SB 291 - LIV. WILLS/ANATOMICAL GIFTS/PATIENT CARE MR. RALPH BENNETT, staff to Senator Robin Taylor, presented SB 291 as a major revision to Alaska Statute title 18, chapter 12 regarding rights of the terminally ill. MR. BENNETT said this bill is intended to offer Alaskans some assurance that their wishes will be carried out with regard to medical treatment and life sustaining procedures. He said that last year in the course of hearing a bill on organ and tissue donation, it became clear to the Legislature that many incapacitated persons are not having their wishes carried out. MR. BENNETT stated that current law makes a living will operable only when a patient is declared terminal. This is a diagnosis many doctors are reluctant to make. MR. BENNETT cited a 1995 study that found doctors still misunderstand or ignore patients' requests with the result that large numbers of people still die alone, in pain, and tethered to machines. MR. BENNETT said this law explicitly gives each and every competent adult the right to make fundamental decisions regarding his or her medical treatment, including the right to prepare an advance directive and to accept or refuse treatment. MR. BENNETT stated that the advance directive is operative only in the case that the declarant has been medically determined to be in a serious medical condition. The bill defines "medically determined" and "serious medical condition". He said an Oregon law was the model for the bill and provides for personal decisions to be communicated on a variety of situations. MR. BENNETT explained that section eight of the bill sets out when life support may be withdrawn from a person without an advanced directive and section seven clarifies that nothing in this bill is intended to condone mercy killing or assisted suicide. MR. BENNETT concluded that this bill will take Alaska into the 21st century, allowing individuals to make decisions regarding health care with more assurance that those wishes will be carried out in the event they are unable to speak for themselves. MS. BRIDGETTE CARNEY, a medical ethicist form Oregon, said the bill closely resembles the Oregon law. She claimed this law is working well in Oregon, where every patient entering a hospital has the opportunity to fill out an advance directive. This document can be filled out individually or with assistance and is helpful in communicating a patient's wishes, as well as fostering communication between patients, their doctors and their families. MS. CARNEY stressed the fact that a patient's verbal wishes always take precedence over an advance directive, allowing a patient to change his or her mind while they remain competent. MS. VIRGINIA PERI testified via teleconference from Anchorage and said she was the impetus for the bill, after an attempt to file an Oregon declaration with her attorney, who said it was not applicable due to the necessity, in Alaska, of being diagnosed as terminal. MS. PERI indicated that the word terminal is too broad and needs to be changed. She cited other portions of the Alaska law that she feels are too vague or otherwise inadequate. She asked that the committee please accept this bill, which answers all her questions and takes the state into the 20th century. MS. DEBORAH RANDALL, an Anchorage attorney, said the bill's sponsor statement was well written and exactly expresses her wishes. She noted that the current law does not have the necessary meat on its bones and is much too broad. She said the Oregon bill was the product of much thought on the part of its creators and provides a big step forward for Alaska law. She mentioned that current Alaska law does not allow the withdrawal of life support by an agent of the patient and the health care power of attorney provision needs revision. SENATOR PARNELL asked MS. RANDALL if she could distinguish this from assisted suicide legislation. MS. RANDALL replied that the bill states that is does not condone mercy killing or assisted suicide. She suggested people read the categories carefully, these assure assistance to people who do not want to be kept alive, not those who want help to die. She explained the case that originated the concept of living wills. SENATOR PARNELL asked about the term "permanently unconscious" on page 13, line 4. He gave an example of a friend who had been in a coma for nine months and later recovered and asked how the law would interpret this term. MS. RANDALL responded it would require a complete lack of awareness, confirmed by a neurological opinion, without a reasonable possibility of a return to consciousness. SENATOR PARNELL asked if the definition of a reasonable possibility had ever been litigated in Oregon but MS. RANDALL nor MS. CAREY were aware of any such case. MS. CAREY did explain that medical tests for brain activity would be factors in this determination. She said there is an established time frame in which to withdraw food and water in the case where a person is in a persistent vegetative or unconscious state. She remarked also that the assessment of higher brain functioning or cognitive ability vs. only autonomic brain stem functioning is important. MS. RANDALL commented that the declaration breaks out different circumstances and allows the individual to decide what course of treatment they would want in different situations. SENATOR PARNELL said he agrees with the principle but says this leads to assisted suicide if it's taken a bit further. CHAIRMAN TAYLOR voiced his belief of the difference between an affirmative act of putting something in someone as opposed to withdrawing something and allowing nature to take its course. He said he has no intention of this bill allowing any hastening of the natural process. MS. CARNEY added that this bill applies only to a competent person who makes their wishes known in advance as to what they would want should they become incompetent. She stressed it only goes into effect when they are incompetent. She differentiated assisted suicide as an act of a physician to intentionally end someone's life. She said this bill only allows the withholding or withdrawal of treatment. DR. TOM BUELLER, Professor of Philosophy at the University of Alaska Anchorage, concurred with the remarks of MS. CARNEY regarding the value of individual self-determination. He said this makes the bill dissimilar to assisted suicide in the regard that it is based on the notion of the right to refuse unwanted medical treatment. The advance directive allows incompetent patients to decide what they specifically want in a broad range of conditions. DR. BUELLER says this is helpful for doctors. CHAIRMAN TAYLOR asked DR. BUELLER about changing the term "serious medical condition" to "qualifying medical condition" and DR. BUELLER said he believes the term "serious" is more helpful, although he is not a physician. CHAIRMAN TAYLOR said it may simply be semantics. MS. MELBA COOKE, a case manager for Acquired Immune Deficiency Syndrome (AIDS) patients, indicated that living wills are often overridden even in cases where the patient clearly had no chance of recovery. In many of these instances, life support has prolonged these patients' lives and MS. COOKE called this cruel and unusual. She recounted losing her husband to AIDS and said, as a widow and an AIDS advocate, she strongly sees the need for this type of document. MR. JENS SAAKVITNE, representing Life Alaska transplant team, clarified that all fifty states recognize brain death as death and that it is vastly different from a permanent vegetative or unconscious state. MR. SAAKVITNE said the transplant teams of Alaska strongly support this bill, which would make things easier for families. He said there are a few revisions he would like to see, including a provision to allow the donation of any needed organ or tissue to appear before the list of organs or tissues and, on page eight, a provision allowing a designated doctor or the appropriate Alaska tissue bank to perform the donation procedure. CHAIRMAN TAYLOR asked if the designation on page eight was even necessary and MR. SAAKVITNE replied that in all his years of experience it has never been used, and pointed out that the attending physician is prohibited by law from removing organs or tissues. MR. RICHARD WILLIAMS, a 70 year old man in good health, testified from Anchorage that he was not concerned so much with death, as to how he dies. He said this bill address the fears of seniors regarding how they will pass out of this world. MR. MATT ANDERSON, representing the Department of Health and Social Services, spoke in support of the bill that he said will provide clarity for patients and health care providers. He suggested three minor changes to the bill. First the change from "serious medical condition" to "qualifying medical condition" which he says will clarify, not change, the bill by guiding the reader back to the bill itself for definition. Second, MR. ANDERSON asked for the insertion of "where available" before medically determined on page 13, line 2, to allow the bill to be more easily implemented in small communities. Third, he suggested that on page 10, the paragraphs defining "terminal" condition may apply to trauma patients. He said in these cases doctors should be able to make decisions without having to first contact family members. He urged this section be clarified to reflect it applies only to non- emergency situations. SENATOR PARNELL commented that he understood the difference between qualifying and serious but said the lack of clarity comes from the interpretation of sections A, B, C, and D, and not in the phrase "serious medical condition" itself. SENATOR PARNELL said he would like to keep the word serious in, and have the bill apply only in serious situations, not in qualifying situations. MR. ANDERSON responded that the strengths of the bill far outweigh this consideration. Ms. CARNEY pointed out that page four, line 23 -25 states if food and water are refused, "death will probably result". She thinks perhaps "will result" is more clear. CHAIRMAN TAYLOR agreed, saying the word probably is not appropriate. SENATOR ELLIS expressed thanks to MS. PERI and CHAIRMAN TAYLOR, saying he had considered introducing the bill but asked CHAIRMAN TAYLOR to do it for the good of the legislation itself. He commended Mr. AMBROSE's work on this issue, as well as the effort of CHAIRMAN TAYLOR to move this bill through the process. MS. PERI commented that she and DEBORAH RANDALL had debated the bill at length and find the term serious more explanatory and believe it will be more reasonable for the lay person reading and signing the document. DEBORAH RANDALL agreed that they had worked closely with the bill drafter on this language, and it was designed to correlate with the bill passed last year. Regarding the physician designation, MS. RANDALL said it is strictly an option and, if it is not chosen, the default is to an appropriate Alaska tissue/organ bank. She said most of her clients are not interested in specifying a doctor. SENATOR PARNELL validated that this bill does not change the fact that an attorney may not charge for a living will. CHAIRMAN TAYLOR assured him that was correct and recounted the story of Dick Eliasion wife's terminal illness, and his inability to remove life support. TAPE 98-11, SIDE B Number 001 CHAIRMAN TAYLOR remarked that during a hospital banquet he found out that over 90 per cent of people who had a living will spent their last two weeks of life in the intensive care unit hooked up to machines. He proposed as amendment #1 that on page 4 line 25, the word "probably" be deleted. Without objection, it was so ordered. CHAIRMAN TAYLOR proposed a conceptual amendment (#2) that would allow for the insertion of a space and appropriate language to indicate donation of "any needed organ or tissue" on lines 17-18 on page 8. Without objection, it was so ordered. CHAIRMAN TAYLOR proposed amendment #3 to delete lines 1 through 5 on page 8, saying in the case that someone wanted to designate a physician they could easily write that in. Without objection, it was so ordered. CHAIRMAN TAYLOR agreed with keeping the wording as serious, and did not offer an amendment. SENATOR ELLIS moved CSSB 291(JUD) out of committee. Without objection, it was so ordered.