28 Oct 2010

Closed hearing for 13 year old boy refusing chemotherapy for religious reasons

The Journal - Minnesota May 9, 2009

By Kurt Nesbitt — Journal Staff Writer

NEW ULM - The court decision on whether or not a Sleepy Eye boy will have to undergo chemotherapy will not be made today, said a local judge on Friday.

Brown County District Court Judge John Rodenberg told the court at the end of the day Friday that the boy, Daniel Hauser, 13, of Sleepy Eye, will testify Saturday morning at a closed hearing in the judge's chambers in front of attorneys for all of the parties in the case.

The judge said he will not have a decision in the matter this weekend. Rodenberg said the testimony will be closed but will be a part of the record of the case. He told the court a decision is unlikely to happen today.

The court, which was full of family, supporters and media, received the announcement at the end of a full day of testimony in the child protection case involving Hauser and his decision not to have chemotherapy for his Hodgkin's Lymphoma.

Attorneys on all sides of the case agreed to skip their opening statements and agreed on four facts before testimony began. They stipulated that Hauser has Hodgkin's Lymphoma, that the mass in the middle of his chest was reduced by a round of chemotherapy, that Hauser and his family are opposed to chemotherapy because of their religious beliefs, and that the Nemenhah band which the family belongs to considers Daniel to be old enough to direct his own treatment.

The day was filled with testimony from three doctors who have seen Daniel Hauser over the past five months, as well as testimony from Hauser's mother, Colleen.

Children's doctor uses 'alternative medicines' to augment conventional treatment

Dr. Bruce Bostrom, a pediatric hematologist and oncologist for Children's Hospitals and Clinics in Minneapolis was the first witness called by Brown County Attorney James Olson.

Bostrom saw the Hausers in January after Daniel was referred there from the clinic at Sleepy Eye Medical Center. Bostrom testified that Daniel Hauser was having symptoms related to a tumor, such as fatigue and weight loss. Bostrom made the first diagnosis that Daniel Hauser had nodular sclerosing Hodgkin's Lymphoma after Hauser underwent blood tests, CT and PET scans and a biopsy. Bostrom said Hauser was at stage 2B of the cancer when he saw the boy.

Evidence-based trials found that chemotherapy treatments have a 90 percent success rate with the type of cancer Hauser has, Bostrom said.

The Hausers had asked if they would have time to get their affairs in order, and Bostrom said he felt it was acceptable to let Daniel return to Sleepy Eye. When he returned to Children's, Daniel had a large tumor in his chest and he underwent emergency chemotherapy on Feb. 5, Bostrom testified.

Bostrom told the court he and Colleen Hauser discussed the side affects and that she agreed to the treatment. Daniel's symptoms were worse, he said, because the cancer was more advanced. His second chemotherapy treatment would have taken place in March.

The Hauser family asked for a second opinion and Bostrom recommended a doctor at the Mayo Clinic. Bostrom said he has not seen the Hausers since then.

He said that, in his opinion, Daniel has a five percent chance of surviving the next five years of his life without chemotherapy.

Attorneys asked if Bostrom uses what they called "alternative medicines." He said uses them as complimentary therapies because they are considered non-traditional methods for cancer treatments, but can be used for treating side affects. Bostrom said his medical opinion is that they have "no curative effects."

Under cross examination from Calvin Johnson, the Mankato attorney representing Daniel Hauser's parents, Bostrom agreed that nutrition is important because it helps the body tolerate the treatment.

When asked about what age he feels is appropriate for someone to refuse treatment, Bostrom said he doesn't think a child under the age of 18 has a right to refuse treatment.

When asked about side affects of treatment, Bostrom said chemotherapy decreases a person's white blood cell count for seven days, and the risk of infection depends on the intensity of the therapy.

Bostrom said that even if Daniel's chances of survival fell to 50 percent, he thinks Daniel would still have "reasonable odds" of surviving.

If the cancer became resistant to chemotherapy, Daniel would need a more aggressive therapy such as a stem cell transplant, which most patients survive. The people who don't survive usually die from infection, he said.

Bostrom said he has never had a patient refuse treatment. He said he doesn't think religious beliefs are a legitimate basis to refuse therapy.

Bostrom said that as a Christian, he believes prayer is useful "as an adjunct to those who believe in it."

He said there is a small risk of death with chemotherapy, since a study found only one death in 800 cases. He said drugs and alternative therapies reduce the risks associated with cancer treatments.

Bostrom said he has an established protocol for cancer treatment. He initially recommended six rounds of chemotherapy, and if Daniel's body would have responded, Bostrom would have continued that treatment.

Under cross examination from Daniel's own attorney, Phil Elbert, Bostrom said he has never reported a possible case of medical neglect in 25 years of practicing medicine before he examined Daniel Hauser. He said he has allowed patients to deviate from his recommendations in situations where he feels that doing so is acceptable.

Bostrom agreed that emancipated minors - children who are legally separated from their parents - are an exception to the rule of thumb that children under 18 cannot make decisions in their own treatment.

Chemotherapy and radiation increase a person's risk of heart disease and non-Hodgkin's Lymphoma, leukemia and lung cancer, Bostrom said.

Elbert asked Bostrom what he would do if Daniel resisted treatment. The doctor replied that the question was "hypothetical" and said he would try to work with Daniel to resolve the issue.

Elbert said Daniel has already filed an affidavit with the court indicating he would not undergo chemotherapy.

"So if you're unsuccessful, what's the next step?," asked Elbert.

"There is no next step," Bostrom replied.

Elbert asked the doctor if he would force Daniel to undergo the treatment. Bostrom said it "would be difficult."

"I understand it would be difficult, but would you do it?," Elbert asked.

Bostrom replied, "I don't know."

Attorney Tom Sinas of Minneapolis, who represented Brown County Guardian Ad Litem Shiree Oliver, asked Bostrom if he was familiar with what Sinas called "alternative therapy," and Bostrom said he is. He said treating cancer with alternative medicine does not meet with accepted standards and that he thinks there is "no medical or scientific basis for doing that."

Sinas showed Bostrom Daniel Hauser's chest x-ray from April 2 and a radiology report from April 23 of another chest x-ray done on the boy.

Bostrom said the two reports together showed the tumor in Daniel's chest increased from the first x-ray to the second x-ray, which means the tumor is probably growing. He said the cancer may metastisize - spread further through the body - either through blood or through the lymphatic system.

Bostrom testified that he thinks there is nothing in alternative therapy to stop the spread of the cancer and he thinks death will be the ultimate outcome for Daniel Hauser. He said that when he spoke with the osteopathic pediatrician who also gave the family a medical opinion, Dr. Jeff Kotulski of the Between Being Healing Center in Mankato, Kotulski "did not disagree".

Bostrom said Daniel was quiet during his interaction and that his mother, Colleen, "did all the talking for him." Bostrom said the boy rarely spoke to him or answered the doctor's questions.

He said Daniel was lead to believe chemotherapy will kill him. Bostrom said his opinion is that "the benefits (of chemotherapy) outweighed the risks."

Bostrom said he does not consider the family decision "medically or scientifically supported" under re-cross examination by Elbert.

Mother defends decision, beliefs

Daniel's mother, Colleen Hauser, was the next witness Olson called. She said she initially took Daniel to the Sleepy Eye clinic in January, and a doctor there referred Daniel to Children's Hospital, where Bostrom made his diagnosis a week later.

She said that when Daniel's treatment was discussed, she gave her consent because she felt pressured. She said her understanding was that if she wanted another round of chemotherapy, they could have one.

"But if we don't need any, then why?," she said. "Daniel made it clear he didn't want it."

Colleen said she was emotionally distraught at the time she gave her consent, and did not realize what she was doing. She did not return to Children's Hospital, but went to the Mayo Clinic, where doctors gave the same answers. Unsatisfied, Hauser went to the University of Minnesota Medical Center-Fairview and received the same answers as before. She said she chose to ignore the advice because she had found a doctor in the metropolitan area.

Olson asked how Daniel's cancer was being treated. Colleen said they are treating it by "starving it, by not feeding it." She said she found some information on the Internet and started giving Daniel high-PH water, many supplements and an organic diet that includes lots of greens and lightly-sauteed rice.

Olson asked the mother whether or not she would make her son take chemotherapy.

"That is a question for Daniel. He has the final say because it's his body," said Hauser.

Olson asked her what she would do if the cancer ever got out of control. Colleen Hauser said she would talk to Daniel if his cancer ever got out of control.

Olson asked her about the April 23 X-ray, which is said to show the tumor after it had grown. Hauser said she does not believe the tumor is growing.

She said financial matters were not the family's reason for rejecting conventional cancer treatments and repeated that Daniel made the decision and that she supports it.

"Traditional medicine is our belief," she said.

Olson asked her if Bostrom's testimony made her think differently and Hauser said it did not change her viewpoint.

Questioning then turned to the family's connection with Nemenhah, a Native American religious organization. Hauser said her family received the information through friends and her entry into the band was done partially in person and also through the mail. She said she presently studying Nemenhah and has pamphlets and literature from the group.

Under cross examination from Johnson, Hauser said her family joined Nemenhah before they knew Daniel's diagnosis. She said a blood test was performed Thursday "and it was good. We have no reason to believe Daniel is in any immediate danger."

The family has been busy on their farm, raising cows and planting crops, and are behind on their farmwork because of a back injury her husband had and because of the case.

Hauser said she felt "intimidated by the whole process" at Children's Hospital.

Hauser said she believes the therapy works. She said she wants her son to live. She said she thinks Daniel understands the nature of his illness.

Under questioning from Elbert, Colleen Hauser said she does believe in modern medicine and her family has used hospitals in the past. She said if a member of her family was sick, she would take the person to a doctor.

Elbert asked her if she would give a pill that could cure cancer without side affects to Daniel. She replied that she would want to research it "because you don't know what's in it."

She said doctors told her about the risks associated with not seeking cancer treatments.

She said her solution was not to do nothing about Daniel's situation, but to do something else instead.

She has had traditional medicine beliefs since before she married.

Hauser said she has never attended medical school, has no medical training and is not a nurse. She said her family will cooperate "when we need to talk, when he needs medical attention and he does not need that right now."

She said Daniel, who is a Nemenhah medicine man, can practice the band's medicine but is not licensed to practice conventional medicine.

She does not object to radiation even though she believes radiation may be harmful.

"We believe in traditional methods. To strip that away would be stripping his soul right out of his body," she said.

When Olson asked more questions, Colleen Hauser said she understands Bostrom's point of view but does not agree that Daniel's cancer will metasticize. She said she would give permission for chemotherapy treatments if it were a matter of life and death, but would not agree to routine treatments. She said the survival rate with traditional medicine is "one hundred percent."

Doctor family sought endorses chemo and 'traditional medicine' together

On Friday afternoon, Daniel Hauser's attorney, Phil Elbert, announced that Daniel chose the right juveniles have under state statute not to be present at the trial.

He called Dr. Jeff Kotulski, a pediatric oncologist from Mankato who testified by telephone from a conference in Chicago.

Kotulski said he has had the same training and practice as conventional doctors but that doctors of osetopathy have philosophical differences with them. Kotulski said he told the Hausers he does not have the training to perform cancer treatments. He said he offered the family nutritional advice as an additional treatment, but not as a replacement for it.

Kotulski encouraged the Hausers to seek a second opinion and to seek a standard treatment for the type of cancer Daniel has. Kotulski said chemotherapy and radiation are the standard treatment he recommended.

Kotulski saw the Hausers on April 23, and X-rays were taken. He said a chest X-ray taken on April 29 showed an increase in the size of the tumor.

"It was a significant concern because the X-ray on the first visit showed smaller," he said.

Kotulski expressed his concern to the family and recommended they make an oncology appointment because of the urgency of the situation. He said he mentioned on both occasions that Daniel might die. He said Daniel indicated he understood the risk and said he didn't want treatment. Daniel also expressed fears about chemotherapy and was specifically fearful of the side effects because of the blood clot he had in his arm after his first round.

Kotulski said cancer has strong links with nutrition, although there are no trials to show it can treat cancer. Nutrition helps fight cancer because it boosts a person's immune system. Kotulski said clinical trials are presently underway but have had no definite result, so nutrition would be considered "adjunctive to chemotherapy."

As doctors learn more about nutrition, they are implementing their findings, he said, because they believe in nutrition's potential to enhance a person's immune system.

Kotulski said he believes chemotherapy with the use of complimentary medicine to help are the appropriate treatment for Daniel's type of cancer.

He said he was aware of Colleen's sister's death from chemotherapy and believes the experience of it will inhibit Daniel's treatment.

Kotulski said he can "respect anyone's decision, but it's based on fears and not on objective information."

Kotulski said under cross examination from Sinas, the attorney for the guardian ad litem, he would not refer to natural medicine alone because he believes it is "not according with the standards of medical practice."

He said the family's fears are because "they are not familiar with it".

"Those fears are a part of a belief system. They're not supported by scientific literature," Kotulski said.

Kotulski is not aware of any studies on nutrition. He said pharmeceutical companies fund most studies, and the federal government funds some of them. He agreed that the two entities are "the people who make chemotherapy."

Kotulski also agreed, under questioning from Elbert, that the family's fear is also unsupported by literature. Literature has talked about radiation and the risk of secondary cancers, such as non-Hodgkin's Lymphoma, hyperthyroidism, infertility, heart disease and said he thinks it rational to have fear.

Mayo doctor sees 'ethical issues' presented by case

Dr. Vilamarie Rodriguez, a pediatric hematologist and oncologist at the Mayo Clinic, saw Daniel Hauser when the family sought a second opinion. She reviewed Borstrom's reports and recommendations and also had concerns about Daniel's situation. She testified she told Colleen Hauser that Daniel's cancer could get worse, and that Colleen said she wanted to wait and only wanted Daniel to undergo treatment if it came back.

Rodriguez testified Daniel Hauser's cancer was not in remission when she saw him, although he had "a good round" of chemotherapy. She said Colleen Hauser "kept saying she wanted to wait and keep testing."

Rodriguez testified she told Colleen Hauser that she would be forced to "refer to the court system or an ethical committee."

Rodriguez also said she thinks Daniel will die without chemotherapy. She said she agreed with what Bostrom prescribed and a second biopsy was not done.

Elbert asked Rodriguez if she would force chemotherapy if the court ordered it. She said she "made an oath to provide the best care and to provide a child with a chance." She said the word "force" had "some connotations I don't like."

Rodriguez said she "will do whatever is necessary."

Elbert asked if she would restrain Daniel. She answered that medication can be administered in different ways. She said she does see a need to restrain patients, but has never had to actually do it. She said she wouldn't do something that would hurt a child.

She said the Mayo Clinic has teams of people who help patients with emotional issues and help children understand their treatments.

Elbert asked if Rodriguez had ever placed a patient under anesthesia and she replied she has never had to do it.

"I don't know if you can ethically do that," she said.

Rodriguez said children who are scared to be treated for cancer are common because of the treatment and because of changes in body image. She said it is normal for a 13 year-old to be scared of treatment. She said she has never had to sedate anyone for treatment.

Once Rodriguez finished testifying, Elbert said Daniel wanted to testify in the judge's chambers. None of the attorneys objected to the request.

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