The Difficult Question of When to Stop Treatment

Yesterday, I stumbled across the Twitter chat #whentostop, hosted by the Oncology Nursing Society (ONS), addressing one of the most difficult questions anyone with cancer has to face: when is it time to stop treatment? I am new to Twitter chats, though I have lurked during the Healthcare Leader (#hcldr) and the Breast Cancer Social Media (#bcsm) chats and have been impressed with the quality of discussion on health policy issues and the community of support for patients and providers. So I was happy to join with a group of mainly oncology nurses for a robust discussion, where stories, experience, research, and tools were shared.

Oncology nurse Carol Cannon hosted the chat and posted to ONS’ blog her thoughts on the question of when to stop treatment: “In the infusion center, there always seemed to be another drug to be tried, and I would never want to tell the patient otherwise. But as oncology nurses know, sometimes there is a fine line between treating the cancer to help the patient, and ultimately causing more harm than benefit.”

The chat considered important topics, including the fact that patients and some physicians equate palliative care with end-of-life care. Some participants said that they find the term “supportive care” preferable. One participant said she had to encourage her colleagues to talk about palliative care and have sometimes difficult discussions with patients, and we discussed whose responsibility it should be to have those difficult discussions with patients.

I believe it is a shared responsibility. Physicians should not shy away from the difficult discussions, but other members of the care team are often even closer to the patient going through treatment. Oncology nurses are the ones who hold a patient’s hand through debilitating chemotherapy, who know the patients’ needs better than anyone, and who often have to help patients and their families understand when treatment may no longer be in the patient’s best interests. I loved what Carol Cannon tweeted, “My best days are when I facilitate a good death or acceptance.”

We also discussed situations where patients are ready to stop treatment but family members want them to continue, as well as the ethical and personal challenges nurses face when they know that treatment will do more harm than good, but a patient wants to continue. The consensus was that if a patient truly understands both the benefits and risks of treatment, we must respect the patient’s choice.

Here are a few of my favorite tweets from the discussion:

“Empowering our patients to make decisions with no regrets is what we should strive for.” #whentostop https://t.co/gL8rrEerxX

— ONS (@OncologyNursing) August 14, 2014

I think a pt's most feared words are "there is nothing left we can do." But #palliativecare is always something we can offer #whentostop

— Carol Cannon (@cavcannon) August 14, 2014

@cavcannon Many times I administered chemo the day before my patients die. Feels terrible. #whentostop

— Kenan Ören (@kenanoren) August 14, 2014

@cavcannon Yes! and language about 'fighting' doesn't help people make the decision to stop. changing course isn't 'giving up'. #whentostop

— Jackie Foster (@oleenfermera) August 14, 2014

#palliativecare is an extra layer of support and symptom management that accompanies aggressive #cancertreatment #whentostop

— Carol Cannon (@cavcannon) August 14, 2014

Post by Shelley Fuld Nasso. Follow Shelley on Twitter at @sfuldnasso