Incorporating the patient voice into HCC care

[AndreaWilson_Founder]

Hello everyone,

After moderating a discussion at SALCS this past weekend where DancingEyes63 spoke about her and her husband Jimmy's experience with HCC, I'm speaking at the Canadian Association for the Study of the Liver (CASL) Single Topic Conference (STC) this weekend in Toronto. (October is so busy!)

They want me to share "How to incorporate the patient voice into HCC care." As always, I want to include your voice in the presentation.

Would you mind replying and sharing how healthcare providers can incorporate the patient's and caregiver's voice into the treatment plan? I'll use your quotes in the presentation.

Thank you!

💙Andrea

[AndreaWilson_Founder Partner Editor Caregiver]

Any thoughts DancingEyes63 , Sschiltz , Dachshund45 , bwpickard , Hidden , Foxy1977

[Foxy1977 Moderator Patient in reply to AndreaWilson_Founder]

Absolutely! Let me gather them a bit more (just waking up from a nap 😉) & I'll post back later this evening!

[Foxy1977 Moderator Patient in reply to AndreaWilson_Founder]

First & absolutely essentially: treat us as people with cancer, not cancer patients. If clinicians adopt this simple, but profound philosophy as the basis for all care & interactions, the patient and caregivers will inherently be included.

As a professional & a patient, I can attest it's not the common way to treat us. But, it made all the difference for me!

In working with us as people, it's also very important to acknowledge that there is a mind, body, spirit connection that impacts healing. When I began treating my cancer as part of me & no longer as this outside enemy, I felt more in control. My immunotherapy is helping me to help myself. I have come to appreciate the messages that my rebellious liver has been telling me.

Thank you so much, Andrea for always representing us & working to make life better!

[scbauer77 Caregiver]

if a physician thinks palliative care is the best option given the extent of disease, i would encourage them to bring it up, even if this is the first meeting with the patient and family. for example, you could say, "treatment is an option; palliative care is an option." this could trigger a conversation and discussion about quality of life and priorities, even from the start of a physician-patient-family relationship.

after the initial diagnosis, shock can continue longer than expected. my father was diagnosed in march and died less than two months later. we all knew the diagnosis was dire, but my family and i have reflected we thought we had more time. we believe my dad did, too. even if you do this everyday, we don't. even if members of the family are in healthcare, they come to this space as loved ones scared about the future and going through anticipatory grief. holding space for these emotions is critical, and it is an essential component of shared decision making in medicine.

[Foxy1977 Moderator Patient in reply to scbauer77]

I'm so sorry to hear about your experiences. That is quite an awful timeline. I absolutely agree with your points. Coming from being in the oncology field, I've seen first hand how difficult & frustrating it is when doctor are so focused on the science that they skip the human part. Palliative care is under used and of course hospice can be used too late.

Thank you for sharing your observations & I wish peace & healing for your family 💙

[AndreaWilson_Founder Partner Editor Caregiver]

@all Thank you! Incorporating your feedback into the presentation.