Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

A Most Shocking Decision

There are times when I read a story and am reminded of sitting in support group meetings listening to the stories of those facing a life-threatening illness.  The decision that catches the most people off-guard is when someone in the group announces that they aren’t going to take treatment for their illness.  The roar in the room is amazing and the buzz is disconcerting.  Everyone in the group challenges the individual about going for treatment, but there is one thing we always need to remember…Not taking treatment is a choice.  We live in a universe where free will still presides and if someone doesn’t want treatment; they don’t have to take treatment.

The story I read was in a book about those with illness who write books about having an illness.  The individual was diagnosed with bladder cancer and after hearing the treatment options decides to pass.  His decision is based on two factors: he didn’t get truthful information from the doctor about the prognosis of the treatment, and his desire was to be as present throughout his illness and confront the illness on his own terms.  At the end this also meant his refusal of pain medication because he felt that it left him out of touch and his goal was to be present till the end.

Why is refusing treatment so shocking?  We’re inclined to believe that life is precious and everyone wants to extend their life no matter the conditions.  The reality is that there are many people who place quality of life over quantity of life; so extending their life through treatment that will diminish their capacity and leave the me somewhat disabled isn’t really an option.  Choice is tricky.  We seem to believe that we have a group-think when it comes to longevity; that’s not true.  Our decisions about life and death are as unique as the number of people in the world.

We shouldn’t be judging those who don’t choose to engage in a treatment regimen simply because it doesn’t align with our world view.  We need to honor these people for their bravery in having a conviction and sticking to it.   It may not be your cup of tea, and that’s why you get to make a different choice.

Posted in Having a Voice in Healthcare

Breakout!

When you hear the word “breakout” it may conjure up scaling prison walls in search of freedom.  I find as I talk to more and more people diagnosed with a chronic or life-threatening illness that the “breakout” is not about escaping, but figuring out how to deal with being backed into a corner.

Let’s face it, once the diagnosis is given the medical community feels that the steamroller is the most useful tool in getting you to accept their diagnosis and treatment plan.  The big question is that to empower ourselves as patients it’s crucial that we ask questions and begin what could be one of the most important conversations of your life.

The medical community isn’t different from any other profession, the only difference is that with doctors the decisions could be a matter of life and death.  Whether it’s about a diagnosis or treatment, doctors have to deal with something called, “cognitive literature diagnostic momentum”.  They attach themselves to a diagnosis (or treatment) and over time it gets stickier and stickier.  Like a dog with a bone it may be difficult or near impossible to move the provider from their stance on your care.

Surprise!  The truth is that it’s your decision.  What we often forget is that the treatment regimen is up to us.  We have to remember that for some, no treatment is a treatment option.  I know that sounds crazy, but we’re talking about free will, not having something shoved down your throat.  Yes Virginia, no treatment is an option.  It’s not about going rogue, it’s about knowing in your soul what you’re capable of handling or willing to handle.  I repeatedly comment about my own father wishing that when the day comes (many years in the future) that he dies that he goes with one big heart attack in his sleep because he’s already made his wishes known that treatment will never happen.  I know it may be a shock, but that’s his decision.

Keep yourself out of the corner and keep your physical, emotional, and spiritual options out in the open.  It’s important to stay in the question always wondering what options still exist and what options might you be willing to try?  It’s also important that communication between you and your doctor be open and honest so you don’t ever feel backed into a corner.