Every year, I write to honor my sister, Terri Schiavo, on March 31
st,
the anniversary of her death. For those who do not remember, Terri, at
the age of 26, experienced a still inexplicable collapse resulting in a
severe brain-injury. As a consequence of her brain injury, she was
unable to swallow using conventional utensils, and like many Americans
required nutrition and hydration by feeding tube in order to live.
Terri did not have a medical directive specifying who would make her
health care decisions in the event she was incapable of making them
herself. Therefore, it was her husband, Michael Schiavo, who was
appointed by the court to be her medical caretaker and was ostensibly
the only person who would decide what type of care, if any, Terri would
receive.
Initially, my family did not anticipate this would be an issue. But
that changed after Michael obtained a million-dollar medical malpractice
settlement on Terri and his behalf. Before the settlement, Michael
discussed continuing rehabilitation. Afterwards, he tried to deny her
antibiotics when Terri came down with a urinary tract infection. But
when my family sued, he relented.
It was in 1997, and as a consequence of Michael not having the
permission to end Terri’s life by denying treating her UTI, Michael
petitioned a Florida court, for consent to remove Terri’s feeding tube
with the intent being that she dies by starvation and dehydration.
My family objected vehemently and offered to care for Terri in her
disabled condition and provide ongoing appropriate therapy that was
positively impacting her brain-injury. By this time, Michael was living
with a woman he called his “fiancé,” with whom he eventually sired two
children.
Despite this clear personal conflict of interest – and the financial
benefit he would receive by inheriting Terri’s estate from the
malpractice case – the judge believed testimony that Terri simply
“wanted” to die.
Sadly, after a protected legal battle, Michael was successful, and on March 18
th,
2005, Terri’s feeding tube was removed, beginning a steady and extended
death lasting almost two-weeks. I witnessed the process. Believe me, it
was an agonizing and merciless demise.
It was during my families very public battle with Terri’s husband
that we were often asked whether Terri documented who would care for her
in the case of her incapacitation. In other words, did she have an
advanced medical directive that specified a health care surrogate.
That’s an important issue.
Each year there are over a million Americans who experience
brain-injury. In fact, brain-injury is leading cause of death and
disability in the US and can, at least initially, impact a person
ability to make competent medical decisions. Indeed, with no previously
chosen person to act as your medical decision maker and depending on the
laws of the state where you live, a large portion of these cases will
default to a spouse or family member deciding next medical steps.
In worse case scenarios, and depending on the circumstances, patients
can be subjected to medical decisions that are made by the hospitals
where they are admitted. This is because hospitals are now empowered to
decide whether treatment will be continued or stopped by what is termed
as “futile care theory”.
Even those who sign an advance directive requesting continuing care
are not necessarily safe. “Medical futility”, sometimes called “futile
care” or “inappropriate care,” permits strangers – bioethicists or
doctors – to have the final say about a patient’s care, even if the
patient has expressly detailed their medical treatment wishes in an
advance directive or by identifying a health care surrogate.
These “futile” care determination can happen by either denying (or
withdrawing) care when they conclude that a patient’s “quality of life”
is arbitrarily “too low” to justify care or the cost of treatment that
is, in fact, working by allowing them to continue living. For example,
it would be as if doctors vetoed a decision by Michael and my family to
continue Terri’s care.
Exacerbating these situations is the legality (and the common
practice) to deny/withhold food and water (via feeding tubes).
Understand that these are not cases of refusing extraordinary and
disproportionate care when one is truly near death, rather the
denial/withdrawn of basic and ordinary care to knowingly cause death.
Unfortunately, this is the economic and ideological reality of
today’s health care system and is the reason the autonomy of a patient
is susceptible by hospital refusal to provide the life-affirming
treatment that patients are requesting, and treatment that is helping
them.
Ironically, as medicine and ethicists push for a patient’s autonomy,
the direction of today’s health care is to control treatment (or the
patient) even in such case when a patient is clearly asking for certain
treatment as in futile care judgments.
Notwithstanding these possible scenarios, executing a health care
power of attorney can help safeguard access to treatment, including
basic care, food and water, as well as other forms of appropriate care.
It is harder to impose futile care on a patient who has stated in
writing they want treatment and have appointed a surrogate to carry out
those instructions. A health care power of attorney is a document that
allows you to designate a specific, trusted person to make critical
medical decisions if you are not able to speak for yourself.
Equally important is whoever you designate your health care
surrogate, they will need to understand the patient’s rights, without
being frightened by clinicians or hospital administrators if there is a
disagreement over medical treatment.
Appointing a health care surrogate is a simple and not only the smart
way, but the best way to ensure that ethical and appropriate decisions
are made by someone trusted and can act in a way that advance directives
simply are unable to do.
Full Article & Source:
14 Years After They Starved My Sister to Death, We Must Never Forget Terri Schiavo
