DoCS – Stealing Our Children for Medicine?

One Australian Family’s Nightmare Loss of Health Freedom

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Sarah lurched from crisis to crisis as each court hearing decided the next traumatic event in her life. She seemed to be forever waiting on a ruling from a Judge somewhere in Sydney who had nothing but papers before him and who had never met her. Her fate was in a stranger’s hands and Sarah had found it difficult to be in hospital for weeks on end without seeing her brothers and sisters. And she missed her pets. Now the State of New South Wales (DoCS) was her parent and all she knew of them was the women and men who came around in their suits and handed pieces of paper to her and talked about her “rights” and told her she would die if she did not have chemo. She well remembered the last dose she had five weeks previously and it was the first time since her illness began that she had felt close to death. The treatment made her feel worse than she had ever felt in her life. “I don’t want that stuff in me, Mum,” she’d said after the first treatment. “Can’t I just undo it and let it go on the floor?” Had Sarah decided to carry out her idea, the hospital staff would have been required to carry out the following manufacturer’s instructions regarding spills and disposal: 

Far from being able to reassure Sarah and her family with solid evidence of the safety and efficacy of the treatment, the oncology staff had already made the decision that any obstacle to its administration would be removed. The hospital staff was always on the lookout for signs of non-compliance. It was of great importance that Sarah learnt to like her chemotherapy treatments and regard the fatigue, retching, body aches, bloating, nosebleeds and abdominal pain as a sign that it was doing her good. Both oncologists had already petitioned DoCS and the Court to order a full psychological assessment into Sarah’s and her family’s attitudes. Far from being independent, the nominated psychologist was closely affiliated with Dr. M from the Children’s hospital and had done much DoCS work in the past.

Sarah was hastily discharged from Sydney Children’s Hospital when Dr. M felt the case was too troublesome. The Westley’s questions were now becoming somewhat difficult when asked in front of other parents. He discharged Sarah on the grounds that her case was preventing him from treating those patients who wanted his treatment. He said he would not undertake any more hands-on treatment but he and Dr. A both petitioned the court and DoCS asking for Sarah to be removed from her parents and confined to the Hunter Children’s hospital for extensive chemotherapy treatments. The doctors further recommended Sarah be placed in a foster home. They requested that the parent’s access to the child be severely restricted.

In a ruling handed down by the Supreme Court in July Sarah was returned to the care of Dr. A at the John Hunter Children’s hospital. Her access to her parents was to be limited to two hours only. DoCS did not consult Dr. Tyler’s opinion as Sarah’s primary care doctor. And the Judge evidently took no account of Dr. Tyler’s recommendations for the child’s health and wellbeing.

The questions about the side effects were never answered.

“Children who are successfully treated [with chemotherapy] for Hodgkin\'s disease are 18 times more likely later to develop secondary malignant tumours. Girls face a 35 per cent chance of developing breast cancer by the time they are 40----which is 75 times greater than the average. The risk of leukemia increased markedly four years after the ending of successful treatment, and reached a plateau after 14 years, but the risk of developing solid tumours remained high and approached 30 per cent at 30 years (New
Eng J Med, March 21, 1996)”

Sarah’s shrunken little body seemed further dwarfed by the large empty room she solely occupied at the John Hunter Children’s hospital. She would be twelve years old in a few weeks, normally a joyful occasion when her family would put on a celebration for her. Now the thought held only a painful reminder that she had lost her family, possibly indefinitely. The recent events also claimed 20 percent of her body weight since she last weighed herself at home. She now weighed just over 30 kg. Most of the day, she sat on her bed gazing out of the airtight and screened window at the trees on the hospital grounds. She was a little farm girl and it was the only bit of nature she had seen for weeks. Her mother had asked the staff’s permission to take Sarah for a walk outside but the request was refused. By then Sarah had not had fresh air or sunshine for weeks. Her head was entirely bald and she only managed a smile when her parents were there. Sarah did not know why the judge had restricted her parents from seeing her. She was allowed to see her parents or sisters for only two hours a day and the hospital staff had included the time she had spent on the phone to them as being counted as visiting time. Sarah was twisted into anxious despair most of the day waiting for her family to come, her limbs folded up into a protective posture. Food trays came and went, laden with milk, ice cream custard, coloured jelly and bacon. She did not eat those foods. She had been used to fresh fruits and vegetables, rice, whole-grains, chicken and fish at home. Her trays went back untouched and her weight steadily declined. 

Dr. Tyler had requested that Dr. A allow Sarah to eat the nutritious foods that she was accustomed to. He mentioned that Sarah appeared nutritionally deficient and in all probability was suffering from the early effects of malnutrition. He also recommended Sarah continue taking the minerals and vitamins he had prescribed for her earlier, to promote her recovery, and to correct the deficiencies. Dr. A explained that he had decided on an ordinary hospital diet for Sarah and nothing else. Evidently the oncologist felt strongly that only chemotherapy was indicated for her condition and that did not include fresh air, sunshine or adequate nutrition. Dr. Tyler was also deeply concerned about Sarah’s emotional welfare. She had been a happy and carefree child when he’d first seen her, despite her diagnosis. She was mischievous and engaging. She adored her parents, sisters and brothers, and they clearly adored her. Her mother was a wholesome woman, a nurturing type and father was clearly the family protector. Now the family was broken and Sarah appeared anxious and despairing at the thought of being placed into a foster home and not seeing her family again. Dr. Tyler mentioned his concerns to Dr. A.

Meanwhile Dr A had also become concerned about Sarah’s mental and emotional wellbeing. Sarah had told him “I hate you,” earlier. Now he was determined to find out why. He expected the psychologists report would clear up the mystery as to Sarah’s attitude towards him. The report written by Dr. Lucy Blunt stated that neither parent was suffering from any auditory or visual hallucinations, a fact that they were undoubtedly pleased to hear after they had been sleep deprived for several months since DoCS came into their lives, and sent virtually broke with legal bills. Dr. Blunt had given Sarah a complex intelligence test just a few days after Sarah’s major surgery and at a time when the child was beside herself with worry about what would become of herself and her family. Sarah’s performance was below par for her age, which Dr. Blunt thought would affect “the degree to which her wishes should be taken into account [as to] decisions to be made in her best interests.” Evidently Sarah did not pass the test that would entitle her too much of an opinion about what should be done to her. The psychologist felt duty bound to tell Sarah that she would die if she did not have chemo, and she probed the child on what it might be like to die. After this lengthy (and unhappy-sounding) cross examination, Dr. Blunt noted that “given the right foster parent (preferably a childless woman or a childless couple), foster care may be able to provide a more ‘normal’ environment” for Sarah. It is difficult to understand why the doctor would match Sarah with a childless single woman when the child came from a large farming family with a number of children. Unfortunately Dr. Blunt did not define what was her understanding of the word ‘normal’. Dr. Blunt, a psychologist, then went on to recommend that Sarah should have chemotherapy.

On one July evening, just after the new order restricting the family’s access, it was time for Sarah’s parents to leave after their two-hour visit. Sarah was due to have another round of enforced chemotherapy soon, and felt so upset at the prospect that she threatened to kill herself. This had hardly crossed the staff’s mind, as Dr. Blunt had reported that Sarah did not appear to be suffering from depression. The parents were in turmoil but the terms of the court order compelled them to leave promptly. Worried and uncertain they stopped at the hospital café before embarking on the two-hour trip back home. Dr. Tyler had also visited and joined them on his way out. The group looked up to see a conundrum. It was Sarah, running towards the hospital exit in search of her family, pursued by two hospital staff. Sarah’s older sisters went over to talk with her. Mark was cautious about approaching his daughter because of the court orders. Dr. Tyler also went over to attempt to calm her. The staff had summoned two burley security guards who promptly arrived, intent on manhandling her back to the ward. Dr. Tyler stopped them and assured the staff that he would convince her return to the ward. He spoke to her reassuringly and the group slowly wound their way back. The scene was played out in the front lobby of the hospital in front of a mural that had been painted by an Iraqi woman refugee artist. It depicted a scene of despairing and emaciated children in a prison camp surrounded by barbed wire.

Dr Tyler was on his way to the John Hunter Children’s Hospital to visit Sarah and to have a conference with her treating oncologist Dr. A. The last court order had stated that Dr. Tyler had visiting rights to Sarah as her primary care doctor. However, the last time he tried to visit, he was told he would have limited access to her and a hospital staff member would supervise his visits. This was by order of Dr. A, who had also refused to allow Dr. Tyler access to Sarah’s pathology results. Today however, he had finally been successful in getting an appointment with Dr. A to discuss a matter that was becoming of increasing concern to him.

Dr. Tyler’s appearance was that of a kindly 59-year-old doctor, bespectacled and conservative. His mild mannered demeanour, however, belied the fact that he was a board certified specialist general surgeon and trauma surgeon, which he’d practiced in a busy European teaching hospital until 1982 when he opened his practice near the NSW Central Coast. He also held a Ph.D in Medical Physiology and was particularly knowledgeable in biochemistry and the role of nutrients in disease. 

In his medical practice he was used to liasing with specialists and found it important for the sake of all concerned, to maintain good relationships with colleagues. That was the basis for a multidisciplinary approach, where a team worked together for a good patient outcome. But the Sarah’s case was unusual for a number of reasons. And now he had a new role as arbitrator between Sarah’s treating doctor and the parents. By now, the family was clearly upset about what they considered a heavy handed approach and lack of convincing information about the chemotherapy treatment Sarah was forced to undergo.

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