Today’s topic might not be one most people think about until they literally are faced with it. What would I like my death to look like?
When you are faced with a cancer diagnosis, this may be something that crosses your mind. However, for most, it is a fleeting thought. Most people will focus on the treatment part of a cancer journey instead of what might happen if the treatment doesn’t go as planned.
I was faced with a very rare type of cancer when I was diagnosed with medullary thyroid cancer (MTC). One of the biggest negatives of rare cancers is the lack of research. It is understandable. More money will always be put into diseases impacting more people. However, as someone with a rare cancer, the very outdated research that was available to me through my google searches was making my outlook very pessimistic.
Based on what my searches yielded, I was convinced I would not survive 5 years. Let alone survive to see my 10th cancerversary. Granted, most of the information I was able to find, was 10 to 20 years old. In medicine, so much can change in even 5 years, not to mention 20.
Read more about HCP resources for MTC
Faced with all this looming knowledge, I had to think about death. I had to think about my death. What would I want it to look like? What was I willing to try to extend my life? What does quality over quantity look like? What does that look like for me specifically? Which treatments are the ones I would not want to do and for what reasons?
So many things to consider!
My husband and I had many conversations about this topic. It’s not something you ever imagine yourself talking about at 25. I believe that my job as a pediatric intensive care nurse also had an impact on my ultimate vision. Of course, no one can guarantee that the end of my life will look the way I want it to. The most important thing I want to hold onto is a dignified death.
I feel like for many those are big scary words that we have a hard time putting a definition to.
What do I mean by dignified? Let me give you some clarity.
I think I must have said this phrase a hundred times if not more. “Just because we can, does not mean we should”. In my line of work, we struggle to find that fine line sometimes. Often, we only see that we missed the target after debriefing on a specific case.
It sometimes feels like patients are telling us they are done fighting in many ways, but death is never something easy. It is never something acceptable, especially not when the patient is your loved one, or when it’s your patient.
When I get to that point, I hope and pray that I will have the wherewith to make the decision myself. If not, my husbands know my wishes. As mentioned before, we have discussed what I do and do not want. Having seen many patients on extracorporeal membrane oxygenation (ECMO) or receiving resuscitation CPR for the 10th time that day, that is not what I want my family to remember of me.
I believe sometimes as healthcare providers, we forget that a good death is possible. Death isn’t giving up. Choosing to not put oneself through more treatments or accepting when treatment is no longer providing relief, can be such a freeing experience.
The most beautiful passing I have ever been a part of was of a 6-week-old little boy. He was born with a congenital heart defect (CHD). After multiple surgeries and while on ECMO, it was becoming clear that his story would not end the way we all had hoped for.
His parents knew the decision to withdraw care would need to be made in the next 24-48 hours. However, when they came back to the bedside after a medical appointment, they realized just how much he had deteriorated in that short amount of time.
Although it was the hardest decision of their life, they did decide that it was time to let him go. I was so fortunate to be their nurse that particular day. I had never cared for them but those hours together have forged a strong bond.
They were able to hold their son as he was taken off ECMO and passed away peacefully in their arms. The family left while the health care team prepared him for his parents to have more time with their son. Since they had never really held him without any attached tubes and wires, they ask a fellow CHD mom to come and take some pictures of them as a family.
The atmosphere throughout the whole evening was just so peaceful. Of course, there were many tears and so many unanswered questions as these parents gave their son a dignified passing. It was one that was filled with love, tears, and grief but also peace as he transitioned.
That atmosphere is exactly what I hope for when my day comes one day. I would like that kind of sense in the room. My family around me, covered with their love, pain-free, and most of all peaceful.
If you don’t take anything else away from this article, please take away the following. When a patient decides they don’t want to continue treatment, more often than not, they have come to the understanding that their journey is ending. They have spent a lot of time thinking about this decision. They have come to accept it. So please also should accept their decision. It’s one of the hardest ones they ever had to make.
Sometimes, quality is so much more important than quantity. Healthcare providers should listen to their patients and allow them to have the dignified death they are longing for and maybe not a slow death in a hospital bed far away from family.