Decision making factors regarding hospice care: A qualitative exploration in patients with recurrent ovarian cancer.
Authors: Larissa Alejandra Meyer, Amy K. Schneider, Sarah Page Huepenbecker, Naomi N. Adjei, Gladys M. Estrada, Charlotte C. Sun
Journal: Journal of Clinical Oncology (2024)

e24035 Background: Women with recurrent ovarian cancer (ROC) often must make end-of-life choices involving hospice care. We qualitatively explored patients’ (pt) understanding of hospice, and main decision-making factors. Methods: Pts were recruited by purposive sampling for semi-structured interviews, which were recorded, transcribed, and consensus coded. Results: 40 pts completed interviews. Median age = 63.4 yrs and time since diagnosis = 5.5 yrs. Important facilitators and barriers to hospice emerged. Key facilitators included: 1) desire to reduce care burden on family; 2) desire for a high quality death; and 3) acceptance (not afraid to die). On reducing care burden, one pt noted: “ I would think that the single most important factor would be the relief that it would give my family members. That they would not bear nearly as large a burden if hospice were to pick up part of that...” On desire for a high quality death, and acceptance: “ I’d wanna go out with as much dignity as possible...if it’s my time to go, let me go. I don’t wanna be...connected to all kinds of IVs and tubes and things just to keep my heart beating .”. Key barriers were: 1) lack of knowledge about hospice; 2) equating hospice to ‘giving up’; 3) loss of faith; and 4) letting go of perceived life-extending medical care like hydration or nutrition. Lack of knowledge was a prevalent theme: “ You only do hospice when it’s at the very end of the road. But maybe that’s not true. Maybe you do that to get some special care for a couple of months to get you through a tough...time. I guess I don’t know.” On giving up: “I would not say I'm a fan of it (hospice) at all...I would rather go out fighting....to me it's like giving up...I can't really imagine that I would actually do that.’Regarding loss of faith or letting go of perceived life-extending care: “ Well, my thoughts on how it works is I'm really not sure. They're there to keep you comfortable in your last days, but I don't know because I've heard so many horror stories with hospice...yeah they keep your pain down, but they don't give you faith. They don't give you hydration... it's like, God, pretty much starving you to death. But I don't know if that's true. I mean, that's just what I've heard.” A pivotal decision making factor that could be either a facilitator or barrier was family support for hospice, reinforcing the need for shared decision-making among the pt, family and clinical care team. One pt stated: “ It's an emotional toll, financial toll, it’s a physical toll on the family...and I would just want to talk to my family about all aspects of it, and then they would go from there, what they would want to do, or what I would want to.” Conclusions: Understanding perceived barriers and facilitators to hospice care through elicitation of pt beliefs and values and focusing efforts on educating pts and their support systems about the role of hospice can empower women with ROC to make informed pt-centered decisions about their end-of-life care.