatment schedule over the long course of a child’s chronic illness can become for families, they had to look ahead to how this pattern of nonadherence might affect the outcome of Grace’s transplant.
(p. 159) Although issues of adherence have relevance to the care of any illness, they become absolutely critical to consider when a patient is evaluated for transplant. A lung transplant does not provide a “cure” for CF; in fact, I have frequently heard transplant teams describe the process as “trading one illness for another.” Post-transplant care is complex, the side effects of the required immunosuppressants are unpleasant, and the necessity of regular medical appointments becomes a lifelong commitment. Additionally, the demand for transplantable organs far exceeds the availability. The medical team must evaluate whether a patient and her family can undertake this commitment. Although medical adherence does not guarantee a positive outcome, it offers the best way to increase the odds of a successful post-transplant course. Nonadherence ensures failure.
These issues present the pediatric psychologist with the challenge of assessing the emotional health of both the child and the family and whether or not they are ready for transplant. If barriers to adherence exist, as in Grace’s case, where does the decision point lie in terms of recommending transplant as a prudent course of action? The stakes of this decision are very high, not only for the child receiving the transplant, but also for the unknown child in some other hospital who will not receive that particular organ.
If Grace did not receive new lungs, she likely had very little time left to live. However, the question of whether she would receive a transplant had little to do with her, and more to do with her family’s difficulty caring for her complex medical needs. The team, including me, felt torn over this dilemma. At age 13, Grace could not fully care for all of her medical needs, but in developmental and psychological terms, she was as happy and well adjusted as we could expect of any teenager. Should Grace, in a sense, receive life-threatening “punishment” for the difficulties and challenges posed by her parents? If we recommended transplant, would we set Grace up for a failed post-transplant course and possibly further pain and suffering? Furthermore, if Grace received a transplant and the family was not medically adherent, would that waste the chance of another child who might qualify as a good candidate for a transplant?
In the end, after much discussion and consideration, the team came up with a solution we thought would address the importance of adherence and provide the support to Grace and her family that would maximize the chances of success. The medical team, including me, recommended that Grace receive a lung transplant. In addition, we secured approval for at-home nursing that would help Grace with her post-transplant care. We hoped that the nursing services might also assist with teaching Grace’s parents how to administer her medications on a consistent schedule and follow other medical recommendations.
(p. 160) The team had a formal meeting with Grace’s parents to discuss their concerns about post-transplant adherence and the proposed solution of home nursing care. It involved a good deal of discussion about how the nursing services might affect their family life, as well as the pros and cons of at-home care in helping Grace recover from her transplant procedure. Both Grace and her parents decided to try this arrangement.
After the decision to place her on the active transplant list, Grace received new lungs only a few weeks later. She recovered beautifully in the hospital and went home with the nursing plan in place. Despite the need for some initial adjustments, the family came to really appreciate the expertise and help of Grace’s at-home nurses. The nursing team helped her parents become more involved than ever before in Grace’s care. Grace came to her outpatient appointments regularly, and she rarely became sick enough to warrant admission to the inpatient unit. I continued to follow Grace supportively throughout the next several years. She continued to amaze me with her insight, her strength, and her appreciation of life. Sadly, Grace died of complications of her illness unrelated to nonadherence at the age of 18. The transplant afforded her five extra years of life—a chance to be a teenager. She even went to the prom.
Key ethical issues
The primary ethical issues addressed in this vignette involve beneficence/nonmaleficence and respect for people’s rights and dignity. In mental health treatment, psychologists seek to help others and to avoid harm. Specifically, the principle states that psychologists “safeguard the welfare and rights of those with whom they interact professionally and other affected persons.” During a pediatric transplant evaluation, the duty of the psychologist focuses on assessing the patient and the patient’s family to determine if any mental health difficulties might serve as barriers to transplant adjustment and adherence to post-transplant care. Thus, a primary consideration lies in addressing the needs of the patient and the patient’s family.
The principle of beneficence guides psychologists to ask the following questions: How can I best help my patient? What are the wishes of the patient? Is the patient willing and able to manage the transplant process? In pediatric transplantation, this necessitates evaluating not only the child for mental health symptoms, but also the parents/guardians. If there are psychological symptoms that interfere with daily functioning and/or the ability to manage the (p. 161) demands of the medical illness, mental health treatment is often recommended. Because the family is so crucial to the care of a pediatric patient, supportive intervention for parents can often be quite helpful.
Benefitting others and doing no harm in transplantation means thinking beyond the needs of the patient. Transplant teams must also remain aware of the larger context of the transplant process. This involves consideration of those patients whom you do not see in your care, the other potential transplant recipients who wait as competitors for the same organ. I have heard physicians comment that “saying yes to one patient means saying no to another.” The limited supply of available organs creates a situation in which decisions must be made that benefit the transplant community as a whole. Thus, the team seeks to provide organs to those patients who will “take care” of the organ by adhering to the medical regimen and maximizing the odds of success. Additionally, the maxim of doing no harm is considered in the evaluation of a patient who may not be willing or able to manage the post-transplant process. If patients do not take their medications or attend follow-up appointments, the likelihood of organ rejection, illness, and death is greatly increased.
The principle of respect for people’s rights and dignity also applies to Grace’s case. Although pediatric patients are legal minors and their parents have ultimate decision-making authority, it is important to deeply consider the wishes of the child with regard to a transplant. The decision to pursue a transplant affects children at the most basic level—they experience the surgery, bear the scars, take the medications, and endure the discomfort and pain. We have an ethical duty to attend to children’s experience and understanding of their illness, and to fully explain the transplant process and post-transplant care at a developmentally appropriate level.
This principle is also evident in the informed consent process. The goal of informed consent before a psychological evaluation is to provide patients with information on the assessment process and how the information they provide will be used. This respects patients’ rights and allows them to determine if they would like to proceed. In the case of a transplant evaluation, patients are told that the team is attempting to determine if they are appropriate transplant candidates at that point in time. Generally, I provide patients and their families with a rationale as to why the evaluation is important—namely, the team wants to avoid potentially dangerous complications and optimize the chance of success.
As a psychologist on the team, I saw my role as that of identifying psychological symptoms that might negatively affect post-transplant adjustment. If the evaluation did yield significant psychological symptoms, such as depression, I would recommend appropriate services to help address these difficulties. It is (p. 162) conceivable that patients might be denied immediate placement on the transplant list because of psychological concerns (i.e., depressive symptoms that are negatively influencing adherence behaviors). These symptoms would then require attention before the patient was placed on the transplant list.
The standard highlighting boundaries of competence also has relevance to this case. In order to provide competent psychological services in a pediatric medical setting, one must receive training in child development and the assessment and treatment of childhood psychiatric disorders. In addition, it is important to garner supervised experience working with medically ill patients, specifically the transplant population. In order for psychologists to make appropriate and clinically indicated recommendations to the pediatric patient, they must have knowledge of the symptoms and sequelae of the medical illness and its associated treatments. Adequate training helps to ensure that a psychologist is competent to assess and treat a specific medical population. Without this experience, it would be challenging for a psychologist to fully appreciate the psychological toll of chronic illness on patients’ quality of life and/or provide comprehensive assessments of patients in this specialized population.
Finally, it was important for me to consider the ethical standard regarding the bases for my professional judgments in this case. In making recommendations to the team about a transplant, it is important to carefully consider the information relevant to the case and to make determinations based on objective data. However, objectivity can be challenging when one becomes attached to the patient and witnesses him or her struggling with a life-threatening illness.
In Grace’s case, I assessed her for transplant and then followed her supportively while she was an inpatient before, during, and after her transplant. Would I have been able to do this had the team not found her to be a candidate for transplant? My best answer is, “It depends.” In most cases, I have found that I can continue to work with the child and the family to provide assistance with coping and adjustment while they are admitted to the inpatient unit (they may also have an outpatient therapist in the community). Often, the decision by the team to delay transplant is not a permanent judgment, but an opportunity to address factors, such as nonadherence, that might be impeding a transplant at that point in time. The spirit of the evaluation is one of teamwork and of collaboration between the medical team and the patient, which lends itself to an ongoing therapeutic alliance.
In a related vein, would it be possible to assess patients for transplant if the psychologist had already met them in a clinical capacity through his or her work with the medical team? Often, a psychologist works for a particular service (i.e., the pulmonary service for CF patients), and he or she follows (p. 163) inpatients from this service at various points in time. Therefore, it may be possible for a psychologist to have met the transplant candidate for supportive inpatient work before being asked to evaluate him or her for transplant.
In these cases, close clinical supervision and the team approach can prove quite helpful. Supervision or peer consultation can help the psychologist assess and evaluate the factors most relevant to proceeding with transplant. Supervision can also help the psychologist process the complex feelings that arise when participating in such a weighty decision-making process. Furthermore, it is important to keep in mind that psychologists do not make the ultimate decision about transplant; rather, they provide consultation to the transplant team about psychological issues that have the potential to negatively affect post-transplant adjustment. Medical teams make decisions about transplant through consideration of a multitude of medical, psychological, and psychosocial factors. Ideally, the team works closely together to integrate these various areas to provide the best care for patients.
Consulting as a psychologist on a transplant team involves working closely with other medical professionals in a hospital setting. The approach taken is one of collaboration and sharing the information and insights of one’s specialty area to inform patient care. Transplant evaluations usually occur in an inpatient unit or in an outpatient office in the hospital. Ongoing supportive treatment most often takes place while the child is hospitalized. This overall approach differs from traditional outpatient therapeutic intervention, which tends to be a more solitary endeavor.
A psychologist working as part of a transplant team must also become knowledgeable about the nature and course of the illnesses that can lead to transplant, as well as with the transplant process itself. It is important to be aware of the types of medications patients take, as well as common side effects. For instance, transplant patients often take steroids to help the body accept the transplanted organ. Steroid medications can affect mood; this should be taken into account when post-transplant adjustment is assessed.
In general, working within the context of a busy medical setting challenges psychologists to be flexible, team-oriented, and both clear and efficient when expressing their clinical opinions to other medical professionals. The hospital environment also requires a certain comfort level with the signs and symptoms of medical illness; for instance, I have been in the middle of meeting with a patient when a staff member needs to draw blood or quickly examine the surgical site. My training opportunities prepared me for these moments, and (p. 164) regular supervision/consultation helps me process the emotions that often arise when I am working with a seriously ill child.
I consider myself very fortunate to have had the opportunity to work with children and families contending with life-threatening illness and the experience of transplant. My interactions with these children have been a gift, and I often feel as if I am learning unexpected life lessons. At times, however, I have felt overwhelmed—nervous about the gravity of the process and my ability to help patients through it. I felt all of these things in my work with Grace.
The evaluation process required for a pediatric transplant is multilayered and complex. In adult transplant evaluations, patients who do not adhere to their medical regimen will most likely not get a favorable recommendation for transplant. Adults are considered independent agents able to make their own decisions regarding their health-related behavior. With children, so much of their adherence is influenced by their parents. In Grace’s case, I really struggled with the idea that she seemed potentially at risk for not receiving a transplant because of the challenges of her family situation. It didn’t seem fair. I think most of the team members felt this way, which led to the solution of providing extra nursing help for the family.
I have often wondered what would have happened had we not received approval for the additional nursing care or if Grace’s parents had rejected the idea. In similar situations, we have worked closely with the family to pursue every available option for support, from engaging the help of extended family members to providing further education regarding medication management to teaching various strategies designed to improve adherence. Often, it is important to listen closely to the family’s concerns about possible interventions (i.e., home nursing) and solve the problem of how to address both the family and the team’s concerns. My observation is that the intention and goal of the pediatric transplant evaluation focus on identifying those factors that might create particular vulnerability under the stress and strain of transplant, and then providing interventions to meet those needs.
Key ethical principles and standards
APA (2002): Principle A (Beneficence and Nonmaleficence), Principle E (Respect for People’s Rights and Dignity), Standard 2.01 (Boundaries of Competence), Standard 2.04 (Bases for Scientific and Professional Judgments), Standard 3.10 (Informed Consent), and Standard 3.04 (Avoiding Harm).
References and Further Reading
Levenson, J. E., & Olbrisch, M. E. (1993). Psychosocial evaluation of organ transplant candidates. A comparative survey of process, criteria, and outcomes in heart, liver, and kidney transplantation. Psychosomatics, 34, 314–323.Find this resource:
Rapoff, M. A. (1999). Adherence to pediatric medical regimens. New York: Plenum Publishers.Find this resource:
Shaw, R. J., & DeMaso, D. R. (2006). Clinical manual of pediatric psychosomatic medicine: Mental health consultation with physically ill children and adolescents. Arlington, VA: American Psychiatric Publishing. (p. 166) Find this resource: