HB 71 - ADVANCE HEALTH CARE DIRECTIVES REGISTRY  2:21:02 PM CHAIR RAMRAS announced that the next order of business would be HOUSE BILL NO. 71, "An Act relating to a registry for advance health care directives." [Before the committee was CSHB 71(HSS).] 2:21:11 PM REPRESENTATIVE HOLMES, speaking as one of the bill's joint prime sponsors, moved to adopt the proposed committee substitute (CS) for HB 71, Version 26-LS0289\T, Kurtz/Bannister, 1/21/10, as the work draft. There being no objection, Version T was before the committee. [Chair Ramras turned the gavel over to Representative Herron.] REPRESENTATIVE HOLMES explained that HB 71 addresses advance health care directives - commonly known as living wills. A family member of an acquaintance of hers experienced a medical emergency while the family was on a trip out of state, and although the person who took ill did have a living will, it had been left locked up at home and so was of no use whatsoever. Representative Holmes said that upon hearing about this experience, she realized that she, too, could potentially be in a similar situation someday because although she does have a living will, she keeps it locked up at her father's house. House Bill 71 would establish, under the Department of Health and Social Services (DHSS), a voluntary registry for advance health care directives; those who choose to do so, could submit their living will information to the DHSS for inclusion in the registry - a secure, online database - that could then be accessed by hospitals and healthcare providers across the state. 2:23:10 PM JAMES WALDO, Staff, Representative Lindsey Holmes, Alaska State Legislature - on behalf of Representative Holmes, one of the bill's joint prime sponsors - added that once entered into the registry, a person's living will would also be accessible to the person, his/her agent, guardian, or surrogate, and other types of healthcare facilities such as nursing homes. In response to a question, he explained that under Version T, the DHSS would be allowed to contract with a registry organization to establish and maintain the State registry - such an organization would be able to do so at less cost than the DHSS. REPRESENTATIVE GRUENBERG observed that the DHSS's decreased fiscal note for Version T reflects that change. MR. WALDO concurred. [Representative Herron returned the gavel to Chair Ramras.] 2:26:21 PM WARD B. HURLBURT, M.D., Director and Chief Medical Officer, Central Office, Division of Public Health, Department of Health and Social Services, explained that HB 71 creates a mechanism for the storage of advance health care directives, and that both the division and the DHSS have worked with the sponsor and are in support of the intent to have advance health care directives made available via the proposed registry. The administration, however, has taken a neutral position on HB 71 due to the fiscal note. REPRESENTATIVE GRUENBERG, mentioning that he strongly supports HB 71, expressed a desire for national uniformity and interstate cooperation regarding advance health care directives. DR. HURLBURT, in response to a question, surmised that the Association of State and Territorial Health Officials (ASTHO) could potentially provide a forum to address such issues. He pointed out that any information submitted to the proposed registry would be accessible to healthcare providers out of state. Furthermore, some other states have adopted similar law, and so could serve as models for Alaska's registry. CHAIR RAMRAS said he opposes HB 71 due to the fiscal note, and questioned why the State should pay someone over $100,000 per year to maintain the proposed registry. REPRESENTATIVE HOLMES clarified that the bulk of the fiscal note addresses startup costs, and that the amount required to maintain the registry after startup would quickly be scaled back. DR. HURLBURT concurred. REPRESENTATIVE GRUENBERG suggested that the issues raised by the fiscal note would be better addressed by the House Finance Committee, the bill's next committee of referral. 2:35:01 PM MARIE DARLIN, Coordinator, AARP Capital City Task Force, noted that members' packets contain the AARP's letter of support for HB 71, and that her group is among those that worked very hard, for four years, to statutorily provide for advance health care directives, and so views HB 71 as a follow-up piece of legislation that would allow advance health care directives to actually be useful and function as intended. The AARP has worked very hard, and will continue to work very hard, to get its members to complete their advance health care directives and, hopefully, carry them with them; most people won't, however, and so HB 71 would hopefully provide recourse for those people. She indicated that although the AARP has not yet calculated the cost of maintaining the proposed registry, the AARP would like to see some consideration given to low-income people, perhaps via providing for a very low [registration fee]. With regard to the issue of needing access to the registry when traveling outside of Alaska, she offered her understanding that the bill is not yet clear with regard to whether healthcare professionals in the state a person is traveling in would have access to Alaska's registry. Regardless that that issue is one that might still need to be clarified, the AARP still supports HB 71 and hopes that it will pass. REPRESENTATIVE HOLMES noted that proposed AS 13.52.310(c) outlines who could have access to the information in the registry, and that it specifically provides that a hospital in another state could obtain information from Alaska's registry if requested to do so by the individual or his/her agent, guardian, or surrogate. MS. DARLIN questioned whether that language is all that's necessary. REPRESENTATIVE HOLMES offered her belief that it is, that a healthcare provider would be able to access information in the registry regardless of where the healthcare provider and the person happen to be. That is her intent, she concluded. MS. DARLIN, in response to a question, said that she does not know how many people would take advantage of the registry, nor how many people even have an advance health care directive in place yet, nor how such could be estimated. DR. HURLBURT, in response to a question, surmised that although the details still need to be worked out, there would be various options for submitting advance health care directives to the registry; that they could be submitted in person, by mail, or electronically; that there would be a central location for such submissions; and that the intent is for a private firm to administer the registry and provide training to Alaska's hospitals and healthcare providers. In response to a further question, he explained that the DHSS staff the fiscal note references would be responsible for monitoring the procurement and selection processes, and help with statewide logistics. In response to a comment, he said he is unable to address the amount of the salary listed in the fiscal note. CHAIR RAMRAS questioned how large of a registration fee would be required in order to pay for that staff position. 2:44:37 PM DR. HURLBURT suggested that a registration fee, even a modest one, could prove to be a disincentive for people who might wish to use the registry. The intent of the bill is to facilitate the use of advance health care directives. CHAIR RAMRAS remarked that regardless of the public good the bill would accomplish, it still puts a burden on the State and creates another job in State government. REPRESENTATIVE HOLMES, in response to a question, explained that the department has worked very hard to reduce the fiscal note, thus illustrating the importance being placed on establishing an advance health care directive registry; under Version T, only one employee would be needed for the first year, with personal services costs being scaled back in subsequent years. In response to a question, she indicated that there is a lot of concern among those she's heard from that a registration fee would be required. CHAIR RAMRAS said he is opposed to creating another job. He noted that the language of proposed AS 13.52.310(h) says in part, "The department may charge a fee to file a directive in the registry", and suggested that the word, "may" be changed to the word "shall" in order to offset the estimated personnel costs. DR. HURLBURT remarked that if such a change were made, then the committee should also consider having the bill provide an exemption from the fee for those who are indigent. REPRESENTATIVE LYNN said he could envision even someone with just less income also being unable to afford a registration fee. In response to a comment, he said that if having an advance health care directive is a good thing, then it logically follows that a registry for such directives would also be a good thing because then people could actually make use of their directives. It would be nice, therefore, if everyone, regardless of income, could get their directives added to the registry. 2:52:47 PM LORILYN SWANSON, Manager, Fireweed Place, Tlingit-Haida Regional Housing Authority (THRHA) - after mentioning that in addition to managing an independent-living senior complex, she also serves on the Juneau Commission on Aging (JCOA) - indicated that she is advocating for the adoption of HB 71, and is in favor of the State of Alaska establishing and maintaining an advance health care directive registry, which would hopefully be incorporated into a national advance health care directive registry. She went on to say: I support this for several reasons. Many of us have advance directives, and they are filed away in our home files. ... Yes, we know they are there, but I ask you, how many family members know where it is or how to access the information - especially in an emergency. We live in the age of world travel. ... For those having an advance directive, they probably do not carry it with them; I know I don't, and I imagine that many of you do not as well. I also see firsthand the confusion that can be created by medical emergencies. I manage an apartment building for an aging senior population. A 911 call leads to the emergency personnel being called to the building, and one of the first questions that I am usually asked, if it is a life threatening emergency, is, "Do you know if this person has an advance directive in place?" I may know, but unless it is lying on the table or in plain sight in the apartment, I do not feel comfortable answering that question unless the tenant has specifically instructed me to do so in case of an emergency, and then I am still not comfortable with it. In both of these cases, should there be a State registry, with coordination to a national registry, any emergency personnel or institution would have computer access to this information immediately. This is why we all have an advance directive in place, so that it can be acted upon per our own personal wishes and instructions. I would like to say, however, that I do not feel there should be a filing fee for registering. I feel that this would be a ... detriment for the many who are on low income, and they would not file. We worked hard, for four years, to get the advance directive here, in the state of Alaska, and now it is time to make it work by establishing this State registry. Thank you. REPRESENTATIVE GRUENBERG asked how many people in Alaska would be eligible for inclusion in the proposed registry if the bill passes. MS. SWANSON offered her belief that anyone who has an advance health care directive would be eligible for inclusion. She, too, relayed that she doesn't know how many people have an advance health care directive in place, though as an advocate for senior issues, she encourages everyone, not just seniors, to have one. In response to a question, she surmised that mandating a registration fee would probably not be popular with lower-income Alaskans. 2:57:02 PM EMILY NENON, Director, Alaska Government Relations, American Cancer Society Cancer Action Network (ACS CAN), said that the ACS CAN supports HB 71. She recounted that in his later years, her father developed severe dementia, and spent the last four years of his live in a nursing home. During the last six months of his life, his advance health care directive was overlooked three separate times. On one occasion, when he was still living in the nursing home, her mother was called to meet the ambulance staff taking him from the nursing home to the hospital, and when she got there, she found that the ambulance staff had managed to resuscitate him, and the attending physician was mortified upon learning that her father had had an advance health care directive but the nursing home had not sent it over with the ambulance staff. In conclusion, she said she doesn't want to see anyone else go through the same agony her family went through. [HB 71, Version T, was held over.]