“Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.” Isaac Asimov (1920-1992)
“No heroics! If I’m on life support and not expected to recover, just let me go.” This proclamation, coupled with “My family knows what I want” are common reactions when hearing stories about individuals like Terri Schiavo left on life support for years. Both statements are inadequate to guide loved ones in making life-sustaining treatment decisions on your behalf, and demonstrate an unwillingness to be responsible for your own future. Honor My Wishes (HMW), an end of life organization advocating for Dignity, Security and Peace at Life’s End believes all adults should have an Advance Directive to cover the troublesome transition from life to death.
You may believe this issue is addressed by a Living Will, also called a Health Care Directive to Physicians. Unfortunately a Living Will/Directive has been demonstrated to be ineffective. There are many reasons, but in general it does not address the circumstances under which most of us will die. A Health Care Power of Attorney naming a trusted person to act as your Agent is the more powerful and effective Advance Directive for medical care treatment. Your doctor will always consult you first regarding decisions, but since statistically 50% of dying patients cannot speak for themselves, it is wise to designate an Agent. This document gives your Agent authority to make medical decisions if you can’t, so be thoughtful about selecting an Agent.
HMW has created a comprehensive end of life resource guidebook that includes a Health Care Power of Attorney, with tools and instructions for completing it. We are a non-profit organization staffed entirely by volunteers, so donations are tax deductible and are welcomed. HMW also encourages you to write a personal letter to loved ones describing what values and beliefs are important in making life-sustaining treatment choices. Imagine how much anxiety could be relieved and conflict avoided by such a letter expressing support of your Agent, and love for your family and friends.
The medical power of attorney and letter are only as good as the conversations you have with your Agent. It is important to have conversations with your Agent about the kind of care you would want and what an acceptable standard of living is for you. Information about Advance Directives generally and other important topics are available in the HMW guidebook and through the National Hospice and Palliative Care Organization at www.nhpco.org.
Discussions around specific scenarios help define personal values and goals. It is easy to recognize CPR or a respirator as life-sustaining treatments, but don’t overlook surgery or even antibiotics. For example, what if you suffer from advanced Alzheimer’s and cannot recognize anyone or anything, and suddenly have a cancer treatable by surgery. Would you want loved ones to do the surgery and extend your life by 5-8 years, or not do the surgery, admit you on hospice to manage your pain and symptoms, and allow the cancer to take your life naturally in 6 – 18 months?
What if you have an advanced life-threatening illness, are in a lot of pain, expected not to live beyond another month or so, and you develop pneumonia? Would you want to be treated with antibiotics, or allowed to die from the pneumonia, a death historically referred to as the ‘Old Man’s Friend’ because of its merciful end?
The Dignity section of the HMW guidebook will help you with all these issues and more. Your original Advance Directive can be retained by you, your doctor or your Agent. The next article - Security - explores the legal and financial documents you should consider, and useful organizational tools.
In 2008, my husband became critically ill following surgeries. After 4 long unresponsive months on a ventilator, I was faced with the very real and difficult decision of whether to continue life support. Luckily for me, having been active in Honor My Wishes for several years, we had talked about end of life issues. Several years earlier we both had our Advance Directives filled out, signed and witnessed. Quality of life, not quantity, was important to him. Though the decision was difficult and painful, discontinuing life support was the right decision.
Nancy (McCormack) Wik