When honesty is not always the best policy for doctors
a year ago
Paediatrician debates need for telling hard truths in ethically challenging cases
BY Ruwan Laknath JayakodySince the extent to which paediatricians should strictly adhere to the total disclosure of information should be decided based on the circumstances of each case, the consideration of key criteria and guidelines. This includes whether what is disclosed is factually true, whether it is the correct time to divulge, whether the receiver is ready to listen, and whether the message is beneficial and is delivered in a calm manner whilst being respectful and supportive to the patients.These observations were made in a research article on “Lying to patients: Ethical dilemmas of communication in paediatric practice” which was authored by R.M. Mudiyanse (attached to the University of Peradeniya Paediatrics Department) and published in the Sri Lanka Journal of Forensic Medicine, Science, and Law 6 (2) in February 2016.Information available to doctors including about medical problems and maladies, which are gathered through verbal communication or investigations are, Mudiyanse noted, not always essentially beneficial to the patient, the family, and the society, where they can be beneficial to some but not to others. Hence, in such situations, doctors face the dilemma of deciding what to and what not to divulge, and whether the doctors have to tell the truth and nothing but the truth.Mudiyanse shared personal experiences of lying in different situations in the context of three case histories.First case A two-year-old baby was diagnosed as having beta thalassemia major (an inherited blood disorder that causes the body to have less haemoglobin [which enables red blood cells to carry oxygen] than normal and have two damaged genes which is the most severe form of this disorder where persons with this condition will need frequent blood transfusions and may not live a normal lifespan) at the age of eight months (diagnosis was confirmed through high performance liquid chromatography at nine months). Regular blood transfusions were started where the child was brought to the ward once a month and given a blood transfusion to maintain his haemoglobin level at a certain level.Both parents (mother a housewife with education up to the General Certificate of Education Advanced Level and the father a technical officer working in Colombo) who were initially distressed, had gradually adapted to the routine of coming to the hospital for blood transfusions. The case was discussed during the routine ward round conducted by a team consisting of a consultant, registrar (leading the presentation of the case), senior house officer, intern house officer, 14 final year medical students, and a nurse. After the 10th transfusion, he had to take one tablet of an oral iron chelator (a type of bonding of ions and molecules to metal ions) which removes the already accumulated iron from the body daily, and he had to continue this treatment for the rest of his life. Thus far, there had not been a problem in the management of the patient with regard to compliance or side-effects. However, the father had not been a thalassemia carrier, a fact which raised a concern regarding the diagnosis, because in the case of a child with thalassemia major, both parents should invariably be thalassemia carriers with the sole exception being when there is a new mutation. The discussion in the ward round led to the consideration of genetic testing to evaluate for genetic mutations in the child and repeated blood tests regarding the father’s thalassemia status.At this stage, the group started making comments about deoxyribonucleic acid (DNA) testing for paternity as one of the options in the process of evaluation. At this stage, Mudiyanse curtailed the theoretically rational discussion and inquired about blood transfusion and other aspects of care to the child, thereby ignoring all suggestions for further evaluation.Explaining his recollections of the case, Mudiyanse noted that in this instance, he as the consultant had attempted to hide the paternity issue and cover it up with the possibility of genetic mutation, thereby sacrificing the truth for the harmony of the family that will be crucial for the child’s life. “However, what about the father’s and the child’s right to know?,” he queried in retrospect.That said, since the blood tests that were already done were not conducted with the intention of testing paternity, it will be unethical to divulge this information without consent, according to D. Sokal’s “Truth telling in the doctor-patient relationship: A case analysis”.Second caseA 10-year-old girl was brought to the outpatient clinic room by her father and mother. The father had to carry this quadriplegic (paralysis of all four limbs) and bed-ridden child who has cerebral palsy (a group of disorders that affects a person’s ability to move and maintain balance and posture), as she is too heavy for the mother to carry. The father sat on the small chair in front of Mudiyanse with the child on his lap, and asked “Do you remember me?”. The mother then kept the medical records in front of Mudiyanse.The latter could not remember them but pretended to remember, returned a smile and started turning the pages in the record book. According to the records, the child had survived an episode of encephalitis (inflammation of the active tissues of the brain) but was left with severe quadriplegia at the age of three years. After the initial care, the family moved to another city and consulted a number of specialists and a diagnosis of Lennox-Gastaut Syndrome (a severe condition characterised by recurrent seizures/epilepsy that begins early in life) was established.She had been on four anti-epileptic drugs for the past five years. Mudiyanse had been impressed by the comprehensive care that had been offered to the child. After reading the book, Mudiyanse while holding the hands of the child and stroking the head, asked the parents what he can do to help. The mother explained her difficulties where spending more than Rs. 35,000 per month has not been easy.However, in spite of the expensive treatment, the child seemed to be getting frequent convulsions. Therefore, the mother requested giving the same drug that was given to the child at the onset of the illness. Mudiyanse had noticed that they had used a particular anti-epileptic/anticonvulsant immediately after the encephalitis and had continued the same for about two years. Subsequently, the said drug had been stopped and newer and more effective drugs had been initiated. At this stage, the only options that were left was to either start on a particular anti-seizure/anticonvulsant/anti-epileptic medication or to redirect the mother to neurologists with a referral letter explaining the mother’s concerns.Mudiyanse decided to use the latter drug without further consultations and explained the possible risks and adverse effects. The mother was not worried about the possibilities of the failure in the treatment but expressed major concerns when the well known complications of the initially used (post-encephalitis) drug, such as gum hypertrophy (an increase in the size of cells or tissues in response to various stimuli), excess growth of hair, and facial disfiguration which were discussed, and then expressed reluctance to start on the said drug. However, at this stage, Mudiyanse continued explaining the possible advantages of starting the said drug and how those advantages could outweigh the adverse outcomes like facial disfiguration, and thereby, finally managed to convince the mother on the trial of using the particular anti-seizure/anticonvulsant/anti-epileptic medication he suggested.Explaining his recollections of the case, Mudiyanse added that he had lied to the patient regarding the side-effects of the initial drug and violated the code of professional conduct by not communicating with a colleague who had been looking after this child. “Reflecting on the situation, I feel that I didn’t want any obstacle to my idea of trying the initial drug on this child, solely because of my perception of the presumed benefits that would accrue to the child,” he explained in retrospect.This case also deals with providing palliative care. When providing palliative care to children with incurable diseases, there should be a multi-disciplinary approach to relieve pain and symptoms while attending to the emotional and spiritual needs of the child as well as that of the family, and this, as B.P. Himelstein, J.M. Hilden, A.M. Boldt, and D. Weissman’s “Paediatric palliative care” pointed out, should be appropriate to the society and the culture and with the involvement of the primary care doctor.“Taking over patient care on the patient’s request is not an unusual practice in Sri Lanka. This commonly takes place in the private practice more than in the hospital practice. However, this patient requested to take over the care in the hospital clinic. Whether the acceptance of a patient without a referral deserves to be considered as a breach of professional conduct is questionable. Offering a drug like the initial drug that has been given up due to known side-effects like severe gum hypertrophy could be considered as deceiving the patient, especially when the side-effects were only partially revealed. The only excuse is probably the benefit of the family,” Mudiyanse further elaborated.Third caseA prematurely born (34-weeks), low birth weight (1,800 g) baby was in a special baby care unit. On the 10th day of life, a nurse had severed the fifth finger of this baby boy’s left hand by accident. When Mudiyanse arrived at the ward, the nurse was visibly, emotionally distressed. Emergency care had been provided. Mudiyanse planned to break this bad news carefully. Exercising communication skills with regard to arranging the environment, building rapport, and exploring the parent’s perceptions were followed by the actual breaking of the news.The reaction, as expected, was overwhelming and a little short of being physical. Mudiyanse’s silence and acceptance of their emotions were however good enough to manage the situation. This episode was followed up with several discussions with the parents and their relatives. The possibilities of legal action were discussed. Mudiyanse disclosed the possible mechanism of getting hospital records and more importantly, the fact that the care for the child will not be affected as a result of legal action. However, after much contemplation, they did not proceed to a legal battle.Severing of a body part is a grievous injury according to the Penal Code that warrants major punishment. However, this case ended up in a departmental inquiry, resulting in a warning to and a transfer of the nursing officer to another unit.“However, I am not sure whether I had done justice by settling the emotions of the parents. Here, I never lied as far as the facts are concerned and I never discouraged legal action. Probably, I developed a genuine relationship and harnessed empathy towards the nurse. Do I have a duty to encourage and promote legal actions in a case like this? I have divulged the correct facts, but have I communicated the correct emotions and correct moral values that are essential components of communication? According to the directives of the American Medical Association (AMA), there is a duty to promote the reporting of such cases,” Mudiyanse mused in retrospect.Doctors are supposed to tell the truth and nothing but the truth with the AMA’s Principles of Medical Ethics holding also that not only should a physician “be honest in all professional interactions” but also promote the reporting of physicians engaged in deception, to the appropriate entities, per Sokal’s “Can deceiving patients be morally acceptable?”.All three case scenarios demonstrate varied degrees of lying and conduct that is in breach of professional conduct, per Mudiyanse.Lying, Mudiyanse elaborated, involves a situation to lie about, an intention to deceive, an expression of false information by words, gestures, or body language, and completing the conveying of a false impression. Mudiyanse claimed, however, that he did not have any intention to deceive.The concealment of information for therapeutic advantage on the basis of the Hippocratic dictum of primum non nocere (first, do no harm), has been challenged as a valid excuse where certain courts, per A.K. Edwin’s “Don’t lie but don’t tell the whole truth: The therapeutic privilege – is it ever justified?”, has rejected this argument.“Patients autonomy and the obligation of loyalty demands truth telling. The patient’s contract with the doctor would be breached, leading to mistrust, if the doctor fails to provide all the relevant information to the patient. Patients, as Edwin noted, know how to manage the information available to them,” Mudiyanse emphasised.In conclusion, Mudiyanse observed that though honesty is desirable, it may not always be the best option, and that therefore, the duty to tell the truth is not absolute and can be balanced against advantages and disadvantages. Sokal highlighted in “Truth telling in the doctor-patient relationship: A case analysis” that doctors have no duty to disclose all the information unless it is relevant.There is also, Mudiyanse suggested, the need to distinguish between what is harmful and what is hurtful, noting that, “sometimes people tell the truth and it hurts a lot, but is very helpful”. That said, the General Medical Council (GMC) of the UK highlights in its “Duties of a doctor registered with the GMC”, the need to always be honest and truthful.