Many of my estate-planning clients grasp the importance of wills, living trusts and financial powers of attorney but feel unprepared when the conversation turns to quality-of-life for their final years.
In the 1970s and again in the 1990s, the nation became engrossed with end-of-life issues when the media grabbed hold of the stories of Karen Ann Quinlan and, later, Terri Schiavo.
Quinlan experienced a brain injury after consuming drugs and alcohol at a party. Her parents requested the hospital stop active care when she slipped into a vegetative state for several months without improvement. The hospital refused, but the courts eventually allowed removal of the ventilator.
Terri Schiavo’s parents battled for continued life support measures for almost seven years after their daughter went into cardiac arrest and suffered massive brain damage due to lack of oxygen. She was diagnosed as being in a persistent vegetative state, and eventually the courts ruled in favor of her husband, who argued for removal of the feeding tube that was keeping her alive.
The Quinlan case gave momentum to “living wills,” and the Schiavo case highlights the importance of designating the person you want making care decisions for you if you can’t speak for yourself.
A living will documents what kinds of medical treatments you would or would not want at the end of life. It is estimated that nearly 90 percent of us have heard of a living will, and 70 percent of us have thought about end-of-life decisions but only 25 percent to 30 percent of us have put the appropriate documentation together.
Living wills are often silent on who you want to be your health care advocate. In California and most of the nation, the living will has evolved into an “advanced health care directive,” which appoints your health care surrogate and outlines your end-of-life treatment wishes.
But with continued advances in science and technology, some of your attempts to articulate treatment directions will be inadequate, and it could fall to your agent to translate your preferences and values in unforeseen circumstances. However, as medical science has progressed, innovative approaches have evolved to provide meaningful health care guidance:
The “Five Wishes” living will delves into personal, emotional and spiritual needs as well as medical wishes. It addresses (1) choice of health care agents, (2) treatment preferences, (3) comfort wishes, (4) how you want people to treat you, and (5) what you want your loved ones to know.
At gowish.org, consumers can find the GoWish game of 40 playing cards that can help you find words to articulate what is important to you at the end of life. Categorize the cards as very important, somewhat important or not important, stimulating meaningful dialogue that can be shared with family, health care surrogates, doctors and attorneys. Other excellent resources can be found at the National Healthcare Decision Day website, nhdd.org.
The key is selecting a person who is willing to act, listen and honor your needs, wishes and values, and is able to make difficult choices in crisis. But in addition to having the person and documents in place, you need to have the conversations that give context to nuanced decisions your agent must make when faced with uncertain medical choices.
When Albert and Frances Lundberg fled the Dust Bowl-ravaged cornfields of Nebraska in 1937 to settle in the greener pastures of the northern Sacramento Valley, they did so with hope for the future.