HB 197-HEALTH CARE SERVICES DIRECTIVES CHAIR DYSON announced that the first order of business would be HOUSE BILL NO. 197, "An Act relating to directives for personal health care services and for medical treatment." Number 0086 PAUL MALLEY, Program Manager, Aging with Dignity, testified via teleconference. He stated that [Aging with Dignity] is a national nonprofit organization with offices in Washington [D.C.] and Miami. The headquarters in Tallahassee, Florida, are where the Five Wishes advanced directive is distributed throughout the country. He explained that within two weeks of Five Wishes being introduced in Florida in 1997, there were more than 50,000 requests from people all over the country who wanted a copy of the Five Wishes. So many people were interested because it is easy to use and it includes many of the issues that matter most to people, including some of the non-medical issues. MR. MALLEY stated that once [Aging with Dignity] started receiving requests, it began to work with the American Bar Association to make the document completely valid. It added a commission dealing with legal problems of the elderly and expanded the law of 50 states regarding advanced care planning. He stated that when Five Wishes was introduced in 1998, it was valid in 33 states. All of the 33 states had a suggested advanced directive form, but the residents were given the opportunity to put their wishes in their own words. Since then it has become legally valid in an additional two states - California and West Virginia. Both of those states enacted laws in the past two years that made Five Wishes valid, but they did not include Five Wishes in the state statutes. He noted that in some cases it was a matter of changing one word, from "the advanced directive must be in the following form" to "the advanced directive may be in the following form." MR. MALLEY said [Aging with Dignity] is now working with people in several states who are trying to change their [state] laws to make Five Wishes legally valid. [Aging with Dignity] is also working with more than one million American families and 3,000 organizations, all of which have copies of Five Wishes and are using it. The greatest interest is coming from some states where Five Wishes is not legally valid. He stated, in closing, that he would like to congratulate and thank the committee for even considering this legislation, which [Aging with Dignity] believes will greatly help the people of Alaska put their wishes in their own words and therefore get the kind of care they want at the end of life. Number 0376 CHAIR DYSON asked what forces a hospital to comply [with the advanced directive]. MR. MALLEY responded that [hospitals] are bound by the laws of the state, which require that the advanced directive be followed if it meets requirements in the state statute. He said counsel for the Council of the American Bar Association believe that Five Wishes would stand up in court in all 50 states because of the so-called Patient Self-determination Act, which is a national Act that requires health care providers to be involved with individuals' wishes. He added that [Aging with Dignity] has not had one instance in which an individual who filled out Five Wishes did not have his or her wishes honored. CHAIR DYSON asked what the penalty is if an institution does not [honor the Five Wishes]. MR. MALLEY answered that he believes that would probably vary by state. CHAIR DYSON asked whether Mr. Malley knows of any states that have criminal or civil penalties if the directives are not followed. MR. MALLEY responded that he knows there have been several instances in which criminal suits have been filed against health care providers who have not followed an individual's wishes that were spelled out in a legally valid advanced directive. CHAIR DYSON stated that it appears to him that this form is directed to elderly people and not necessarily to those who are facing life-threatening diseases earlier in life. MR. MALLEY stated that this is good for anyone who is 18 or older. He remarked that [Aging with Dignity] is working with companies to institute a program that would provide Five Wishes as an employee benefit. He said [Aging with Dignity] encourages people to fill out Five Wishes, or any advanced directive, before they get seriously ill. CHAIR DYSON stated that in the first hearing of this bill [the committee] discussed whether or not the form itself ought to be put in state law, as opposed to being referenced in law. MR. MALLEY stated that he thinks it would be better to reference the form rather than including the actual document, word for word, in the state's statute. He said there hasn't been a state to do that yet. He explained that if there were any changes to Five Wishes, [Aging with Dignity] would have to come back to [the legislature] and ask for another statute to be passed for the revisions. [HB 197 was suspended temporarily in order to hear other legislative business.] HB 197-HEALTH CARE SERVICES DIRECTIVES   [CHAIR DYSON returned the committee's attention to HOUSE BILL NO. 197, "An Act relating to directives for personal health care services and for medical treatment."] MELANIE LESH, Staff to Representative Bill Hudson, Alaska State Legislature, stated that Representative Hudson, sponsor, would like to continue to work on amending HB 197. Number 0370 MARIE DARLIN, AARP (formerly the American Association for Retired People), came forth and stated that AARP has been interested in the additional help given to families by use of the Five Wishes outline. She said it definitely helps in planning for health care needs with more complete advanced directives from the elderly or disabled person. She added that she would also like to direct [the committee's] attention to recommendation 10 of the January 1999 Long Term Care Task Force Report, which speaks to the importance of advanced directives and the need for public education regarding their availability. LORILYN SWANSON, Manager, Fireweed Place, came forth and stated that she is also a member of the Commission on Aging. She said: I am here today to express to you, from the viewpoint of a service provider, the importance of advanced directives and how HB 197 will meet and assist Alaskans in encouraging people to discuss with their families and friends their personal wishes for care prior to ... becoming incapacitated. I have watched many families find it necessary to make decisions with regard to loved ones and their care at a time when they are not prepared to do so, due to death, due to the imminent prospect of the loss, guilt, denial, grief, or family dissention. Many times these decisions needed to be made immediately or quickly without knowing or having even spoken to the person concerned because no one wanted to address the subject or talk about [it]. It was just too difficult to discuss. When it [it] almost too late and all the forms [needed] to be found, it's extremely difficult to find the forms in one place. No one form or collection of forms at this time addresses the directives as well as HB 197. It is written and encourages discussions with families in an open and dignified way, with options one might not think of on one's own. It offers a clear reconciliation at the close of life of one's wishes. It prompts one to think of options and gives an opportunity to express oneself. Number 0612 EUGENE DAU, Volunteer, AARP, came forth and stated that every time people talk about this, they think about money. He said he thinks filling out the form will get more people to do what they should do, instead of holding back because they think it will cost them $300. LINDA FINK, Assistant Director, Alaska State Hospital and Nursing Home Association (ASHNA), came forth and stated that in concept [ASHNA] supports the legislation but does not support how it is drafted. She said [ASHNA] would like to work with the sponsor over the interim in order for the bill to work for the providers who have to deal with the forms as well as the people who are filling the forms out. [HB 197 was held over.]