Someone should have told you sooner
Maybe that someone was me
Someone should have told you sooner. And maybe that someone was me.
I don’t know the pressure of being a patient, how it feels to be sitting in that plastic orange chair looking up into the face of your care-team. How overwhelming it must be to have medical jargon thrown at you on the rushed days, to hear unfamiliar words spoken hurriedly before you are sent over to the chemo suite for your next treatment. Thinking about it now, I wonder how often you felt pressured into the “next step.”
Your sweet daughter wrote notes every visit — I know she took excellent care of you. From keeping medications straight, to asking the necessary questions, her devotion was evident. Oh, that every person could have such an advocate on their team. But even caregivers can miss signs that the end is drawing near.
So still, you kept fighting.
When I reviewed your chart before our last visit, I knew. This was it. Did you know too?
I suspect not, because your providers are human. And humans are not perfect.
It had been about 2 months since I last saw you — your follow-up visits were with other team-members. But as a team, we let you down.
You were strung along, hoping there were more options. We didn’t want to give up on you. Yet, even though we had options, your body was ready to be done. We should have told you. No matter what the next scan shows, the end is near. And then we should have asked you, “how do you want this to go?”
Because you probably did not want to be seated in those uncomfortable clinic chairs 8 days before your last breath.
Someone should have told you sooner. And maybe that someone was me.
As a provider I want to do all I can to improve and prolong my patient’s lives. But sometimes these outcomes are mutually exclusive. I worked with a doctor who did not believe in giving any chemotherapy when a patient was within 30 days of dying (or at least estimated to be). I have adopted this perspective. Because in most cases, what is the point? Quantity is no longer an option, only quality.
Many individuals with cancer feel pressured by their team to fight to the end. They need to be reminded that there are other options. And ideally, this discussion should come long before that 30-day mark.
What are the goals of treatment — curative versus palliative — and how does that affect your decisions? When treatment is started, what are your priorities? It is okay to change them as we go. When the side effects accumulate, do you want to push through or pull back? How much pain is too much for you? Do you want to try and make it to your daughter’s wedding or focus on enjoying the last few weeks in peace with your family?
Someone should bring this up sooner. And that someone is me.
So for you, I muster up the courage to say it now.
We do not need to wait for that re-staging scan scheduled next week, there are multiple signs that your cancer is growing. We have talked before — I know you don’t want anymore chemotherapy. Let’s focus on your comfort.
You agree and ask for a hug.
As I bend over your thin, lanky frame you hold up a hand to stop me. “No, I want to stand first.” A proper hug. One of the few real goodbyes I have had up to this point in my career — I will treasure it always.
It was as if you needed this permission to rest, because 8 days later you passed away.
I read your obituary and looked at pictures of your wife and daughters loving on you through the years. I pray they find peace knowing they loved you well.
And next time, I will bring this up sooner.
Thank you for being here,
Cheyenne
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Beautifully put. I get to work in hospice and palliative and this is the most important conversation.