The Power of a Living Will
My father decided early in his long term care experience that he wanted to die naturally. He did not want to miss a minute of his long and happy life, but he also did not want to over stay his time. He made his wishes clear to his family in conversations and in writing. While I have been grieving since his death on May 30, I have taken comfort in knowing his wishes were carried out.
I am often asked: “I am concerned about ending life well if I am no longer able to make my own decisions. What is the difference between a living will, a healthcare power of attorney, an advance care plan, an appointment of healthcare agent and advance directives?” Here is a brief historical summary of the terms used in medical decision making.
In 1976 Karen Ann Quinlan overdosed on drugs and lapsed into a persistent vegetative state. She was kept alive on a ventilator. Her parents wanted to take her off life support; the hospital refused. Karen was unable to say what she wanted. The New Jersey Supreme Court ruled in her parents’ favor. She died in 1985. In response to new medical technology that could extend life indefinitely, a legal document known as a living will developed in the 1980s to allow an individual to address end of life wishes. It simply said, “If I have a terminal condition and my death is imminent, let me die naturally, don’t keep me alive artificially.” Initially, the living will addressed only this ultimate life or death decision.
In 1990 Teresa Schiavo sustained brain damage after a cardiac arrest and lapsed into a persistent vegetative state. In 1998 Terri’s husband asked the Florida court for permission to remove her feeding tube. Her parents opposed the removal. There was no clear rule as to who (spouse or parents) had the authority to make a decision for Terri. In 2005 after 14 court appeals the feeding tube was removed and Terri died about two weeks later. During the time Terri was on life support, a second generation of health care decision making document called a healthcare power of attorney evolved to allow us to designate the person we want to make health care decisions for us if we are unable to make decisions for ourselves. The healthcare POA also extended medical decision making beyond the “dying naturally” decision to include all health care decisions.
For a period of time, many people had two healthcare documents: a living will and a healthcare POA. In 2004, Tennessee adopted the Health Care Decisions Act which added the advance care plan, a single document combining the “what” of the living will and the “who” of the healthcare POA. The new law introduced the concept of acceptable or unacceptable quality of life to the decision making process; authorized more detailed decision making; authorized an appointment of health care agent as a simpler way to say “this is the person I want to make decisions for me if I am unable and I trust them to make whatever decision they think is best for me”; and introduced the term advance directives to include all of the written instructions a person gives regarding future healthcare, whether in a living will, healthcare POA, advanced care plan or some other document.
If you have a living will or a healthcare POA, it is forever valid (many attorneys still prepare these documents). If you have made no advance directives, do it now! In my experience, clients under age 40 choose the appointment of healthcare agent (they still think they will live forever), clients over age 70 choose the advance care plan (they know their time is coming), and those between 40 and 70 may choose one or the other.