We cannot assume that patients will automatically want to take advantage of every single therapeutic option available. If patients are able to do so, the decision should be theirs. The possibility of discontinuing therapies should be discussed as much as therapies themselves.
In the CME part of the British Medical Journal, there is a section called "What your patient thinks", in which patients describe their experiences of diseases and therapies and give us an insight into what has helped them (or what they missed).
In a recent article, an oncology patient described how difficult it was for her to communicate her wish not to receive any further therapy - especially to her therapists.1
Molly Bartlett was diagnosed with renal cell carcinoma 20 years ago and underwent a nephrectomy. When three more tumors were discovered in 2013, she decided to get off the (in her own words) "medical treadmill" and not seek further treatment, surgery or dialysis. She knew that the treatment options available were not a cure and wanted to enjoy her remaining time to the fullest.
There was one phrase in her story that I could understand well: she felt under pressure to keep fighting and not wave the white flag early. Often family and friends put her in such a situation, even if the available therapies only offered little hope for "more time". She was lucky to have an understanding and supportive partner who respected her decision. In her case, it was rather the practitioners who assumed that she wanted further treatment and sometimes made her feel that there was no room to think otherwise.
Hearing that no further diagnosis is needed or no other therapy is available can feel like there is nothing left to do; a feeling of being abandoned or discarded without hope. But for Molly Bartlett, "nothing" meant being able to live her remaining days according to her wishes and with a meaning.
"Being able to make this decision for myself gave me the feeling of being in control again. [...] My time is precious to me and there is still a lot I like to do - to be in the garden, listening to the birds and spending time with my partner, friends, family, and pets. I also started stargazing. I have found hope in preparing myself and my loved ones to fulfill my desires. She herself still felt she could contribute to relationships with loved ones and social circles.
It made her reflect on her life and how she wanted to live this phase differently. Above all, she wanted to feel like herself at this crucial time. Her priority was to stay positive and enjoy the rest of the time. She wanted a happy end to her life and to be supported in going through it on her own terms. For her, it is important to know that those around her are getting the help they need. She hopes that sharing her experiences can help change people's views on patient decisions and the decision to stop therapy.
References:
1. Bartlett, M. Finding hope in dying. BMJ 366, l2416 (2019).