Your Right to the Life and Care You Prefer

By Angela Pomeranz

Do you remember the name Terri Schiavo? Her name was prominent in the news beginning in the late 1990s. Terri had suffered a cardiac arrest and massive brain injury due to lack of oxygen in 1990. Within a couple of months, Terri’s diagnosis was changed to that of a persistent vegetative state. Eight years later, Terri’s husband petitioned the court to have her feeding tube removed. Her parents fought the petition and a heated legal battle began. The case passed through many court systems and reached as high up as President George W. Bush. Finally, in 2005 Terri’s feeding tube was removed for the last time (it had been removed and reinserted once during the legal struggle) and she died 13 days later. Why a seven-year legal struggle over a feeding tube? Because Terri’s husband was confident that his wife would not want to live in such a vegetative state, and her parents believed that, as long as their daughter was alive, she should be allowed to remain so.

With Terri’s medical condition, she was unable to make her wishes known regarding her care. Unfortunately, because of the disagreement between her loved ones, her fate was ultimately decided in a courtroom.  If Terri had specified her wishes before her unforeseen debilitation, everyone involved would have known how to proceed. How would your family fare if they were faced with making medical decisions for you? Would there be conflict?

With senior adults, it’s often the children trying to manage the best interest of a parent when health declines or a medical crisis hits. If they don’t agree on your care, the conflict can quickly strain relationships. It does not need to be an extreme case like Terri’s for disagreements to surface. A chronic illness can be just as challenging. Statistics say that 50 percent of people over the age of 80 develop some form of dementia. This disturbing figure means that you have a 50/50 chance of needing someone else to be your decision maker as you age. You can help limit the possibility of conflict for your children by taking three actions — and they all relate to advance directives.

First, complete advance directives. Advance directives are documents that tell others who you have chosen to make your decisions if you are temporarily or permanently unable to. They put in writing what type of things your representative can help you with. Advance directives include a power of attorney, health care surrogate, and living will.

Advance directives generally are activated when one or more physicians say you no longer understand the risks and benefits of medical or financial decisions. This is called “incapacitated.” This is different than “incompetent,” which requires a legal process to make the determination.

If you have not appointed anyone as your health care representative and later become incapacitated, the State will make that choice for you. They will appoint a person called a health care proxy who will make decisions about your care. Who gets first say? A legal guardian trumps everyone. Aside from that, your spouse is first, then your children. Siblings, other relatives, and friends come next. What if you have several children? It is basically “majority rules” with each of the available children having a vote.

You can see the pitfall of having the default option of a proxy if children have different goals for your care. You may be in a second marriage with two sets of children. Step-family issues can surface and make things more complex. There may be siblings who don’t get along. Or the proxy may make a decision that would go against your values or wishes. You can avoid these proxy pitfalls by planning ahead and designating your representative.

Second, communicate your decisions to your children. Ideally, meet with your children as a group and discuss your wishes and why you appointed the person you did. One child may be great with numbers and money, so you might appoint them as your financial power of attorney. You may know that one child is highly emotional and may not serve you well in a medical crisis. This child might be more appropriate as an alternate. Review your document with them so they know what you do and don’t want in terms of your care.

Third, review your advance directives. Things change. Families change. Maybe your values have changed. The person you named as representative may have developed health issues. Consider if the documents you completed are still appropriate. Some people mistakenly think a power of attorney includes health care decisions, but it may not. Some believe that the health care representative listed in a living will covers all medical decision making. It usually does not. Most often, a living will health care surrogate only covers end-of-life decisions. Being familiar with the content of your documents will help you determine where there may be gaps.

Completing advance directives now will help your loved ones — and ultimately your care — while you are still part of the decision making. You can complete advance directives with the assistance of an attorney, or you can download basic living will and health care surrogate forms at no cost from the Florida Bar Association at www.floridabar.org under “Consumer Information.” If you live in north central Florida, Three Rivers Legal Services, Inc. offers free assistance to low income individuals. Visit their webpage at www.trls.org for information. Outside Florida, check online for similar services available in your area.

About the author: Angela Pomeranz holds both bachelor’s and master’s degrees in social work from the University of Kentucky. She has worked with seniors in long-term care for nine years. Prior to this, she worked extensively with children and adults with intellectual or developmental disabilities and their families. Advance planning for vulnerable individuals has been an essential consideration in supporting those she has served throughout her career.
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