How Can Knowing You Have a Terminal Illness Be Helpful?

Knowing you or a loved one has a terminal illness is often helpful because people who are informed about their prognosis can make informed decisions about their care. Although not everyone chooses to participate in care decisions in this way, knowing that their illness is progressing can help a person living with cancer or heart disease decide what therapies to pursue or decline, or when to transition from curative to comfort care. An accurate prognosis also gives a terminally ill person an opportunity to get their affairs in order, to make memories with loved ones and to say goodbye. 

Unfortunately, however, some patients never get the kind of information they need to make informed choices about their care as they approach the end of life. There are many reasons for this, but one of the most notable is the fragmentation that characterizes health care in the U.S. Patients living with a terminal illness typically have several doctors, including a primary care physician and one or more specialists involved in their care. If they visit an emergency room, they will see an ER doctor, and if they are admitted to the hospital, they’ll be in the care of a hospitalist, and perhaps an intensivist if they are sent to the ICU. With all these different doctors involved, end-of-life conversations sometimes simply don’t occur. 

Another reason why many patients aren’t told their illness is terminal is that doctors are uncomfortable talking to their patients about death. Although medical schools are beginning to teach their students about communicating with patients who are nearing the end of life, as recently as 2016, 88% of medical residents in one teaching hospital said they had no training in end-of-life discussions during their residency, and about half reported no formal training on end of life in medical school. Doctors who have been in practice for many years tend to have even less formal training, and may feel less equipped to discuss end-of-life care. As a result, many patients who are terminally ill are unaware of their prognosis and unprepared when they learn they are about to die. 

With that being said, people living with a serious illness have a right to ask questions of their care team, and many physicians welcome the opportunity to discuss prognosis and goals of care if the patient indicates they want to know more. It may be difficult to broach the subject, and some people may choose not to do so. If you feel you can benefit from more information, feel free to ask your treating physician to schedule a conversation about your values and goals. 

Sources

 “Hospitalisations of patients with cancer in the last stage of life. Reason to improve advance care planning?” National Library of Medicine.  https://pmc.ncbi.nlm.nih.gov/articles/PMC9788226/ 

 “Perspectives on death and dying: a study of resident comfort with End-of-life care”. BMC Medical Education. https://bmcmededuc.biomedcentral.com/articles/10.1186/s12909-016-0819-6 

 “Why many doctors still find it difficult to talk about dying with patients”. National Library of Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC6312518/