Given the debacle playing out in the Florida courts surrounding Terri Schindler-Schiavo, husbands and wives throughout the United States would be well-advised to take a hard look at who will make their health care decisions should they become incapacitated and their partner become involved with another person or develop another conflict of interest.

For those of you who have not heard or read about it, Terri Schindler-Schiavo collapsed in 1990 from as yet unknown reasons, suffered brain damage, and is cognitively disabled. Because she had not signed a health directive to the contrary, her husband, Michael, had priority under Florida law to make her health care decisions and be appointed as her guardian. She can breathe on her own, move, and, according to her family, react to stimuli. But she has been kept alive thanks to a feeding tube because she is not able to eat or drink. Her family contends that even though she has brain damage, Terri would be able to eat and drink had her husband spent the necessary resources for rehabilitation such as swallow therapy. But I am getting ahead of myself.

After being appointed as her guardian, Husband Michael sued every medical professional in sight, blaming them for Terri’s condition. After espousing his undying love and swearing to a malpractice jury in 1993 that he would take care of Terri for the rest of her life and make sure she received needed medical care and therapy, approximately $800,000 went to her trust for her rehabilitation, and $300,000 went directly to him for lost consortium.

But no sooner had the ink dried on the deposit slips, than Michael changed his tune. After putting Terri’s cats to sleep, Michael took up with another woman, had two illegitimate children by a woman with whom he now lives, and went to court seeking to have Terri’s feeding tube removed. As the beneficiary of Terri’s trust, Husband Michael now says that Terri would not have wanted to live in this condition were she able to express her wishes.

So, instead of using Terri’s trust funds for rehabilitation, to fight infections that sometimes ravish her body, and to give her proper dental care, Michael hired lawyers to take out her feeding tube and, with court approval, used Terri’s trust fund to his campaign to take her life. Although Terri’s parents wanted to take her home, care for her there, and let Michael keep the money, Michael wanted Terri dead and refused to back down. So, for years, her parents have had to seek permission from the philandering Michael to even visit their daughter.

Meanwhile, Husband Michael has refused to follow mandatory Florida law that requires guardians to file annual care plans for three years – and the judge has given Michael extension after extension even though Florida law limits a guardian’s authority to the terms of court-approved health plans. The upshot: many infections because Michael would not allow doctors to treat her or give her antibiotics, and, most recently, the removal of five teeth due to utter lack of cleaning and dental hygiene. And Terri’s parents have no say.

So, even though Michael Schiavo has irreconcilable conflicts of interest and has violated Florida law by not filing mandated care plans and reports for more than three (3) years, Florida Judge George Greer not only allowed Michael to continue to serve a guardian, but also ordered on October 15, 2003 that Terri’s feeding tube be removed. And so the feeding tube was disconnected for six days -- until Governor Jeb Bush ordered it reinserted pending the outcome of even more litigation and legislative efforts.
So what do we have here? We have a husband-guardian breaching his fiduciary obligations to his wife that are required by law. We have a judge who has turned deaf ears – and blind eyes -- to these transgressions and has allowed the husband to continue to serve even though the Florida law clearly limits a guardian’s authority to the terms of court-approved health plans that have not been filed for more than three years. We have a judge who ordered that a wife to die a slow, agonizing death by dehydration and starvation in proceedings where funds earmarked for rehabilitation have been used for assassination.

What should we learn from the Schiavo fiasco to help ourselves avoid similar problems?

First of all, each state has adult health care consent laws for those who do not choose to sign advance directives. These laws list, in order of legislative priority, the relationships of those who will make health care decisions. Generally, if there is no guardian or health care proxy, spouses are first in line (unless they are separated) and then parents, adult children, adult siblings, and so on. This, of course, technically means that a spouse – even a second spouse of five minutes -- has priority to serve as health care proxy under the law unless “good cause” to the contrary is determined by a court order after an expensive proceeding.
In addition, should there are two or more candidates available to make decisions at any priority level who don’t agree – say three adult children or a second spouse of a few years and adult children who don’t agree -- a decision in a guardianship action in the probate or surrogate court will be necessary at great economic and emotional expense.

Since none of us can predict the future, none of us know which unlucky spouse could find himself or herself in a situation like Terri Schiavo. For that reason alone, quality time and effort should be put into planning for incapacity while we are able to do so.

For these and many other reasons, health care planning – and the implementation of that plan when necessary – must be accomplished through a coordinated, team approach that includes “back up” strategies. It’s not enough to advise a client to pick an agent and an alternate, sign a health care directive, and leave the future to chance because there are too many unpredictable events that can occur.

To protect married individuals who later become incapacitated from a fate similar to Terri’s, it is advisable to build as much protection as is possible into written health care directives.
While it is understandable that most husbands and wives want their spouses to make their health decisions should they become incapacitated and appoint them as health care agents, reasons for removal of a health care agent should be included in all health care documents in order to express the clear intent of the signator. In this way, should the unthinkable occur, there will be clear guidance for alternate agents and a judge who may have to make the ultimate decision.

To avoid and/or deal with conflicts of interest like Terri Schiavo’s family is now facing, there should be clear language in the documents to guide those who could be making decisions in the future. For example:

Believing at this time that my spouse shall have my best interests at heart should I become incapacitated and be unable to make my health care decisions, I name, nominate, and appoint my spouse ____________ as my health care agent to make my health care decisions for me; provided, however, should my spouse be at any time romantically involved with another person, such a relationship shall constitute an absolute conflict of interest in which event my spouse’s appointment hereunder shall be irrevocably revoked and, in that event, I name, nominate, and appoint ________________ as first alternate agent and _________________ as second alternate agent.
In addition, language to the following effect could create a priority in the judicial appointment of a guardian:

Unless my appointed health care agent is not following my specific health care instructions as outlined in writing in my health care documents, there should be no reason for the appointment of a guardian to make my health care decisions.
However, should my appointed agent not follow my specific written instructions regarding my health care during my incapacity, I name, nominate, and appoint ______________ , ____________, and ____________, in that order, to be appointed as my guardian.

In that event, I direct and mandate that the powers and authority provided to my attorney-in-fact hereunder shall survive and shall not be altered or terminated by the appointment of a guardian who shall be mandated to follow my written directions whether contained in this document or any document written in my hand or signed by me before two witnesses. Since I have placed in writing all of my health care directions, any oral statements to the contrary that any person may attribute to me shall carry no force or effect, and shall not be considered by any Court.

Because hospital and nursing home visits with incapacitated persons is often withheld because of control and financial issues, language to the following effect to establish visitation policies may solve a potential future issue:

During any period of my incapacity, it is my express desire that my health care proxy allow me visits with [my children (my spouse), etc.] unless my attending physician and the administrator of the facility where I am a patient or resident determines in writing that said visits are contrary to my best medical interests.

Similarly, because some individuals wish to give one or more persons other than their agent access to speak to physicians and other health care providers, I may include language, coupled with a HIPAA release, that authorizes this interaction.
And because the services of geriatric care managers are essential in many situations, I often include requirements in documents prepared for my clients that include a directive that a geriatric care manager be retained:

During any period of my incapacity, I direct that my health care agent use such of my funds as are necessary to hire a geriatric care manager to regularly review my medical records, assess and examine me, communicate with my physicians, and report on my condition to my agent and to [my children, spouse, etc.].

This provision is mandatory because I want to assure that I have the best quality of life available to me during my incapacity and that I receive, if it is in my medical best interests and will help me to recover or have a better quality of life, such rehabilitation and therapy as my medical professionals deem appropriate.

And lastly, I suggest language requiring the health proxy to establish and act on an appropriate health care plan with the assistance of the geriatric care manager, the physician, and the facility including, but not limited to, the following:

1. Confirmation that the current residential setting is best suited for the current needs of the incapacitated person; and

2. A Plan for assuring that during the following quarter of a year that the incapacitated person is in the best residential setting to meet his or her care needs; and

3. Reports from the attending physician and care manager who examined the incapacitated person not less frequently than quarterly that contain an evaluation of the incapacitated person’s condition and a current statement of the level of capacity; and

4. A plan for providing medical, mental health, dental, and rehabilitative services in the quarter year; and

5. The social and personal services currently utilized by the incapacitated person; and

6. The social skills of the incapacitated person, including a statement of how well her or she maintains interpersonal relationships with others; and

7. A description of the incapacitated person’s activities at communication and visitation; and

8. The social needs of the incapacitated person; and

9. A summary of activities during the preceding quarter that were designed to increase the capacity of the incapacitated person; and

10. An opinion each quarter by the physician and care manager as to whether the incapacitated person can have any rights restored and, if so, which ones; and

A failure to discharge these responsibilities should result in the health care proxy being removed.

Of course, in some situations, there are simply not sufficient funds to pay for this type of care; however, where there is, or where there are children who may agree to pitch in, I believe that better results will be attained for the incapacitated person.

Remember: A person can make his/her own health care decisions unless or until he or she is incapacitated and can’t express his/her desires. For that reason, health care proxies should be drafted to include the express intentions and desires of us who have capacity today. None of us would like to find ourselves or a loved on in the Terri Schiavo situation. And we can help prevent it by 1) making sure that individuals sign advance directives after being fully informed, and 2) where possible, drafting documents to fit the needs of the individual. If we all liked vanilla ice cream, there would be no reason for all of the other flavors.