Hospice: A Perspective of a Former Hospice Nurse-turned MBC Patient
Danielle explores the topic of hospice care with a former hospice nurse who was also diagnosed with metastatic breast cancer (MBC).
What is hospice?
It's a place where people go to die. That was the definition given to me at twenty years old by a sweet young man I was in a relationship with. He was telling me the story of how his mother died of cancer while he was a teenager. When he said she went to hospice, I asked, so naively, "What's hospice?". How lucky I was to reach the age of twenty and not know.
And that matter-of-fact response, how he said it, so casually, has stuck with me for the past seventeen years. "It's a place where people go to die." It wasn't morose, or melancholic. It just...was. That's just how it was.
Different kinds of hospice experiences
I later learned, however, that hospice isn't quite so simple. Yes, ultimately, it is a place where one goes to die. But some people live well in hospice for quite a long time.
Never did I ever think that I would be thirty-seven years old and be surrounded by the word hospice. I am not ready for hospice but have seen many friends with MBC cross those gates. I have heard them say, more times than I count, "It's time for hospice." Women the same age as me, with children the same ages as mine. Here one day, and gone the next. Then I have seen others enter hospice healthily for months, exploring Europe, or riding helicopters around the Grand Canyon. I even have a friend who entered hospice, and then felt so good she left and went back on treatment. Nearly a year later, and she is doing well. Hospice, I learned, is such a huge variable. When and under what circumstances does one enter?
Hard conversations with your oncologist
Like a lot of metastatic patients with progression and failed treatments, I have had that hard conversation with my oncologist. "You'll tell me when it's time, right?", I asked.
"Because there are still a lot of things I want to do. I'll have to get my children ready. I don't want the end of my life to be rushed. I want to still be able to do things. Promise me that you will give me a warning." And she told me, yes, there should be plenty of warning. She won't surprise me. When the time comes, we'll know. Now, thankfully, is not that time. We also discussed under what circumstances I would enter hospice. My oncologist told me that depends on a lot of things, such as how my cancer is responding if my other organs can withstand more chemotherapy and if I even want to live with further side effects. Entering hospice, as it happens, wasn't as simple as I had thought.
A professional, turned personal, perspective on hospice care
In my quest to learn more about hospice, I had the wonderful opportunity to talk to Jessica Carroll, a hospice nurse-turned metastatic patient in Texas, about her experience and perspective on hospice care.
Meet Jessica C.
So my name is Jessica Carroll, 31yo, and I'm from Kansas but moved to Texas a few years ago. I was diagnosed de nonvo stage IV in March of 2020. I graduated from nursing school with my Registered Nurse license in May 2013. While in nursing school, I did 30+ clinical hours in a hospice facility because I was drawn to it. As I worked side by side with hospice companies for years, I didn't do it full time until 2015. I worked in an inpatient facility or as we say "Hospice House." I then moved to Texas in 2018 and continued hospice work in an inpatient setting until my pain got worse and led to my diagnosis of MBC in 2020.
When you first became a hospice nurse, what surprised you the most?
That not all the patients were near death. There were many patients that were quite comfortable in their day-to-day life and would be stable for some time.
What was a typical day like for you at work?
It was usually busy. Lots of time was spent educating family members and controlling the symptoms of the patients.
Is there any advice you would give to the families of hospice patients?
If you have questions or concerns ask the nurse or doctor. The end of life can look different for everyone, and knowing what is going with your loved one can help during this difficult time.
Is there any advice you would give to new hospice patients?
As above, ask questions and try to establish a good relationship with your hospice team. Also, just because you are on hospice services doesn't make things progress faster, some people can be on hospice for a while. They are there to help keep you comfortable and give you the best quality of life you can have.
Now that you yourself live with metastatic breast cancer, has your view of hospice changed at all? If so, how?
Not at all. If there becomes a point where I am ready to change my care plan, I will definitely seek out hospice.
Is there a story about a favorite patient you’d like to share with our AdvancedBreastCancer.net community?
I remember caring for a slightly older gentleman that passed away after being with us for a while, but then about 6 months later, his wife started care with us as her cancer progressed. She wasn't communicating much at this point but one day she awoke and said she saw her husband and his best friend, she said they told her they had been 'waiting for her, so hurry up.' She was so happy and peaceful after, that she soon passed away.
Finding peace in hospice care
While hospice is, as my long-ago boyfriend so aptly put, "a place where people go to die," I have also learned it can be so much more than that. It can also be a place where people go to live freely and find peace before they die.
To spend the last of your time alive with freedom from endless scans and anxiety, port flushes, pre-meds, and chemo infusions, pokes, and prods, for however long that may be. To find peace in knowing you never have to worry about any of things again, and you can just enjoy what's left of your life. After learning more about it, hospice doesn't seem like such a scary place anymore.
Would you like to share any experience or thoughts you have about hospice with our ABC family?
Editor’s Note: We are extremely saddened to share that on Friday, October 29, 2021, Danielle Thurston passed away. We know that Danielle’s voice and perspective continue to reach so many. She will be deeply missed.
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