It’s National Hospice and Palliative Care Month which means now seems as good a time as any to sing the praises of hospice.
If you’re not familiar with hospice, these are organizations that provide end-of-life care. People often think hospice is only available to those with less than six months to live, but that’s not always the case.
Medicare will only cover hospice if a person is terminally ill and has a six month or shorter life expectancy. However, private health insurance companies may have different rules and that means hospice could be available long before that point for many people. It’s my understanding that physicians may make a referral to hospice once a terminally ill person is no longer actively trying to delay the inevitable.
In my husband’s case, we elected to have some “maintenance” chemotherapy after his cancer came back. This wasn’t chemotherapy we hoped would cure him; it was chemotherapy we hoped would buy him some time.
The exact timing is lost in my bleary memory, but sometime around the holidays of the 2013, the chemotherapy stopped buying time and the tumor started growing again. We were told we could try some other chemotherapy – more intense chemotherapy – but we didn’t see the point. The chemo made my husband sick so we decided he could feel miserable and die or he could feel more like his old self and die. We choose the latter.
Hospice: Everything you need in one place
When Tom told the doctor he wanted a referral to hospice, we were ushered into the hospital “sad room.” Maybe you’ve been there before – it’s the room with comfy couches and tissue boxes on every table. A social worker came to see us and go over our hospice options. And then a parade of nurses and support staff we’d come know over the previous two years stopped by to say good-bye. It was an unexpectedly emotional process, especially considering we’d already been living with this terminal diagnosis for months.
Just as you probably have your choice of doctors and hospitals in your area, you likely have a choice of hospices. We didn’t put any deep thought into our choice (it actually didn’t even occur to us to research area hospices) so when a list of names was rattled off, we went with the faith-based option because, well, why not.
Now here’s why you want hospice: They do everything. And I do mean everything.
Or at least ours did (shout-out to you Faith Hospice). I think we got a call from a nurse before we even got home. I believe she showed up that same day to see us. Of course, they showed up with more information than we could possible process at the moment – including a booklet that ended with the sad story of the ship passing over the horizon, the one that still makes me weep today – but they also came with heaps of compassion and knowledge.
Our nurse, whose name unfortunately escapes me, was amazingly kind and compassionate. Unlike the hospital social worker, who made us feel a little like we were being patted on the head, the hospice nurse and workers were kind without being condescending.
The doctor came to see us; the nurses came to see us; the prescriptions came via delivery to our front door. After months of weekly, and in some cases daily, visits to the hospital for treatment, being able to have the medical care come to us felt a little like winning the lottery.
The only call you’ll have to make
In my book, one of the biggest benefits of hospice is the services they provide at the time of death.
Once Tom was gone, the only call I had to make was to hospice. I didn’t have to go into any long explanation. I simply had to say my name and that my husband died, and they said a nurse would be on her way. Twenty minutes later, she arrived to declare a time of death and then she coordinated with the funeral home. I didn’t have to worry about any of the logistics which was a blessing because I had five kids to worry about instead.
Then, hospice arranged for someone to come and collect leftover medications; they sent bereavement counselors and followed up at various times in the following year.
Most importantly, hospice made it so I never felt alone. Tom died at home, in his own bed. That’s how I wanted it, and with hospice, I never felt like that was an unreasonable or irrational idea. It didn’t matter what happened, hospice was there 24/7 to answer questions or send a nurse. It blew my mind how responsive they were.
Of course, it could be that our hospice and our nurses were exceptional, but I hear from others who have had similar experiences with other hospices. So I feel fairly confident in saying to those caregiving for someone with a terminal illness: ask for a hospice referral. I can’t imagine you’d regret it.
Who pays for hospice?
Nothing is free and that includes hospice. Fortunately, most private health insurance plans seem to cover it. In addition, Medicare will pay for hospice if your life expectancy is short enough. Plus, it may also be a Medicaid benefit in some states.
I don’t remember ever getting a bill from hospice although I certainly may have and simply don’t recall it. I was told at the start that they figure out how much your insurance will pay and try to tailor their services to fit within that amount.
All I know for sure is that after the confusing billing system of the hospital, hospice was a breath of fresh air.
Have you or a loved one used hospice before? What did you think?