Many years before I stepped in as Mom’s essential caregiver, I had limited knowledge about what Hospice is or that they provide many different services aside from the end of life. I had a few wrong assumptions, particularly about who pays for Hospice. As Mom’s way of living declined with more limitations, I went looking for additional help with her care but felt stressed as I managed her financial resources.
Like many other caregivers, I struggled to decide between knowing when it was time to abandon curative services and beginning comfort services provided by Hospice. Unfortunately, Mom had reached a level of declining health when her kidneys started failing. Since Mom firmly declared she did not want any dialysis, then the decision was made for me. It was no less of a heavy-hearted decision. That is until I spoke with my first Hospice representative.
One person willing to educate can make a difference in easing fear and skepticism. This experience with Hospice was such a great first time that I could not imagine what could have gone wrong with other caregiver stories of quite the opposite. I would have stayed with this company if I did not need to relocate Mom to a better-assisted living and memory care community. We live and learn, though.
Once Mom transferred and settled in with the new Hospice provider, she improved even more. Being in a better community with extra hands-on through Hospice did help Mom improve. Her kidneys bounced back, and even her overall demeanor toward living improved. Soon after, we were presented with our first scenario to graduate from Hospice. Although she was admitted due to congestive heart failure (CHF) and Alzheimer’s, which did not change, her improvement in mood, engagement, and physical activity is what determined this graduation.
Her medications had to be switched back to the pharmacy since she was now off Hospice. This switch caused an adverse change in her care which I’ll call a hiccup in care. Mom’s CHF worsened within two weeks, and oxygen was ordered, so I fought to get her back on Hospice.
When I originally had asked, “who pays for Hospice?” The main answer is Medicare. This information helped to relieve some of the stress caused by the financial strain of her care. However, Assisted Living, Memory Care communities, and even Hospice companies are not created equally. Medicare pays the bulk of the services, whereas the businesses providing Hospice also have to bear the costs not covered by Medicare. Making the criteria for Hospice graduation subjective.
For those caregivers who do not know how to advocate for their loved ones, consider the following.
When patients no longer meet the Medicare eligibility criteria, they graduate from Hospice. If care is needed again, it is readily available because Medicare does not limit the number of times a patient enters and exits Hospice.
The general idea is that when your loved one’s condition improves, depending on the criteria for their particular condition, they are re-evaluated and then graduated from Hospice. This decision could be for various reasons and some that benefit the Hospice company more than your loved one.
In our particular instance of the second graduation, the reasons were not founded in the medical data as suggested. They also said she speaks too much and is not bad enough. Anyone who truly understands Dementia knows symptoms vary by day, week, and month as the progression takes place. Even though the bad days outweigh the rest, there are still good days. Being able to say "I'm hungry" or "I don't feel good," should not be a criterion for graduation when the patient lives with any form of Dementia. Each reason I was given was disproved when the decline from CHF, Dementia, and incontinence had all worsened. When I asked for a closer review of her status, they found she had lost 10 lbs, had less appetite, and was physically weaker overall.
At the start of the back-and-forth debate, Mom continued to decline and stopped speaking even more. Her communication became head nods, shakes, and smiles as typical answers to questions. Most of the time, she does not understand the questions and responds with shoulder shrugs or says, “I don’t know.” Just as I asked for a second opinion or decided to find another Hospice company, they finally agreed. They were comparing notes with the med aid, tech, and nurse and comparing the correct patient details.
The proof came in when I received Mom’s monthly Medicare statements. The difference in the amount billed versus those covered by Medicare showed a business loss of roughly $850-900/mth. Where I can sympathize as a business with the loss in revenue, I cannot fathom as a caregiver that our loved ones receive less care in the time of the greatest need. The potential to recoup this loss meant Mom had to be dropped as a 2022 admittance and readmitted with the 2023 rate increase to providers. That's not what I was told verbatim because it was what I came to understand based on our conversations and reviewing the statements after the fact.
So who really pays for Hospice when our loved ones are needlessly graduated? Our loved ones pay with their lives or lack of comfort with declining quality of life. Caregivers pay with their health as they are once again emotionally and physically stressed without the assistance of Hospice. The caregiver must now advocate for their loved one in an evolving world of aging consumerism. We have to learn how the systems in place work or work against our loved ones. This second graduation reminded me that even Hospice is a business.
Does it have to be this way? I think it’s time to re-evaluate the needs of family caregivers in our aging, mentally challenged, and disabled society.