I sat in silence wrestling with myself, shifting in my seat, as my husband drove down the road. He pointed out some beautiful fall foliage. I looked at the trees but could not appreciate the scenery due to my turmoil. All I could think about was how uncomfortable I was with my father’s hospital discharge plan and how fractured end of life healthcare planning is in some states (specifically, states without a POLST form), states such as mine, Alabama. Since becoming active in advocating for better end of life healthcare planning, I have been a supporter of the POLST for lots of obvious reasons- but most basically, it ensures that the medical system obeys the wishes of the patient or the acting healthcare proxy. I have known abstractly how important such a document is for my patients. But now, a new personal knowledge is dawning for me—I now know firsthand how the LACK of a POLST or POLST-like document actually LIMITS healthcare options for those who are near the end of life!
Here is our family story:
My father has late stage COPD. You know, the kind where you are tethered to an oxygen machine and have limited physical activity. Nevertheless, he still enjoys a moderate quality of life- he can drive where ever he would like and on warm days, he hangs out with his guy friends at a designated outdoor site, if he feels up to it. Not bad in my opinion.
He was just recently admitted to the hospital for a severe COPD exacerbation (common in the end stages of the disease). He and his primary doctor have discussed advanced directives and his wishes on various occasions and as his disease progresses, things have changed. This time, he told his doctor that “he would accept a mask (oxygen, CPAP or BiPAP- all non-invasive forms of respiratory support) but would not want a tube (to be intubated on a ventilator- an invasive form of support).” As one of his designated healthcare proxies, my job is to support this wish, to make sure he gets what he wants and doesn’t get what he doesn’t want- to assure that he gets CPAP or BiPAP but not full intubation. I was very comfortable with this while he was still in the hospital because the paperwork in the hospital setting makes all of these options clear. It was when he got ready to be discharged that I about had a cow….because our “out of hospital” official state paperwork doesn’t offer the option he wants should he need it (CPAP or BiPAP, which I will also refer to as the “middle option” in respiratory care). I scrambled around and asked a few high ranking EMS Medical Directors in the state whether CPAP/BiPAP was routinely offered to patients who had signed pre-hospital Do Not Attempt Resuscitation orders and the answer appears to be “No.” Essentially, this meant that if my father took home DNR orders and got into respiratory distress and failure, that paramedics would not be likely to offer him the respiratory treatment that he had requested, but which was clearly understood to be part of his hospital therapy! (The exception would be if the paramedics knew to call medical control to ask for orders for a BiPAP- but if you are not medical personel, how are you going to know how to ask for this? Further, if you hand write this on the DNR document, it may be ignored because EMS are trained to be suspicious of “tampered” official documents and may ignore it all together.)
So there I was sitting in the passenger seat as we were driving to the hospital the day before my father was to be discharged. I was holding the Alabama state Do Not Attempt Resuscitation order in my hand. It was rolled up, with fraying edges and was moist from my sweating palms. The papers were a wreck and so was I, as I literally wrestled with the document, trying to make it something it wasn’t. I was trying to make it a POLST, which would clearly give my father the option he wanted – an option which would be clearly understood and obeyed by EMS. But since this middle option is not clearly offered in the Alabama State prehospital paperwork, I had to ask myself: So which would be worse? My father not getting BiPAP when he needed it to save his life OR getting intubated when he didn’t want it?
I was angry that I even had to ask such a question when a middle ground option existed, one that his doctor and the hospital was willing to offer him but one which is not explicitly offered in the prehospital setting despite the fact that paramedics drive around with this equipment in their trucks!!!
I knew that if Dad’s doctors signed the Alabama prehospital DNR order which states “withhold resuscitative measures… (including) endotracheal intubation and other advanced airway management” that the likelihood that he would receive appropriate “middle ground” respiratory therapy would be almost nil—meaning that he could die (prematurely) because the treatment that he desires would be withheld. In frustration, I threw the papers to my feet.
I thought, “Damn it, I’m a doctor and I can’t even assure the care for my father that he has requested! If I am having trouble, what about “Joe Blow” and everyone else out there who are trying to make the best end of life choices for themselves or someone they love?”
My father and I are living in a state where present end of life healthcare paperwork is archaic and lagging behind by not listing available “middle ground” medical technologies such as CPAP or BiPAP. This omission effectively withholds medical care options from patients and their families.
I am living in a state without a POLST document and I am living in a state of frustration- not only for my father, but for all of my patients, and for anyone who is trying to sort out their final medical care wishes.
In our state, the prehospital EMS End of Life healthcare choice document is a legislated document. The last time I heard about government legislation limiting potentially life-sustaining medical care, we called them “death panels.”
Alabama, we’ve got to do better. Don’t wait until it’s your own father to do the right thing. See POLST.org Let’s get this done!
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