Medical decision-making in children is not a static process. In pediatrics, parents and health professionals actively participate in clinical decision-making. They always consider what is in the child’s best interest and sometimes weigh that against other considerations. As children get older, the level of participation in this process may change according to their own cognitive development and maturity level. In this article, we present a case of an adolescent with a life-limiting condition at the end of life. He wants to participate in his health management and speak for himself. He does not always prefer interventions that his parents think are best. Health care practitioners must include mature minors in the decision-making process and be willing to listen to their voices.
Decision-making at the end of life in pediatrics can be challenging for children, parents, and the health care practitioners involved. Additionally, pediatric practice is unique in that developmental maturation allows, over time, for increasing inclusion of the child’s and adolescent’s opinion in medical decision-making.1
Cultural context matters. This case takes place in Costa Rica, where palliative care is not as well developed or well accepted as in the United States. The principles of bioethics that were developed in the United States may not easily translate or be readily adopted in other countries.
The ethical principle of pediatric assent recognizes that children (especially adolescents) are capable of participating at some level in decision-making related to their care.2 So, what should health practitioners do when adolescents disagree with their parents or their doctors about their treatment? Should we search for their best interest or respect their own decisions? In this ethics rounds, we present a case of an adolescent in which this controversy is faced. We asked his palliative care physician and other experts to comment on the ethical issues raised by this case.
José is a 13-year-old adolescent from a town in Costa Rica; he developed nasopharyngeal carcinoma at age 11. His diagnosis was made after a year of recurrent otitis, headaches, and progressive weight loss. He needed to travel for 6 hours by bus from a rural area to a tertiary care center in San José. He achieved remission after initial treatment, but the cancer recurred in his cervical lymph nodes at age 12. That was also treated. Now he has metastases in his mandibular bone.
During his initial treatment, he developed severe mucositis secondary to chemotherapy and radiotherapy, with significant weight loss. A gastrostomy tube (G-T) was placed, but he initially failed to gain weight. His physicians suspected he was not using it for the supplementary nutrition recommended. During regular follow-ups, his dietician noticed he was emphatic about his food preferences by mouth and his parents were having difficulties handling his strong personality.
The oncologists concluded there was no cure available for him and they started comfort care treatment. The growing mandibular mass caused severe trismus. He was unable to eat much by mouth and received most of his nutrition through the G-T. José was upset because his G-T was leaking. He was touching it constantly and making it leak badly. Every time his nurse had to check it or change the button, he was anxious, and she had to use relaxing techniques during the procedure.
During a regular appointment, he told his oncologist: “I hate the G-T. It feels disgusting…It makes me feel so unhappy because I can’t do things by my own. Can you take it out?” His mother was supportive in his decision to remove it, but the father disagreed. His oncologists explained to him that he needed it for nutrition. José said he did not care. He just repeated he wanted to see his belly without “this thing.”
The oncology team decided to make a consultation to the hospital bioethics committee and the pediatric palliative care service. They asked, “Should we remove the G-tube [G-T], knowing that he will likely then starve to death?”
Hazel M. Gutiérrez, MD, Comment
The main dilemma for the health care team is whether José is mature enough for the team to follow his decision to remove his G-T. As health providers, we have to consider some relevant aspects of this case. First, this adolescent has been enduring cancer for >2 years of his life. It means that he has been coming and going between the hospital and his home; intermittently, he has lost school activities; he has not enjoyed a significant amount of time with his peers as everyone should do at this age; he has experienced pain from his disease progression; he has received multiple procedures; and he has borne the secondary effects of the treatment, hoping to be cured. In a way, he probably has felt angry, anxious, and fearful to lose what he had before: a normal life. When faced with a life-threatening disease, such as cancer, adolescents can suddenly be faced with an acute change in their thinking and aspirations. They may go from thinking about academic achievement, future careers, and the development of relationships to the possibility that they may not survive to experience any of those.3
Second, we do not know how much information was given to him before the G-T was placed. Did he agree with the procedure from the start? Probably not. However, the decision in that moment was made with the main goal of improving his nutritional status, and with it, his overall health, so he should have accepted it. But now, in the current context, if his disease were not cured and he has been noticing the daily growing of the malignant mass on his face, does it make any more sense for him? Maybe not. I think that any teenager who has a plastic object placed on his or her stomach that also produces a leak of gastric liquid under the clothes would experience disgust and discomfort. We have to remember that adolescence is a sensitive time regarding physical appearance, and all of this can impact adolescents’ relationships with those closest to them.3
Third, we have to consider if he is mature enough to be able to participate in his own health decisions. His parents describe him as a boy “with a strong personality,” and he vehemently expresses his choices and preferences during his daily activities. Probably, the characteristic of his personality became clear to the oncology team when he emphatically requested the removal of his G-T during his appointment despite their effort to convince him to do the opposite. The capacity for decision-making is not a fixed phenomenon but rather a process that matures with time and experience. Not all children experience life, health, or disease in exactly the same way, and each child’s personal experiences with decision-making are unique. These experiences contribute to the child’s unique capacity for decision-making.2
The best approach in this case is to acknowledge José’s request and explore the level of his understanding about his current health condition. The team should also look for the reasons involved in his decision and empathetically validate his perspective of life. The team must be willing to listen to his thoughts and feelings. For example, they should ask him, “Why did you hate the G-T? What activities do you enjoy most? Why is the G-T an obstacle for doing things on your own?” These answers will give the health professionals a whole perspective from him as an adolescent, which is different from the medicalized perspective we have been trained for. Ideally, to respect a person, it is best to know something about that person.4
It is imperative for his care team to explore the information he already knows about his disease progression and the different scenarios they may find in the future according to the complexity of his health status. They have to explain to him, without any coercion, the consequences he may encounter after removing his G-T. We have to remember that a specific difficulty of young adolescents is to foresee the long-term consequences of any choice because the capacity to reason in an abstract and long-term perspective may be hampered because of neurodevelopmental limitations.
Talking with his care team about the myths related to the nutrition and hydration at end of life will be important. In palliative care, we know that stopping eating is part of the natural process of dying. At the end of life, people do not die because they stop eating; they die because of their disease progression. In cases like this, the disease can progress slowly. That can be difficult for everyone involved. His family and the people who love him and take care of him should know that he will progressively lose weight and eventually look emaciated over time.
Given the current position of the team, the case generates an ethical dilemma because his physicians certainly know José will need the G-T in the near future, and they will probably need it to provide a safe way to feed him until his death. Maybe the team’s anxiety about how to feed José makes them feel protective. Health practitioners need to know that giving children a voice is one way of protecting them. Assent is not just a way of protecting children. It is also a way of respecting a child’s personal dignity.
For this adolescent at the end of life, the most important goal is to enhance his quality of life and give him the opportunity to enjoy his life according to his own rules; after all, it is his own body. From my perspective, if we were not able to cure him in the past and we could not avoid his inevitable death in the near future, with or without the artificial nutrition in place, at least we have the opportunity in the present to assure him our commitment to respect his own decisions.
Yuri Nakashima, MD, Comment
Nasopharyngeal carcinoma, a devastating malignancy, is much more common in China and other parts of Asia than in the Western hemisphere. Metastatic disease at the time of diagnosis portends a poor outcome. Disease progression may be rapid, with widespread metastatic disease possible throughout the body. The only hope of cure is with aggressive surgical and medical treatment. Toxicities of chemoradiation are common and distressing and include mucositis, xerostomia, trismus, caries, tissue fibrosis, hypopituitarism and hypothyroidism, stunted growth, deafness, and blindness. Thus, José’s case is fairly typical. It is a difficult disease to treat.
There is much we do not know in this case. We do not know what José has been told about his illness and prognosis. We do not know if he participated in decisions about his care up to this point and, if so, what his goals were for treatment. We do not know if he understands what will happen if the G-T is removed. We do not know if his parents really understand his situation and they have not stated their hopes or fears.
The following analysis is submitted assuming that he was informed of his diagnosis and prognosis from the beginning of his treatment and that both he and his parents know that, with his second relapse, there is essentially no more hope for cure.
José is, apparently, a bright 13-year-old adolescent. He seems to have no intellectual or neurobehavioral disability that compromises his judgment. He can understand information about his disease and condition. So, he should be told all that we know to assure that his decision is an informed decision. But is that enough?
As with many teenagers, José is concerned about body image. José says, “I hate the G-T. It feels disgusting...It makes me feel so unhappy because I can’t do things by my own.” These feelings are understandable but also puzzling. A G-T should not prevent him from doing things on his own. It should not even be visible to others. A more detailed psychological evaluation may help shed light on what José finds most distressing about the gastrostomy. They could try to figure out whether it is the G-T itself that is causing physical and psychological distress or, instead, whether José is angry about his poor prognosis and expressing that anger by refusing even supporting treatment such as nutrition through the G-T. Such treatment will likely help him reach his goal of doing things on his own.
It would be helpful to gain a little more insight into the parents’ situation because they appear to have different views on whether the gastrostomy should be removed. It seems, from the case description, that the mother has accompanied José more closely during his illness; his father may not have spent as much time with José as he had hoped because of his job and his role as the primary provider. Thus, the father may not have witnessed the suffering of José’s journey as intimately as the mother has and his understanding about the medical facts of José’s case may not be as clear as hers. Perhaps he is still hoping that his son can be cured.
The prospect of difficult-to-control symptoms is real; a plan for impeccable control must be made. Central venous access, if present, may facilitate medical interventions for the control of pain and other distressing symptoms. Subcutaneous infusions, underutilized in children, may be used for this purpose as well. Given José’s advanced disease, we would not recommend total parenteral nutrition because it may present a disproportionate burden for this young man with a poor prognosis.
If José has a clear understanding of his disease and its prognosis, understands that nutrition by mouth may be impossible (including the possibility of worsening malnutrition), and has been properly assessed and supported by the psychosocial interdisciplinary team, then the best possible solution to this tragic situation may be to endorse his autonomy, empower him, and support him. That would mean siding with his mother; counseling for the mother and father might help the father understand the reasons for this decision. José and his family should be assured that (1) he can always change his mind and (2) his doctors will still do all they can to treat pain and other symptoms.
The term “quality of life” is complex, and the best person to describe it is José, who is clearly suffering at the moment. Supporting his autonomy may facilitate other interventions that mitigate the existential distress these young people experience as the end of their life approaches.
Sabrina Derrington, MD, Comment
There are several important ethical questions embedded within this case. (1) Is it ethically permissible to discontinue medically provided hydration and nutrition (MPHN) in the context of a life-limiting disease that may not be immediately terminal? (2) To what extent should José, a 13-year-old boy, be allowed to participate in that decision? (3) How should disagreement between José and his parents, between the parents themselves, or among José, his parents, and the medical team be handled?
Uncovering the answers to these questions requires attention to overarching principles as well as contextual details. Practicing cultural humility at every point will help clinicians and bioethicists alike avoid potential pitfalls.
José has a progressive malignancy that is expected to eventually cause his death.5,6 This tragic reality sets the backdrop against which all other medical decisions for him must be considered. It is also worth noting the mechanisms by which that death might occur, namely, intractable bleeding, airway obstruction, and/or sepsis. Each of these potential complications is associated with a risk of pain, existential suffering, and additional difficult decisions about the use of life-sustaining therapies. By comparison, death from starvation and dehydration may not seem as terrible. Competent adults may choose to stop eating or to discontinue medically provided nutrition for a variety of reasons. Additional safeguards are appropriate when teenagers want to make the same decision.
Most bioethicists agree with the American Academy of Pediatrics 2009 clinical report that the withdrawal or withholding of MPHN can ethically be considered when the child is no longer receiving net benefit from MPHN because of permanent unconsciousness or profound neurologic impairment or when the burdens caused by MPHN outweigh any benefit received, as in severe gastrointestinal malformation or dysfunction, as well as “other conditions that are incompatible with long-term survival and for which significant burden is associated with continued existence.”7 José falls into this last category, making withdrawal of MPHN an ethically permissible option. However, nutrition holds special significance for many individuals, who may not think of MPHN as ethically equivalent to other forms of life-sustaining treatment, regardless of what the bioethics experts say. It is important to assess for, and be sensitive to, any personal, cultural, or religious concerns José’s family might have about withdrawing MPHN.
José clearly has a strong opinion about his G-T, but the reasoning behind his request is not entirely clear. Adolescents vary widely in their ability and desire to participate in medical decision-making, even when they have extensive medical experience. Families also vary in the way they communicate and involve their children in serious discussions and decisions, and it is dangerous to make any assumptions about what has or has not been shared. For José’s comfort, and to maintain a trusting and therapeutic relationship with him and his family, it is of vital importance to support and maintain the integrity of those relationships that are most supportive to him. With that in mind, as we consider how best to respect José’s request, it would be helpful to have some additional information. What does he understand about his condition and prognosis? Given the situation, what is he hoping for? Does he appreciate the consequences of removing the G-T, as well as the alternatives? The palliative care team is well equipped to facilitate this delicate conversation with José’s parents and then with José. They can also address José’s current pain and anxiety, answer questions he and his family may have about the experience of withdrawing MPHN, and create a plan to alleviate anticipated symptoms and ensure a comfortable and dignified death. The argument could be made that had they been involved earlier in José’s case, better symptom control and greater clarity around patient and family goals of care might have eliminated the need for this ethics consult.
José’s request for G-T removal may be a fully informed decision about life-sustaining treatment, a frustrated expression of disgust for an invasive device that disrupts his bodily integrity, or something else entirely. It is important, for his sake, to understand his motivations and address his concerns. Regardless, the ethical concerns that arise from his parents' disagreement about what to do next must be addressed immediately. This is not a decision about a highly efficacious life-saving treatment but rather nutritional support that might prolong his life in the context of an incurable, progressive cancer. For that reason, his parents should have broad discretion, and José’s preferences should carry greater weight.8,9 If José’s mother and father both supported his request to have the G-T removed, the medical team would likely proceed, although like families, individual staff members may have cultural or religious objections to withdrawal of MPHN. Because his parents differ and presumably share custody and decision-making authority, further discussion is needed. We need to know much more about each parent’s understanding of the situation and the emotions, beliefs, hopes, and fears that might be driving their decisions so that we can identify the questions and misconceptions that need to be addressed. It may be important for José’s parents to hear him express his preferences and speak about what removal of the G-T signifies for him. It is possible that a consensus may organically emerge from these discussions, but if it does not, a compromise might be reached through consideration of a trial period of maximizing anxiolytic therapies with stabilization or upsizing of the G-T to prevent leakage or alternate modes of MPHN such as nasojejunal feedings or supplemental subcutaneous hydration.
This case is a terrific example of the space in which clinical ethics and palliative care overlap and the ways in which these 2 disciplines inform each other.10 The ethical principles of beneficence and respect for persons, along with the construct of shared decision-making, provide a framework for thinking about José’s request and his parents’ responses. Narrative competence, including an appreciation for context, history, and the complexity of human relationships, offers important tools to understand and diffuse the conflict. But it is the philosophy of palliative care that in many ways makes resolution possible: a steadfast commitment to relieving suffering, physical as well as existential, and to supporting this adolescent and his family as they walk a difficult path, no matter what they ultimately decide. José’s pain and anxiety must be assessed and treated, and any spiritual or existential sources of distress must be addressed. His parents must be fully informed, their questions answered, and space and support must be given to allow them to process their own complex emotions. They all must be assured that they will not be abandoned and there are no easy answers, but a team of caring individuals will be there with them providing comfort at every step.
Outcome of the Case
Some members of the hospital bioethics committee and the pediatric palliative care team recommended to his oncologist to respect José’s decision and allow him to have the G-T removed. The team discussed that José had enough cognitive capacity and maturity to make his own decisions about his care, as he clearly understood all the information provided by the team. Also, concerns about nutrition and hydration at the end of life and how food intake is impaired as part of the natural process of dying was explained to him, his parents, and the team. At the end of the day, everyone agreed the main goal was to enhance José’s quality of life rather than just follow their own perspective as health practitioners.
After long meetings with him and his parents about the consequences of removing the G-T and the fact that it could not be replaced, his G-T was removed. His mood improved and his mouth intake increased. He was “thrilled and happy” to be able to swim and ride his bicycle with his brother without feeling the leaking on his stomach. He was more communicative with his family and his care team and he even was open to talk about his own death with his psychologist.
After 4 months of the G-T removal, he progressively had swallowing difficulties. Every time he tried certain foods, he had mild bleeding episodes because of the tumor invasion on his mouth. One day, he had a fear of choking and he refused to eat and take his pain medications pills. His parents were in real panic and the situation was so out of control that José regretted his decision. A new family meeting was quickly arranged. During the meeting, his parents were apprehensive, and they requested the replacement of the G-T. The surgeon explained again to them why the G-T could not be reinserted, but José was calm. A nasogastric tube was offered to him, but he refused it. The team had a compassionate and honest discussion with him about the progression of his disease, and they developed a plan to decrease his fears. Slowly, their anxiety just disappeared. He was started on subcutaneous pain medications, and the mouth bleedings significantly improved with only liquid and a soft diet. Eight weeks later, José died peacefully at home surrounded by his parents and his beloved brother.
John D. Lantos, MD, Comment
This case illustrates 3 crucial elements about palliative care and end-of-life decisions. First, decisional capacity is not an all-or-none thing. Teenagers have emerging decisional capacity. Careful attention to their values and preferences is crucial. But their views need not always prevail. Second, the decision in question, that is, the discontinuation of tube feeding, was at least partially reversible. Although there were technical reasons why he could not get another G-T, he could have gotten a nasogastric tube and been fed that way. Thus, stopping nutrition should be viewed as a trial of therapy rather than a decision that will quickly and inevitably lead to death. Finally, good palliative care that is consistent with a patient’s values and preferences sometimes leads to longer survival. José’s happiness at having the G-T out likely increased his appetite and will to live.
Dr Gutiérrez devised the case; Dr Lantos supervised the project; and all authors wrote a response, reviewed and revised the manuscript, and approved the final manuscript as submitted.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.