The "last day" protocol
Dr. Eleanor Barbera
I waited outside the room until the rehab therapists finished talking to Jim, who'd been admitted to the nursing home the night before. I read over the basic info on his face sheet before my consult. Jim was an 87-year old widower with a long list of diagnoses, some very serious.
After a moment, the rehab people left and I sat across from him and introduced myself and explained my role as the psychologist.
“How are you handling all of this stress?” I asked.
“I'm dying,” he replied.
“You don't think you've got much time left?”
“Does that upset you?”
“No, not particularly.”
He seemed quite calm.
“Are you sleeping okay? Eating okay?” I proceeded to ask him all the questions I'm supposed to ask patients I meet for the first time. “What kind of work did you do?”
He quietly answered them all. After a while there was a knock on the door and his physician poked her head into the room. “Just give me a minute. I'll finish up,” I assured her, and turned back to Jim.
“It's one of us right after the other, isn't it?” I commented. “Let's stop here today and I'll come back next week to see how you're doing.”
He gave me a funny look and half-shrugged. The doctor knocked again and I rose to leave.
It wasn't until I returned to work the following week, when I learned Jim had died, that I realized his look meant, “I told you. I'm dying. I won't be here next week.”
In hindsight, I wished I'd asked Jim more specifically what he meant when he said he was dying. People sometimes make remarks like that to me in their first few days in the nursing home without meaning that they're in the active dying process. If I'd realized I wouldn't have more time with Jim, I would have abandoned my standard questions and focused more on being present with him.
I was even more distressed that Jim had spent his last day fielding interviews from well-meaning staff members determined to provide good care. He was patient and kind about it. I'm guessing he was a really pleasant man, maybe too nice for his own good. That might have been something we could have worked on in psychotherapy.
If I knew I was dying, I wouldn't want to spend my last day answering the questions of strangers trying to provide services I knew I wouldn't be around to receive. I hope I'd be more assertive than Jim about refusing care, but there must be a way to offer a better experience for a dying person than having to rely on their level of assertiveness when ill and faced with medical routines. Perhaps we could establish a “last day” protocol.
The “last day” protocol
It can be difficult to tell exactly when someone is going to die. People are put on hospice services because they supposedly have less than six months to live. Hospice can be extended and then extended again.
More than a few residents think that “the medical vultures” are trying to pump them for money-generating procedures until their last few hours on earth, but the staff members I saw entering and exiting Jim's room were just trying to do the best job they could. According to the regulations, new residents are supposed to be assessed within a fixed amount of time and by certain departments. If the rehab therapists, for example, had known he was that close to death, they wouldn't have taken his time on their questions unless they were obligated to.
If Jim knew that he was actively dying, someone with medical expertise would have known. There should be something in place that stops the treadmill of assessments and care – a “last day” protocol.
This “last day” protocol would allow someone on the medical team to declare that an individual is actively dying – not necessarily on hospice, but dying – and that all nonessential evaluations can be set aside without regulatory penalty.
Perhaps the resident would still want to see the psychologist, because there's a place for psychology – or chaplaincy – on the last day of life.
If I were to be admitted to a nursing home on my last day (but please don't transfer me from the hospital to a new place on my last day!), I'd rather have chocolate ice cream than a new shrink. And I'd want some flowers and music, a nice view and people I've known for years.
Without a doubt, I'd prefer the “last day” protocol.
Eleanor Feldman Barbera, Ph.D., author of The Savvy Resident's Guide, is an Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is a Gold Medal blogger in the American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with more than 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.