What Does it Mean When a Person With Dementia Goes on Hospice?

By David Heitz

I want to preface this column by saying that hospice programs are a blessing for people with dementia in numerous ways. My intention in writing this piece is to educate those of us with loved ones battling dementia-related illnesses so that we can get the most out of hospice programs.

But I’m going to start with a hospice horror story.

It didn’t take long after my dad entered a memory care/assisted living facility in July 2013 before the executive director informed us that he had become more than they could handle. With dad’s frontotemporal dementia diagnosis, his outrageous behaviors, angry outbursts, and refusal to allow certain people to bathe him had become too much.

She advised he probably would be better served in a nursing home. My brother and I, who don’t get along about anything as it pertains to our dad’s care, were devastated. My brother hated the thought of spending an extra $2,000 per month on a nursing home. I hated the idea of moving dad from an architecturally stunning facility into a hospital-like setting.

We found a solution in hospice care. By getting dad approved for hospice that meant that hospice workers came to dad’s assisted living facility a few times per week and gave the staff extra help in caring for him. The tab for hospice, which was about $8,000 per month, was picked up by Medicare.

But in May 2014, I got a call from the facility saying dad had slouched down in his chair at lunch and had become unresponsive for a while. I was suspicious, as my brother had just taken dad to the doctor a day prior. I had asked my brother what had happened at the doctor, and my brother replied, “He doped him up some more.”

When the wellness director called, I asked her, could this be result of some of the new medications dad’s doctor had put him on? She responded that, in fact, the doctor had discontinued all medications due to him being on hospice.

I admittedly went into a rage. “Insulin too, I asked?” The answer was, yes, insulin, too.

Dementia and When Its Time For Hospice

Hospice Horror Story Sends Me Over the Edge

When dad went on hospice, I knew enough as a health reporter to ask what would happen with dad’s insulin under the program. Dad was by no means dying. He ate five meals per day, which included three breakfasts because he would forget that he already had eaten and demand to be fed again. Taking him off insulin would be inhumane, as he regularly had blood sugar readings spike into the 400s.

The hospice nurse replied that Medicare only pays for medications related to the terminal diagnosis, and that likely would not include dad’s insulin. I advised her, in the presence of my brother and my dad, that as a John Deere retiree dad has excellent health insurance in addition to Medicare, so that would not be an issue. The John Deere insurance would pay for the insulin.

I apparently thought I had warded off my greatest fear – that someone would attempt to revoke dad’s insulin when he was still active, eating, talking, and quite frankly having nice visits with me every single day. Why did I suspect this could be a possibility? I won’t go into that.

Why the insulin was stopped and who asked for it is irrelevant at this point. The bottom line is that a doctor makes the change. Let’s just say the next day I raised holy hell with my brother, the doctor, and let out a drunken scream heard round the world on social media. Dad was back on insulin the next day. I quit drinking and remain sober 15 months later.

Let’s fast forward 16 months to this past April, when dad landed in the ER. He was found on the floor of his room in the facility in a pool of blood with deep gashes to his face. That is exactly what the nurse on duty at dad’s facility told me when I got the 5 a.m. call.

Medicare has refused to pay my dad’s hospital bill for that trip because dad was on hospice. The John Deere insurer did pay some.

After 18 months, even though dad has continued to decline, hospice abruptly was stopped two weeks ago.

Don’t Be Pressured: Be a Picky Hospice Shopper

Palliative Care and Hospice care in Late Stages of Dementia

I am not my dad’s power of attorney, and my brother and I are generally unable to communicate civilly. I’m certain he does not understand the ins and outs of the hospice program, and when I’ve tried to explain it to him, he has no interest and makes a mockery of my health reporting background.

Kurt Kazanowski is a hospice and home care expert as well as a global consultant to companies that provide hospice care. He’s an ardent proponent of hospice, and with good reason. I shared my story with him and asked how I could use it to better educate people who have loved ones with dementia and are considering putting their loved one on hospice care. My intention is by no means to scare people away from hospice care, but I also want them to know how to get the most out of it and avoid problems and misunderstandings.

The author of “The 7 Pillars of Growth for Home and Hospice Care” and author of “A Son’s Journey: Taking Care of Mom and Dad” had this to say.

"First, you need to be picky and careful when selecting a hospice provider. He said it is irrelevant whether a profit is for profit or non-profit. What is important is that family members interview at least three hospice providers and carefully select the right one for them."

Diane Carbo, purveyor of this site, also wants to remind everyone that hospice choices can be changed mid-stream.

Kazanowski said 10 to 12 percent of residents in long-term care facilities today meet CMS guidelines for hospice. But providers can make potentially subjective decisions as to what qualifies a patient and what doesn’t.

The stigma associated with the word “hospice” prevents many families from selecting the service. And with good reason. I burst into tears when the director of dad’s facility brought up hospice, because I did not fully understand myself what it meant. I assumed it meant he would be dead soon.

“Many people are not being identified as candidates for hospice, and there is a stigma,” Kazanowski said.

Eight Interview Questions for Hospice Providers

Here are eight questions he says you should ask potential hospice providers:

1. What is your turnover rate? The national average is 15 percent for hospice companies.  If the company you are interviewing has a higher turnover rate you need to understand why.
2. What is the average case load for a nurse?  The national average is 13 patients per nurse. This is a key question to ask.
3. Are your physicians board certified in hospice and palliative care medicine?  Just like you won’t go to a family physician for open heart surgery (you want a board certified cardiovascular surgeon), you want a physician who is board certified in hospice and palliative care medicine on the hospice company team you select.
4. Does the hospice have full time physicians? You want to know if the hospice you select has a full time medical director.
5. Does the hospice offer all four levels of hospice care? There are four levels of hospice care:  routine, respite, continuous care and general inpatient.  Does the hospice you select offer all four levels of care?  Ask for details in how they offer these four levels of care.
6. Does the hospice offer general inpatient hospice (GIP) care? The GIP level of care is the “ICU” of hospice care and is intended to care for patients who have break-through pain and symptom management issues.  You need to know and understand how the hospice you select delivers this level of care should your loved one ever need this specialty type of hospice care.
7. Does the hospice offer music therapy? The basic hospice benefit does not require a hospice to offer music therapy.  If the hospice you select offers music therapy they are going above and beyond the basic hospice benefit.
8. How many volunteers does the hospice have? The use of volunteers is part of the conditions of participation a licensed hospice must offer. Ask how many volunteers the hospice has and how many volunteer hours the hospice provides per month.

Download Your Hospice Questions Checklist

How Did These Things Happen to My Dad?

As for my dad’s case, Kazanowski said family members should ask a hospice provider what their philosophies are about a patient’s medications. Sometimes when a patient is taken off medications they actually do better, because it may turn out they were overmedicated.

A decision to take a patient off insulin, as in the case of my dad, should have been decided at a meeting held every two weeks between the physician, the hospice provider, a nurse, and a social worker. Family members are entitled to attend these meetings, Kazanowski stressed. Of course, the POA would need to approve who is able to attend.

As for dad’s emergency room bill, it’s true that Medicare generally will not pay in such situations. Kazanowski said one way of handling it would have been to simply state in the ER a request to revoke hospice. Of course, that would have to be made by the POA. In that case, Medicare would have paid for my dad’s bill, and then dad could have gone back onto hospice later.

“I don’t advocate that that’s the best way to handle things,” Kazanowski added.

In his book, “A Son’s Journey,” Kazanowski devotes an entire chapter to hospice care, including the “10 Myths of Hospice” an “Demystifying Hospice.”

With dementia a global epidemic, and with so many people in the U.S. meeting the qualifications for hospice care, many still elect not to use it, Kazanowski said. In hospice surveys, nine out of 10 loved ones say they wish they would have chosen hospice sooner.

I can tell you this: Dad loved the extra attention that he had on hospice, and he has continued to decline since its removal two weeks ago.

What are Your Concerns about Hospice?