Friday, March 9, 2012

How To Prevent Your Family From Having To Make Heart-WrenchingDecisions About Your Medical Care

One thing. Before you decide not to read this post I just want to share one thought. I'm a doctor. After years of training I am privileged to be entrusted with some of the deepest wishes of my patients' hearts. My job is to help guide them on a path to healing. Part of healing for me sometimes means that we talk about what happens when they can't care for themselves anymore. This is a difficult conversation to have with a 20 year old. Yes, that's right, you heard me. I said a 20 year old. Why? Well life happens. Car accidents & cancer effect all of us--no matter what our age.

Whether we are 25 or 85, the greatest gift we can give the ones we love is to clearly communicate our wishes for end of life care. By choosing to be brave and confront this often scary topic (even if you are young & vibrant & can't imagine ever being near that situation anytime soon), you remove a HUGE burden off the shoulders of your parents, children and spouse. By being clear and putting your wishes in writing, by sharing them with your family, you are showing them how much you love them and how much you want to protect them from making an impossible choice in an emotional, stressful situation.

I work in rehab--part of my patient population are the traumatic brain injury and spinal cord injury patients. They are often young and healthy before an unexpected event irrevocably changes their life. This sounds sad but most of the time it isn't as sad as it sounds from my position as a rehab doc. We don't focus on how "sad" their life is now. That is a waste of time and actually, not true as so many of my patients go on from rehab to live very vibrant lives despite their injury. I absolutely love what I do and find these patients SO inspiring! But there are some sad parts about caring for these folks. The worst is when patients are so impaired that the decision making falls to their family members and those family members are upset & under enormous stress because they don't know what the patient would have wanted!

Having a written medical directive massively reduces that stress!

As for me, I don't give myself a pass on this conversation even though I'm pretty young and healthy. My husband and I have talked about it a lot and although it seems morbid, just knowing that if something awful happens I'm prepared and so is he--let me tell you, it's a relief.

A few days ago the Healthy Librarian posted an outstanding article on her Facebook page. Here is the link: It talked about why us doctors choose end of life plans that are often different than what our patients' choose. It's because we see what "doing everything" really looks like--and for many of us, it isn't the type of exit we'd like and when codes are run for long periods of time (CPR, defibrillation etc) we know that brain injury is a very likely outcome, even if our heart starts again. So as we age or if we become ill, we really start to think about how to design our directives well so they are clear!

For a long time it was hard for me to imagine how someone outside the medical profession would know how to write a clear advanced directive because there are so many things to consider (from tube feeding to breathing mechanisms)! Luckily for all of us (physician or not), this year I found an excellent form to refer my patients to:

The "Five Wishes" document was designed by Jim Towey who worked with Mother Teresa for twelve years in Hospice case and wanted to find a better way for patients to communicate their wishes. I'm not a lawyer so I'm not sure of the legal aspects of the document but I love the way it is designed! It is clear, specific and encompasses SO much in a concise, organized way. Take a look!

Do this today--what a major act of love on your part to be prepared!

Do it even though your think everyone "knows what you want."

You'll feel good about choosing to be kind and protective of those you love.

And best of all, you can take comfort that you won't be causing your family any potential fighting and broken relationships over decisions you needed to make a long time before something bad happened!

Thank you!

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  1. Thank you for sharing the 5 Wishes document. My printer is broken, but I'm going to print it out tomorrow at work. I've been talking about doing this, but never got around to it. Tomorrow is the day. Thanks again.

    1. Thank you Anonymous! I'm so glad you are going to seize the moment to do this now--it will give you such peace of mind!! Great job making a courageous and clear statement committing to do it!!

  2. I think pulling the plug after a severe head injury was the hardest thing I ever did with my little girl (bike/car accident). However, when I see my cousin and his wife with their vegetable son (gunshot to the head), I'm grateful my beautiful girl didn't live through her head injury to be quadraphonic, nearly blind and deaf, and totally unable to do anything but sit in a wheelchair. They saved him alright but for what?

    1. Kate thank you so much for sharing your story about your precious little girl. I'm certain that the decision you made was the right one because of your peace with it. It's important that people think through these decisions and it sounds like you really did a beautiful job of honoring her by anticipating what she would have wanted out of her life. It is hard for me sometimes to see the extent of medical intervention in my patients without noticeable functional benefit to the patient. It can be heartbreaking to live daily hoping for your child to miraculously return to the way they were before the accident if through modern medicine they are able to survive. It is one of the hardest parts of my job. Each person and each parent is different--these decisions are very individual and I respect & support that individuality. I think it is very courageous of you to share that story in the comments today and we are all so grateful.

  3. Do you have a link to the Healthy Librarian's article?

    1. Hey Christy--I'm sorry--I'm writing my posts this week on my iPhone mobile app since I'm at a conference and have had some issues getting my links up--I'll add the link in the body of the post above. Thanks for pointing that out! Can you access the link above?:-)

    2. Dr. Cat,

      Yes, I can access the article with copy and paste. Thank you! Enjoy your conference.


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