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Monday, August 1, 2016

Becoming Dead Wrong at End of Life (Research, Video 4:10)


“End of life and all my wishes go unheard” may be thoughts of numerous patients who feel their death is being prolonged unnecessarily. One example is the admittance of patients who have Do Not Resuscitate (DNR) status to the intensive care unit (ICU). Many consider this to be a potential misallocation of limited resources to patients who may neither need nor want intensive care. A review of patients who had a valid DNR status at the time they were admitted to an ICU in a single hospital over an eighteen-month period brings more clarity to these situations.

Results indicated that patients who have DNR status and are admitted to the ICU have a higher mortality than other ICU patients. Those who survive have a high likelihood of being discharged to hospice or a post-acute care facility. The value of intensive intervention for these patients is not supported by these results. In addition, only a minority of these patients were seen by palliative care and chaplain teams, services which the literature supports as valuable for DNR patients. This study supports the need for less expensive and less intensive but more appropriate resources for patients and families who have chosen DNR status.

Note: Do Not Resuscitate (DNR) forms are ignored sometimes for several reasons: Advance directives are not available. A healthcare provider simply ignores request. One doctor has a copy, but not another doctor. Ineffective proxies don't speak up and advocate for what the patient wants. Family members disagree and interfere with what patient wants. Administrative errors are in the paperwork. Emergency workers are not aware of DNR documentation patient completed. A patient's zip code, race, age, etc. can even be factors. 


Be sure your advance directives (DNR, etc. forms) are done. Have them entered into all electronic health records. Tell loved ones your wishes, and make sure your proxy and other proactive advocates for you have personal copies to present when needed. When you can't speak for yourself, you need someone to speak up strongly for your rights. 


The following rap video based on “Love the Way You Lie” by Eminem and Rihanna is titled  “Ain’t the Way to Die” with lyrics by ZDoggMD (Dr. Zubin Damania) and Dr. Harry Duh. Among many receiving thanks are the residents and staff of the University of Nevada School of Medicine, along with palliative care, hospice, and end-of-life providers around the world. Lyrics are included below the video.


“Ain’t the Way to Die” 
Lyrics by ZDoggMD (Dr. Zubin Damania) and Dr. Harry Duh

Just gonna stand there and watch me burn.
End of life and all my wishes go unheard.
They just prolong me and don’t ask why.
It’s not right because this ain’t the way to die, ain’t the way to die.

Patient:

I can’t tell you what I really want.
You can only guess what it feels like.
And right now it’s a steel knife in my windpipe.
I can’t breathe but ya still fight ‘cause ya can fight.
Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate.
I’m like a pincushion, I hate it, the more I suffer
I suffocate.
And right before I’m about to die, you resuscitate me.
You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die

Doctor:

You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em?
Be at peace cause you miss ‘em already and they ain’t gone.
Beep beep, the ventilator alarms.
I swore I’d never harm ‘em, never do nothing to hurt ‘em.
Hippocratic oath primum non nocere now I’m forced just to torture ‘em.
They push full code. No one knows what his wishes were.
His sister heard him say once, “I don’t wanna be a vegetable.”
But no one agrees in the family. His caregiver Kate
Wants him comfort care. But Aunt Claire lives so far away
That her guilt eats her like cancer.
So she answers, “Wait! I think he’ll wake!”
Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain.
Critical care just hypocritical when it’s so insane.
But they insist I shock his heart again so I persist.
Guess that’s why they say that love is pain.

Just gonna stand there and watch me burn.
End of life and all my wishes go unheard.
They just prolong me and don’t ask why.
It’s my right to choose the way that I should die,
The way that I should die.
 
Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
Hospice and Nursing Homes Blog