Monday, January 16, 2012

Public Service Announcement #2

     Brad and I are getting ready to make the 6 1/2 hour drive from Fair Hope back to Rome today. Due to this, and to the fact that my right wrist is threatening to develop a mean case of carpal tunnel syndrome from all the writing I've done lately, I am going to ask you to read a couple of older posts, specifically A Simple Change of Heart, Parts I and II. It's the story of my mother in law, Gwen, and her valiant battle with congestive heart failure. This weekend's visit is the first time we've seen Brad's father, Bob, since Gwen's funeral in August. He still cannot talk about her without tears in his eyes, and it is heart-breaking. There are so many unanswered questions. Why didn't Gwen's cardiologist present hospice as a viable option? How on earth was she deemed an appropriate operative candidate for LVAD (left ventricular assist device) placement in the first place? Why did her surgeon blatantly disregard her living will? What promises were made to her? Why, why, why did she die the way she did?
     The emotion is still raw. As a physician, I am angry with her cardiologist and surgeon: I believe they failed all of us. They were both completely dismissive with me when I urged them to get palliative care involved, prior to Gwen's surgery. Had her doctors done a better job of presenting death with dignity as a tenable option, Gwen could have died in the comfort of her home without the surgery which robbed her of the last few weeks of her life, enjoying her morphine with a glass of red wine. Instead, she died a terrible death in the ICU, covered with burns from Stevens-Johnson syndrome, on dialysis, connected to all the tubes and machines which she'd clearly refused in her living will.
     Bob, Brad and I have spent quite a bit of time the last few days, reliving her illness and death, and it has been healing for all of us. Even if Gwen's LVAD surgery had gone without a hitch, she would have been a slave to that device. We all think it would have have made her unhappy. Gwen was constantly on the go, a caretaker, deeply independent, and she would have hated being limited by that machine or feeling like a burden. I don't believe the LVAD would have bought her much time in the long run.
     Here's public service announcement #2. Please inform yourselves about advance directives and living wills, not just for your loved ones, but for yourselves. You can print the forms on line. Take a few moments to look them over, and think hard about which interventions you'd be willing to accept or reject. Don't wait until it's too late; do it now. Talk with your adult children about this issue, and find out what their preferences are as well. Understand that you have an absolute right to uphold or modify your advance directives/do-not-resuscitate orders, even in the operating room! It's important to know that if you and your family do not discuss this with your surgeon or anesthesiologist beforehand, your end-of-life wishes will probably not be honored. Become your own advocate; don't leave it up to your doctors! Most of us do a pathetic job of guiding our patients through that part of life known as death, and this is a true abomination of our medical education. There are those of us who are working to change this "physician as God" mentality, but progress is painfully slow. As we discovered, less intervention could have meant more quality of life for our sweet Gwen.
A Simple Change of Heart, Part I
A Simple Change of Heart, Part II
What is Palliative Care?
What is Hospice and Palliative Care?
Advance Directive/Living Will Forms
Advance Directives Information

No comments:

Post a Comment