An end-of-life conversation may increase hope in patients with cancer, however many patients may be getting it from oncologists when it’s a “too little too late,” an expert said.
For a patient with cancer hope can be a complex thing and hard to come by, although advanced care planning may help, an expert said based on results of a recent study.
Dr. Michael G. Cohen, lead author on the study and a gynecologic oncology fellow at the University of Pittsburgh Magee-Women’s Hospital, explained in an interview with CURE® that it is important that oncologists and patients who have advanced cancers or cancer that are not curable discuss advanced care planning. Despite this, many oncologists worry a conversation like this might affect a patient’s hope, which is also important.
“When we looked at reasons (why) oncologists don’t engage in these advanced care planning conversations with their patients, a fear of giving up that hope or being seen as giving up was pretty pervasive.It was one of the main reasons that oncologists cited for not having these conversations,” he said. “Our study shows that oncologists can maintain that hope, maintain all those important aspects and still engage in these important conversations.”
Researchers sought to identify if advance care planning in the form of an end-of-life conversation affected hope in patients.
“Hope is a really complex psychological phenomenon, … (and) hope has psychological impacts on patients,” Cohen explained. “It has relationships with anxiety and depression. Hope also has relationship with … symptom management, so how patients are feeling. And then hope is an important aspect in a patient's relationship with their oncologists.”
Cohen added that hope can mean many things for patients including a cure and time, and can enter the interpersonal and family realm.
“Patients often hope to meet a grandchild or hope to reach some certain experience in their own life or the life of a family member,” he said. “Hope also has personal aspects as well. It's not just hoping for more time, but certain patients also hope not to be a burden, hope to have a peaceful death. Those are really important aspects of hope as well. What we know is that hope is an important part of cancer care and it's pretty broad when we look at where hope comes into play.”
The study, which was published in the journal Cancer, included 672 patients (mean age, 69 years) with advanced cancer. These patients most commonly had lung cancer (36%), gastrointestinal cancer (20%) or breast/gynecologic cancers (16%).
A total of 378 patients (56%) did not have an end-of-life conversation at the beginning of the study. Of those patients, 111 had a conversation by three months.
Hope was not different between patients who did and didn’t have an end-of-life conversation. Additionally, hope was not affected in patients who didn’t have an advance directive at the start of the study (216 patients) compared to those who did (67 patients).
“Looking historically at the literature, when we think of advanced directives, it can be a medical orders for life-sustaining treatment or a physician’s orders for life-sustaining treatment form,” Cohen explained. “They come in different names based on the state, but there are state orders forms for what patients want at the end of life. They could be health care proxies. They could be health care power of attorney forms. There's a whole variety of ways that these advanced directives come into play. But typically, it's some documented directive for what the patient wants in the event that they can't make decisions for themselves.”
When researchers took several factors into consideration, hope was significantly increased in patients who had engaged in an end-of-life conversations. Similarly, hope was significantly higher in those who had an advance directive compared with those who didn’t.
Cohen explained they don’t know for sure why this increase was observed, but he believes it’s possible hope increased because those patients who had advanced care planning have an established idea of what wishes of theirs can and cannot be met. In contrast, patients who are not having these conversations may not be able to have the opportunity to choose what the end of their life looks like, Cohen said.
“These providers are basically having these conversations too little too late. And often these conversations only come up in crisis moments,” he explained.
Further, he said that just because their oncologist isn’t initiating the conversation doesn’t mean a patient shouldn’t be engaging in them. He suggested patients bring it up themselves, as they may feel better by doing it.
“It’s important for patients to talk to their providers about what their desires are and what they want their life to look like. And I think that providers are often willing to engage in that, but I think sometimes they are just waiting for the patient to bring it up first. It’s an important thing for patients to feel comfortable bringing up as well,” Cohen concluded.
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