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Thinking ahead: a special kind of planning.

None of us like to think about our own serious illness or death. As a result 75 percent of American adults fail to plan for the care they might want when these events eventually occur. Even more difficult to contemplate is the final illness or death of our parents or children. For special needs families, such difficulty should not stand in the way of action.

Parents who have not already done so should complete their own advance directives for healthcare naming an agent to make decisions when that parent becomes unable to make his or her own choices. These directives should state as clearly as possible the parents' values and choices regarding these difficult decisions to guide their care at the end of life. Adult children with special needs should be encouraged to think ahead so that their wishes and values can be honored.

Many of these special adults have now begun to search for a voice to express their unique wishes for care at the end of their lives. Documents are important, but equally powerful are the conversations within families. This article explores three ways this planning can be accomplished. Letter of Intent

When a child with special needs is unable to communicate her own views to others, it is most important that parents communicate the family's values and wishes for their child. Completed with the help of a special needs lawyer, a letter of intent communicates to future caregivers and special needs trustees what the parent wants the caregivers or trustee to know about caring for their beloved child. The letter of intent transmits special knowledge based upon a lifetime of care.

The letter of intent is designed to give successor caregivers and trustees the realistic information they need to carry on effectively as caregivers after parents (or other family members) no longer can provide care themselves. These guidelines should be given to successor caregivers (and trustees) after they have agreed to serve as well as kept in the special needs trust attorney's file. Sharing the instructions is best done through a meeting to review the letter of intent after it is completed.

When the parent does not know where to start to prepare such a statement, especially regarding end-of-life wishes, questionnaires and surveys can be helpful. "Five Wishes" and "Your Way" are two useful documents, both for assisting with a letter of intent and preparing one's own advance medical directives. (See sidebar on page 65.) Some parents of adult children may also choose to explore their values about such decisions using "Your Way" or an easy card game "GoWish." When the letter of intent is completed following a discussion of values and wishes or by special advance directives completed by the adult with special needs, families can be more confident that the values and wishes of all have been considered.

Go Wish: An Expression of Values When Alice, a consumer advocate with intellectual disabilities, learned her father was gravely ill, she wanted to talk with him about what he wanted at the end of his life.

She remembered how he had taught her to read using road signs, which was easier for her than learning out of a book. Alice found she could use the special set of "playing" cards called "Go Wish" to help her father let her know what he wanted. Although Alice could not write well enough to help her father put his wishes in writing, with the cards she could tell others what her father wanted. The discussion they had about his values and choices helped Alice to understand and follow her father's wishes.

The "Go Wish" game was developed with the help of doctors to fill a need for a way to stimulate discussion that would focus in a positive way on values and wishes about end-of-life care. It was also developed as an effective tool for adults with limited cognition and for people with limited literacy and limited skills in the English language. The game does not seem too simplistic for those with higher education and provides a tool that stimulates discussion about caring long before the need arises.

The game is a set of 36 cards. Each card has a short statement of values people often cite as being important to them in the last weeks or months of life. Examples include:

* Not being a burden,

* To have someone who will listen to me,

* To have human touch,

* To have close friends near, and

* To be treated the way I want.

To play the game (in the solitaire mode) you sort the cards and rank priorities about what is important to you and then explain to a friend or family member, who is likely to make healthcare decisions for you, why you made the choices you did. The instruction sheet for the game gives other ways to play it in pairs or groups. The point of the game is not to create a written list of "what I want," but to stimulate conversations about what is important and why. Many people remark that when they play the game several times, the way they sort the cards changes a bit but that this helps them refine their thinking about what their values are and how those values would apply in different situations. (See sidebar at right for ordering information.)

Special Advance Directives

Connie and Betty are client-consumer advocates in California. Both experienced the loss of someone special to them and because of these experiences determined they wanted to think ahead about how to stay in control of their own lives as much as possible. Betty's brother was hospitalized and very ill but had never told anyone about what he wanted for treatment at the end of his life. Because she was the person closest to her brother, the doctor called Betty about making medical choices. Betty had to decide alone whether to start tube feeding for her brother or to allow him to pass away. Betty decided she wanted to be prepared herself and make her own decisions ahead of time. She wanted to take steps to be in control.

When a friend of Connie's died, she wanted to pay her respects but could not do so because the friend's body was gone, and no one seemed to know or was willing to tell her what had happened. Although her friend had been a strong advocate, he had not made plans for his own death. Other people took over his belongings and his burial. After this experience, Connie thought about what was important to her and started to make her own plans.

Both women wanted to prepare an Advance Directive, but the forms that are usually available were too complex for them. Most of the Advance Healthcare Directive forms readily available to the general population are too complex for adults with intellectual disabilities to understand and complete. Within the Regional Centers in California, the adults with special needs who are their own consumer advocates have helped to develop an advance directive that is tailored to their needs. The document workbook and instructional DVD were designed specifically for people and by people with developmental disabilities to enable them to make their own decisions regarding healthcare treatment and related decisions at the end of life.

Called "Thinking Ahead--My Life at the End," the document contains words, symbols, and pictures that facilitate discussion with and decision-making by persons with developmental disabilities about their own values, goals, and treatment preferences at the end of life. The DVD, which serves as an instruction manual, contains vignettes that illustrate in simple, graphic format the purpose and use of the materials.

As the introduction in "Thinking Ahead" tells the consumer, talking about death and dying is hard for everyone, but being prepared helps ensure your choices will be honored. The consumer is guided first to select the right person to help--someone who knows her well, who will advocate for her, and help complete the workbook. In the workbook, the consumer is guided to think about personal requests, to make plans about her final days, and to consider how she wants to be remembered. Consumers can also provide information about where they want their things to go, gifts they want to leave, and how their body should be treated. The consumer is then guided through thoughts about how medical choices should be made and quality of life questions. Finally, the consumer is guided in ways to choose an "end of life advocate" or healthcare agent to carry out the described instructions.

This California form can fulfill the legal requirements for an advance directive in most states. Your special needs lawyer can help to determine if it is valid in your state. Even where it may not be legally binding, the workbook itself can serve as a useful statement of values and wishes. It can help facilitate that most important conversation--the discussion of end-of-life planning choices within the family.

Doris E. Hawks focuses on legal problems facing the elderly and persons with disabilities of all ages. A partner at Hawks & Comfort, LLP, of Los Altos, CA, Doris has been recognized by her local county medical association as the Outstanding Citizen for her work promoting ethical decision-making in hospitals and for promotion of improved access to healthcare. Doris serves on the Board of Directors of the National Academy of Elder Law Attorneys, is a Fellow of the Academy, was elected to their Council of Advanced Practitioners, and received their Powley award for her contributions of service to the elderly and special needs communities. She is also a member of the Special Needs Alliance, a national, nonprofit organization committed to helping individuals with disabilities, their families, and the professionals who represent them. Contact information for a member in your state can be obtained by calling tollfree 877-572-8472 or by visiting
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Author:Hawks, Doris E.
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Apr 1, 2009
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