Advance Directives

TIP OF THE DAY

ADVANCE DIRECTIVES

The following discussion is excerpted from an email newsletter by Larry Spaulding, Legislative Staff Counsel for the Florida ACLU.  It is an important discussion regarding end of life treatment and the Terri Schiavo case.

What are your medical wishes?

During the Florida Senate debate, all parties agreed that if Terri Schiavo had expressed her wishes, in writing, then she could have died with dignity. But she did not. The result was years of litigation which has cost hundreds of thousands of dollars and ripped a family apart. Could this happen to you or your family?

As a competent adult, you have the right to decide to accept or refuse any medical treatment. "Competent" means you understand your condition and the results your decision may have. As long as you are competent, you are the only person who can decide what medical treatment you want and do not want to receive. Your doctors will give you information and advice about the pros and cons of different kinds of treatment, but only you can choose whether to say "yes" or "no." You can say "no" even if the treatment you refuse might keep you alive longer and even if your doctor or your family wants you to have it.

Someday, however, you may become too sick to make your own decisions about your medical care. If that happens, then decisions will have to be made for you. If you have not given any instructions, no one will know what you would have decided. Do you want a guardian ad litem, the courts, or even Governor Jeb Bush to make those decisions for you? If not, you need to make your wishes known, preferably in writing.

The following may help you to understand your rights:

What is an advance directive?

Advance directives are documents signed by a competent person giving direction to healthcare providers about treatment choices in certain circumstances. There are two types of advance directives. A durable power of attorney for healthcare allows you to name an individual to act for you and to carry out your wishes. A living will allows you to state your wishes, in writing, but does not necessarily name a patient advocate.

Why have an advance directive?

Many people have strong feelings about the kind of medical care they would like to receive or refuse in certain circumstances. The Terri Schiavo case makes that abundantly clear.  An advance directive allows you to state clearly your feelings.

What decisions should be considered?

• Who would you like to make medical treatment decisions for you if you become unable to do so?
• How do you feel about ventilators, surgery, resuscitation (CPR), drugs or tube feeding if you were to become terminally ill? If you were unconscious and not likely to wake up? If you were senile? If like Terri Schiavo, you were in a persistent vegetative state?
• What kind of medical treatment would you want if you had a severe stroke or other medical condition that made you dependent on others for all your care?
• What sort of mental, physical, or social abilities are important for you to enjoy living?
• Do you want to receive every treatment your care-givers recommend?

What is a durable power of attorney for healthcare?

It is a legal document that allows you to name an adult to be your advocate and to make healthcare decisions for you. You can pick a family member, friend or any other person you trust, but the person you choose must be willing to serve. A durable power of attorney can be used to accept or refuse any treatment. If you want your patient advocate to be able to refuse any treatment and let you die with dignity, you need to say so specifically in the durable power document. A durable power goes into effect only when you are not able to make decisions for yourself.

Must you have a durable power of attorney for healthcare?

No. You have this option, and no one can require you to have a durable power of attorney. You can make your wishes known by talking with your family or doctors or by writing them down, but unless you have a durable power of attorney, a patient advocate that you selected does not have legal authority to act for you. The factual dispute in the Terri Schiavo case was whether her wishes were orally conveyed to her husband who stated that she did not want extraordinary medical care, or whether she never gave any instructions and would want all medical options available provided to her which is what her parents maintain.

As an aside, suggestions were made during the floor debate in Florida Senate on the Terri Schiavo legislation that only written directives should be recognized in the future. If that should become part of Florida law, then oral directives would no longer be a viable option. Many in the right-to-life movement would like to end recognition of oral directives and would also like to prohibit the withdrawal of food and water as an acceptable end-of-life option. In other words, individuals like Terri Schiavo could not have feeding tubes removed even if they specifically expressed that directive either orally or in writing.

Must you give written instructions about your treatment?

No, it is not necessary under current law. The Terri Schiavo case, however, clearly demonstrates why it is better to do so. You can simply name a patient advocate. But, remember that your advocate can only have life-sustaining care stopped if you say so in your durable power of attorney. It is better to have written instructions because then everyone can read them and understand your wishes. Another option is a "living will" which delineates your healthcare choices and is quite similar in many respects to the durable power of attorney. Or, you can simply make sure your family and care-givers know what you want if you were to get sick. It is vitally important for hospitals and your doctors to understand your wishes otherwise they are inclined not to withhold treatment, if that is your wish, for fear of possible medical malpractice claims or being drawn into a family dispute. Writing them down makes it clear exactly what you want and avoids the tragedy of the Schiavo family. 

Must you make decisions now about your future medical treatment?

No. You do not have to have a durable power of attorney or a living will and you do not have to tell anyone your wishes. You can still make treatment choices while you are competent. If you are no longer competent, but you have made sure your family and care-givers know what you would want, it will be easier to follow your wishes. If you have not made your wishes known to family and care-givers, a court may have to name a guardian ad litem to make decisions for you. That person may or may not do what you would like to have done.

Legal advice is not required. There are lots of excellent forms (particularly for living wills which are generally preferred in Florida) available from different organizations including the Florida Senate (www.floridasenate.gov) and Aging with Dignity (www.agingwithdignity.com). Of course, your attorney can help you prepare a document taylored to your specific wishes.  [Another good source: www.partnershipforcaring.org]

Medical treatment decisions are difficult. It is easy to put them off. Nonetheless, each of us needs to think carefully about our wishes in advance, discuss the options with our family, friends, lawyers, clergy and healthcare professionals, as appropriate, and make plans for our future healthcare needs.

I fully expect the Florida Legislature to entertain legislation in the 2004 regular session to limit the right of individual patient choice where there is no written advance directive, and perhaps to disqualify certain family members in favor of a guardian ad litem in such circumstances.

If there is to be anything positive to be learned from the tragedy of Terri Schiavo, it is that we all have an obligation to ourselves and our families to make our end-of-life healthcare wishes fully known. Let's not procrastinate any longer!