As the case of Terri Schiavo makes painfully clear, when a health crisis strikes, families and physicians are faced with agonizing choices about the treatment and ongoing care of an individual who can no longer share in the decision-making. While we all want to believe the person at our bedside will be someone who knows what we want and loves us enough to honor our wishes, in the emotional pressure cooker of a health crisis, even the most loving families can disagree. Physicians may offer conflicting advice; and government may soon take a role as well. For the sake of your family--and your own peace of mind--the way to insure you have the deciding voice in your own critical care is to leave clear, specific guidelines.
The key to individual choice at the end of life in situations of medicalextremity is one document: The Advance Health Care Directive, outlining whatyou want for yourself. Advance directives can be as simple or as detailed asyou choose. Their primary segments include designation of someone to makehealthcare decisions for you if you should become incapacitated and anoutline of your instructions for that care.
First, you designate an agent or healthcare proxy, formally called "Power ofAttorney for Health Care." Most of us know deep down who we would most trust to direct our care if we could not. If you who want someone other than an immediate family member to manage your care, or if you know family members might disagree, formally naming your choice as healthcare proxy is a crucial element in allowing them to speak for you.
Secondly, in your Advance Directive you outline your wishes about life-sustaining medical treatments such as use of drugs and blood products, dialysis, respirators and surgeries. This is the portion commonly referred to as a "Living Will." You may also state your wishes about prolonging life with food and drink, and about levels of pain control. It's the absence of such a document that has caused years of family anguish in the case of Terri Schiavo and caused similar anguish a few years ago in the case of Nancy Cruzan.
Do you need an attorney to draw up your own advance directive? Not necessarily. Once the forms, available from hospitals, state and local medical associations and online are witnessed and, if required in your state, notarized, they are enforceable.
What you do need is simply to talk. Talk to your doctor, your family, clergy or spiritual advisors, close friends. Admittedly that's not an easy assignment. Most of us share a hesitancy to discuss dying-- our own or anyone else's-- until it's absolutely necessary. But that moment of necessity can come too late. Friends and family brought into such discussions early on are often grateful for the chance to share thoughts and preferences, and may even be encouraged to consider their own end-of-life planning.
Although laws vary from state to state, once your wishes are properly made known providers generally follow their intent. The U.S. Living Will Registry maintains a site on which your document can be stored, accessible to hospitals throughout the country. Strict privacy measures guard this information from anyone else.
Most of us have strong opinions about what we would or would not want if we were suddenly incapacitated, and they may be wildly different from what others would choose on our behalf. Perhaps you would want to donate an organ if it would save a life, but not if it would only be used for research. Perhaps, facing a long and difficult terminal illness, you would want to hasten death by having food and/or water withheld while you are medicated for pain. Perhaps you want to be kept alive in any way possible and for as long as possible, no matter what.
A Georgia physician tells the story of a dying mother begging to have a feeding tube removed while her husband and children were unable to agree about honoring this request. "It was," the doctor says, "the most difficult death I have attended in years. When she was gone, the family was hopelessly estranged."