Every year, I write to honor my sister, Terri Schiavo, on March 31st, 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 18th, 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.