A 19-year-old U.K. woman with a rare disease has died during a legal
fight to circumvent a ruling that she was not competent to make
decisions about her care, despite her desire to go abroad for
experimental treatment.
Before her death, she was conscious and able to speak. She had done well
in school before her health declined after she caught COVID-19 in August
2022. Her disease did not affect brain functioning, though she suffered
health problems such as impaired sight, hearing loss, chronic muscle
weakness, bone disease, and chronic lung and kidney damage.
For more than a year, she had been in intensive care. She breathed
using an artificial respirator, ate through a feeding tube, and
underwent dialysis.
The
two psychiatrists the hospital tasked with assessing ST ruled that she
was free from mental health issues and had the mental capacity to decide
for herself.
However,
the medical professionals in charge of her treatment maintained that
she was approaching, or had already begun, the final stage of her life
and was “actively dying.” The NHS trust had asked the court to approve a
palliative care plan for the woman that would remove her from dialysis
and thus result in death by kidney failure in a few days.
In an Aug. 25 court
judgment, Justice Jennifer Roberts of the High Court of England and
Wales ruled that ST lacked the capacity to instruct her lawyers and said
that the Protective Court should decide on her best interests. In
Roberts’ view, ST was “unable to make a decision for herself in relation
to her future medical treatment, including the proposed move to
palliative care, because she does not believe the information she has
been given by her doctors.”
“Day after day in the intensive care ward we and ST had to exist and
keep going in an environment that had given up on her right and wish to
live. Death, we were told, was the only remedy and the only hope,” the
family said. “In such an environment, it meant we were afraid to leave
her bedside and were therefore forced to give up our livelihoods to the
point we now do not know how we will pay for her funeral. From this case we have learned that if you disagree with the NHS, you
must for that reason alone be considered delusional. This has been
deeply disturbing and traumatic to witness firsthand happening to
someone you love.”
There are strict rules against reporting identifiable information about
ST, her family or the hospital involved due to a court-imposed
transparency order dating to March. The order came at the request of the
unnamed NHS trust.
[ODKAZ]
