My dad started receiving hospice services a few months after he stopped treatment for cancer. I knew there were benefits to starting hospice “early”, I knew it was covered by Medicare (and most insurance), and I even knew hospice provides services for the whole family. Even so, there were some things that surprised me about hospice care at home.

If I could go back in time, here are three things I’d tell myself so I could better prepare.

Prepare for an Emergency

I was taken by surprise when my dad fell and had to be taken to an inpatient hospice unit at the nearby hospital, which in turn required me to make a tough decision, quickly. It sounds a little silly now, but part of me thought (and all of me hoped) that he would die in his sleep at home.

It’s far more common, though, for someone receiving hospice care at home to experience symptoms that seem to need treatment. And sometimes that treatment is beyond what’s considered appropriate for hospice. Hospice is intended to keep someone comfortable, and to manage (not treat) their symptoms. If the treatment goal is considered “curative”, you may have to opt-out of hospice to get it. A blood transfusion, a surgery…all can be arranged if you opt-out of hospice services. We opted my dad out and back into hospice over the course of a weekend so he could get a blood transfusion. And I’m still conflicted about whether that was the right thing to do.

It can be very hard to let go of the idea that we should treat every life-threatening symptom. Especially if there’s someone in front of you telling you they can fix it. But if a person is on hospice, a doctor has certified that they have less than 6 months to live. In our case, the doctor told me that my father would likely die without a blood transfusion. He didn’t explain what might happen if he did get the transfusion…and I never asked. My dad spent the rest of his life in a bed. If I were to face the same choices again, I would spend more time considering the impact of treatment and preparing my mind for what to do in an “emergency”.

Hospice Doesn’t Cover Everything

We were so incredibly grateful to find out that hospice would take care of medication management, and assist with bathing, and provide certain equipment and supplies. I loved having someone to call and ask questions, and so did my dad. We couldn’t believe how much my dad loved music therapy. (And we weren’t surprised when he refused spiritual guidance.) I learned so much from the information they shared. But I was still surprised that hospice care at home is limited, and inpatient hospice care more limited still.

I think I had a vision that when we needed it, round the clock assistance would be available. Generally, that’s not the case. We had help from hospice a few times a week, but we still needed private caregiver support (more and more as time went on.) Even with hospice support, I still had more caregiving responsibilities than I expected.

You May Be On Your Own at the End

A week before my father died, we were put on red alert by a call Christmas Eve morning from the hospice nurse. She told us there was a “change in condition” and my father had started to show some of the signs of imminent death.

A day before my father died, he was agitated and experiencing breakthrough pain that could only be treated with injectable medicine. I asked how often the nurse would be back to administer it. She didn’t say it wouldn’t be her, but she did remind me about the “comfort kit” which was given to us when we started receiving hospice services. I remembered. It was in the fridge next to the lettuce.

It was New Year’s Eve morning when I went over to my parents’ house to get a lesson in how to administer the injections…just in case. Then the nurse told me told they didn’t have anyone who could come after 5pm. It was a holiday and they were short staffed. If my dad needed the medication before morning, it was going to have to be given by me (since most caregivers are not licensed to provide medical care.)

In the end, he died before he needed that second shot. I was there and I was ready “just in case” and I didn’t wish a hospice nurse was there with us. But it never occured to me that staffing issues would affect whether and how quickly someone could help us if we needed it. Staff shortages in home care are expected to reach epidemic levels in the next few years, so maybe it shouldn’t have surprised me. But it did.

I don’t think being left on your own to manage a transition like this is very common in hospice, but it isn’t unheard of either. Whether you live in a large urban area or a rural one, it’s worth thinking through who will do what (and how) if you don’t have a professional there in person to guide you at the end.

I want to be clear: our family’s experience with hospice care at home was overwhelmingly positive. And even though the Medicare-covered services are all the same, there are differences in hospice providers.

Independent of the surprises I had in the last few, days, the services we received were a huge comfort to us. And most importantly, my father was not in pain or alone when he died…which was was the goal all along.

Take Care,

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