Sitting down with the stunned parents you tell them there’s a good chance the chemotherapy will save the child’s life. But it is also likely to leave them infertile in adulthood. Their tears flow.
However, there’s a glimmer of hope you can offer; a fledgling surgical procedure that might allow the child to have children of their own one day.
It’s generally considered a low-risk procedure in carefully selected cases. In girls, a sample of ovarian tissue is removed via laparoscopy then frozen. When she grows up it might be possible for re-implanted tissue to start producing eggs. In boys, a biopsy of testicular tissue is removed in the hope that one day it will develop mature sperm.
But it isn’t yet thoroughly proven to work in children. To date, frozen ovarian tissue has resulted in 86 live births worldwide, including one to a woman whose tissue was removed as a child. Mature sperm have not been developed from a boy’s testicular tissue and no offspring have been born this way.
A bioethical decision.
This is the frontier in the emerging field of “oncofertility”, a bridge between cancer treatment and fertility treatment built from the recognition that many cancer survivors place high value on starting families.
But as the doctor treating this child you face an ethical decision. Offer what could be false hope? Or leave the patient facing the prospect of an infertile future?
To help medical specialists deal with this and other ethical questions around this challenging real-life scenario, University of Melbourne bioethicist Dr Rosalind McDougall, working with the bioethics team and medical staff at Melbourne’s Royal Children’s Hospital, has developed what is believed to be the world’s first ethical framework for decision-making about pre-pubertal children’s fertility.
The framework poses a series of questions which doctors work through to cover potential ethical issues relating to their patient. The hospital’s clinical ethics team reviews the responses and a full clinical ethics review is available if the ethicist, doctor or family is uncertain about the decision of whether or not to proceed.
LISTEN: Deb Knight did 14 rounds of IVF and then had a baby naturally. (Post continues below…)
“This is a crisis in each family’s life and it can be quite challenging for the clinicians too. Often parents have just found out that their child has cancer,’’ says Dr McDougall, from the University of Melbourne’s School of Population and Global Health.
“Sometimes we worry that we are just putting another thing on their plate to think about.”
Dr McDougall says earlier guidelines made it very clear specialists should discuss the effects on fertility of cancer treatment. The blank spot was around what to do about it. Should clinicians offer procedures for very young children, or just talk about the impacts on fertility?
Published in The Journal of Medical Ethics, the framework grew from Dr McDougall’s role in a team of ethicists at Melbourne’s Royal Children’s Hospital supporting clinicians to think slowly, carefully and collaboratively through complex situations.
Thinking about fertility preservation.
In 2012 Royal Children’s Hospital doctors began requesting ethical support for their decision-making around children’s fertility.
Dr McDougall says on the one hand doctors weren’t sure whether the hospital should even be offering the surgical procedure, but on the other, they worried that by not doing so they might be depriving young patients of an opportunity and choice to have children in the future.
Her colleague and co-author, paediatric gynaecologist and Royal Children’s Hospital Oncofertility lead investigator Yasmin Jayasinghe, says the ethical framework has provided some clarity and consistency for doctors.
“Oncofertility decisions are complex and time pressured for parents and clinicians with no guarantee of future fertility.
“The procedures at our institution are undertaken under stringent governance and approved as a novel technology, with research governance for data collection and clinical ethics governance for individual patients.
“They are being undertaken in the hope that it will improve the lives of cancer survivors, although we don’t know what the outcomes are at this stage,” says Dr Jayasinghe of the University of Melbourne’s Obstetrics and Gynaecology Department at the Royal Women’s Hospital, Melbourne.
To some it may appear medical science was outpacing hospital ethics, but Dr McDougall disagrees.
“Clinicians recognised this is an ethically complex area and asked for help thinking through it. We’ve done a pretty good job of keeping up.”
The big questions.
The Royal Children’s is one of 26 hospitals around the world offering the procedure to pre-pubertal girls and 16 offering it to boys. The procedure is more advanced for women than men, with births from sperm produced from harvested testicular tissue possibly still decades away.
Dr McDougall and the bioethics team built the guidelines around a series of issues that repeatedly arose in their discussions with clinicians. They crafted a set of questions to prompt clinicians to reflect on ethical concerns from many angles.
- What is the proposed treatment and expected outcome for the child?
- What level of risk does the treatment pose to their fertility?
- Has the child’s reproductive tissue already been damaged?
- Can the fertility preservation take place at the same time as another treatment procedure?
- Will fertility preservation delay the start of treatment?
- What new risks or complications might the procedure bring?
- Do the parents understand that the procedure is not guaranteed to restore fertility?
- If the child is old enough to understand, has the procedure been explained to them?
- Does the child have any objections?
- Are there any other relevant matters to consider?
Royal Children’s Hospital paediatric oncologist, Professor Michael Sullivan says the ethical and clinical frameworks, including the set of questions, give clinicians confidence and comfort knowing that in offering hope to parents through fertility preservation, they are also following a uniform and recognised practice within the hospital.
Dr McDougall says each child’s situation is unique.
“It’s important to think about the individual child and their family’s views rather than just the procedure or technology as a whole. We need to ask, what are the benefits and burdens for them? There is always a really strong awareness that we were discussing a family’s situation and that it is really important for them.”
Dr McDougall says the procedure shouldn’t be offered if it will cause delays to treatment, if the child is not expected to survive the disease or if it introduces substantial risks.
She warns that doctors need to guard against giving false hope. If offering the procedure, they must be certain parents fully understand all aspects - including that it might not the restore the child’s fertility in adulthood.
Families should understand that although the procedure means doctors are planning for the child’s adult future, this is no guarantee the disease will be beaten.
Clinicians and families should also consider that some children are frightened of surgery and hospitals. How will an extra procedure affect this particular child?
“We hope that this tool will help hospitals consider whether it is appropriate to offer this procedure and remind them of the importance of focusing on individual children and the benefits or burdens for them,” Dr McDougall says.
It’s important to remember that the Royal Children’s Hospital work around this procedure relies on ethics support, something not all hospitals have, she says.
Dr McDougall notes the ethical challenges extend beyond the hospital gates, and beyond the team’s published paper.
Other considerations include: Who pays for tissue storage? What happens to the tissue if the child dies? Will the child later feel pressure to use the tissue and try for a family?
“It’s a really ethically complex area, we’ve focused on one piece of the puzzle, and there’s plenty more work to be done.”
This post was originally published in Pursuit and has been republished with full permission.
Too much noise and not enough time?