The Need to Know: Disclosure of Information to Pediatric Patients
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Editor’s note: This column presents a problematic case that poses a medical-ethical dilemma for patients, families, and healthcare professionals. As it is based on a real case, some details have been omitted in the effort to maintain patient confidentiality. This case and discussion point out some of the complexities in treating the minor child. While agreeing with the recommendation, the editor’s comment reflects a different paradigm for approaching the issue of a requested confidentiality purposefully withholding information from the patient.
Column editor: Ferdinand D. (Nick) Yates, Jr., MD, MA, Acting Consultant in Clinical Ethics, CBHD
Should a nine-year old patient be told about her terminal medical condition?
An ethics consultation was called for assistance in the case of a nine-year old girl with a two year history of AIDS. At the time of the consultation, her disease had progressed, and it was the opinion of her physicians that she would probably die within the next six months. During the previous two years, she had multiple hospital admissions for treatment of various infections and for poor growth. In addition, she had developed chronic lung disease and required intravenous fluids for nutritional support. More recently, she had developed AIDS nephropathy that had progressed to end stage renal failure requiring daily peritoneal dialysis. She developed pneumonia, and was hospitalized with hypoxia that was compounded by the other aspects of her disease process. At the time of admission, her grandmother (guardian) requested that the patient not be told about the diagnosis of HIV or AIDS, and that information about the predicted terminal course of her disease be withheld from her. Members of the health care team were uncomfortable with this request and asked for an ethics consultation.
This case represents a “battle of good intent vs. good intent.” Everyone involved in the care of the patient sincerely wanted to act in her best interests and to optimize her quality of life while minimizing her suffering. However, individual perceptions (medical team and guardian) of her best interests were in conflict over the potential harms and benefits of disclosure of the information. It is helpful not only to summarize each relevant perception of her best interests, but also to acknowledge the relative amount of power held by each interested party (patient, grandmother, and the medical team) in deciding which party should have decisional authority. The patient was aware that she had a chronic illness, and she understood that she was experiencing kidney failure. She had spent much of the past two years in the hospital and recognized that her life was different from that of her friends and sibling. The medical team believed that the patient did not know she had AIDS because she had never used this term with family or staff. Furthermore, in the past, when she asked her mother, “What is wrong with me?” her mother avoided use of the terms HIV or AIDS. Respect for autonomy requires the medical team to provide adult patients with the appropriate information required to make decisions. For minor patients, this is not so clear, and various organizations (see references) have issued statements regarding this particular issue. With some exceptions, the American legal system does not recognize as valid the consent of a minor patient. In this situation, the legal system offered little guidance as there was no legal requirement regarding either disclosure or nondisclosure of medical information to the patient. Those who work with children recognize that the capacity for medical decision-making does not occur at a fixed point in time, but is a developmental process, that begins in early adolescence. Parents and health care professionals have a duty and responsibility to guide children to adulthood and autonomy. The American Academy of Pediatrics provides guidance (1, 2) for parents involved in the pediatric decision-making process: 1) parents should allow children to participate in decision-making commensurate with their development, 2) parents should encourage minor patients, to assent to their care whenever reasonable, 3) parents and physicians should not exclude adolescents from decision-making without persuasive reasons. But these guidelines require determination of what level of participation is “commensurate with their development”, when assent is “reasonable”, and which reasons are “persuasive”, calling for the exclusion of minor patients from the decision-making process. In our case, we are forced to decide whether the guardian or the health care professional is best able to answer those questions. The patient’s mother also had AIDS and was expected to die before her daughter. Because of the mother’s illness, the patient’s grandmother became the legal guardian. In the past, the mother noted that she wanted to tell her daughter about AIDS but did not want to “upset” her. At the time of the consultation, the patient’s mother had developed a severe, terminal encephalopathy and was unable to communicate in any meaningful way. In her role as guardian, the grandmother stated, “It is enough for the girl to know that she has kidney disease, why should you tell her that she is going to die?" The grandmother perceived the need to protect her granddaughter from “bad news” and to make her remaining time as pleasant as possible. Not only was the disclosure of a terminal diagnosis itself something that the patient should be protected from, but the specific diagnosis of AIDS, the potential stigma attached in many parts of society, and the possible realization that the patient acquired the disease from her mother, were the grandmother’s foundational reasons for withholding the information from her granddaughter. The medical team believed that the patient should be told her diagnosis and prognosis, and that all of her questions about her illness should be answered. The pediatrician was concerned that the patient was already suspicious and uncertain whom to trust; the doctor feared that she might be harmed by the air of secrecy and that continued concealment would be more harmful if/when she ultimately found out her diagnosis. Of particular concern, the setting was a teaching hospital, where the involvement of consultants, students, residents, and support services made it difficult to keep secrets. To decide on a course of action in this case, it is helpful to consider not only the possible positive outcomes that could result from either disclosure or withholding of information, but also the possible negative outcomes. These options result in four distinct medical-ethical pathways. The first option is for those involved in the patient’s care to agree to keep the information secret (to honor the grandmother’s wishes) where this course of action results in a good outcome. In this scenario, a good outcome could be defined as one in which the patient spends her remaining time free of physical or emotional suffering. Such an outcome would be consistent with the grandmother’s perception that the patient would not benefit from the bad news, and that the distress created by disclosure would be an unreasonable burden to place on a child with limited time to live. Alternatively, all could agree to keep the information secret, where this plan would lead to a bad outcome. One could imagine the patient curious but afraid to ask questions, trusting those around her but wondering why people were avoiding her concerns. To feel isolated and confused with no understanding about why people were whispering outside her hospital room could certainly be construed as suffering. Or, worse, she could overhear information about her disease accidentally, leading to feelings of anger and mistrust that would be difficult to overcome. In the third option, the medical team and family could agree to disclose the information and the disclosure would lead to a good outcome. It is often said that suffering is pain without meaning. Even at the age of 9, if a child knows that she is dying, she might have very specific things she would choose to do with her life. To allow the patient to openly discuss death, to say her goodbyes, and to have control over her remaining time would be viewed by many as a good outcome. Unfortunately, in the fourth option, disclosure could also lead to a bad outcome. When presented with the diagnosis of AIDS, it is quite possible that the patient may be aware of the social stigma often associated with the disease, and wonder whether she had done anything to bring this on herself. It is likely that once she knew the diagnosis, she would want to know how she acquired the disease, and once she learned it was transmitted by her mother, would feel anger toward and isolation from those she loves. When analyzing this case, it would have been ideal if we could choose the course that optimized the likelihood of a good outcome while minimizing the likelihood of a bad outcome. But with the information available at the time of the consultation, it was impossible to assign probabilities to each outcome and choose the course with the highest probability of a good outcome. Instead, in considering each of the positions in this ethical case, we acknowledged that either course of action – that is, either informing the patient or withholding the information from the patient – could lead to a bad outcome. We recognized that it is the person with the most at stake in the outcome, not the person with the best argument for their position, whose position we should honor.
The ethics committee recommended that all reasonable efforts should be made to honor the grandmother’s wishes. However, we further acknowledged that if the patient directly asked questions about her diagnosis or prognosis, the health care professionals would not lie or withhold information from her, and, with the grandmother and any other family or other support present, would answer her questions.
Because the grandmother’s wish was for the patient to die at home, she was discharged from the hospital with palliative care services in place, and died several weeks later. Several months later, one of the attending physicians met with the grandmother, and she stated that her granddaughter died peacefully at home – a “good’ death. The patient had not been told, nor had she asked, her diagnosis.
Song (3) suggests that confidentiality – requested or demanded – hinges on four important characteristics of the particular medical situation:
- the magnitude of the harm in question,
- the likelihood of the harm occurring,
- the existence of a real or hypothetical 3rd party, and
- the effectiveness of medical interventions regarding the medical condition. A consideration of each of these items helps to give direction to the ultimate decision regarding whether or not the patient should know her complete diagnosis.
The actual ‘harm’ of this case (as seen by the grandmother) is simply the patient’s complete knowledge of her diagnosis. At issue is the juxtaposition of the grandmother’s preference – that her granddaughter only has partial information regarding the diagnosis – and the medical team’s preference that the patient be fully informed. The medical team’s desire to exercise truth and transparency should be applauded. However, it is reasonable to assume that the grandmother has great insight into the patient’s level of comprehension and that she knows what the patient can understand regarding her diagnosis. Should the patient inadvertently discover her complete diagnosis, then the grandmother can legitimately explain her protective intent. It is possible that the patient’s complete knowledge of her condition could create ‘harm’ regarding her self-vision and thereby negatively impact medical recuperation. She might also have a diminished quality of remaining life due to knowledge of the diagnosis and the stigmata that are often associated with the condition. Concerning the likelihood of the ‘harm’ occurring, the direct intentionality of the medical team to secure this information is the primary objective, and whereas there may be an unintentional breach, the team can only be responsible for the reasonable day-to-day guarding of the information in the customary form required for routine issues of confidentiality. Regarding the other criterion, in this case, there is a clearly identified third party (the patient), for whom the medical care would intentionally be the same whether or not she knows her complete diagnosis. A caring and concerned grandmother, serving as guardian and acting in the best interest of the minor child, should be granted the decision-making authority to determine the level of medical information presented to the patient and the medical treatment plan for the patient.
- American Academy of Pediatrics, Committee on Bioethics. “Informed Consent, Parental Permission, and Assent in Pediatric Practice” Pediatrics 1995; 95: 314-317.
- American Academy of Pediatrics, Committee on Bioethics. “Pediatrician-Family-Patient Relationships” Pediatrics, 2009. 124:1685-1688.
- Song, J Y. “Genetic Testing and Confidentiality in the Primary-Care Setting. Medical Crossfire, January 2002. Vol. 4, No. 1, pp. 46-50.
Editor’s Note: This case study originally appeared in Ethics & Medicine: An International Journal of Bioethics Volume 26, Issue 2, Summer 2010, and is used by permission.