Standing Tall Amid the Lilliputians of Elder Care

Here we go again. I only played the role of Joan of Arc once and I had to drink half a bottle of Sherry to get onstage. I don't remember much about the performance, but my mother said I was good.

I didn't choose that part.  I still don't and yet these parts seem to find me. I'm not that brave; I don't pine for the vicissitudes of sainthood or think I am Zena the Warrior Health Care Princess. But somehow, I find myself, over and over again, not only fighting for my own professional life but for my elderly patients, as well.

Doesn't make sense that you could make so many people mad by just trying to take care of a dying man.

It happened this week. I was following one of my patients who had been transferred into a nursing home. He was terminally ill with cancer of the lung which had spread into his brain. The first time I went to see him he seemed agitated, squirming all over the bed. I'd seen him like that at home and given him medication for it. When asked if he was in pain, he stoically denied having any. Just like always.

I wrote a note to the hospice nurses involved when I saw that the order for medication that would relieve this chronic problem was only "prn” (as needed), asking them to consider giving it routinely. In hospice circles, there is a familiar saying, "prn means pain relief negligible." In this case it was more than true.

Nearly a week went by before I saw him again. This time when I went in to see him, he was much more agitated than before but again denied pain. I found that he was lying in a urine-soaked bed and by this time his mental acuity and speech had deteriorated to such an extent that he couldn't verbalize the source of his discomfort. I went out to get help with changing him.

Afterwards, I again looked at the chart. The medication hadn't been changed. The nurse on duty told me how his agitation was a definite problem, especially at night and that he commonly threw his legs over the railing and even tried on several occasions to climb over the rails. Any degree of success would've most likely meant a broken bone to compound the misery of his condition.

I got on the phone to his primary physician to ask for a change in the order to keep him not only comfortable but also safe. Before I could get more than a sentence out of my mouth, she cut me off and asked to speak to the nurse on duty. After verifying that my information was correct, she did indeed change the order. That's when all hell broke loose.

By the next day this doctor had called the facility, the hospice and the financial people involved. She didn't like the fact that I, though an authorized representative, had accessed the chart. She apparently didn't appreciate being contacted by someone out of their system. It didn't matter that the family and trust company had sent me to watch out over their father and client. Their main concern seemed to be that an "outsider" (by their definition) had found a deficiency in care and advocated so brazenly for the patient.

The bonfire of their vanities was roaring. They wanted a fresh sacrifice to appease the demigods of wounded physician and corporate pride.

The next morning, I had the son and durable power for health care fax over to all parties involved authorization for me to see his father and access his medical information. The controversy should've been over. But it wasn't.

The trust officer on the case had just replaced one who'd been wholeheartedly supportive and was adversarial to everything I tried to do.  Call it an old-fashioned personality conflict but she blocked my every move to attempt to find relief for this man. For reasons unfathomable to me, she believed the nursing home's indignant protestations that their care was above reproach.

The next day, while the administrators of three companies spent time trying to nail me for something picayune, one of the sons went to visit his father. He heard him moaning and crying in the hall as he walked towards the room. No one had responded.

It must've become a sound they'd gotten used to.

He found his father's head lodged in the side rails of his bed and promptly lifted his head off the metal railing onto the pillow. He told me by phone that he quieted immediately, "like he knew he was loved again."

The son didn't know how that kind of thing could happen. Unfortunately, I've seen it all too many times. What I've also seen too many times is how organizations with paranoid and sick corporate cultures will close ranks in order to maintain control.

Get caught on the outside of that and you will find yourself torched in a conflagration of hellish proportions. After the reactive backdraft had subsided, my patient was finally being well-medicated and the facility, as well as errant hospice, are bending over backward to make sure he is dying well.

The trust officer was called on the carpet for interfering in health care decisions she knew nothing about, nor had any legal authority over. Even though I worked myself out of a job, I remain committed to facing the Lilliputians of nursing home management who still want to know just what gives me the audacious idea that I can simply walk in a room and make a difference. Truth be told, my confidence comes from knowing that I do not walk in that room alone.

If you or your loved one is struggling, and you’d like an advocate along the aging journey, Grace Care Management is here to support you. Give us a call at (760) 789-9177 for a free consultation.