A few weeks back the US House of Representatives passed a “Right to Try” Law. In all honesty, I don’t completely understand the need for this when compassionate use already exists, but that is a topic for another day. The discussions and news stories I heard surrounding this law got me contemplating, why isn’t it ok to die? As an oncology nurse for many years, I have seen countless people fight their cancer till the bitter end. They endured treatment after painful and debilitating treatment, often spending their last months shuttling back and forth: from the hospital to radiology tests to doctors visits.
What strikes me as worse is that our culture makes them feel that they “have to” continue this “battle.” This metaphor, cancer as a battle or that we are at war, is also challenging. If you “lose”, did you somehow not “fight” hard enough? If a person decides to stop treatment and work on their bucket list or spend time with their family and friends, we question if they are depressed or in their right mind. I’d argue that maybe their minds are clearer than most: wanting to focus on quality of life, as opposed to quantity of life makes perfect sense to me.
Don’t get me wrong; I realize I have not been in those shoes. Maybe I would do everything possible to sustain my life. But, I’d like to think I’ve seen enough to know how important that quality of life is. While my young cousin was dealing with a terminal cancer, she struggled to find a balance between the care she needed, wanting to do everything possible to be there for her daughter- and being able to make memories and spend quality time with her daughter. It seemed like the scale almost always tipped in the wrong direction for her.
I have also seen people decide to give cancer treatment the bird and live life in amazing ways. I cared for a woman who spent the last 3 months of her life sailing around the Caribbean with her husband of 1 year. They made amazing memories that he will cherish forever, but many people thought it was a crazy decision on her part.
April 16th is National Healthcare Decisions Day. This day is meant to encourage people to talk about their end of life wishes BEFORE a crisis. I truly feel that much of the “fight on” death denying culture is due to a lack of these conversations. In oncology, we often have the “luxury” to talk about wishes while the patient is still reasonably healthy. But quite often, we don’t. Perhaps because our culture thinks talking about death is taboo or will take away a patient’s hope. Perhaps patients fear that when their team brings up death it means we aren’t going to do everything to help them survive. I’d argue these conversations help us help them survive better, for however long they can.
In the end, treatment and end of life wishes are VERY personal. There is no one size fits all in this space. I just hope as a culture we can talk more openly, accept people’s wishes, and support them in making these wishes a reality. I hope we can consider living life passionately in the time a person has left as heroic as someone getting every treatment in the book until the end.
Start the discussion with your friends and family at The Conversation Project.