What Is Hospice Really Like? Gina C. Tells Our ABC Community
Last updated: November 2021
Do you ever wonder what it is truly like to be in hospice care? It is a thought that crosses the mind of most metastatic patients at one point or another. According to the Hospice Foundation of America, hospice is defined as:
"Medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life. An interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family. Care that addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life."
Interview with a hospice patient
While experiences can vary, I wanted to ask a hospice patient to share her own unique, personal experience with our ABC Community. Thank you for being with us today, Gina!
Q: Can you please tell us a bit about yourself, aside from the cancer aspect of your life?
A: I've been married once and am currently engaged. I'm a huge animal lover and have one dog and two cats currently.
Q: In terms of cancer, can you please share with us your diagnosis and treatments?
A: I was diagnosed de novo in July 2019 with metastases to my liver, lungs, and bones. They then found brain metastases in December 2019. I have had one IV chemo and one oral chemo that just stopped working in January.
Q: You are in hospice, which is enormously significant. Can you please talk to us about this experience?
A: Hospice is strange at first because getting used to not being on active treatment feels almost wrong like you're not fighting and are just waiting for the cancer to take over. It's great, though, I have a nurse who comes to my house two or three times a week (it would be more often if I needed more help) to check vitals and see how I'm doing overall. I have lost a lot of strength and balance, so hospice got me a walker to help me get around safely and a shower chair to help there.
Q: What has surprised you the most about being in hospice?
A: It's surprised me that, because I'm in-home hospice, I have control of all my meds and they provide oral morphine liquid for when I have bad pain.
Q: What are some things you wish your family and friends knew about your experience that you think, perhaps, they don’t understand?
A: I think the biggest thing is just that hospice is not exclusively for those on their deathbed. You can live years on hospice.
Q: What is some advice you have for people living with metastatic breast cancer?
A: I'd say, finding a medical team that you like and trust goes a long way.
Thank you for the gift of your time today. We appreciate you so much!
To our ABC Community: Do you have experience with hospice? If so, what was it like? Please share with us below.
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.
Advanced breast cancer is an isolating and lonely disease.