HB 139-GUARDIANS; LIFE-SUSTAINING PROCEDURES  4:45:18 PM CO-CHAIR SNYDER announced that the final order of business would be HOUSE BILL NO. 139, "An Act relating to guardians, guardianships, successor guardians, incapacitated guardians, incapacitated individuals, and testamentary appointments of guardians; and relating to withholding or withdrawing life- sustaining procedures." 4:46:01 PM CO-CHAIR ZULKOSKY moved to adopt the proposed committee substitute (CS) for HB 139, Version LS0036\G, Bannister, 5/10/21, as the working document. There being no objection, Version G was before the committee. 4:46:31 PM REPRESENTATIVE SARA HANNAN, Alaska State Legislature, as prime sponsor, presented HB 139. She explained that the bill comes from constituents and would resolve a very real issue that they are facing. She said HB 139 would do three things. First, it would give legal guardians of incapacitated adult wards the authority to consent on behalf of that ward to cease or withhold lifesaving medical measures when those procedures would only prolong the dying process or offer no reasonable expectation of cure or relief for the illness that the ward is being treated for. Second, it would allow the guardian of an incapacitated ward to make a testamentary (by will) appointment of a subsequent guardian for the ward should the current guardian die. Third, it would allow a guardian to name a successor guardian of his or her ward should the guardian become incapacitated. She noted that these provisions are all legal, that guardianships vary from state to state, and that the circumstances being looked at in HB 139 are narrow in the statutory areas of Alaska law. REPRESENTATIVE HANNAN related that Paul Douglas, the constituent who brought this issue to her, is an older man who is faced with having an incapacitated [adult] child with a disease. The family fears that, once they have passed, the decisions they've made for their son for the last 60 years will not be able to be carried out. She noted that a group within the court system, the American Association of Retired Persons (AARP), and the legal community called [Working Interdisciplinary Networks of Guardianship Stakeholder (WINGS)], are looking at several aspects of guardianship law in Alaska that they believe are not adequate to deal with all circumstances. But, she continued, she has not yet engaged with those groups on this one very narrow piece that her constituent asked her to investigate. 4:49:56 PM TIMOTHY CLARK, Staff, Representative Sara Hannan, Alaska State Legislature, provided a sectional analysis of HB 139 on behalf of Representative Hannan, prime sponsor. He stated that the foundation of the bill is best interest of the ward. Under existing Alaska law, he explained, the authority of guardians is limited in end-of-life circumstances, which does not work in the best interest of the wards. There are examples within the Journal of the American Medical Association, he continued, of when a guardian cannot ascertain a patient's preferences and faces the ethical challenges involved in assessing a person's best interest. Guardians may be reluctant to give orders limiting treatment, he related, and reports have long suggested that they choose instead the safer path of aggressive care by default or defer to a cumbersome judicial process. That "safer path" can result in prolonging the dying process and suffering of the ward under the most extreme end of life circumstance. MR. CLARK informed the committee that most states do not have very clear guidance for guardians in statute. That lack of clarity, he said, can lead to these inadvertent circumstances where suffering is often prolonged needlessly. Besides the specific circumstances of the sponsor's constituent, he noted, there are also more general circumstances in terms of the wellbeing of incapacitated wards under these end-of-life situations. MR. CLARK noted that in granting guardians this authority the guardian is still not alone in this decision-making process. It is required, he pointed out, that the incapacitated ward not have on record anything written or known otherwise in terms of what his or her end-of-life choices may be. Secondly, the ward would have to suffer from what is known in law as a qualifying condition, which is essentially a terminal illness or permanent unconsciousness. The determination of that condition must be made by the ward's personal physician and another doctor if available, and when it comes to permanent unconsciousness a neurologist also must agree. MR. CLARK addressed the provisions of HB 139. He explained that the sections in the bill dealing with a guardian's ability to name a successor guardian in a will in case of the guardian's death, or to nominate a successor in case of the guardian's own incapacity [in the future], is a peace of mind issue for someone devoted to their adult incapacitated ward. With these mechanisms, he continued, a guardian can have the peace of mind that their ward will be looked after by someone who shares their concern for their ward's wellbeing. 4:56:05 PM MR. CLARK provided the sectional analysis for HB 139. He said Section 1 would amend AS 13.26.211 by adding a new subsection that allows the guardian of an incapacitated person to appoint by will a person to act as guardian for the ward if the current guardian dies. This new subsection also states that the appointment of the new guardian takes effect when the appointee has given notice to the persons and in one of the manners described in AS 13.26.296 and files acceptance of the appointment in the court in which the will is probated. He noted that AS 13.26.296 has to do with notification of the ward, the ward's relatives if they can be found, or other interested parties. He stated that in a future hearing the attorneys consulted by the sponsor can describe this provision further in that the court would still have authority to make a final judgement on the successor guardian's nomination. REPRESENTATIVE HANNAN, responding to Co-Chair Snyder, noted that Mr. Paul Douglas, a constituent of hers, is committed to this issue and has illuminating insights. 4:59:09 PM PAUL DOUGLAS testified in support of HB 139. He stated he is the father and legal guardian of his son who has been incapacitated since birth. He explained that several years ago, while exploring advance directives and end of life issues, he came to the realization that after more than 50 years of caring for, overseeing, and participating in the development, education, and overall wellbeing of his son, Alaska's statutes preclude him from participating in all lifesaving decisions regarding medical procedures related to his son's quality of life and end of life care. After several years of seeking support from his local legislators to modify the existing statutes, he continued, Representative Hannan and her staff accepted the challenge. MR. DOUGLAS stated that this issue is very real to him because in September 2020 his son was diagnosed with stage five advanced kidney disease with a projected life expectancy of six to twelve months. He said he agrees with the medical community's advisement that his son is not a candidate for dialysis and that the only solution is to focus on quality-of-life issues. However, he pointed out, current state statute does not allow him to make those decisions on behalf of his incapacitated son. MR. DOUGLAS asked committee members to consider the plight of hundreds of other Alaska families as they face these same heart- rending decisions. He said his intent today is to focus not only on his own personal dilemma but to in a small way represent the grave issues facing many other Alaska families caring for incapacitated wards. He urged the committee to support HB 139. REPRESENTATIVE SPOHNHOLZ requested Mr. Douglas to describe what he means by "quality of life" decisions. MR. DOUGLAS replied that providing life sustaining medical procedures just to keep someone alive when it is known for what purposes? He said his son is wheelchair bound after spinal surgery in 2016 and is now suffering from untreatable advanced kidney disease, so his lifetime is short and doing anything to prolong that doesn't make sense. After discussions with his [son's] personal care physician and other physicians, he stated, the consensus is that that is the appropriate way to go. But, he continued, according to statute he cannot make that decision and tell the doctors this is what he wants to do. 5:03:23 PM MR. CLARK resumed the sectional analysis. He explained that Section 2 would amend 13.26.281(a), which refers to the termination of guardianships, to add that the subsection is subject to subsection (c) in the same section. MR. CLARK stated that Section 3 would amend AS 13.26.281 by adding a new subsection (c) that would allow a guardian of an incapacitated person, while having capacity, to name a person to become a successor guardian for the incapacitated person if the guardian becomes incapacitated. He said this subsection also notes that the person named by the guardian has priority as successor, despite the categories of priority described in AS 13.26.311. He noted that this subsection further states that the appointment of the successor guardian takes effect when the appointee has given notice to the persons and in one of the manners described in AS 13.26.296 and has accepted the appointment. MR. CLARK stated that Section 4 relates to the authority of a guardian to decide on behalf of an incapacitated ward when it comes to end of life decisions. He said Section 4 would amend AS 13.26.316(c) which has to do with the general powers and duties of guardians in two ways. The first is mainly housekeeping and would substitute the word ["ensure" for "assure"] in four places where it appears in the section. The second is the addition of a new [paragraph] (8), which states that a guardian may make the decision to withdraw or withhold life-sustaining procedures from the ward if doing so is in the best interest of the ward. Any such decision must be made according to AS 13.52.045, which is addressed in Section 5 of the bill. MR. CLARK explained that Section 5 would amend AS 13.52.045, which pertains to the conditions under which life-sustaining procedures may be withdrawn or withheld, including that the ward must have a qualifying condition as determined by the ward's primary physician and at least one other physician if another is available. A determination of permanent unconsciousness must include a consultation with a neurologist. He further explained that in this section "a guardian of an incapacitated person under AS 13.26" is added to those persons who may determine that life-sustaining procedures may be withheld or withdrawn from a patient if doing so would be consistent with the patient's best interests. MR. CLARK concluded the sectional analysis by pointing out that Section 6 would repeal AS 13.26.316(e)(3), which in current statute prohibits a guardian from consenting to the withholding of lifesaving procedures on behalf of their ward. 5:09:05 PM REPRESENTATIVE MCCARTY asked whether a guardian wishing to appoint [a successor] guardian via a will would be appointed in a proactive manner. In response to Mr. Clark, he noted that Section 1 refers to appointment [of a successor guardian] by will and that Section 3 refers to naming a successor guardian in case the guardian becomes incapacitated. He asked whether one person would be the "runner up" in the flow. MR. CLARK replied that in the case of a testamentary appointment of a surrogate in case the current guardian dies, he assumes the current guardian could take that step at any time during his or her guardianship while still living. He said the naming a successor guardian should the current guardian become incapacitated must take place while the current guardian still has capacity. REPRESENTATIVE MCCARTY surmised that these provisions are not asking for that to be done in advance. MR. CLARK answered that these provisions would be completely voluntary on the part of any guardian. REPRESENTATIVE HANNAN responded that it must be done in advance. For example, she said, the will of [the current guardian] would have to include the testamentary selection. Or, if Mr. Douglas decided he needed to have a guardian lined up in case he had a stroke, that would have to be done now while Mr. Douglas has full capacity to decide to choose someone to become the guardian for his son. So, she added, they both would have to be done prior to the event where they would be needed. REPRESENTATIVE MCCARTY posed a scenario in which Mr. Douglas is the guardian for Representative McCarty who is incapacitated. He inquired whether Mr. Douglas must have a backup guardian in case something happens to Mr. Douglas unexpectedly. MR. CLARK replied that these provisions are something a guardian may choose to do, not anything that a guardian would be required to do. If a guardian did choose to appoint a successor guardian by will, a testamentary procedure, then the guardian would have to be alive to create that will and provision in that will. Also, he continued, it is clear in the bill that the current guardian must have capacity at the time of appointing a successor guardian in the event of the current guardian's future incapacity. REPRESENTATIVE MCCARTY surmised that if something happened to the guardian the courts become the guardian of the ward. MR. CLARK deferred the question into the future when there is an attorney available to answer it. 5:15:55 PM CO-CHAIR ZULKOSKY stated she is interested in hearing from invited testimony regarding the legal constructs around what happens under current law in the absence of HB 139. REPRESENTATIVE SPOHNHOLZ urged that the Office of Public Advocacy be brought into this conversation since it handles public guardianship for the State of Alaska and could help unpack the legal framework for this in a constructive way. She pointed out that there is familial guardianship and public guardianship, and that care must be taken in crafting law to not conflate the two. She inquired about the rationale in Section 4 for changing the word "assure" to "ensure" in multiple places. MR. CLARK answered that according to the bill's drafting attorney it is a style update that is legally preferred and believed to be more explicit. Responding further to Representative Spohnholz, he confirmed it is housekeeping and not a policy call that is changing the meaning. 5:19:02 PM REPRESENTATIVE KURKA asked whether the provision in Section 1 would cause problems with contingency appointees in a will and other legal documents, or whether there is other statute that would supersede these circumstances. MR. CLARK replied that this provision is for the guardian of an incapacitated ward to appoint, via the guardian's will, a successor guardian for the ward should the guardian die. REPRESENTATIVE KURKA posed a scenario in which he is the guardian of a certain individual and via his will he has appointed Representative McCarty as his replacement guardian. The certain individual, he continued, has his own legal statement that appoints Representative Kurka as guardian and Representative Prax successor guardian. He asserted that the certain individual's statement making Representative Prax the successor would be a superseding document and that this contingency is not in the bill's language. MR. CLARK offered his assumption that if an incapacitated ward had created a power of attorney or other document for health care decisions while the ward had capacity, then that document would supersede in healthcare decisions by the guardian. He said this can be confirmed by attorneys during future hearings. REPRESENTATIVE HANNAN pointed out that the difference in the scenario that Representative Kurka is describing is someone who has had capacity and made decisions. She said HB 139 addresses the loophole of a person who has never had capacity to make those decisions and documents. The concern here, she continued, is the guardian who has always had that ability but loses it. Currently, when the guardian dies, the courts make the decision about who becomes the decider for that person. This family, she continued, is asking for the ability to have the family participate in that decision. [HB 139 was held over.]