Thursday, June 17, 2010

Don't Get Mad; Get Even

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


Lorenzo said...

Damn, to make a painful dire situation worse, they go and do this. Keep strong Chris and go get 'em. From the little law I know, I am not sure if an antibiotic IV violates a Do Not Resuscitate order, but there is certainly no excuse for failing to notify the family. Completely unacceptable! Sorry you and your mom are having to go throug this.

Elisabeth said...

I sometimes wonder whether there is such an anxiety about getting caught out in the wrong that people in positions like this, the medical folk just follow rules and procedures without bothering to check the finer detail, like what might this person want.

They lose track of the individual. the worst that happened to us a couple of yesrs ago my husband's brother was seriously ill in intensive cae. the family who had been visiting had left all bsar one sister. She was still in the corridor when a doctor came to her and told her that sadly her brther had died. This same brother she'd last seen admittedly unconscious only five minutes before.

The doctor led my husband's sister back to the ward so that she might say good bye to her now dead brother. The doctor pulled back the curtains to reveal not her brother but a stranger who bore no resemblance to her brother. They'd made a mistake. Getting an acknowledgment of the mistake and the distress it has caused has not come easy.

I'm sorry that your mother [is still suffering.

Brian Miller said...

that sucks. hope you take the shirts off their backs or at least the scalpels out of their hands...

Marion said...

Is Hospice still involved in your Mom's care? They are advocates for the patient and as such, we are to go to the ends of the Earth in order to make sure medical providers follow the patient's wishes to the letter. I am so surprised at how there are no repercussions to this awful situation! And I am going to check Canada's laws to see if it is the same here.

I cannot express my feelings about this in a sane way...I can't believe this happened. Not calling for four days and THEN not following your mother's advance can this happen? In this day and age? I can't begin to imagine how your family feels...but I totally understand why you would be mad as hell. Take good care of yourself, Chris xoxo

The Bug said...

I was going to say that if you can afford it you should go ahead & sue. You never know which case will be the one that changes precident.

What I want to know also, is why didn't Hospice call you? Or did they just assume the hospital would? I think heads should roll there too!

Dianne said...

Our state is in a state of medical inequity.

lakeviewer said...

I can understand your frustration! I had no idea that these directives are not followed, or there is no recourse if not followed. A curious set of circumstances for your mother. I hope you can straighten this up.

Magpie said...

Oh, I think they don't know who they messed with. Good for you. Sometimes things like this are so incomprehensible to me - they're truly beyond my understanding. Why initiate the document or any document if it has no power? We should have a say in our care. God be with you in your pursuit of justice.

Enchanted Oak said...

Thank you for all your indignation on behalf of my mom. Hospice is innocent in her case, because she wasn't on hospice care at the time. Hospice only entered the situation after we were notified by the hospital and we drew the hospital physician's attention to her Advance Directive.
At that point, he said "Oh, she doesn't want her life prolonged. Well, she has end-stage Alzheimer's and that's perfectly understandable. Let's call in hospice because I don't think she'll live another six months."
Why someone in admitting, in the med-surg unit, or the friggin janitor didn't notice she was incapcitated, unable to speak for herself, and look in her file for family contact numbers, there is no reasonable explanation.
With hospice involved now, we can rest assured that Mom will not be subjected to life-saving care, because no one may treat her without first contacting hospice, and hospice will call us before treatment is given. The medical profession has learned to accommodate hospice-designated patients, because the family has signed documents freeing them of all liability.
However, the Advance Directive also clearly states the treating facility is freed from liability for not administering life-prolonging treatment. So why is hospice honored, but not an individual herself?
No answer to that.

Enchanted Oak said...

Regarding Lorenzo's comment, he's right that giving IV antibiotics doesn't violate a Do Not Resuscitate (DNR). The DNR only covers CPR treatment. It's the instructions in the Advance Directive that spell out what medical treatments are not wanted.

So a DNR by itself is insufficient to protect your from life-prolonging care when you have a fatal disease. You also need an Advance Directive. But as I've discovered, the medical profession is not held accountable by the court system for ignoring your Advance Directive, so it's 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.

Birdie said...

Chris, I cannot even comment because I would have to get mad. I hate doctors (apology to any doctor who read that, they might be exceptions I didn't meet them just yet ...). I hate hospital policies. We are in a legal process with a hospital and a doctor for negligence and having injured our son. I see red when I think about it, or when I read more stories like yours. I can only tell you that I'm proud of you not to let it go. So many people just shut up and this doesn't help noone. Bravo to you!!! And good luck as well. These battles takes your energy and sometimes nerves away ... Hugs!!

Monkey Man said...

So sorry you AND you mom have to go through this. It is an ugly affair when hospitals feel so inclined to protect themselves, but we live in a litigious society so they will stive to err on the side to protect their almight money.

Syd said...

I am sorry Chris. I know that my mother had a DNR. But she was given antibiotics. I think that medical doctors are sometimes ruled by ethics and the Hippocratic oath to do no harm. I can see both sides to this issue from an ethical view.

C.M. Jackson said...

I am so sorry for your mother and you I hope you find solace in fighting for her rights--c

The Thirteenth Crossing said...

I feel your outrage and distress here. For them to not even inform you of it... awful. Just awful. Sending out my hugs to you.

steveroni said...

*I* am ANGRY ALSO! And it is not my Mom, but YOURS! Thank you for the information, but I am so sad for your Mom, who might now have been in heaven, seeing, knowing, acting, reacting, being the genderless, gentlest should she must be.

Thanks for coming by steveroni...

Gabriella Moonlight said...

I feel this post to my core, I found out like you the yeah and nays of such medical absolutely drove me around the bend..I adore the people who work in hospitals, but the arrogance and lack of bedside manners by doctor's was so incomprehensible to me that like you I was seriously pissed. I am so sorry that this is happening for you adn please know that I love you and am grateful you're here...much love

RNSANE said...

My gosh, as I sit here as a hospitalized patient, this really makes me furious. I brought in my advanced health care directive so my wishes are known...the thought that they might not be followed really galls me.

Also, had the hospital bothered to notify you in a timely manner ( like on admission ), you might have been able to intervene.

This is so outrageous. I wish your intervention could do some good. I really feel for you and your mom, Chris.

crownring said...

Chris, it is incredibly ironic that I was reading your blog just before I got a call from my sister about my mother's current situation. In recent days, Mom has been experiencing considerable breathing distress, possibly from different reasons or maybe because the doctor took her off Lasix because he didn't like her kidney values....and then went to Mexico on a mission's trip. Her lungs were clear, but broncitis seems to be a possible explanation.

Anyway, long story short, HOSPICE is now back in the picture because Mom is definitely now in end stage Alzheimer's. Hopefully now there will be attention paid to Mom's comfort level and ability to breathe rather than worrying about kidney values.

BTW, I agree with the others that there is NO EXCUSE for the hospital not contacting your family when your mother was admitted to the hospital. If there ever was a time when someone (or someones) needed a new one torn, this is it! There has to be a middle ground between euthanasia and keeping people alive long beyond their wishes and hospitals and doctors need to find it.

As for the Baby Boomer generation, I think we may start seeing a lot more suicides in the future. Boomers are getting a good look at what's happening to their parents and are not wanting to leave their spouses or children with the kind of decisions they themselves are being forced to make.

Hugs to you and your mom, hon.

Bananii said...

I cant say I understand, because I am not you and that is not my mom.
What I can say is that I would be really mad too if someone messed with my family, specially with my mother, so for that I feel your anger.

But, maybe you wont agree with me in this, but I believe that everything happens for a reason.

Ok, they ignored her wishes and the instructions, but... maybe your mommy was healed because God wanted it to happen that way.
What for?
Well, I dont know, but He does...

So I really hope you can feel better and well Im t.ruly sorry to read this, it made me angry too when I tried to see it thru your eyes.


Titus said...

Strength to you, EO! This is a murky area of the law in the UK as well, and needs strong and test-case challenging in order to get it sorted to preserve and protect people's dignity and rights.

I'm horrified by what happened to your Mum, and please do get mad and do get even. So sorry she, you and the rest of the family had to go through this.

the wild magnolia said...

I was unaware of the lack of civil protection available to enforce a patients rights.

Thank you for sharing.

Good daughter, nobody messes with the Mom.

Sandy said...

That is a horrible story! An only child, I am all my widowed mother has left. She's still mostly okay mentally but she relies on me for most decisions. If something like that had happened to her.....I don't know what I'd do, what I could do but I'd have chewed a few new you-know-whats. Hope she's doing as well as can be expected.

sswl said...

I'm new to your blog and just read this horrendous story. As a retired nurse, I'm totally appalled. This would not have happened in the unit I worked in--at least not then. I hope you find some legal remedy that helps put a stop to it.

One thing that puzzles me, though, is why your mom's regular care facility didn't notify you or your brother that she'd been hospitalized. There seems to have been incompetence and neglect every step of the way.

It becomes increasingly clear that the welfare of patients is not the primary objective of our health care system. With righteous anger like yours, maybe this will change.

Teri and the cats of Furrydance said...

Your post is quite an eye-opener, shocking and so sad. You have certainly given us all food for thought!

Anonymous said...

Wow, five days before the family was notified? What an atrosity! That is purely outrageous and I understand your anger. Sorry to read this happened to your Mom.

PattiKen said...

Wow, that is just unbelievable! My mother-in-law is 93, has Alzheimer's, and in in a care facility. This could so easily have been her story.

Marla said...

Oh Chris, I remember going through this kind of foolishness with my dad and MIL. I was the medical communities worst nightmare and I didn't care. My job was to advocate for my family member, not make some doctor/hospital happy. Go get em!!!