People who have been diagnosed with malignant mesothelioma know that their disease is terminal and that their long-term prognosis is not good.
Despite this, some mesothelioma patients indicated that they feel pressured to remain positive, and that they have to “fight” the disease with all their will and strength. Studies have shown that forcing patients to maintain an upbeat, even unrealistic attitude may have a negative impact on their overall well being.
According to studies conducted by YouGov and Macmillan Cancer Support, patients with mesothelioma and other terminal diseases acknowledge that they think about dying from their disease, but say that cues they receive from those around them can get in the way of having the honest conversations that they want to have.
Of those who said that they’d been able to speak to their healthcare team about dying, only 19% said that the healthcare professional had initiated the conversation – in all other cases it was something that they had to bring up themselves.
When this reticence on the part of medical professionals is combined with family and friends demanding that they battle the disease, and that they are going to prevail, it leads to frustration. Of those interviewed 28% said that it had been hard to engage in an honest conversation about how they felt about their future, and the same percentage said that they felt guilt when they weren’t able to keep up a brave and optimistic front.
Though this may seem like it is simply a matter of attitude or semantics, for mesothelioma patients it may mean that they aren’t able to have important discussions about matters like where they want to be when they die, or other end-of-life preferences.
“We know that ‘battling’ against cancer can help some people remain upbeat about their disease, but for others the effort of keeping up a brave face is exhausting and unhelpful in the long-term. We need to let people define their own experiences without using language that might create a barrier to vital conversations about dying,” Adrienne Betteley, a specialist advisor on end-of-life care said.
“For health and social care professionals there is often a fear that the person is not ready to talk about dying. We know, however ,that making plans while receiving treatment allows people with cancer to retain a sense of control during an emotionally turbulent time.”
If you or someone you love has been diagnosed with mesothelioma and you need support t through this difficult time, we can help. Call the compassionate Patient Advocates at Mesothelioma.net today to learn more. We can be reached at 1-800-692-8608.