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Making End-Of-Life Care Decisions Is About As Real As It Gets

We have seen friends reduced to human vegetables being carted off for more chemotherapy. Why?

My husband fell seriously ill last May and after a month in the hospital was discharged home to my care. Nothing ― nothing ― has been the same since then. He receives kidney dialysis three times a week as an outpatient and feels exhausted most of the rest of the time. His kidneys are not expected to recover and since he is ineligible for a transplant, dialysis is necessary to keep him alive. It is clearly hard on his body.

Which is how we came to update his advance healthcare directive ― the legal document that sets forth what sorts of medical interventions he wants should he become unable to speak for himself. As responsible adults and parents, we actually already had medical directives signed and on file with our attorney. But when the doctor treating you suggests that they be reviewed to make sure everything is as it should be, they suddenly look different. The abstract just got real.

We are grownups. We have two teenagers to think about. We accept that nobody lives forever. We know what our insurance will cover and not cover and what an extended stay in a nursing home without long-term care insurance would do to us financially. We also have seen enough people whose deaths were painful and drawn-out to have said a million times “that’s not for me.” When people say things like “where there’s life, there’s hope,” we just shake our heads and wonder what planet they are from. Hope shouldn’t have a ventilator attached.

We have seen friends reduced to human vegetables being carted off for more chemotherapy. We know someone who actually went for chemo on the morning of her death.

My husband regularly sees people brought to his dialysis center on gurneys from nursing homes. Their eyes are always closed and they don’t speak a word, yet their blood is pumped from their limp bodies, washed, and returned.

That is not, and will not be, my husband. At the moment, he is driving himself to and from dialysis and stopping at the grocery store on the way home to pick up things I need for dinner. But we understand that that can, and likely will, change. Nobody says when.

We understand that the goal of medicine today is to keep you alive. A cynic might say that as long as the patient is alive, there are billable procedures to be performed. Dead patients aren’t paying customers. I’m not that cynical, but I also don’t believe that most doctors know how to talk to families or patients about end-of-life care and how to plan for it. My husband’s doctor seemed genuinely shocked when I asked if he could just ignore the restrictive renal diet and just eat what he wants. I was serious. Why not? His kidneys have failed and aren’t coming back. How is a baked potato (on the forbidden list) going to make that any worse?

So yeah, my husband and I spent hours going through his directive. We understand the importance of staying calm while we discuss these things. We talk to our kids about quality of life and the hard choices people sometimes have to make. We talk endlessly about living life to the fullest in the gaps between treatments. 

Yep, we understand it all. But understanding it doesn’t make it any less hard on our hearts. I want to put my hands over my ears and not listen. I squeeze my eyes shut tight so I don’t have to see what lies ahead for us. But I know that as the person responsible for making sure his wishes are adhered to, the one thing I can’t do is shut my mouth. I spend a lot of time praying I have the strength to do right by him when the time comes. In the meantime, I feel like a bug trapped in the spider’s web knowing that her fate is to be swallowed up soon ―  and there is little I can do to stop that from happening. 

Free advanced medical directive forms are available online. They are state specific..

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