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| From the archives of The Memory Hole |
HIV=AIDS Controversy: Judicial Opinion
The life of a 4-year old child, who had tested positive for HIV and had faced the prospect of enforced treatments, was spared by a Maine judge in a decision which, among other things, underscored the fact that AIDS therapies are tantamount to poisoning by prescription.
STATE OF MAINE
PENOBSCOT, SS. DISTRICT COURT
Located at Newport
Civil Action
Docket No. NEW-98-PC-17
IN RE: NIKOLAS EMERSON
JUDGEMENT ON PETITION FOR CHILD PROTECTION ORDER
Hearing held: September 10, 1998
FINDINGS OF FACT
The Maine Department of Human Services has filed this petition for order of child protection on the basis of an allegation that Valerie Emerson, the custodial parent of Nikolas Emerson, is exposing her son to circumstances of jeopardy to the child's health or welfare by refusing to provide for him necessary medical treatment for his illness. Nikolas, age four, has been diagnosed as being infected with human immunodeficiency virus (HIV). Nikolas's mother, father, Roland Dubay, and sister, Tia Dubay were all diagnosed with the same illness. Mr. Dubay and Ms. Emerson are divorced and Ms. Emerson has been allocated the exclusive right to make all provision for the children's medical treatment. Mr. Dubay is currently receiving a medically prescribed regimen of drug therapy for his condition. He is not a resource for care or custody of Nikolas. Ms. Emerson has received similar drug therapy prescribed by her family physician, Jean Benson, M.D. Ms. Emerson's oldest child, Zakary, and her youngest child, Jacob, are apparently not infected with HIV. Ms Emerson was diagnosed as being HIV positive during her pregnancy with Jacob. She took the medically prescribed drug treatment during her pregnancy and followed appropriate medical advice to avoid infecting the infant after birth. However, not liking the side effects of the drug treatment, she discontinued it for herself.
On January 22, 1997 Tia Dubay died of complications directly related to her HIV condition despite being on a medically prescribed drug therapy treatment. She died a few days short of her fourth birthday and suffered terribly during the last many months of her life. Understandably, this circumstance shook what faith Ms. Emerson had with such powerful drug therapy. However, on her family doctor's advice she reluctantly started Nikolas on similar drug therapy in the fall of 1997. Nikolas suffers periodic ear and eye infections and bouts of pneumonia as a result of the effects of his suppressed immune system. For every such occurrence Ms. Emerson brings Nikolas to appropriate medical providers. She does not always agree with the specifics or modes of prescribed treatment because she distrusts invasive procedures, but has never let her position block ultimate treatment. This active involvement and micro-management of her children's hospital/medical treatment often irks the doctors and nurses involved and sometimes frustrates them when she insists in avoiding procedures and over-night hospitalization or takes a fatalistic approach to the terminal nature of HIV. However, in the opinion of Dr. Benson, who has occasionally been inconvenienced herself by Mr. Emerson's attitude or approach, this mother's actions have never risen to a level of neglect or withholding of vital medical treatment for her children. The court has reviewed all medical records in this regard and agrees with this assessment. Dr. Benson actually sees this mother more often in her family practice than she does other mothers of children under care.
In the late summer of 1997 Dr. Benson heard that an authorized trial program of aggressive drug therapy for children who have Nikolas's illness was being conducted through the Infectious Diseases Clinic at Children's Hospital in Boston. She lacks the expertise in this specialty and asked Ms. Emerson if she would like to look into getting Nikolas into the trial program. Ms. Emerson agreed and Dr. Benson referred the matter to Dr. John Milliken, a specialist in pediatric infectious disease practicing in Bangor. Dr. Milliken had dealt with Ms. Emerson, as he had occasionally consulted on the care of both Nikolas and Tia at Eastern Maine Medical Center. He agreed to examine Nikolas for participation in the program and make medical recommendations. He examined Nikolas and spoke with his mother in September, 1997. During this meeting he learned of Ms. Emerson's strong distrust of powerful drug therapy for her son and her reluctance to enter the program. The court accepts as accurate that the drugs prescribed in such therapy (only highly active protease inhibitor plus two nucleoside analogue reverse transcriptase inhibitors (NTRI's)) are very potent and cause often unpleasant side effects in adults and children. The drug therapies taken by Tia, Ms. Emerson, and Nikolas primarily involved one drug, AZT, an NTRI. This type of mono therapy, although accepted as conventional medical treatment until at least mid-1997, is now not recommended by the experts in the field for children of Nikolas's age. Ironically, Ms. Emerson's actions to discontinue such mono therapy appears, in hindsight, to predate, but be in conformity with the consensus of leading experts in the field as evidenced by the April, 1998 Guidelines of the Use of Antiretroviral Agents in Pediatric HIV Infection issued by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services. This is not due to Ms. Emerson's advanced knowledge or expertise in HIV treatment, but instead is more a product of the ever-changing nature of the art of treating children with this condition. However, at the time Dr. Milliken saw Ms. Emerson and Nikolas in September, 1997 he did not believe that Ms. Emerson was administering the AZT to her son as reported by Dr. Benson. This was a belief based on hunch rather than any reliable evidence and apparently steeped in distrust of this patient who had questioned the advice of medical experts, including himself, who treated her children in the past. Troubled by this mother's apparent rejection of his medical recommendations of highly aggressive antiretroviral therapy (HARRT) for her son, Dr. Milliken wrestled with the issue of whether this constituted child abuse through medical neglect and did not write his referral report to Dr. Benson until November 18, 1997. He admits that he finally made up his mind on this issue in November when he himself was updated on the newest state of medical theory in this area. In that letter he recommended the HARRT treatment protocol similar to that offered through the Children's Hospital program, but went on to suggest that Ms. Emerson was incapable of adequately managing medical care for her son and that her parental right to manage his medical care should be removed. He also informed Dr. Benson that mono therapy was not appropriate for Nikolas at that time, and that Ms. Emerson's delay in providing needed care for Nikolas was detrimental to his health. Dr. Milliken had, himself, unnecessarily delayed almost two months in responding to Dr. Benson's referral.
The event which instigated this litigation was that Dr. Milliken also sent a copy of his consultation letter to the Department of Human Services. The Department contacted Ms. Emerson and Dr. Benson suggesting a referral for a second opinion from Kenneth McIntosh, M.D., a professor of pediatrics at Harvard Medical School, chief of Division of Infectious Diseases at Children's Hospital, and head of the AIDS program referred to above. Dr. Benson, who felt that Dr. Milliken had been unfair, precipitous, and recklessly uninformed in mis-characterizing her patient, persuaded Ms. Emerson to agree to take Nikolas to Boston to consult with Dr. McIntosh. This meeting took place in March, 1998 and Dr. McIntosh saw no irrationality on the part Ms. Emerson. He felt that Nikolas would benefit from participation in the aggressive drug therapy program, but disagreed with some of the medical findings or conclusions set forth in Dr. Milliken's consultation report. Further, he has never reported a child patient's parents to child protective agencies for failure to accept medical recommendation to participate in this drug therapy program.
Ms. Emerson returned to Boston on her own later to have further discussion with Dr. McIntosh about the relative risks and long term effects of this proposed therapy on her son. Dr. McIntosh gave her all the information currently available from the limited experience the medical community has had in this treatment for children and could not give her any definitive information concerning long term effects. This drug treatment regimen is still in the evolving stages. Because of the stepped-up FDA approval of drugs and programs in this area due to public and political pressure nation-wide, all ongoing AIDS treatment programs (especially for children), when compared to traditional methods of approving medical drugs and treatment protocols, are experimental. In effect, treatment is being provided to sufferers of this illness at the same time as statistics and efficacy studies are being conducted. The various regimens are changing constantly, and it is expected that new and more effective drugs and treatment protocols will emerge each year, if not sooner. It can be fairly said that the HARRT regimen was still in experimental stages when Ms. Emerson first consulted with Dr. Milliken. The CDC published its guidelines for children's HIV treatment over six months later, making this regimen conventional state of the art. Dr. McIntosh, who represents the best this country has to offer in this expertise, as well as Dr. Milliken, realize that society is probably just trying to do the best it now can in this puzzling area of medicine with the limited tools and knowledge at hand until the next generation of therapies become available from ongoing research. The state of this practice vividly demonstrates that medical healing is truly an art, not a science.
Dr. McIntosh feels that because Nikolas's blood tests (viral load count and CD4 cell count) meet the CDC guidelines qualifying him for aggressive drug therapy, the child may well benefit from such treatment. However, this benefit cannot be quantified. No good estimation can be given either on whether or how much longer Nikolas will survive solely because he participates. Dr. McIntosh is of the opinion that no child should be started on this program unless his parents are fully accepting and in support of the treatment. No one seems to know what the long term effects this regimen will have on Nikolas.
Ms. Emerson has yet to agree to the therapy and clearly states that her mind is not completely closed on the issue. Although she would rather spare Nikolas the effects and risks of this treatment, if his health begins to deteriorate significantly, she will reconsider and would now, if ordered, comply with treatment. She feels that to remove Nikolas from his home would kill him. This boy has never spent a full night away from his mother's home, is always in the company of family, and is kept out of public areas as much as possible. An example of this, which logically explains Ms. Emerson's removal of her sick children from hospital settings as soon as possible against medical advice, is that she and Dr. Benson feel that exposure of Nikolas to places like hospitals where opportunistic infections abound is not healthy for him. The court finds that removal of Nikolas from his home would have a severe and detrimental effect on his well being. Even Dr. Milliken agrees with this. Ms. Emerson's position regarding Nikolas's therapy and HIV treatment has been thoroughly discussed with Dr. Benson and is the product of extensive research on the HIV/AIDS treatment issue. This scientific and medical information gathered by Ms. Emerson has been filtered through her own experience with the disease and the drug therapy, her ex-husband's experience in this regard, the effects seen on Nikolas and, understandably, the failure of similar, then state-of-the-art, medical treatment of her daughter with this disease. She feels that she has willingly and in good faith surrendered up the life of one child to the best treatment medicine has to offer and does not want to do the same with the next. Nikolas has made significant strides recently in gaining weight and overcoming developmental deficits and appears happy and healthy. She does not want to see this child take on the pallor and pain of a sick and dying child. Everyone knows that Nikolas will probably die of his disease someday. No one knows when. Dr. McIntosh best sums up the medical observation of having to suffer a terminal illness by stating that all people suffer from the terminal illness called life.
CONCLUSIONS OF LAW
It is a legitimate and proper role of the State of Maine to be available to step in to protect the welfare of children if their parents are subjecting them to serious abuse. This includes the situation where a parent may be withholding from the child necessary, available, and reasonably effective medical treatment for a life threatening illness or condition. The parent of a child does not have an unfettered right to dictate the level of medical treatment for his or her child if the chosen course places the welfare and well being of the child in jeopardy. If such a parent refuses to comply with necessary treatment, the court has the authority and duty to take whatever steps are minimally necessary to ameliorate that jeopardy, even if it means removing the child from the parent's custody or control. However, this power should be exercised sparingly and with due consideration of the rights and obligations of a parent to determine the development of and provide safety for a son or daughter. Not all abuse or neglect is intended to be remedied by such interference. Only those situations arising to serious abuse or neglect warrant governmental intrusion.
The initial issue presented in this case is whether the decision of Ms. Emerson to delay drug therapy for her son is rational and reasoned. The court feels that it is. The next issue is whether that decision, despite being the product of a reasoned approach, still places Nikolas's health or welfare in jeopardy by bringing about or threatening serious harm or depriving him of health care when that deprivation causes a threat of serious harm. A "threat" as intended in this context is "an indication of imminent danger, harm, evil, etc�" (Webster's New World Dictionary of the American Language, Second College Edition).
It is the obligation of the petitioning Department in this matter to prove by a preponderance of the evidence that Ms. Emerson's deprivation of reasonable and effective health care for her son by now refusing to enter him into HIV/AIDS aggressive drug therapy constitutes an imminent threat of serious harm. The Department has proven that according to the current conventional medical wisdom in the relatively new and rapidly evolving art of treating children with certain elevated levels of HIV in the blood, that Nikolas would benefit from such treatment. However, it has not sufficiently proved what that benefit will likely be and that no significant injury or harm may ultimately befall the child if that therapy is now commenced. The mono therapy, which the best doctors told Ms. Emerson was appropriate for her daughter many months ago failed fatally and is now not recommended by the same experts. Instead, they have recommended a more aggressive and powerful therapy. They may be right in this advice. Current statistics can be interpreted that they may also just as likely be wrong. If so, they will move on to better and more informed attempts to cure this as yet incurable disease, but Ms. Emerson will bury another child. She has placed her faith in this medical approach in the past and has lost a child. She has discontinued her own treatment with no apparent present ill-effects. She has observed an outward improvement in her sick son's condition with a discontinuance of drug therapy. The State of Maine is now in no position to tell her in the face of her unique experience that she is wrong in her current judgment to wait for better and more reliable treatment methods. In these circumstances and with the relative uncertainty of the efficacy of the proposed treatment, it can only reasonably be left up to the parent to make an informed choice in this regard. This she has done, and if that decision is wrong and exposes Nikolas to jeopardy, it is only because the current body of information available to any mother in her situation is limited or conflicting. The court agrees with Nikolas's treating family physician that his mother's decision, while not necessarily the one many parents may make in the same circumstance, does not constitute serious parental neglect.
Accordingly, the petition for child protection order is dismissed.
The Clerk may incorporate this Judgment with findings and conclusions upon the docket by reference.
So ordered.
Dated: September 14, 1998
Douglas A. Clapp JUDGE, MAINE DISTRICT COURT
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