This is a descriptive study of medical child neglect. We conducted a retrospective medical record review of hospitalized children whose parents had trouble with medical staff at the Department of Pediatrics, Gyeongsang National University Hospital, Jinju, Korea. All the pediatricians (i.e., professors, residents) of the Department of Pediatrics have held one-hour morning problem conference for average one case every Tuesday. Most cases are about the severity of the unresolved illness, but they deal with a very few troublesome cases between parent(s) and medical staff which were only four cases among the total from January 2017 to December 2018. Researchers purposively selected all these four cases as medical child neglects with the consultation of an expert in this field. We precisely reviewed all the four cases to achieve study objective.

Four records illustrate suspected medical child neglects done by parents in the hospital. Case materials and patient information have been disguised in order to protect the confidentiality. The Institutional Review Board of the Gyeongsang National University reviewed and approved the research protocol (GIRB-G18-0010).

A is a 2-year and 9-month-old boy who came to emergency for vomiting. The boy showed low blood pressure, fever, high pulse, and moderately dehydrated state at admission. He was hospitalized under impression of acute gastroenteritis with moderate dehydration. Next day the boy was isolated in the first-class room with the positivity of stool Rota-virus antigen. Dehydration improved after initial hydration. During 10 hospitalized nights, several times the mother refused to check vital signs of the boy. She always excused not wake the sleeping boy. Instead the mother self-diagnosed the boy has no fever. At the 6th day, the mother excused one-hour off for her visit to clinic but disappeared and disconnected during 4 hours neglecting the boy alone in the room. Doctor tried to connect the mother but failed. Doctor explained the father of the situation who responded he could not make it. Later she excused she was in sleep with intravenous (IV) fluid. Nurses educated mother of safety nursing, medication, and health care for the boy to prepare discharge. But the mother insisted not to discharge, requiring the negativity of Rotavirus antigen. Nevertheless she still refused to do enema and to check vital signs of the boy, always excusing the sleeping boy. All the cost was covered by the insurance. The mother voluntarily discharged at the last day of insurance coverage.

B is a 9-year-old boy admitted to the inpatient unit with pneumonia. The boy was born to hydrocephalus, spontaneously delivered at 36 weeks’ pregnancy due to fetal distress. The boy was unwanted baby of poor family with many siblings. Until the boy’s birth, the mother had not any routine visits to gynecology and obstetrics. However the boy was covered by fetal insurance. Thereafter, the boy was bedridden with Levin-tube feeding during 36 weeks. The mother often left the bedside not answering nurses’ call. Whenever the mother found the boy salivating with tube slipping, she blamed the medical staff for the untidy care. Nurses struggled to connect the mother to confirm dental therapy for the boy, who refused excusing her exhaustion. Nurses educated the mother to turn over the boy to prevent the bedsore on the back but nurses had to do, instead of the mother always neglecting the job. After 10 hospitalized nights, the signs and symptoms of pneumonia improved but the mother refused to discharge. Thereafter, the mother consistently refused to discharge during the insured period. On the 15th day, the boy recorded 38.5°C with high fever but the mother left the boy without any notice to medical staff. On the phone the mother refused to do blood test and X-ray radiograph. Doctor prescribed a febrifuge to bring down fever through L-tube. After 4 weeks, nurse educated the mother of health care, medication, and diet for the boy to prepare discharge. The mother refused to discharge so that the doctor had to cancel the discharge.

C is a 2-month-old girl admitted to the emergency for swelling, redness, heating sensation, and bulla of a little toe. The girl stayed 6 nights at the hospital. At the admission, the mother reported the baby badly fretted at midnight but no external wound or bite. Toe color changed purple with sustaining dorsal arterial pulse. The baby girl was assessed as coagulopathy and compression injury. At the 2nd day, toe color did not change but bulla reappeared. Several times the mother refused the injection of fresh frozen plasma necessary for possible protein C deficiency. At the 4th day, the mother refused the follow-up blood test whenever the medical staff explained the necessity to check coagulopathy progress. Initial laboratory findings such as platelet count and coagulation test were within normal limit. The family insisted discharge of the baby girl refusing treatment of IV line for toe swelling. Medical staff warned the risk of ischemia to other toes after discharge. The family reluctantly decided to stay at hospital but still refused to get IV line. The family also refused Echo-cardiogram checking the cause of color change. At the 5th day, the family refused enoxaparin therapy. At the 6th day, the family visited dermatology and discharged voluntarily.

D is a 1-year and 7-month-old girl admitted to the emergency for prolonged generalized tonic-clonic (GTC) type seizure over 4 hours with high fever up to 39°C. The girl was comatose, irresponsive with spontaneous eye opening at the admission. The girl was diagnosed as status epilepticus, hypoxic ischemic encephalopathy and pneumonia. Thereafter, the girl was hospitalized during 7 weeks. The doctors planned high flow standby. At the 10th day after the signing the Do Not Resuscitate (DNR), the parent requested not to provide life support treatment. The girl did not respond to every medication with too long spasm. Spasm subsided after therapy but comatose and GTC type seizure sustained. The medical staff agreed not to do active cardiopulmonary resuscitation (CPR) but advised to check vital signs of the girl, but the parents were unlikely to accept. The parents violently opposed the need of rehabilitation, saying “why should this kind of the child receive rehabilitative therapy?” The parents requested no prescription for high blood pressure of the girl at the evening visit. The medical staff warned that no provision or discontinuation of life support treatment is a violation of the law, even though the parents signed the DNR (Do not CPR). The girl had been screaming without stopping all throughout the hospitalization. At the 33rd day, the girl screamed and doctor checked brain CT which revealed high brain pressure with progressive hydrocephalus. The parents refused operation of ventricular-peritoneal shunt at Neurosurgery Department for the girl showing increased ventricle size and diffuse brain atrophy on the follow-up CT. At the 34th day, the Department tried tube feeding for the girl who vomited after lunch. But the parents insisted regular diet. At the 42nd day, the screaming of girl was getting worse. The girl showed loss of progressed diffuse brain volume, due to HIE and progressed ventricular dilatation. The girl is the case of ventricular peritoneal shunt with tissue loss and increased ventricle size on the CT. But the parents stubbornly refused operation. The medical staff warned possible sudden death with high brain pressure. The parent voluntarily discharged next week and promised to revisit on the worse condition after discharge.

All the cases in this study are clearly representing medical child neglects which were intentionally done by parent(s). All the children have chronic and complex medical conditions. In spite, the mothers of the first two cases obstructed medical actions such as checking body temperature of the child and referring the child to dental therapy (Case 1, Case 2). Both mothers often and long disappeared without notice neglecting their children in the hospital, mean while the medical staff had to struggle to connect them. While parents are disconnected, medical staff experienced difficulties in medical decisions at emergency. The parents of the second two cases not only obstructed medical actions but also voluntarily discharged against medical advice. They did not permit any test, treatment, and operation necessary for the child health (Case 3, Case 4). For the Case 4, the parents refused life support system soon after signing the DNR which can put the child in the critical situation. The parents voluntarily discharged against warnings on risk of disability and even death of the child. Conclusively all the cases are found as TR (Case 1 to Case 4), and two cases are DAMA (Case 3, Case 4). One case is possible FTT (Case 4).

What are the risk factors for medical child neglects in this study? The mother of the Case 1 had no sense of medical care and nor responsibility of the child. The mother misunderstood hospital as hotel or childcare facility and treated medical staff as maid or childcare nurse. She always excused not wake the sleeping boy but it meant not to disturb her sleeping. The mother of the Case 2 was negative to any treatment and therapy for the boy. The mother blamed the medical staff for the salivating boy with tube slipping, misunderstanding the roles of medical staff. The mother of the Case 3 had no knowledge about toe impairment. The mother showed negative attitude toward medical advice with wrong information from the mass media. The parents of the Case 4 refused all the treatment and voluntarily discharged giving up the rehabilitation of the disabled girl. The first two cases are fully covered by the private insurance. They had no difficulty to pay for the hospitalization. The mothers of the first two cases refused to discharge, using the whole insurance coverage. Meanwhile the second two cases were not fully covered by the private insurance. The parent(s) of the second two cases insisted discharge regardless of family economy. The mothers of the first three cases were relatively less educated. Medical staff had difficulty in explaining the situation of the children and providing the education to prepare for the discharge. The parents of the Case 4 were highly educated and affluent in the economy, but they did DAMA. They felt burdensome for long hospitalization for the disabled child. All the cases proved intentional medical neglects.

Conclusively, risk factors identified in this study are private insurance coverage, family economy, disability of child, and education of parent(s), as were similarly found in the relevant studies. Prior studies report that medical neglect mostly occurs when insufficient financial resources are associated with high medical demands such as low-birth weight infants or high risk children with low insurance coverage and long hospitalization [4,9,11,18,19]. Contrarily, parents sustained medical neglect with full coverage of private insurance in this study. Parents did not discharge the children up to the last day of insurance coverage in spite of medical advice. This causes excessive medical expenditure as well as over burden on medical personnel at work.

Medical neglect occurs not only with family economy and insurance coverage but also with births of unwanted babies like disabled children [13,19]. In this study, the parents strongly obstructed the medical actions for their child with disability and discharged against all warnings from the professionals. Mistrust in health care system, fear about medicine misuse or overuse, misinformation or insufficient information of medical action were also causes of DAMA in this study, as were in other studies [14,15]. However, the most crucial factor for medical neglect was education and attitude of the parent(s) who misunderstood the true roles of hospitals and medical professionals. The serious consequence can result from medical neglect. Infection and illness may deteriorate child’s health and life that will lead to readmission of the children even to death. This vicious cycle will continue with moral hazard of the parents that is why medical neglects should be detected and stopped (Table 1).

Although the four cases in this study are clear examples of medical neglect, the medical staff seemed not recognize as the cases. All the medical staff in sympathy put up with wrongful attitudes and acts of the parent(s) in sympathy for the children. They did not indicate or educate the parent(s) of medical neglect. They could not even think about reporting to the CPA. The situation is clearly stated on the chart of the Case 2. “Several times we persuaded the parent of tube feeding, who continuously refused. It needs to persuade the parent who insists regular diet for the child.” The only way to stop medical neglect was persuasion of the parent (Case 2). Although medical staff strongly warned “Even though you signed DNR, it is violation of the law to cut down the life support system or stop necessary treatment” (Case 4), but this is from the ethics of medicine not from the perspective of the medical neglect.

Medical neglect such as TR and DAMA can be indicated only by medical personnel at clinical sites. However, it is not easy to prevent medical neglects at clinical sites, as shown in the present study. First, it takes a significant time to find adverse consequences before readmission of the child to hospitals. A majority of them cannot recognize parental refusing the medical advice or voluntary discharge as medical neglect, not to mention of collecting evidence for medical neglect [20]. Second, medical staffs who have not received any training and education have no capability to properly respond to medical neglect cases. Further, most of the medical personnel feel burdensome for conflict with parents or family members and disclosure of their identities, even though they might indicate medical neglect as the cases [16,17].