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Can We Choose NOT to Treat an Illness?

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Can We Choose NOT to Treat an Illness?

By Kira Reginato

If you have a loved one with dementia, you likely live on the unpredictable roller coaster of caregiving demands. When things take a turn for the worst, how do you honor your loved ones wishes and refuse care for them, in a healthcare system that treats everything?

I recently worked with a family whose father has moderate dementia. He became ill but couldn’t judge the severity of his condition because of his confusion. His symptoms became life-threatening. Even though his family says they are okay if he dies (because he doesn’t want to live with advancing dementia that has vanquished his quality of life) they did what any family would do: took Dad to the emergency room.

He went from the emergency room to the Intensive Care Unit (ICU), where his dementia left him so disoriented that his hands had to be restrained because he was taking out his IVs and catheter.

Without treatment, he may have died. What would have happened if, when his family learned of the gravity of the situation, declined antibiotics and blood transfusions and oxygen, etc. and let natural death occur? That’s hard to do in our medical system, where every effort is made to stop death. It’s uncommon for the doctors to suggest NOT treating a patient since they are in the business of saving lives.

But, what if we decide NOT to treat an illness, especially when a person is okay with dying? Dad’s wishes were to pass with whatever dignity was left, but the family probably would have felt guilty. And, declining treatment when we’re sick is against the culture of our medical system and comes with personal emotional impact. Family members often disagree under a crisis situation like this.

Family members and patients don’t even know how how to opt out of care. Hospital staff doesn’t often talk about this so thousands of dollars are spent on hospital and long term care, with hours upon hours of worry and heartache for families as their loved one continues to decline.

In this case, Dad was moved to a skilled nursing facility for rehabilitation. Hours upon hours were lost from jobs while Dad’s family stayed with him through every step of his hospitalization and rehab stay, coordinating daily changes and advocating for him when he could not advocate for himself. Now the family is faced with moving him into a memory care community or having him go home with 24-hour care.

Unless people pass away in their sleep at home, they usually become part of our medical system. In fact, Medicare states that the last two years are when the bulk of Medicare dollars are spent on a recipient, often on care they don’t even want!

How does a family accept a relative dying “on their watch,” even though they know the person they love no longer wants to be helpless in a life with advanced dementia?

Is it possible for us to do less, which allows our family member to die (when they are ready), even though medical intervention can stop it from happening? This weighty question is being asked more often as medical technology advances and longevity increases.

You may have to answer this question for a loved one, and for yourself, in your lifetime. Declining treatment for a loved one who has an Advance Care Directive, that states their health care wishes if they have dementia, is an option few think about. Yet, if we live to 85, it’s estimated that half of us will suffer from dementia. We have to plan and talk about it while we are mentally and physically healthy.

Right now, while you are reading this article and contemplating your own thoughts on end-of-life care, is the time to write down your wishes. Don’t just appoint someone power of attorney for health care, making YOUR life and death decisions someone else’s responsibility. Consider writing down what you might want if you ever face dementia. It will make it easier for your family and power of attorney if they ever have to help guide treatment options.

Part of healthy aging can be considering the consequences of failing mental and physical heath in the future. 

An idea: add information to your Advance Health Care Directive. You can write simple questions and your answers to them, using the sentences below as an example and guide. Feel free to word this any way you want and check contents with an attorney. (NOTE: this is not legal language, just a statement you can add to a legal document you prepare). 

Here’s an example: If I ever lose my quality of life to dementia, I have written down that it’s okay for my power of attorney to withhold simple treatments like antibiotics if I have an infection. If I don’t have dementia, I can opt for any cures and treatments I want. 

I have seen the awful quality of life for many people with dementia so if I’m in that boat, I’m okay with dying from an untreated ailment. You may disagree, and that’s okay.  

I have written down and spoken to my health care agents that if I have a urinary tract infection or pneumonia, and antibiotics could clear it up, I don’t want them administered. I am okay with dying under these circumstances. My health care agents will know that even though my life could be prolonged, it’s not the life I want to live and it’s not the burden I want to put on my family. 

This may seem radical, but the choice is yours. You get to put down what treatments you want or don’t want if you have dementia. 

What about the new Medical Aid in Dying Law? You can’t use it if you have dementia. You have to rely on others to make medical decisions for you, and aid in dying CANNOT be one of them. 

We all deserve to leave this world in a way that honors the life we’ve led and impact we made. Dementia can quickly diminish our quality of life and how we want to be remembered in our final days. Decide for yourself if you’d like to add dementia-specific care guidance to your Advance Directive.

Visit Callkira.com/AHCD today to download a copy of a form you can use.