Living Will or Will to Live?

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Living Will VS Will To Live

It is every person’s right to control his or her own body including the right to choose medical care, medications and the right to determine how one will be treated if one is incapable of voicing an opinion.  Of course most people do not want to go on living as helpless victims of medical control after they lose the capacity to make decisions.  This prospect fills us with dread and can be an unconscionable invasion of privacy.  The “Living Will” appeared on the scene to calm that fear.

 However, the primary danger of living wills lies in the fact that it is usually signed long before the person knows when he or she will be incapacitated or what the circumstances will be.  Some people feel they would not want to live having to use a wheel chair or with a brain injury or loss of any of their five senses ect.  But, technology has progressed by enormous bounds to assist with any disability.  At the time of signing the “Living Will” most people aren’t even aware of how many ways technology can help them live more fully, therefore, not fully aware of their potential to a life of quality.   “Living Wills’ attempt to predict the future so they are by nature broad and generalized.

Why is it important to be specific?

You might be treated by someone who thinks you cannot be saved when you could. There is great danger that a vague description of what you do not want could be misunderstood or distorted so as to deny you treatment that you do want. There are those in the medical profession as well as the courts, not to mention the HMO’s, that are so committed to the quality of life ethic that some may think patients with severe disabilities  would prefer not to receive either life-saving measures or nutrition and hydration.

What are the options?

There are a couple actually.  One is a Durable Power of Attorney for Health Care.  This is a document you can delegate to a trusted friend or a relative to become your agent for any health care decisions you are unable to make including medications as well as treatment procedures.  It is much more specific than a Living Will and has areas where you can put in writing what you DO want.

Another is Missouri’s “Will to Live” document.  This document starts from the principle that the presumption should be for life.  However, it does provide a space for “Special Conditions” selected by you where you can state when to cease treatment and how.  It will guarantee that you will receive the food and water you need should you become incapacitated, while allowing you to decide and state what you might consider “extraordinary care”.  Food and water are not medical treatment or machines but basic care necessities even if given by tubes, intravenously or other means.

Medications should be given to alleviate pain not to shorten life.

Is it the law?

Don’t assume the “Living Will” or “Health Care Directive” or “Will to Live” documents are required by law and must be on file with a doctor or hospital before any procedure.  While it is a good idea to do so, it is certainly not required by law.  This misconception probably comes from the Patients Self-Determination Act, a bill that was passed in Congress in 1991.  It says that facilities receiving federal Medicaid or Medicare funds (and that means almost all hospitals) must give adult patients, at the time of admission, written information on the “advance directives” that are legally available.  In practice this federal requirement can make people think they must have an “advance directive”.  They may even feel pressured to sign a “living will” or “durable power of attorney” general form that could have the effect of stopping medical care and treatment – even medical care and treatment that could save their lives!  Be ahead of the game and fill out your form of choice with the specific things you want or don’t want before the need arises.

 Some Tips:

  • Be sure you understand the terms used in your health directive document.  A Disability Advocate at SCIL will be happy to help you read through it and explain areas where you are confused.
  • Make sure that your agent making those life and death decisions for you knows your intentions behind every choice.  Introduce him or her to the advances of technology for people with disabilities so that they have a clear picture of what quality of life is possible.  It is important that they have a broader knowledge of potential than the medical field generally exhibits.
  • Educate your doctor if possible to the endless possibilities available for all disabilities.
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