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The call from the nursing home came at 8 on Wednesday morning. Mom was not getting up for breakfast. Mom was always dressed, with make-up on by 6:30. I told the caller I had a 2-hour drive but was leaving immediately.

When I arrived, Mom was sleeping so soundly it was hard to rouse her. A flu swab was taken, and IVs were started. The day progressed and fluids resulted in some improvement, so I left that evening to return the next day.

On Thursday, Mom was diagnosed with the flu and a new IV solution with replacement electrolytes was started. Mom seemed more alert and was starting to take some food and fluids by mouth. Again, I headed back home.

At 9:30 on Friday morning, I received a call from the nursing home that Mom had fallen when trying to get out of bed. She was on her way to the local emergency room. She had a serious laceration on her forehead that required sutures. I was on my way.

The long and short of this prelude is that Mom had the flu, confirmed pneumonia after a chest X-ray at the emergency room, and a serious head wound and concussion. She already had an underlying age-related dementia at 97 years old and was reacting with confusion and agitation while in the ER. I called in hospice.

I am Mom’s health care proxy, her agent. I knew her wishes and had them documented in her advance directives. She did not want any antibiotics if she had a life-threatening diagnosis. Pneumonia is just that in the elderly. I agreed to oral antibiotics but no IV antibiotics.

Mom was admitted to hospice a couple of days later after an intake evaluation by the hospice nurse. She was started on low dose morphine and Ativan to alleviate her agitation and to relax the obvious distress she was experiencing. In addition to being semi-stuporous, she was unable to articulate her needs, a speech issue she had before the health events of the past few days. But, the deeply furrowed brow and crying out confirmed either pain or anxiety or both. Suffering either emotionally or physically was not to be part of her condition.

I consider myself knowledgeable in end of life issues and advance directives. When Mom was admitted to the nursing home five months earlier after a fall requiring rehabilitation, I asked if they offered a hospice program. “Yes and they also offered palliative care. I was satisfied, prepared for any issues that could arise. However, here is what I did not know.

The nursing home contracted with a local hospice agency to work with residents who required such services, a fairly typical arrangement. Mom would be under their care. When hospice ordered Mom’s medications, I assumed there would be no issue when they were needed.

I found myself standing in the hallway in the middle of the night fighting for my mother’s right to receive medication. I was confronted with nurses telling me,

“I am uncomfortable giving morphine;

Your mother didn’t ask for it;

It’s an ethical issue.”

I resorted to calling the supervisor on those shifts; contacting hospice for their intervention; threatening to contact administration. I was her agent! I was speaking for my mother! How could this be?

I learned that the medical director for the nursing home is not required to agree with the “advice” from the hospice agency regarding medication management. That medical director can override and change the frequency and dose of medication.

In fact, the medical director decided that medication should be on an as needed basis rather than a standing order to be given at set times. This change resulted in an escalation of agitation that could not be calmed, and administration of medication was left up to the discretion of the nurse on duty at the time.

After many battles and intervention between the CEO of the nursing home and CEO of the hospice agency, we finally did resolve the conflict, but it was exhausting. Mom finally relaxed and died ten days later, free of pain and suffering.

What do families do when they do not have an advocate who knows how to stand up for their loved one? I stayed in Mom’s room every night for 10 days so I could be there for her. What happens to the 95% of residents who have no one at their side? Do they needlessly suffer, even if they have their wishes spelled out clearly in their advance directives? How prevalent is this conflict between nursing home medical directors and hospice agencies?

A 1995 five-state study underscored the need for hospice expertise in nursing homes. It showed widespread untreated pain among elderly nursing home residents with [cancer], especially among the oldest and minority patients. 

The study, which was published in the Journal of the American Medical Association, concluded that there is room for dramatic improvement when it comes to treating and managing pain in nursing home populations.

How can families clearly understand the nursing homes policy regarding coordination of pain management orders with hospice? Obviously, as much as I know and as much as I asked the questions I thought covered my mother when she was admitted to the nursing home, I didn’t ask the right question.

Who makes the decision regarding pain management when my loved one is admitted to hospice? An uncomfortable medical director or the experts in end of life care management? Not too late to ask….

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