They have messed with my mother, and I’m out looking for blood.
“Injustice anywhere is a threat to justice everywhere.”
Martin Luther King
My mother, who suffers the incapacity of late stage Alzheimer’s, was taken to a local hospital’s ER recently for a routine check after an unobserved fall in her care facility. She had taken that ride two times before in the ambulance. It was the facility’s requirement to protect itself. Both times previously, she’d been checked out and sent back within a few hours. She looked fine this time, too.
This time, however, something catastrophic happened. Hospital personnel took her information packet, containing my mother's identification, medical status, Do Not Resuscitate order, Power of Attorney for Health Care and Advance Directive, emergency contact numbers for her power of attorney agent and secondary agent, and other stuff. It was practically duct-taped to her body. My state’s law requires them to notify family within 24 hours of her arrival at the hospital.
Without gaining informed consent from her family, without contacting her family, without reading her Power of Attorney for Health Care and Advance Directive, the hospital chose to sedate her, restrain her hands, run an IV line, pump her full of fluids, run a battery of tests, find fluid in her lung, and admit her with her hands tied. Then they all failed to call us, her family and agents, for the next four and a half DAYS.
"And where the offense is, let the great axe fall."Hamlet, William Shakespeare
Mom’s directive specifies no treatment to prolong her life. When the hospital folks ran the IV line, they violated her directive. She tried to inform them in the only way she could: by trying to yank out the IV. So they tied her hands in restraints for the next four and a half days. She couldn’t even scratch her nose.
We learned on day five that she was there because a doctor used her medical file to call my brother, Mom’s agent, and ask permission to do a lung puncture. Brother called me and we raced to the hospital, told the doctor about the Advance Directive in her file, and he immediately called in Hospice, because pneumonia is the number-one killer of Alzheimer’s patients. My mother has been pleading to die for over a year now.
So Mom was sent home with hospice care, she survived, and she continues to live in a semi-vacant, endlessly pacing, state, unable to communicate, dress herself, feed herself, and all the other lost abilities that Alzheimer’s has stolen from her.
When informed of their failure to notify family, the hospital staff was aghast. But no one made an apology. When I sent a complaint to the home office, the risk management department called me up and said they were sorry. It wouldn’t happen again.
I’ve been researching federal and state law lately, trying to ascertain what legal power resides in a person’s Advance Directive. The answer seems to be: zip. zero. zilch, when you are a medical institution or a doctor. You can ignore the instructions of a patient, violate her body and her wishes, and you will suffer no consequences. More than half the time, says one study, the instructions are ignored by hospitals and doctors. “Simply,” say the researchers, “as far as we could tell, advance directives were irrelevant to decision making” by medical providers. And they can do it without facing a medical malpractice judgment.
"Don't get mad, get even."Robert F. Kennedy
The deal is, there’s no "incentive" for a doctor or a medical facility to adhere to an advance directive. The courts in America have time and again dismissed lawsuits against medical providers for failure to comply with a patient’s instructions. In essence, the individual’s right to refuse treatment isn’t backed by law when you need it most.
Medical providers can violate patient rights flagrantly without fear of being held accountable, because the courts refuse to penalize those providers for their failure to honor the directive. Your Advance Directive is a legal document with no power of enforcement. Until state and/or federal law changes that situation, you have no civil right to be protected from medical personnel who issue life-prolonging treatment.
The courts that back the medical providers claim there’s no way to compensate a person for “wrongful living.” The pain and suffering of the patient whose life is “saved” has no value to the courts.
Nothing is going to change unless medical providers face a big hit to their pocketbooks. You would call that an “incentive” to change behavior: a court awarding punitive damages to someone like my mom. The federal and state governments need to create a policy that imposes civil liability and promises stiff penalties for a physician or medical facility that ignores a patient’s clear wishes.
The Baby Boomer Generation had best wake up and fight for their civil right to self-determination. All those Advance Directives we so dutifully fill out, at this point, aren’t worth the paper they’re printed on, even though they adhere to state law. There is no state law, let alone federal law, that says anyone has to pay attention to them.
But I’m mad as hell, and I’m going to hook up with an attorney advocate, and we’re going to sue the sons of beaches. They messed with my mom.
“Justice is never given; it is exacted, and the struggle must be continuous.”A. Philip Randolph
