No One wants to die. This is usually followed by some “inspiring” pabulum; such as the Steve Job quote from his 2003 Stanford graduation address:

“Death is very likely the single best invention of Life. It is Life’s change agent.”

Although few knew he had been diagnosed with pancreatic cancer a few year before. A cancer that he would die from in 2011.

We who work in palliative care should get it through our head, “NO ONE WANTS TO DIE!”.  When we are having a goals of care discussion the number 1 goal is

“I don’t want to have @#$%!…. Cancer, AIDS, Dementia or whatever the terminal illness is.”

I want my patients to be comfortable enough to be able to say this to me.  The reason we don’t often hear this goal expressed is we don’t know what to do with this or say in response. My approach is to embrace this goal.

“I don’t want you to die either!”

It is also clear that I, healthcare, magic bullets cannot stop the illness or death but I can be mad and upset about death too.  I think acceptance of death is overrated.  This is one of the things that turns people off about hospice, too much death acceptance and too many verses of Kum by yah when they are still pissed off.

METUP.ORG is a group started by and for women with metastatic breast cancer that are just not having it any more.  They model themselves on the ACT UP groups that advocated for better treatment for HIV/AIDs in the 1980-90’s.

“In the last 40 years the Metastatic Breast Cancer death toll has not changed significantly. Nor has the mean survival rate of 3 years. We have spent almost half a century trying to fund research for a cure, and what we got instead was pink ribbon campaigns. Our pink ribbon has been singed gray by the memory of those we have lost. It is our turn now. “

Jennie Grimes co-founder of Metup.org

However, I still have to go to work and help people plan for an uncertain future. Lakin and Jacobsen’s article in JAMA Internal Medicine “Softening Our Approach to Discussing Prognosis” addresses the need to be hopeful and realistic with patients. They propose leading with the hope for life.

“I am hoping that you have a long time to live with your heart disease and I am also worried that the time may be short, as short as a few years.”

It is not a perfect solution but a start.

Learn more about loud and pissed off breast cancer advocacy at http://metup.org/

Read Lakin and Jacobsen

Lakin, J. R., & Jacobsen, J. (2018). Softening Our Approach to Discussing Prognosis. JAMA Internal Medicine.

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2715161?guestAccessKey=a5b80784-e2e3-4238-a2af-1faa8652266d&utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jamainternalmedicine&utm_content=olf&utm_term=111918

 

 

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