Part 2

DoCS – Stealing Our Children for Medicine?
One Australian Family’s Nightmare Loss of Health Freedom
An Article By Eve Hillary Revised 15/12/2003

[Part 1] [Part 3] [Part 4] 

This story is also available as a .pdf file (needs Adobe Acrobat Reader) 

Truth Isn’t Easy
The summer of 2003 brought a string of hot days and blazing bushfires, but Lisa’s family had their own crisis to attend to. Because of their healthy lifestyle, they had never imagined that any of their children would suffer from childhood cancer. Suddenly they were thrust into a position of heavy responsibility, having to decide what was best for their daughter. Neither James nor Elizabeth had had much previous medical knowledge but they were determined for Lisa’s sake to learn all they could. At the time of their daughter’s surgery the previous November they both agreed that they could not live comfortably with their choices unless they were solely guided by the weight of credible evidence and by their own reasoning ability. They also knew how important it was for
Lisa to have informed choice and a voice in the decision-making.

While Elizabeth was more involved with the day to day nurturing role of her other children and providing for Lisa’s special needs, James took the role of family protector all the more seriously and spent most of his spare time researching. Out of a pressing need for accurate information, he barraged the medical professionals with a multitude of questions at every opportunity. Both parents considered it vitally important to receive accurate and not conflicting information so they could keep their options open to several treatment possibilities including chemo if or when the time came. For the time being Lisa was making astonishing progress and they decided to continue with the Melbourne Professor’s regimen. They also stayed in touch with Dr. Kenyon and studied his
protocols and reviewed the studies that had been conducted on his treatments. They discovered other cancer treatment centres in Germany, USA, Mexico and Switzerland, which were getting good survival rates using natural approaches or integrative approaches using a variety of orthodox and natural treatments. All they required now was a doctor to advise them without bias on the merits or shortcomings of any given
treatment option, someone who would not railroad them and who could give them accurate information. They had heard of a doctor near the NSW Central Coast who practiced integrative medicine using both orthodox and proven alternative approaches. They made arrangements to see him as soon as they could juggle work and domestic schedules. Lisa’s treatment and frequent trips to doctors and to Melbourne was demanding most of their available time.

Getting “Very Messy”
If Lisa and her family were under the impression that they had moved on to another doctor’s care, it was not how Dr. A saw it. The previous December, he had made a clinical note to the effect that should the family decide to refuse his treatment that he claimed would bring an 85% probability of a “cure”, he would consider it a “child protection” matter. The doctor offered no supporting evidence for his prognosis.

During February and March, Elizabeth and James kept in regular contact with Professor C’s clinic in Melbourne. Lisa returned to playing games with her siblings, which usually amounted to setting them up with various mischievous pranks, which they took with good humour. Most of Lisa’s antics were so clever it was difficult to be angry with her and the family was collectively relieved and happy that her elfin sense of fun was undiminished. Lisa’s lively presence gave them all an opportunity to experience their close bond
together again as a family. 

In March the John Hunter Hospital social worker, was instructed to organise a meeting between Dr. V, head of Hunter Children’s Health network, and Dr. A (the oncologist), due to his concerns that the parents did not return to him for treatment. The social worker noted that the “parents’ delay” in agreeing to Dr. A’s treatment is placing Lisa at increased “risk of harm”.

Back on the family farm, James, Elizabeth and Lisa’s grandmother had learnt to administer Professor C’s treatment regimen home. Lisa enjoyed her treatments and reported that she felt they were doing her “good”. This was evidenced by her return to her favourite activities of playing games with her siblings, riding bikes, going for long walks in the hilly country and seeing her friends.

On March 11, Dr. A and Dr. V at John Hunter Children’s Hospital decided to contact the Department of Community Services (DoCS) regarding their concerns that Lisa was pursuing treatment other than the one Dr. A had prescribed.

Meanwhile Lisa spent the beginning of the new school year being home schooled by her family, as the 40 km roundtrip to school was deemed to be too much. Her Grandmother and mother took turns giving her maths, reading and spelling lessons and her daily treatments. Her parents took her to the local GP regularly for tumour marker blood tests, and by May they had risen. Professor C explained that it sometimes happened with the
treatment she was on and his team would keep an eye on it. Meanwhile, he adjusted the regimen accordingly. Despite the rise in her blood tests, Grandmother states, “Lisa responded very well and was able to walk around the cattle with me, sometimes a journey of over three kilometres, over steep hilly country.” Lisa enjoyed climbing and swinging from tree branches. It was impossible to keep her inside for long. She enjoyed the
country air and revelled in playing with her numerous pet dogs, sheep and calves. She loved watching nature and even had a pet crab. She was always thrilled to see her friends especially since she was well enough to stay overnight with friends of the family. Peter and Lyn recall, “The treatment Lisa has been on has made such a difference to her, that we can honestly say each time she has been with us, all have remarked how well and
healthy she looked. Her energy level was high and she has been the liveliest of all their children. People that have met Lisa recently have not believed that she has cancer, as she has responded so well to the treatment.”

In May, James and Elizabeth took Lisa to see the doctor on the Central Coast. Dr. Roehrich was a surgeon by training but practiced as a GP with a special interest in nutritional and environmental medicine. He practiced an integrative approach to medicine in general. With cancer treatment, he was comfortable with surgery, chemotherapy and proven natural or complementary treatments. He states his primary objective with respect
to any medical treatment is to weigh the risks to benefits and tailor it to the patient’s quality of life. He regards his role as providing patients with informed choices and he is an avid reader of the medical literature.

It wasn’t long before Lisa warmed to Dr. Roehrich’s mild manner, and jumped around his consultation room while he tried to elicit a history from her. Finally, he let her twirl around his office chair in order to test her stamina. To him Lisa appeared extraordinarily well considering she had a grade three ovarian tumour (one that had spread to other areas) removed six months previously. She did not complain of any pain or discomfort
and moved her body freely while doing her mischievous antics in the surgery. Examination of Lisa’s abdomen revealed no lumps or clinical abnormalities. Dr. Roehrich was aware of Lisa’s rising tumour markers. He took a detailed history and the parents briefed him fully on Lisa’s history, providing all available test results. He noted that the parents were health and diet conscious, and keen to discover possible environmental links to their daughter’s cancer. They were very knowledgeable about certain chemicals and hormonally active substances in the environment that were possible triggers of ovarian and testicular cancers. They were concerned about the escalation of these cancers and wished to avoid the risks for their 5 other children. A brief discussion followed about those issues. For the time being Dr. Roehrich could only include some essential nutrient supplements that were missing from Lisa’s regimen to strengthen her immune function, until such time that he had more information. He noted Lisa’s healthy appearance in his clinical notes and made a mental note to avail himself of medical studies on both chemotherapy and the other modalities of treatment for Lisa’s particular problem.

While the family attended to Lisa’s care back home on the farm, DoCS at Taree had consulted with their internal legal advisor who issued requests for information under section 248 of the Children and Young Persons Care and Protection Act. 1998. The previous week the department had contacted Lisa’s school with instructions to answer a list of questions. The school replied; “Lisa” is always well groomed and cared for. She
is a well mannered and co-operative student.” DoCS compiled a dossier on Lisa’s school and medical records, and interviewed the local GP. Dr. A, the oncologist prepared a written report to the effect that Lisa has not had his treatment for several months and purported that she would die without his treatment.

On May 15, 2003, just before lunch, two caseworkers from the Taree office of DoCS arrived at the family’s home. Lisa was having her school lessons at her grandmother’s house nearby, from where she was summoned so the caseworkers could serve the child with documents. Meanwhile James explained in great detail the medical treatment Lisa was currently having. The women served the father with a notice under Section 173 of
the Children and Young Persons Care and Protection Act. 1998, which forced him to take Lisa to Dr. A at a specified time later that week. The hospital was a two-hour drive away. When Lisa arrived from her grandmother’s house, the two caseworkers were visibly shocked. One noted in her report later; “The child arrived with her aunty and her baby cousin. I observed the child to be tall, slender, she had rosy cheeks, good skin tone, bright eyes, no visible signs of being ill, bouncy, active and apparently not incapacitated
due to her illness.” Judging by the tone of Dr. A’s concerns, they evidently expected to see a neglected and dying child. The caseworkers took Lisa aside and served the notice on her, explaining to her that they were there to “make sure children are cared for properly”. Lisa took the paper that stated she would be compelled to see Dr. A, whom she and her family had decided not to see months ago. Lisa was eleven years and 8
months old. It was the first time she had ever experienced strangers coming to her home and forcing a course of action on her and her family.

On May 19th Lisa and her parents were on the road once again. James had managed to get a concession out of DoCS that they would not be forced to see Dr. A. Instead DoCS made a booking with another Oncologist, Professor M at the Sydney Children’s Hospital. Dr. M conducted a clinical examination. In a letter to Dr. A on 30th May he states; “When I examined “Lisa” on 20.5.03 I could find no abnormalities”. He ordered a bone and CT scan for Lisa for the following week. He ordered no other treatment in the interim. Chemo was discussed. The hospital social worker consulted with the family. She later reported back to DoCS that James and Elizabeth had requested studies (that supported the efficacy of chemotherapy for Lisa’s type of cancer). The social worker complained that they seemed quite “strange”. The Sydney Oncologist was also unnerved by the parents’ request for information. He reported back to DoCS that; “The parent’s behaviour and decision making about basics shows significant departure from normal behaviour in our society.”

Meanwhile in the absence of medical evidence the parents did not enter into any agreements about chemotherapy for Lisa. The doctor was quite clearly looking for other reasons as to why the parents were not convinced about chemo. He noted; “I don’t feel it’s only the family’s decision, but perhaps the church or influences from grandparents and extended family members.” 

Lisa and her family were nondenominational.  They had never gone to a church in search of medical information. 

The family returned to see Dr. M, the Sydney Oncologist the following week. He told them the bone scan was clear, as was the former site of the original mass. But the CT scan revealed that Lisa had a plum sized mass attached to the lower pole of her spleen which did not appear to be a solid tumour mass, but appeared cystic or fluid filled. The doctor told the parents that Lisa was now in urgent need of chemotherapy and he wanted to start immediately. James told Dr. M he would give him an answer in a few days, and the family returned home. The doctor contacted DoCS and told them he was concerned that Lisa would drop dead at any moment.

By now the family had travelled from home to Sydney to Melbourne for professor C’s treatment and back home again. Back on the farm the family’s reunion was held under a cloud. Lisa was quieter than usual as she was forced to reconsider her treatment options. She told her parents that she had seen kids who’d had chemo at the hospital and she had decided that if that were her only choice she would rather die happy, surrounded by her family and animals. No sooner had the family settled down from their exhausting trip, than another visitor arrived from DoCS to question Lisa. She was beginning to sense the pressure keenly, and it was beginning to show. Lisa was more reluctant than ever to talk to strangers. Later she told her father; “I don’t want chemotherapy, Dad, there is no guarantee that I would live.”

Meanwhile the department of Community Services (DoCS) intervened swiftly and took the case to the Supreme Court where Lisa was made a ward of that Court.

In the week prior and just after the court hearing, James’s car was broken into twice, the money he had in the glove box was untouched. Their home had also been entered during the Queen’s Birthday long weekend. Nothing but important papers had been taken, all of them pertaining to Lisa’s court case. 

Involuntary chemotherapy was started on June 13, and lasted for three days. Lisa was so sick during the procedure the hospital staff warned that she could die from the treatment. Within days Lisa had brown striped skin discoloration over her body and her hair began falling out in clumps. She was allowed home to recover. Two weeks later she presented to Dr. Roehrich, hardly able to stand. She was pale and listless. She said very little. The doctor noted that she’d had severe and prolonged nosebleeds, a sign of a low platelet count, and upper respiratory tract infection, along with an active chest infection. She’d also had abdominal discomfort and cramping since the treatment. The doctor recommended a pro-biotic lactobacillus powder to restore the bowel flora after the chemo’s massive gut cell kill-off had disturbed bowel function. Lisa later reported this had helped her “a lot”. He wrote a medical certificate declaring Lisa as “unfit to receive another dose of chemotherapy at this time”. In addition Lisa was still suffering from a heavy chest infection and seemed unfit for any invasive procedure. 

The following day her parents were compelled to bring her to the Sydney Children’s hospital. The DoCS’ legal representative wrote a letter to his Honour, the Supreme Court Judge, notifying him of the fact that Lisa would be operated on forthwith to remove her spleen. As Lisa was wheeled into the operating room, her parents were told this was a court order and were given no opportunity to sign a consent form. As James and Elizabeth waited for Lisa to come out of surgery they were left wondering why it was that since Lisa had had the chemo, (which was supposed to decrease tumour size), her splenic lump had doubled in size. The staff could not give them an adequate explanation. Now their child was suffering from the post-operative complications of a severe chest infection for which she could not have oxygen because she had had Bleomycin as one of her chemotherapeutic agents, which when combined with therapeutic oxygen, can cause lung damage. Lisa was in agony for a week post operatively while she tried to cough and clear her chest without tearing her abdominal sutures. Ten days after surgery she still had not eaten much. Hunched and frail, barely able to get out of bed, she received a visit from the DoCS legal personnel and caseworkers. They sent her grandmother out of the room and when they were alone with her, they impressed upon Lisa that she was a ward of the Court and without chemotherapy, they claimed, she would certainly die. DoCS social workers were determined to make Lisa aware of her “rights”. Lisa had never in her life heard so much about death as she had since the people from DOCS had come into her life.

Dr. Roehrich visited Lisa at the hospital. He was shocked at Lisa’s emaciated state and the large amount of weight she had lost. He noticed that the child was unusually quiet and withdrawn, hardly bothering to look up, even at her mother and grandmother. Since he had seen the parents last he had investigated a number of clinics in various countries that had had quite surprising success with integrative and natural cancer treatments, but it seemed a mute point at the time. He was also in the process of conducting a search of the
medical literature about chemotherapy treatment for Lisa’s cancer, and what he found was beginning to surprise him. But for the time being he decided to keep it to himself. His concern was with Lisa’s emotional wellbeing, which had clearly suffered since she was forced to undergo treatment. Most of all he suspected her main suffering came from the fact that the Court was now her parent. And there was another hearing scheduled.
Dr. Roehrich decided to address the court directly with the following plea on Lisa’s behalf:

July 23, 2003
To His Honour Judge (name deleted),
Re: My patient; (name and date of birth deleted)

I, Dr. Eckard Roehrich am a registered medical doctor, having practiced medicine in New South Wales since 1982. Prior to that time I practiced medicine and surgery in Hamburg, Germany where I was board certified in general surgery and trauma surgery. In addition to my medical degree I hold a PhD in Experimental Medical Physiology from the University of Kiel. Please refer to my CV for further professional details.

I can confidently say that I am well grounded in conventional medical approaches to cancer such as surgery and chemotherapy. However during the last 20 years of medical practice, I have also undertaken further professional training in environmental and nutritional medicine, which includes nutritional and complementary and alternative approaches. I have practiced an integrated approach to medicine for over 20 years, encompassing both orthodox as well as alternative treatments for a variety of conditions including cancer. I currently use a variety of modalities and integrate them according to the patient’s needs. This includes: pharmaceutical approaches, nutritional medicine, surgery, acupuncture, diet, orthomolecular medicine, hormone therapies (where required), intra-venous therapies and counselling. I have found many positive outcomes using this integrated approach with few side effects. It can also be tailored to individual
needs and tolerances.

I have read all available legal material and medical records pertaining to (“Lisa”), to this current time. I first saw (Lisa) on 19.5.03 at my surgery at which time she had been recovering from surgery to remove a left ovarian tumour in November 2002. Despite rising tumour markers at the time she looked remarkably well. She had been undergoing treatment under (Professor C.) at the time and the treatment regimen was in the process of being reassessed when the Department of Community Services (DoCS) intervened, as I understand it, at the behest of (Dr. A) who had formed the opinion that Lisa would die if she did not undergo his recommended treatment consisting of high dose chemotherapy. As a result of this action (Lisa) became a ward of the Court and subsequently underwent further surgery and a cycle of chemotherapy,
under the supervision of Dr. A’s nominated colleague (Dr.M). (Lisa) tolerated the chemotherapy very poorly with major side effects, which I documented at the time of her visit to my surgery on 3.7.03. During her involuntary hospitalisation and treatment I noted that (Lisa) had become very despondent, refused to eat and suffered significant weight loss.

I understand that in the interim Mr. and Mrs. (deleted) have sought medical advice from Dr. Kenyon, a physician in the UK with an integrated approach. I am familiar with the regimen Dr. Kenyon proposes and would be happy to oversee his protocol. I would be equally willing to continue monitoring (Lisa’s) treatment and be involved in administering other integrated approaches, should the court so decide. My preference is to brief a specialist oncologist who is versed in both orthodox and integrative approaches. I would be happy to treat or monitor (Lisa) under his supervision.

It is not my intention at this time to argue the merits or shortcomings of either approach to treatment of (Lisa’s) condition. And in my opinion it is most unfortunate that the family has been caught in the crossfire between medical opinions, when it is obvious to me that they had widely researched the available treatment options and were trying to provide their daughter with a range of therapeutic options up until the time (Lisa) became a ward of the Court by way of DoCS intervention.

I can state with absolute certainty the fact that (Lisa) is a very intelligent girl. She has heard a great deal of discussion from staff about her care, and about the “likelihood” of her “death” if she does not pursue Dr. M’s and Dr. A’s treatment. She is aware that Dr. A and Dr. M have recommended to DoCS that her parents have limited access to her. Furthermore (Lisa) is aware of their advice that she be entirely removed from her family and placed in foster care and furthermore that she involuntarily undergoes another 3 to 4 cycles of chemotherapy such as the first course which caused severe side effects. I have closely monitored (Lisa’s) progress since before she became a ward of the Court. It is my opinion that removing (Lisa) from her closely-knit family would be tantamount to collapsing this child’s life and removing from her all that she knows and holds dear. Placing her into an alien environment and severing bonds between (Lisa), her parents and her sisters and brothers, would cause her such excruciating emotional pain and stress that this
cataclysmic event alone can be reasonably expected to shorten her life expectancy even if the forced treatment she undergoes is guaranteed to work, which it is not. Indeed, as I had occasion to observe recently, the mere threat of this possibility, while (Lisa) is forced to languish in the hospital environment, is already deeply distressing to her, and is set to undermine her chances of recovery, no matter what modality is used.

Children undergoing chemotherapy are at considerable risk of developing post-traumatic stress disorder, even when supported by a loving family. It is difficult to imagine how (Lisa) would endure this extremely unpleasant procedure after she has been virtually orphaned by the persistent actions of the department of community services claiming to act in her best interests.

So far (Lisa) has not been consulted about her management. Her only way to register her disapproval has been her periodic refusal to eat in the hospital. She will be 12 years old in [deleted] weeks. With the utmost respect, my recommendation is to allow (Lisa) her voice. I also respectfully recommend she be allowed to return home to a family environment while the merits or shortcomings of her management are argued elsewhere but at her bedside. If you will allow me to make one further suggestion, I would request that the court considers allowing two oncologists with integrative approaches to be briefed on (Lisa’s) condition. I would be happy to assist with this.

I would be happy to provide Your Honour with further and better particulars if required.

Sincerely Yours,
Signed
Dr. Eckard Roehrich MBBS PhD

What About the Side Effects?
"Patients who underwent chemo were 14 times more likely to develop leukemia and 6 times more likely to
develop cancers of the bones, joints, and soft tissues than those patients who did not undergo chemotherapy
(NCI Journal 87:10)."— Dr.John Diamond MD

Lisa 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 Lisa 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 Lisa 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: 

“If spills occur, restrict access to the affected area. Wear two pairs of gloves (latex rubber), a respirator mask, a protective gown and safety glasses.…spills to be treated with sulfuric acid with potassium permanganate…cytotoxic waste should be regarded as hazardous or toxic and clearly labelled…and should be incinerated at 1,100 degrees C.” (49)

Far from being able to reassure Lisa 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 Lisa 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 Lisa’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.

Lisa was hastily discharged from Sydney Children’s Hospital when Dr. M felt the case was too troublesome. The Eastleigh’s questions were now becoming somewhat difficult when asked in front of other parents. He discharged Lisa 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 Lisa to be removed from her parents and confined to the Hunter Children’s hospital for extensive chemotherapy treatments. The doctors further recommended Lisa 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 Lisa 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. Roehrich’s opinion as Lisa’s primary care doctor. And the Judge evidently took no account of Dr. Roehrich’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)”