Case 24 international Def_

Navigating Tubal Ligation Decisions for Manuela, a Person with Down Syndrome.
CLINICAL CASE
Manuela, a 42-year-old woman with Down syndrome, visits the gynecology office accompanied
by her sisters, requesting a tubal ligation. Her sisters express concerns about the high risk of
Manuela becoming pregnant. Manuela, who lost both parents two years ago, is under the care
of her sisters. She is sexually active and has a steady partner. When questioned by the
gynecologist, Dr. Martin, Manuela states she does not want children and that her sisters advised
the procedure, arguing she would be unable to care for them. Dr. Martin explains the tubal
ligation procedure to Manuela but is uncertain if she fully comprehends its implications.
Manuela mentions using the withdrawal method for contraception, while her sisters assert she
has been on oral contraceptives for years, although they are unsure of her adherence. They fear
a potential pregnancy, insisting on tubal ligation as they cannot care for a child and believe
Manuela cannot either. One sister, who is Manuela’s legal guardian, provides a court ruling on
the matter, indicating attempts to prevent her from engaging in sexual activity have failed due
to her relationship with a boyfriend at the occupational center. Dr. Martin, after consultations
with Manuela and her sisters, doubts Manuela’s capacity to make an informed and voluntary
decision. While she seems to understand the basic aspects of the procedure and its primary
consequence (inability to have children), Dr. Martin is unsure if this level of understanding is
sufficient. He also believes surgery is not the only option, as other contraceptive alternatives
exist.
Should Dr. Martin perform the tubal ligation?
ETHICAL ANALYSIS OF THE CASE
In this case, the autonomy of Manuela’s sisters and Manuela herself (albeit limited) conflicts
with her (Manuela’s) health care, as a surgical intervention with inherent risks is being
considered, despite the availability of alternatives.
When making health care decisions, it is essential that consent is given freely and voluntarily,
with the patient fully understanding the information provided by the physician to make an
informed decision that aligns with their values. If patients lack the competence (i.e., sufficient
skills to make these decisions), proxy consent is required. For individuals with disability support
measures, such as Manuela, legal rulings can specify how health decisions should be made.
Nevertheless, it is crucial to consider the opinion of the person with the disability whenever
possible.
When a proxy decision is clearly beneficial to the patient, such as in the case of surgery for
cancer, it should be followed. However, challenges arise with elective procedures or surgeries,
like tubal ligation, that are not clearly indicated and rely on the patient’s autonomous choice. In
these instances, proxy decision-making becomes more complex, as it involves determining the
best course of action for the patient. Consequently, in recent years, the sterilization of
individuals with Down syndrome without their explicit consent has been prohibited through
legal action, as it is considered a violation of their personal dignity.
In the case under discussion, two key issues must be assessed: Manuela’s autonomy
(competence) and the potential benefits of the procedure. Specifically, if Manuela is not
competent, is tubal ligation proportional (beneficial) in relation to the potential risks and harms
to her? To determine this, it is essential to consider whether less aggressive alternatives exist
that can achieve the same or a very similar result.
POSSIBLE COURSES OF ACTION
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Perform the surgery taking into account the wishes of the sisters, since they are her legal
guardians.
Interview Manuela alone, without the sisters, and assess her competence in making this
decision.
If the gynecologist, who is in charge of assessing Manuela’s competence, does not know
how to do so, ask for help (ethics committee, psychiatry) to assess competence.
Discuss other contraceptive alternatives that are safe, such as contraceptive implants, IUDs,
or patches.
Refuse to perform the intervention on the grounds that it violates the dignity of persons
with disabilities.
Inform the Court, so that the correct authority may determine, with the advice of a forensic
doctor, what action is most appropriate according to Manuela’s competence.
RECOMMENDED COURSES OF ACTION
⮚ Whenever possible, a consensus decision should be reached among the medical team,
Manuela, and her sisters.
⮚ A thorough explanation of the information process with Manuela and her sisters is essential,
ensuring they understand the procedure and possible alternatives (contraceptive implants,
IUDs, or patches). While her sister is the legal guardian, it is crucial to include Manuela in
the decision-making process.
⮚ Dr. Martin, as the gynecologist in charge, should assess Manuela’s competence and respect
her decision if she is competent. If he does not know how to assess competence, he should
seek help in doing so.
⮚ In the event that Manuela’s competence is in question or there are doubts about it, and she
and her sisters still insist on the tubal ligation, the case must be taken to court for a judicial
decision on what is best for Manuela. If she is deemed incompetent, the tubal ligation is
likely to be denied, as it is an elective procedure and there are highly effective, less invasive
contraceptive alternatives available.
DISCUSSION
Currently, the sterilization of persons with a disability does not require judicial authorization.
Judicial approval should be a last resort and reserved for exceptional cases. This situation is not
urgent, allowing for sufficient time to inform the patient and her sisters thoroughly and consider
various courses of action. To make an informed decision, comprehensive information about the
procedure is crucial. This includes not only the explanation of the technique used and its
potential complications but also presenting alternatives and explaining thoroughly how they
function. It is ideal to adhere to the principle of proportionality, utilizing alternative
contraceptive methods to ensure optimal adherence. The information provided should be
tailored to the disabled patient’s level of understanding and also consider the comprehension
level of the sisters.
If the patient is competent, she must make the decision independently and willingly, without
any influence from her sisters. If she is deemed incompetent, it’s imperative to still involve her
in the decision-making process, but the case should be escalated to the courts due to the
elective nature and potential risks of the surgery. While judicial involvement in healthcare is
generally undesirable, as it can be intrusive and disrupt the clinical relationship, in this case, it
might become necessary.
Sgd.: ASISA-Lavinia Bioethics and Health Law Committee
July 2024