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Mary Beth Nierengarten is a freelance medical writer with over 25 years of experience. Her work appears regularly in a number of print and online publications.
It’s not easy to know when a deception is acceptable and when it becomes difficult to justify. An algorithm might help pediatricians to make those decisions.
If honesty underlies trust and trust is the basis of the doctor-patient relationship, then honesty between doctor and patient is a necessity. However, as in all areas of medicine, and life, nothing is so clear cut.
Omitting to tell a patient a potential rare adverse effect of a medication to spare the patient undue anxiety, telling a patient he or she will be fine when the prognosis is more ambiguous, or telling an outright lie to payors to ensure a patient gets the medication or treatment needed-these all occur in clinical practice. Surveys show that not telling the truth, either by omission or active deception, is done by physicians for a myriad of reasons.1,2
For most, if not all, these situations in which physicians are less than truthful in their encounters with patients, the impetus is for the good of the patient. Yet it is not easy to know when a deception remains within the realm of the acceptable and when it may blur into the difficult to justify.
When it comes to talking to children and adolescents, things get even murkier. The wishes of caregivers must be weighed into any conversation a pediatrician has with his or her patient. Difficult questions may arise for the pediatrician if the caregivers’ wishes go against the best judgement of the physician in relaying or not relaying information to the patient.3,4
In this interview, Contemporary Pediatrics spoke with Daniel K. Sokol, PhD, MSC, a medical ethicist and lawyer in London, England, who has written and spoken extensively on this issue. In 2006, as part of his doctoral thesis on truth-telling in the doctor-patient relationship, he developed an algorithm for physicians that he called a “deception flowchart” to help doctors decide whether a proposed deceptive action or omission is morally justified.5
Contemporary Pediatrics also spoke with Angira Patel, MD, MPH, a pediatric cardiologist at the Ann and Robert H. Lurie Children’s Hospital of Chicago, Illinois, who recently coauthored an article on this issue in which she provides the perspective of a pediatrician on when lying to patients may or may not be justified.6 (See “More references for basics of pediatric ethics” for additional sources cited by Patel as the “basics” of medical bioethics that are used when thinking about this issue in pediatrics.)
Q. You developed a flowchart to help physicians consider when not telling the truth in the clinical setting is morally justified. Can you describe how you developed it?
Daniel Sokol, PhD, MSC: The flowchart was created to help doctors decide whether a proposed deceptive action or omission is morally justified. It’s a 1-page decision-making guide (Figure).5
The flowchart asks clinicians to consider the justifications for a proposed deceptive act and provides a list of possible justifications. It then asks the clinician to consider, at a practical level, whether the deception is likely to succeed in “fooling” the patient and achieve the aims. The flowchart also encourages clinicians to reflect on the possible objections to deception and again provides a list of objections, and asks them to weigh the pros and cons.
Finally, if the scales still tip in favor of deception, the flowchart introduces 2 safety checks:
1. Would the clinician be prepared to defend the deception at a formal hearing of his or her professional body or even a court of law?
2. If so, would the patient-or a reasonable person-probably have agreed to the deception if he or she had known about this situation in advance?
Q. Can deceiving patients be morally acceptable? If so, when, in the setting of pediatrics?
Sokol: Yes, it can. The answer lies in the flowchart. Imagine a scenario when telling something to a child (perhaps a grim diagnosis or prognosis), who has previously indicated that he does not wish to know the details of his situation, would likely cause significant psychologic, even physical, harm, and would be positively cruel, however skillfully that truth was communicated. Further, you may have good reason to believe that the child may not be emotionally able to deal with the information.
In that situation, a lie could be morally acceptable, assuming the prospects of detection were sufficiently low.
I suspect most of your readers will be able to think of actual situations where a benevolent lie, or a deceptive omission, proved the ethically and medically better approach than disclosure. In each case, however, the deception has to be in the best interests of the child. It cannot be simply to appease the parents, or to dodge a difficult or time-consuming conversation.
Angira Patel, MD: The short answer is that lying or deceiving patients is not morally acceptable. The patient-physician relationship is built on trust and the ethical duty of a physician is to be honest. This imperative is even more important because the patient is vulnerable, sometimes fearful, and relying on the expertise of a physician to obtain accurate information and recommendations to make informed decisions. In the United States, we especially value respect for personal autonomy and this necessarily demands truth-telling from the physician.
However, I think it is important to recognize that physicians sometimes tell “white lies” when they feel it may be for the patients’ benefit (such as compassion, avoiding immediate harm, or giving hope) and some have argued that this sort of narrowly defined deception may be morally acceptable.
Q. Do you think the “deception flowchart” could be used in the pediatric setting? Any alterations or limitations?
Sokol: Absolutely. Some elements may be more relevant than others in the pediatric context, especially with younger children. For example, in thinking about a possible justification for deception in younger children, pediatricians will need to consider that the “patient is not emotionally or cognitively equipped to decide or to cope with the truth.”
Also, the flowchart is focused on the patient (ie, the child). The parents and relatives do not feature explicitly, although, of course, this does not mean that a clinician cannot, or should not, seek the assistance of those persons to inform his or her decision-making. For example, a parent may be better placed than a clinician to predict how [his/her] child will react to receiving a piece of information.
If readers feel the flowchart needs alteration to reflect the realities of their practice, they are most welcome to adapt it.
Patel: I think it’s difficult to rely on any flowchart exclusively. The Sokol flowchart is helpful in understanding the ethical tension and lays out the specific situations where deception may be morally acceptable. A physician considering deception should be a rare occurrence and lead her to pause and ask, “Is this really best for my patient?” The subsequent analysis by the physician should be nuanced and [she should] deeply think about the motive of telling a deception.
Q. What thoughts can inform the “type of deception” a pediatrician may employ in the pediatric setting? There seems to be a wide spectrum from white lie to active deception (perhaps to insurers for medication or treatment approval) to in the middle (omission or timing of truth).
Sokol: Deception is a complex notion, with no universal definition. What you might consider deception may differ from what I deem to be deception. Is the doctor who, over the phone, tells the parents of a child who has just died “Please come now, your child is very ill,” to allow the parents to know the truth in person and minimize the risk of an accident in transit to the hospital, engaging in deception? Is the doctor who fails to tell an 8-year-old child on the waiting list for a heart transplant that there is a high likelihood of dying whilst on the list engaging in deception by omission?
Deception takes many forms, from the old-fashioned lie to the clever use of words (“You won’t believe how many of these I’ve done!” says the junior doctor with no experience to the concerned parent who asks how many times he or she has performed that procedure) to misleading gestures to deceiving by keeping silent.
Does it matter morally which sort of deception you use? I doubt it in most cases, but scholars differ on that.
What matters, in the end, is not so much whether an action or omission is “deception.” It’s whether or not it’s morally permissible.
Patel: A physician should start from a place of no deception, whether it is withholding information or providing misinformation to insurers for medication or treatment approval. Sometimes, the timing and how information is given may be dependent upon needing more data to understand the disease process, not being able to prognosticate or accurately predict, or allowing the family to process difficult circumstances. However, the end goal should always be information sharing.
Q. Finally, what are the particularly ethical challenges of truth-telling in the pediatric setting where the patient is not yet an adult and under the care of a parent/caregiver? Are there situations in which the pediatrician could withhold information from the patient at the request of the caregiver? Any situations in which the pediatrician could withhold information from the caregiver?
Sokol: In England and Wales, which is the jurisdiction I know best, the guiding star, both in law and in ethics, is the “best interests of the child.”
So, is telling the truth always in the best interests of the child? Who decides? When views conflict, whose should take priority? Generally, the more autonomy a child possesses, the greater the prima facie obligation to tell the truth. Lying to a 3-year-old (reduced autonomy) is generally more acceptable than lying to a 17-year-old (full autonomy), whether in medicine or in everyday life.
Of course, “best interest” decisions also arise with medical treatment generally, and I explore many of these in my new book Tough Choices: Stories from the Front Line of Medical Ethics.7 There are chapters on 2 pediatric cases-Charlie Gard and Alfie Evans-that gripped the UK in the last 2 years. In both cases, there was intractable disagreement between the clinicians and the parents over what was in the child’s best interests. What was remarkable about these cases was the use of what I called “guerrilla tactics” by the families, namely social media, the support of high-profile figures such as the Pope, presidents, and celebrities, and verbal threats and intimidation of healthcare workers.
In the book, I concluded that “These guerrilla tactics do shed blood. The consequences, often, are that the children at the centre of the dispute receive burdensome treatment for longer than they should, treating hospital staff feel victimised and demoralised, and hospitals in the future will think twice about taking cases to court for fear of damage to their reputation even when continued treatment is contrary to the child’s best interests.”7
One important difference is that doctors are usually best placed to appreciate the medical aspects of treatment. With truth-telling, however, we’re dealing also with a child’s personality, emotions, actions, and reactions, and here parents, relatives, and caregivers may be (although not always) better placed to predict how a child will react to a truth or untruth. Arguably, the weight to be placed on the views of parents in truth-telling dilemmas should be greater than with questions of medical treatment.
So, yes, there may be situations in which a pediatrician will be satisfied that the caregivers are correct and that withholding information from a child, although deceptive, would be in that child’s best interests.
There is a separate, fascinating ethical area of whether clinicians can deceive a child’s parents or relatives, such as telling a parent that the child’s final moments were peaceful and painless when in reality they were not, but that might be for another day, and another flowchart.
Patel: In the pediatric settings, healthcare conversations and decision-making involve a 3-way relationship between the minor child, the parents or guardian of the child, and the physician. Deception or lying can be even more complicated in this setting if the parents ask the physician to withhold information from the child or adolescent. As pediatricians, it is our duty to involve the child as is developmentally appropriate while respecting the family unit. Conflict occurs when parents do not want their child to know medical information or when adolescents and parents disagree about treatment. The conflict must be addressed while balancing what is best for the child and still allowing parents to be the decision-makers for their child. This sort of conflict resolution is complex and approached thoughtfully with multiple conversations and ultimately building trust.
There are situations when a pediatrician can withhold information from the child/adolescent at the request of the caregiver. Examples may include if child is in immediate harm to self or others, the child is young and unable to understand the complexity of the medical situation, or the child has expressed [he/she does] not wish to know details of the diagnosis.
However, many cases do fall in the gray zone, such as that of a 15-year-old with a new diagnosis of cancer or a 12-year-old with chronic HIV whose parents ask that the diagnosis not be disclosed. Whereas it may have been acceptable to not disclose the HIV status when the child was 4, it may not be anymore. Despite the parents’ intention of wanting to protect their 15-year-old child, he may be hurt more if he accidently learns of his diagnosis from others while receiving cancer treatment.
In these cases, the pediatrician should not automatically withhold information as the parents desire. The pediatrician has a duty to consider the developing maturity of the child (respect for developing autonomy) and [his or her] right to participate in [his/her] own medical care. Each case may be ultimately resolved differently but must start with respectful conversation and understanding among all parties.
If the caregiver is clearly not acting in the best interest of the child, which is leading to harm that crosses a threshold of acceptable leeway of parental discretion, pediatricians may withhold information and/or involve protective services for the well-being of the child.