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

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This piece originally was published Aug. 16, 2015, for Caregiver Relief, which no longer is live. Reprinted here with permission. The article had thousands of shares on Facebook before Caregiver Relief went dark last month, and elicited responses from caregivers around the U.S. and around the world. Special thanks to Diane Carbo, purveyor of Caregiver Relief. My dad eventually was taken off hospice after being on it for two years and then died less than two months later, Sept. 27, 2015.

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, he 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 to 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 visit, 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 dad being on hospice.

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

Hospice Horror Story Sends Me Into Rage I Never Felt Before

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 that he would eat because he would forget that he already had eaten and demand to be fed again (the facility served breakfasts in three shifts). 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. (Editor’s note: This absolutely is not true as it pertains to insulin, I since have been informed by a well-known national law firm that advertises on television every 30 minutes). 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. I can tell you that the doctor’s nurse, Carol, said, “The doctor must follow the POA’s wishes.”

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 after nearly dying myself that night (attempted murder is how I see it, although it was listed by police as “assault”) and remain sober 15 months later. (Editor’s note: I will be sober three years in May, despite ongoing harassment related to being dad’s caregiver, 15 months after he has been put into the ground; his estate is not resolved and has become an ugly court battle between myself, my brother, and a neighbor of 50 years. I have spent $5,000 thus far just to get what my dad left me in a simple share and share alike will. I pray it all comes to an end Jan. 11 at the next status hearing; all parties involved have suffered long enough. I share this because this is not at all uncommon when one sibling is the caregiver and the other is the POA/executor. Make sure your parents put everything in writing including a binding caregiving contract between you and your sibling(s)).

Let’s fast forward 16 months, to April 2015, 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. (Editor’s note: This was the first step taken by the state of Illinois in seeing to it that I was reunited with my father. My dad was what was known as a 2:1, meaning it took two people to handle him at all times. It is a violation of state law to live in assisted living/memory care if you are a 2:1 UNLESS you are on hospice. The reason I was apart from my dad is because I was allegedly trespassed from seeing him (that was yet another lie, no paperwork ever was filed) after reporting an intruder at the facility on June 6, 2015, and then being taken to the Rock Island County Jail, stripped naked, emotionally tortured…ON NO CHARGES AT ALL. I did not see my dad for 108 days; he died 21 days after our reunion. The town I live in is a disgrace and people will be held accountable for all of this if only by their maker – but me thinks the justice system is going to work and people are going to be held accountable in that way, too. I know I need to forgive but I am not there yet. Even in the throes of addiction, I never could have mustered the evil that resides in the people responsible for all of this, particularly those who wear business suits. The others, I at least have some pity for and therefore am at least beginning to feel some compassion toward them).

Don’t Be Pressured: Be a Picky Hospice Shopper

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. He works in department store security. He once said, “I work in law enforcement!” to which I replied “And I’m a doctor” and that is about the only laugh we have shared together in five years.

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 hospice 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 words “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.

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 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” and “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.

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