Kate was diagnosed with leukemia at age 2 and has relied on donations from her genetically engineered sister Anna for bone marrow and blood treatments. Now at 16, Kate no longer wants treatment and doctors say her only chance of survival is a kidney donation from Anna. However, donating her kidney would have long-term health risks for Anna. Unable to convince her parents to stop pushing her to donate, Anna sues for medical emancipation to make her own healthcare decisions.
3. Kate is a 16 year old who was diagnosed with Leukemia at 2
years old. She has an older brother, but he is not a genetic
match for a bone marrow transplant. Doctors recommended
that her parents scientifically engineer another child to ensure
a bone marrow match for Kate.
Kate’s parents eagerly pursued having another child in order to
try and save Kate’s life. Anna is born and from birth is
subjected to multiple procedures in order to treat Kate. From
donating bone marrow to blood, Anna spent a lot of her
childhood in the hospital as well.
4. Now that Kate is 16, she is progressively getting weaker
and treatments are no longer effective. Kate does not want
to be treated anymore. She is ready to let go but doesn’t
know how to tell her family.
Doctors say a kidney is Kate’s only chance for survival. Her
parents are pushing Anna to donate, even though there are
definite long-term consequences for Anna if she only has
one kidney.
Unable to convince her parents that she does not want to
donate her kidney to her sister, she hires a lawyer to sue
for medical emancipation.
5. Presenters
Jaelin Mayer – Role of Anna
Stephanie Noble – Role of Kate
Stephen Lee – Role of Parents
6. Step 1: Ethical
Questions
Should a doctor recommend a family have another child in
order to have a bone marrow match for a living child?
Should a family scientifically engineer a child for the sole
purpose of harvesting tissues and organs for another child?
Do Anna's parents have the right to require Anna to donate
an organ to her sister?
Is Anna, 13 years old, subject to her own assent, or is she
legally bound to her parents will because of her age? Should
she have any say in her participation in donating
tissue/organs?
As Kate is dying, does she have the right to request the
cessation of treatments when recovery seems very remote?
8. STEP 3: What
are the
clinically
relevant
facts?
Both Anna and Kate are minors.
Kate has a cancer that will kill her without treatment and
Anna is the only organ/tissue match for this treatment.
By continually donating, Anna’s quality of life has been
greatly impacted.
The parents want to continue fighting the cancer – at all
costs.
9. What facts do you
need to gather?
What policies are already in place?
What does the law say about a minor donating a kidney?
What are the health risks for Anna in continually giving
bone marrow and tissues?
What are the health risks for Anna to donate a kidney?
What are the chances for Kate’s survival and cancer
remission if she continues to receive bone marrow and a
kidney transplant?
What has been communicated to the parents regarding
Kate’s chances for survival?
Is the family in any kind of support group that could
help them process through these decisions?
10. Step 4: What are the values at stake for
all the relevant parties?
Kate
Autonomy
Respect for Persons
Time with family
Dying with Dignity
13. Medical Community
Providing Treatment Options
Acting in the Patient’s Best Interest
Education
Empathy & Compassion
Respecting decisions of patient/family
14. Step 5:
What could you
do?
As Kate,
I could tell my family and doctors my wishes not to
receive more medical treatment.
I could let Anna give me her kidney and be thankful
for the small amount of time it would buy me with my
family.
I could sue for medical emancipation for myself so I
could choose when to stop treatment.
I could refuse the treatment and hope people would
support my decision.
15. As Anna,
I could donate my kidney, even though it will alter my
future plans, there is a risk that I could die, and it may
not ultimately save my sister’s life.
I could sue my parents for medical emancipation so that
I can make the decision about my kidney and any future
procedures for myself, although this will anger my
parents and my sister may die as a result.
16. As the parents,
We could talk with Kate
about how she is doing with
all the medical treatments,
discuss what she wants to
do, and try to come to a
decision on the future steps
of her care based on the
conversation.
We could let Kate die with
dignity.
We could wait for another
treatment option.
We could force Anna to
donate her kidney.
17. As the Medical Community,
We could educate the family.
We could talk with Kate and Anna individually.
We could solely follow the AAP criteria for a minor
donating an organ.
We could refuse to perform a transplant on a minor.
We could do the transplant based on the parents’
wishes.
18. Step 6:
What should you do?
Educate
Long-term Consequences
Odds of Recovery
American Academy of Pediatrics
Guidelines
Donor Advocacy Team
Minor Consent
20. Step 8:
How could this ethical
issue have been
prevented
Education regarding the existing American Academy of
Pediatrics Guidelines.
Establish a policy regarding scientifically engineering a
child for a bone marrow match.
21. Resources:
http://www.suite101.com/content/book-review-my-sisters-keeper-
a38500 (for summary of the book/movie)
“Minors as Living Solid-Organ Donors” By Lainie Friedman Ross, MD, PhD
- http://pediatrics.aappublications.org/cgi/content/full/122/2/454
“Health Care Decisionmaking by Children. Is it in their best interest?”, by
Lainie Friedman Ross
http://stemcells.nih.gov/info/ethics.asp
Should minors be able to serve as living organ donors –
“www.vcu.edu/.../should%20%minors%20be%20living%20donors_.ppt
All pictures are taken from movie clips
Editor's Notes
We feel there is a lot of information we need to gather in order to make a decision on this case.
First – we would like to know what policies have already been established that address this case, including the legality of a minor donating a kidney.
Second – we would like to know what the health risks are for Anna – for both donating bone marrow and donating a kidney.
Third – we feel it is important to know what the health status is for Kate. What are her chances of survival, with and without receiving a kidney.
Finally – We want to know what has been communicated to Kate’s parents. Are they aware of the ramifications for both Kate and Anna in a kidney transplant? Have they received any medical or community support in making their decisions regarding Kate’s treatment?
As the Medical Community,
We could educate the family on the pros and cons of the procedure for both daughters, and the long term expectations regarding outcomes for the treatment of Kate- with and without the transplant.
We could talk with Kate about her wishes and facilitate conversations between her and her family members.
We could talk with Anna about the procedure, her concerns, and how it will affect her life in the future, and ensure that her organ donation is voluntary and not coerced.
We could make sure that all the criteria for a minor donating an organ are met, including all the required assessments and evaluations prior to performing the surgery.
We could refuse to perform a transplant on a minor.
We could do the transplant based on the parents’ wishes.
As the medical team, we should educate the family about the possible outcomes of surgery for both Anna and Kate.
Every procedure is risky and either child could have a negative outcome. The parents (and Anna) need to understand the consequences of donating a kidney for the long-term.
Also, there needs to be an understanding of what the odds are for Kate to recover from her cancer. She is very sick and treatment may not be successful.
According to the American Academy of Pediatrics guidelines, We would also call in the Donor Advocacy Team to talk with both Anna and Kate about this donation and their wishes. We would also ensure that Anna (as a minor) consents to the organ donation without coercion.
Education is key for all the family members. We think every family member needs to be in agreement that this surgery is right for both of the daughters- especially Anna. If Anna donates one of her kidneys, it could have long term implications for her own health, and there is no guarantee that this transplant will save her sister.
There are many conflicting values in this case. As medical providers, we must be certain that both patients- Kate and Anna- are receiving proper medical care that is appropriate for their conditions- and that they consent to the procedures. Kate is very sick and the odds of full recovery are very slim. A kidney transplant may buy her some time, but it is not a cure for her cancer. Anna could end up with severe medical consequences if she donates a kidney and she needs to be able to choose whether she is willing to make these sacrifices.
Having a child that is genetically engineered to “treat” a sibling is not expressing a value for that child’s life. They are still a person with needs and feelings. Just because you have the bone marrow match does not indicate that you “have to” give it. When Anna was younger and all that was being asked of her was blood and marrow, there was less to be concerned about. Giving blood and marrow is very safe. On the other hand, donating an organ is risky for both people. Asking a healthy child to take that kind of risk for a sibling should be done very carefully. That child will have to live with the consequences of that donation for the rest of their life. This affects them much more than their “adolescent” years so we feel they should have input into whether they donate or not. They should not be pressured. Adults should help them make and respect that decision.
There should be a hospital policy on sibling/underage organ/tissue donation. This could protect both family members from false expectations or from family tensions caused by “uncooperative” family members.
Education of such policy
Counseling for the family to ensure that no undue pressure is placed on Anna to donate if she does not want to.
