“The two doctors talked about the tube they wanted to connect….put tubes down the throat. I thought: poke a hole in me?…the tube scared me. I didn’t know nothing about this tube …I thought I’d rather live like this and wait for a lung transplant than with a tube in me…and I said no.”
-Bill, Chronic Obstructive Pulmonary Disease (COPD) patient

More than 10,000 people die of COPD each year. Compared to people with cancer, hospitalized patients with COPD are more likely to have not discussed end of life care with their health care team. They are more likely to receive life support and to die in intensive care units, leaving their families at five times more risk of suffering from post-traumatic stress disorder. While there, they often receive treatments of little or no value to them, such as CPR.

It doesn’t have to be this way.

COPD is not a sudden-onset illness, and health care teams typically have ample opportunity to discuss options for end of life care with patients and their families while they are still capable of speaking for themselves – not just once, but often, as their condition evolves.

These patient-centered discussions not only inform our COPD patients and their families, they help us better understand tolerance levels, fears and wishes for end of life care. They can become a foundation for an advance care plan that guides health care teams and provides the substitute decision maker with support during a stressful time.

End of life care discussions should always take into account patient readiness and anticipated prognosis over the course of the condition. In COPD patients, the conversation – and the decisions that come from them – may evolve significantly over time.

We can’t reverse the effects of COPD, nor can we cure it. What we can do is give patients like Bill the knowledge they need to participate in their care for a quality end of life experience at every stage of illness. It’s time to give our patients a voice in end of life care.

Dr. Donna Goodridge is a professor with the College of Nursing at the University of Saskatchewan.