HB 54-TERMINALLY ILL: ENDING LIFE OPTION  4:08:20 PM CHAIR SPOHNHOLZ announced that the final order of business would be SPONSOR SUBSTITUTE FOR HOUSE BILL NO. 54, "An Act providing an end-of-life option for terminally ill individuals; and providing for an effective date." 4:08:57 PM REPRESENTATIVE HARRIET DRUMMOND, Alaska State Legislature, stated that proposed HB 54 was "about patient's rights and end of life care. It allows patients to have important end of life discussions with their own doctors, doctors they already know and trust. It allows a patient to ease their pain and suffering and live and die on their own terms according to their own beliefs." 4:09:35 PM REPRESENTATIVE EASTMAN asked how the proposed bill would ensure that patients will not use coverage for life saving treatments in exchange for the less expensive option. He asked how to guarantee this would not occur. 4:10:21 PM REPRESENTATIVE DRUMMOND asked where this had happened, and she directed attention to the section of the proposed bill which guarded against coercion. She said that these patients had been dealing with their illness for a long time, and were surrounded by people who cared about them and were not going to coerce them. 4:10:59 PM KRISTIN KRANENDONK, Staff, Representative Harriet Drummond, Alaska State Legislature, said that there were provisions in the bill prohibiting a person from conditioning the sale of any type of insurance. She asked for further clarification that this was reflecting coercion by insurance companies to push patients into an end of life act. She noted that Section 13.55.240 (page 12, line 25) of the proposed bill had language that an insurance, life, or health policy could not be conditioned. 4:12:00 PM REPRESENTATIVE EASTMAN suggested that California and Oregon were "going down that road." He said there was a human tendency to prefer a less expensive option to something that could be life- saving but more expensive. He asked about the changes from the original version of the proposed bill, specifically about documentation and paperwork. He asked about the current requirements for written documentation for verification. 4:12:45 PM MS. KRANENDONK explained that Alaska currently has palliative care and hospice care providers who work with terminally ill individuals. She said there were several options for terminal patients. The section removed from the original bill was a written form required to be on file. She relayed that, as Oregon had found this to redundant, it was removed from the proposed bill. She noted that Alaska had advance health care directives, also known as living wills. She opined that an advance directive was more appropriate for healthy patients, and that the state already provided a complete packet which was available on the Division of Public Health website. She reported that an individual had the right to give instructions about their own health care to the extent as allowed by law. She relayed that Alaska also had Medical Officers for Life Sustaining Treatment, which offered the Comfort One program, also under the Division of Public Health. She clarified that it was a set of medical orders for the very seriously or terminally ill, but was not an advance directive and not a substitute for naming a health care agent. She added that Comfort One patients could wear an identifying bracelet, which included information regarding the diagnosis, treatment, end of life options, hospice, and palliative care. She added that state regulations also included a Do Not Resuscitate protocol, a standardized procedure. She stated that all patients who qualified for this proposed legislation would also qualify for the Comfort One program. She noted that a bill had been passed in 1998 that removed the duty of a peace officer to respond to an expected home death. REPRESENTATIVE EASTMAN asked about written documentation available to verify that this was supposed to occur, and was not foul play. 4:17:24 PM REPRESENTATIVE DRUMMOND explained that a terminal patient had to personally request the medication on two separate occasions, more than 15 days apart, from their primary care provider. The patient had to be determined to be terminally ill, and "would most likely be dead within six months." She added that there was appropriate paperwork to be filed at that time, and that the patient needed to be declared capable of making this decision, and being coerced. If the physician determined that the patient was in a psychological state which could lead to a wrong decision, the patient can be referred to counseling. She reiterated that there were a number of these safeguards. She declared, if there was any actual wrongdoing, that would be tantamount to murder. She reminded that the medication was supposed to be self-administered by the patient. MS. KRANENDONK pointed out that AS 12.65.007 also required that hospice have this form on file, and she added that more than 95 percent of the patients were in hospice. She declared that any suspicion of foul play would result in a call to a police officer. The proposed bill only stated that the information was not available to the public, but a police officer was allowed to review the medical records with the required documentation if there was suspicion of foul play. 4:20:09 PM REPRESENTATIVE EASTMAN asked what the minimum standard of appropriate paperwork would be and how it could be verified. MS. KRANENDONK replied that all the patients that qualified for this option were treated by a physician who had their patient files. She noted that the files for terminally ill patients included extensive documentation of everything since diagnosis. She offered her belief that this was not usually the first option. She explained that the written form had been removed from the proposed bill because the physician still had to document that the patient had orally requested it. 4:21:59 PM CHAIR SPOHNHOLZ asked if other states required a written documentation, and why the sponsor had opted to not include this. MS. KRANENDONK explained that Oregon had initially included this requirement because of concerns for coercion or wrongful death, but in the 24 years since its passage, there had not been any cases needing the forms. She reported that, as more states were doing this by ballot initiative, this requirement had been removed as it was determined to be a redundant step. She stated that Washington DC was the only place which required a coroner notification, as most states had a program similar to the aforementioned Medical Officers for Life Sustaining Treatment. CHAIR SPOHNHOLZ, reflecting that 95 percent of these patients were under the care of hospice, asked how many communities had hospice available. MS. KRANENDONK clarified that this was the percentage reported from Oregon. She stated that the Juneau hospice facilitated care for other SE Alaska communities. REPRESENTATIVE DRUMMOND added that they had not researched the availability of hospice care throughout Alaska. She noted that a criticism of the proposed bill was that palliative care was available. She declared that, if the proposed bill improved the availability and effectiveness of palliative care, then there would be progress. She explained that one reason for the proposed bill was that currently people had to move to Oregon to be able to take control of their life. She stated that there were options that may need to be worked into the proposed bill to allow patients to fully take advantage of the legislation, should they feel that need. CHAIR SPOHNHOLZ asked about those options. REPRESENTATIVE DRUMMOND noted that, as many communities in Alaska were inaccessible by road and that thousands of patients were not able to travel to see doctors, an option for tele- health had been discussed to be used in lieu of a personal appearance. 4:27:37 PM REPRESENTATIVE KITO spoke of the challenge for getting medical care and the potential cost in Alaska due to the geographic disparity. He asked if the proposed legislation would be insurance eligible, and, if not, would this create a circumstance where only having enough money would allow participation in the program. MS. KRANENDONK said that the current proposed bill would allow this as an insurance option, although it was not required as an option. She expressed concern that the program would only be available to people who could afford to travel for medical care, although this was currently true for a lot of health care. She declared the desire to make more health care available to everyone in the state. 4:29:19 PM REPRESENTATIVE KITO referenced the first 10 years of this program in Oregon, reporting that there were 541 requests for the medication, with 341 uses. He suggested that in a comparison with the Alaska population over 10 years, one might expect about 100 requests and 60 uses. He pointed out that, as people could have been moving to Oregon from other places to take advantage of this program, Alaska could expect even less request. He asked about the projected level of usage in Alaska. REPRESENTATIVE DRUMMOND expressed her agreement with the figures, sharing her research from Oregon, which included about 750 requests for the medication, with about 340 usages over 20 years. She stated that she had also extrapolated for small numbers in Alaska. She pointed out there was enormous cost to travel to Oregon for this program, especially in the late stages of a terminal disease. She declared that she wanted to make end of life options easier for Alaskans, not harder. MS. KRANENDONK said that the fiscal note reflected similar statistics, as it anticipated 10 - 19 cases annually for patients requesting the medication. She pointed out that it was necessary to establish residency in Oregon to take advantage of the program. 4:32:30 PM REPRESENTATIVE EASTMAN asked about the requirement for insurance to provide the service. He asked if this would be optional or included in every insurance plan. MS. KRANENDONK replied that polls reflected that about 70 percent of Alaskans would like this as an option. She observed that she would personally be more comfortable with this option in her insurance. REPRESENTATIVE EASTMAN asked if an insurance provider may or may not offer, and whether the proposed bill distinguished between these options. 4:35:00 PM MS. KRANENDONK offered to forward more insurance information. 4:35:39 PM REPRESENTATIVE SULLIVAN-LEONARD stated that she did not support the premise of the bill. She expressed her concern for vulnerable individuals, for those not close to health facilities, and for the lack of a requirement to have written approval for a procedure. She directed attention to the fiscal note from Legislative Legal Services [Included in members' packets] which read: The legislation creates a defense to murder in the first degree, murder in the second degree, and manslaughter if the person is performing an act permitted by the legislation. It also establishes a new crime of abuse of life termination process if a person intends to cause another person's death and falsely makes, completes, or alters a request for medication or destroys a rescission of a request for medication. A person may also be guilty of this crime if they exert undue influence on another person to request medication for the purpose of ending that person's life. Abuse of life termination process is a class A felony. REPRESENTATIVE DRUMMOND replied that these were safeguards to prevent abuse of the process. She declared that the desire for the proposed bill was for the patient to be fully cognizant of the choice, of the options, and to be able to rescind their request at any point during the process. She offered her belief that this was well covered in the proposed bill, which was based on the experience from other states. She reiterated that the proposed bill had been simplified because the required form had been "just collecting dust in a file." She stated that the medical community would figure out what worked for each individual practice. She expressed her certainty that it would be resolved in a way to make the most sense for both patient and doctor records. MS. KRANENDONK said that all the cases and the medication would be accounted for and tracked. REPRESENTATIVE SULLIVAN-LEONARD said that an oral argument would not come into play in a legal proceeding. 4:39:53 PM MS. KRANENDONK replied that the establishment of qualification was documented in the bill. 4:40:23 PM REPRESENTATIVE KITO referred to a study for the Oregon Death with Dignity Act between 2004 and 2006, which indicated that, although required by law that individuals requesting the medication receive counseling, 16 percent of those individuals suffered from clinical depression and were not referred to counseling. He asked if there were protections in the proposed law that would ensure accountability for not making a referral to counseling. MS. KRANENDONK replied that, although physicians were required to refer individuals for psychiatric care if depression was diagnosed, there was no punishment written into the bill. REPRESENTATIVE KITO expressed his concern for a 16 percent error rate, which could allow individuals, with treatment, to continue through their natural end of life. 4:42:15 PM REPRESENTATIVE EASTMAN, in reference to a move to Oregon to participate in the program, asked what was to stop someone from doctor shopping in order to qualify for the program. He noted that the letter of the law allowed broad qualification of an individual, and asked how to ensure that this would not happen. 4:44:07 PM REPRESENTATIVE DRUMMOND pointed out that the proposed bill required that two doctors, not in the same practice, agree that an individual was terminal within the prescribed amount of time. MS. KRANENDONK added that diabetes would not qualify in the early stages. 4:45:38 PM CHAIR SPOHNHOLZ pointed to the definition of terminal disease on page 11, line 17, in the proposed bill, and read: means an incurable and irreversible disease that has been medically confirmed and that will, within reasonable medical judgement, produce death within six months; CHAIR SPOHNHOLZ said that HB 54 would be held over. 4:46:50 PM KRISTEN HANSON, Chair, Patients' Rights Action Group, read from a prepared statement by her husband, James Hansen. He wrote that he was a marine war veteran, a husband, and a father. He did not want to die, and, as he was currently unable to travel, he could not make his statement in person. He shared that he was suffering from aggressive brain cancer. He shared his background prior to his cancer. He noted that he had the same brain cancer as the young woman who had moved to Oregon from California in order to be able to take her own life. He reported that three different doctors had told him there was nothing he could do about his cancer, as surgery, radiation, and chemo therapy rarely worked. He, instead, chose to do standard and experimental treatment. He expressed his thanks that he had not accepted his initial prognosis, even as the past three years had not been easy, with a lot of physical and emotional pain, countless seizures, and days with the loss of his most basic abilities, unable to talk, walk, read, or write. He shared that he had currently lived two years and eight months longer than his original prognosis. If this legislation had been available at that time, he could have chosen the medication, and he did consider it. He declared that there was no going back on a decision to end life. He stated that he had fought assisted suicide legislation for the last 18 months. He opined that legalized suicide, touted as death with dignity, had the opposite effect. He said that many patients with circumstances similar to his were offered lethal drugs and were denied or delayed coverage for the necessary care. He acknowledged that he had experienced depression and had felt that he was a burden to his family. He said it was a very real danger when people could choose death over care, and that suicide became a social norm for people who were terminally ill. He said there had been an increase of general suicide rates, along with medically assisted rates, in states which had legalized suicide. He added that, as he had also suffered post traumatic stress disorder, legalization of doctor prescribed suicide sent the wrong message to struggling veterans. He declared that mistakes would be made and lives would be tragically lost if assisted suicide were legalized. He asked if one person's perception of choice, influenced by hopelessness and fear of being a burden, put the lives of those who want to survive at risk. 4:53:52 PM WILLIAM HARRINGTON stated that medication was not defined as something to kill, but something to heal. He stated that a different word was necessary in the proposed bill, although he did support the legislation. He pointed out that it was a sacrilege to kill yourself. He suggested that this should be defined as self-termination, and not as suicide. 4:55:45 PM KARMELLE DEILLE stated that she was against the proposed bill, and opined that the law should always be on the side of life. She expressed her agreement with earlier testimony, and that termination of the hindrances would open the floodgates, and would keep people from respecting boundaries. She shared a personal experience with a friend. She suggested that it was necessary to look at history instead of emotion when deciding whether to change laws. She declared that it was not possible to legalize suicide if we "felt accountable to the creator of life." 5:00:07 PM PAMELA SAMASH, President, Right to Life, stated that the proposed bill was "a dangerous bill." She acknowledged that this was a sensitive subject. She declared that the proposed bill was wrong because "we don't know why some circumstances prolong death but sometimes people miraculously recover." She suggested to review the history of euthanasia in other countries and communities, which began as a personal choice but then slid into death as an answer. She asked what message the suicide laws would send. She stated her opposition to the proposed bill. 5:02:24 PM JEANNE ANDERSON, MD, Katmai College, paraphrased from a prepared statement [Included in members' packets], which read in part: My name is Jeanne E Anderson, MD. I am medical oncologist in private practice in Anchorage at Katmai Oncology Group, LLC. Specialists in Medical Oncology diagnosis patients with cancer; counsel them regarding prognosis and treatment options; prescribe medical (i.e., drug) treatment; and provide supportive, palliative and end of life care. I received my medical degree from Stanford University in 1988. I completed internal medicine specialty training in 1991, and medical oncology fellowship training in 1994, both at the University of Washington. I am strongly against HB54 for many reasons, including 1) the uncertainty in determining an individual patient's prognosis, 2) improvements in palliative care, and 3) hastening death is not the role of the physician or the medical system. A critical feature of SSHB54 is that the patient has a "terminal" disease. There is no definitive way to determine that a patient has less than 6 months to live. Estimates of survival are based on published data and a physician's clinical judgment. Survival data come from studies performed years earlier, often using treatment that is not the most up to date, and is based on narrowly defined patient populations. Even well informed and well-meaning oncologists make drastic mistakes in their estimates of prognosis. DR. ANDERSON expressed her agreement with the earlier testimony in opposition of the proposed bill. She acknowledged that professionals often made drastic mistakes in prognosis, and she shared three relative stories. 5:06:03 PM MARILYN GOLDEN, Senior Policy Analyst, Disability Rights Education and Defense Fund, stated her opposition to the proposed bill. She said that, with legalized assisted suicide, some people's lives would be ended without their consent through mistakes and abuse, as no safeguards could prevent this outcome. She offered her belief that the health care system was broken and would, instead, offer legalized suicide as "the cheapest treatment" when insurers denied or delayed approval of expensive, life sustaining treatment. She stated that "assisted suicide was a recipe for elder abuse." She said that mis- diagnosis and incorrect prognosis could analyze prematurely. She reported that negligent personnel were not liable for their negligent actions. She said that abuse was not investigated, and she suggested that the Oregon data failed to show abuse because the system was set up not to find it. She declared that suicide contagion was also an issue, with an increase in Oregon after the passage of its assisted suicide legislation. 5:10:27 PM FRANK MCGILVARY said that both he and his wife were opposed to the proposed legislation, as life was really precious. 5:11:49 PM CHAIR SPOHNHOLZ closed public testimony. [HB 54 was held over.]