Sep 29, 2013

On the Brink of Hospice

What else do I need to know that I don’t know I need to know about involving hospice at this stage?

By Pamela R Kelley
Alzheimer's Reading Room

At our last appointment, Audrey’s doctor told me she would like to certify her to hospice care. That it was time. In the doctor’s opinion, she would be enrolled.

“What that means is we’ve concluded your mother is nearing her end within six months.”

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As a longtime caregiver, I’ve learned these things. I know about the six-months measure, important to certify for Medicare’s coverage of hospice care.

I know that the doctor’s referral doesn’t mean the hospice medical director will agree and enroll Mom. I also know that it’s likely that Mom will be enrolled and that the window on our time together is closing.

Yet when I heard the doc recommend “hospice”, I reached out to touch my Mom’s hand and hold it to my forehead while I blinked rapidly.

I’m not eager to see Audrey go.

It would be selfish to prolong her stay. Welcome to the final stages. This could last a while; it could come quickly. Nobody knows. I’ve got to be ready.

One thing I do believe, hospice will be an asset to our caring team.

As I’ve shared the news of this development with family and friends, I’ve watched them confront this expectation of imminent death that, for many, the utterance of “hospice” implies.

There are lots of assumptions about hospice in the wider world, though the prevailing unstated assumption would appear to be that Audrey is on death’s door.

She’s not. She’s certainly within its zip code though.

Mom is not eating much. She has lost twenty-percent of her body weight in a very short period of time. She is frail. She is weak. She is talking less, and more insensibly. She is sleeping much, much more.

Immediately after I agreed with Mom’s doctor that the referral should be made, it seems like I stopped asking questions in that tiny examining room.

The questions started to occur to me once I returned home and reviewed the “Orders and Instructions” portion of her appointment summary.

First, there was the use of the generic “hospice” – no specific hospice organization was identified. We have two in our vicinity, and so I had to wonder which one.

That led to my second question: what was the selection criteria Mom’s doctor used in selecting whichever one they would be contacting.

Third was the timetable – the doctor said that we’d be contacted within 24-48 hours, which added to my sense of urgency and a nagging suspicion that maybe Mom was in a condition more grave than I recognized.

Was that true?

My fourth question asked what was the difference between the doctor “certifying” Mom to hospice, and hospice medical director “enrolling” Mom in the program.

I set out to answer my questions while I waited for that call from hospice.

I learned that one of the local hospice providers did not bill third party payers, including Medicare. We’d been referred to the other. That made sense, given that Mom’s primary care physician is in a Medicare clinic that was created to address a shortage of clinicians who would take Medicare patients within our community.

The timetable proved more elastic than Mom’s doctor stated with such certainty.

That 24-48 hour clock didn’t begin to run until the doctor’s certification was transmitted to the hospice provider. Made sense. But Mom had some blood work done while we were there, and as a result her file hadn’t “closed” even three days later. The practice would not transmit until then.

The clock that was silently running in my head hadn’t even begun to run. This was valuable information for one like me who works to keep stress to a minimum, so necessary if I am to do my job of caring for Audrey most effectively.

We remain on the brink of hospice.

The weekend is approaching, and before it’s here I will call the hospice provider to confirm that the certification is in their possession and to schedule the appointment. Every step along the way, I am reassured they will contact me.

Soon. Very soon.

I’m sure they will, eventually.

But it’s my job to manage this gap in time between the doctor’s sympathetic words and contact from a new organization with which I’ve had no experience.

The passivity that my instructions suggest (“Wait. They’ll contact you.”) is not consistent with my habit of advocating daily for what’s best for Audrey.

If hospice is as understanding as I’ve come to expect, then surely they’ll forgive my activist nature. Hope so, because pretty soon we’re all going to be in this together.

I was remembering Dotty through all of this, and that Bob had some issues over the transfer from medical practice to hospice, followed by a very good experience of hospice care.

It was my memory of Bob’s experience that had me on the phone prodding the medical practice, and will drive me to the phone again today.

By midday, I’d learned that hospice didn’t have a referral yet. I left my mother’s side and drove over to the primary care practice, prepared to wait until I had referral in hand.

Ours is a small city; I knew I could hand-deliver it without as much effort as this ping-ponging round of phone calls had required. The office manager was sure she’d transmitted the referral on Wednesday… but she explained they were going through a computer system change-over this week and maybe it hadn’t gone through after all.

Records were copied, and a direct dial phone number provided in the event what they’d provided was not what the hospice provider needed. I went to the hospice offices, and met some nice people. They gladly took the referral paperwork, mentioned that they had their own form for certifications that the doctor’s office would need to complete. The woman who met with me explained that she would follow through with all of that.

Audrey has not yet been enrolled in the hospice program. Their best estimate is that she will be evaluated by their medical director early next week.

We remain on the brink of hospice.

Learn More - Hospice Care and Dementia Care

At day’s end today, I thought of the collective brain of the Alzheimer’s Reading Room community, and it occurred to me to ask the readers here for some guidance.

I didn’t need know last week that I needed to manage the hand-off between physician and hospice quite as intensively, and we lost some days while my mother weakened further.

Based on that experience, I wonder:

What else do I need to know that I don’t know I need to know about involving hospice at this stage?


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Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

Originally published September, 2013