The document that is often most difficult for my clients to sign is what many people call a living will. It’s known by different names in different states. For example, in Texas, it’s called a Directive to Physicians and Family or Surrogates. In North Carolina, it’s known as an Advance Directive for a Natural Death.
Whatever it’s called, the document forces you to consider the possibility that you may one day be lying unconscious in a hospital room with no hope of recovery, and puts you in the position of dictating to your loved ones how and when you want life sustaining treatment to end.
Thinking about issues like this can leave anyone feeling depressed.
What Are Your End Of Life Wishes?
Many people agree that they would not want to be kept alive by artificial means if they are significantly brain damaged and and have no meaningul chance of recovery; however, the circumstances are not always black and white.
For example, consider the story of Shelli Eldredge , who slipped into a coma after suffering a fractured skull and brain injury in a moped accident. Doctor’s did not expect her to recover and one even suggested terminating life support. But her husband declined. And it’s a good thing. A month later, Shelli started showing signs of life and a few days later, she was talking, moving and well enough to leave the hospital. Besides some difficulty walking, which is improving with physical therapy, she’s able to live a normal life.
Shelli Eldredge’s recovery was remarkable, but not every story endds that way. I read an article recently about Edwarda O’Bara, who had slipped into a coma when she was 16 years old. Her parents cared for her in their home and fed her through a feeding tube until they died. At that point, her sister took over her care. In all, she spent 42 years in a coma before she died.
As I read Edwarda O’Bara’s story, I wondered what decisions she would have made.
What a Living Will Actually Does
A living will is a document allows you to instruct your physicians to administer, withdraw or withhold artificial, life-sustaining treatment if you are diagnosed with a terminal or irreversible condition and are you unable to make your own health care decisions.
You get to decide whether you want doctors to withhold all treatment other than those required to keep you comfortable, or in the alternative, whether you would like to be kept alive in your condition using available life-sustaining treatment.
Personalizing your Living Will
In addition to indicating whether you would like to discontinue available life-sustaining treatment, you can also personalize the living will to reflect your unique circumstances.
For example, if you decide that you want life support terminated if you have a terminal condition and are not expected to recover, you can still request pain medication to keep you comfortable. You can also ask that you spend your last days at home, if at all possible without unduly burdening your family.
Why Sign a Living Will
Although signing living will is difficult, there are many reasons to sign one. Obviously, a living will lets you specify your end of life decisions and puts you in control of what life-sustaining treatment you receive.
For example, as I read Edwarda Obara’s story, I realized I wouldn’t want to live like that. I wouldn’t want my family to give up on me too soon. Like Shelli Eldredge’s family, I would want them to give me every possible chance to recover. But if the circumstances were hopeless and I would never be able to live a meaningful life, I wouldn’t want to be kept alive artificially in an unconscious state for decades.
This is especially so in light of a study suggesting that some people in vegetative states are in a conscious state. I can’t imagine being conscious and yet trapped in a body that can’t move or communicate for a lifetime.
Signing a living will also relieves your family of the burden of having to make that choice on their own. In the event family may disagree about how to proceed, having a living will can also prevent any conflict that may arise.
Making your decision
Deciding when and under what circumstances life-sustaining treatment should be terminated is a deeply personal one. Before making their decision, I recommend that my clients talk to people they trust, such as their family members, physicians and clergy.
What often comforts my clients is that a living will can be changed if you later change your mind. You remain in control as long as you are able to make your own medical decisions. For example, if you’re diagnosed with cancer or ALS, your doctor cannot deny you treatment options you want just because you’ve signed a living will.
If you change your mind at any time, you can revoke it and sign a new living will that is more in line with your new wishes.
