Why You Want Hospice by Your Side When a Loved One Dies

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.13881106675_0e472a8397_k

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?



    1. I agree! Hospice is a tremendous support for the terminally ill and their families. I have two experiences to share.

      A few years ago, my brother Jim was diagnosed with lung cancer — inoperable and already at stage 4 when they found it. Chemotherapy was tried; it was not effective; he was referred to hospice in the Shenandoah Valley. With hospice support, including weekly visits, he was able to live at home with his wife and family for nine more months!

      In April 2015, my husband, George, was diagnosed with advanced, inoperable pancreatic cancer, already metastasized to the liver when discovered. Things went from bad to worse and by the end of May, he was out of treatment options. His oncologist told me she was referring him to hospice; I asked her to refer us to Hope Hospice in Dublin, CA because I knew one of their chaplains. They were wonderful! As you said, Maryalene, the hospice nurse visited regularly (twice and then three times a week). They arranged for the equipment we needed to keep George at home (hospital bed and table, etc.), arranged for medications to be delivered, taught me how to administer them, provided a log for me to keep track of what was administered, and arranged a home health aide to come once a week to bathe him. A hospice nurse was available to answer questions 24/7 — a HUGE support when George couldn’t sleep at night and I needed to know what to do at 3:00 AM. Hospice helped me locate a reliable home health care service when I concluded that I needed someone else to sit up with George at night. They gave us suggestions for things other family members could do (such as contact the cemetery and funeral home in advance). And you’re right, when George breathed his last, all I had to do was make one more phone call to hospice. Their nurse came over, made the official pronouncement, filled out the required paperwork, and coordinated with the funeral home. I couldn’t have navigated the unknown waters of terminal illness without hospice showing me the way.

      1. Hi Jean,

        I’m so sorry to hear you’ve lost both your husband and your brother. That’s a hard road to travel.

        Every once in a while I hear someone say they don’t want hospice, and I always think they must not understand what it offers. As with you, there is no way I could have gotten through the experience of losing my husband without them. They kept my sanity intact. Hospice is a true blessing!

        I’m sorry you’ve had to endure such loss, but thank you for sharing your experiences.


    1. If you have a preferred hospital or know that you may need to go to a nursing home, it’s important to find out which ones the hospice has contracts with so they can continue to provide your hospice services in this different setting.

      1. That’s great advice Julia. Thanks for commenting!

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