Social Conflict 8: End of Life

Synopsis: All women with ovarian cancer deserve control of decisions about how their lives will end, no matter what the cause. But women often experience conflict over expressing their wishes about the end of life and seeing them carried out faithfully. Confusion often exists around palliative care options and patients’ rights. Sometimes this is the result of a “heroic” health care system pursuing a cure at any cost, but it can also result from conflicts within the family and support networks. Indeed, patients themselves may face a great deal of uncertainty about how to approach death.

Patient voices: “I thought I was not under any circumstances going to go through chemo, at all, never. I thought, ‘I will not do that to myself.’ I saw my mom go through chemo for lung cancer and I just wasn’t going to do it. I wasn’t going to put my husband through it, I wasn’t going to do it. … When I told my doctor that I might not do chemo, he looked at me like I had three heads. … I don’t know if it was a moment of grace or what happened, but I decided it would be foolish of me not to do it. At my first chemo appointment, I told the nurse what I was afraid of, I started crying and carrying on, my husband’s crying, she’s crying, and she’s like, I’m so glad you told me this. We are going to get you through this, all of this together. And they did. … When I go, I just want to go on my terms, that’s all.”

“I know the name of the bus that’s going to hit me. I just don’t know when.”

Group analysis: Our oncology nurses discussion group was most insistent on the need to incorporate information on end-of-life and palliative care into any resource for ovarian cancer patients. Despite medical advances, ovarian cancer is still a disease with a high fatality rate, and a significant number of patients must make decisions about the end of their lives almost as soon as they are diagnosed. The nurses were passionate about the needs of these patients being included in any new resource. Additionally, other groups noted the high potential for conflict around this subject and sought resources to help families cope and make decisions together.

Design principle: Any new resource for ovarian cancer must respect the needs of patients who must prepare for death soon after diagnosis. Any new resource must acknowledge and address social conflicts around the end of life.

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