Often after hearing patients and families talk about their hopes, I would ask for a definition of hope. Like some very common words, we all know what hope is, but when asked to define it… not so easy.
Hope is the belief in the possibility of a future good. “I hope the cancer is cured!” “I hope my wife gets the heart transplant.” Hopes may be beyond what we as humans can achieve and for this we have miracles. Hopes are always for a positive outcome as opposed to what might be expected.
Responding to patients and families who hold “unrealistic hope” is one of the most dreaded tasks healthcare providers have to deal with. In a recent study DeMartini and colleagues report on Patients’ Hopes for Advance Cancer in the Journal of Pain and Symptom Management. They found that they could be classified into 8 categories with their prevalence in this order:
- Improved Quality of Life
- To live longer
- Tumor stabilization
- To live to a milestone event
- To be cured
- To have control over the cancer
- To be cured (tempered with realism)
Most people were hoping for more than one thing and I would say all of these hopes are consistent with palliative care, cancer care and medical care in general.
This is the point when the realist points out QOL and while living to a milestone event or living longer seem to be reasonable; to be cured is not. We need to help people get out of denial.
There are some patients and families who hold on to the hope of cure to the bitter end. They are angry when we try to help them see the light and sometimes the care they choose seems overly aggressive to us. Most ultimately face their illness with amazing equanimity.
So what should we do when patients and families share their hopes with us? I advocate embracing and sharing that hope. “I share your hope that the cancer will go away.” (pause) Sometimes that is enough. Sometimes people want to talk about the likelihood of this hope coming to fruition. Often we realign hope toward QOL and being outside the hospital or even extend the range of hope toward family and loved ones doing well after their death.
It is human nature to hope to be cured.
DeMartini, J., Fenton, J. J., Epstein, R., Duberstein, P., Cipri, C., Tancredi, D., … & Kravitz, R. L. (2019). Patients’ Hopes for Advanced Cancer Treatment. Journal of Pain and Symptom Management, 57(1), 57-63.