Legislature(2017 - 2018)GRUENBERG 120
04/13/2018 01:00 PM House JUDICIARY
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| Audio | Topic |
|---|---|
| Start | |
| SJR4 | |
| HJR38 | |
| HB54 | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | SJR 4 | TELECONFERENCED | |
| + | HB 54 | TELECONFERENCED | |
| + | TELECONFERENCED | ||
| += | HJR 38 | TELECONFERENCED | |
HB 54-TERMINALLY ILL: ENDING LIFE OPTION
6:29:54 PM
CHAIR CLAMAN announced that the final only order of business
would be HOUSE BILL NO. 54, "An Act relating to the voluntary
termination of life by terminally ill individuals; and providing
for an effective date."
6:30:36 PM
REPRESENTATIVE HARRIET DRUMMOND, Alaska State Legislature,
acknowledged that the subject matter within HB 54 is not an easy
subject for most people. Death is a difficult topic because it
is raw and emotional, and no one wants to lose a loved one or
think about leaving their family behind. No one likes to talk
about (audio difficulties) painful and the legislature needs to
change that situation. This legislation allows terminally ill
patients to ease their pain and suffering by allowing doctors to
prescribe medication to offer aid in dying, it allows an Alaskan
the right to live and die on their own terms according to their
own desires and beliefs. Death is a natural part of life, and
this bill gives people dignity and peace of mind during their
final days with family and loved ones. It places a much greater
focus on a person's life than on the often painful and agonizing
process of dying, she offered.
6:32:09 PM
REPRESENTATIVE DRUMMON acknowledged that she had introduced this
legislation several years ago because Brittney Maynard was a
newlywed, age 29, living in California, she was happy and bright
and looking forward to a long and successful life. Shortly
after Ms. Maynard was married, she was diagnosed with a brain
cancer known to be swift and painful, it could not be repaired,
healed, or taken care of by chemotherapy. The State of
California did not have a medical Aid in Dying law in place at
the time so she decided to take herself and her new husband to
Oregon to take advantage of the state's Death with Dignity law.
Ms. Minard's widower and her parents then proceeded to work with
California's legislators until the law was passed last year.
Representative Drummond said that she thought about Alaskans in
similar situations, isolated far from the rest of the United
States, and she could not imagine someone enduring a fragile
medical condition at the end of their life and not being able to
take advantage of this choice if that was their desire. A
desire to die at home with family and friends close by, and not
be required to pick up everything and move to an unfamiliar
location thousands of miles away from their home in order to
have some control over the last days of their lives, she said.
6:34:20 PM
REPRESENTATIVE DRUMMOND reiterated that this is the second time
she has introduced this legislation and many people have strong
opinions about this bill. She noted that during public
testimony, family members will testify as to how they had to
deal with things, and "I hope and pray none of you will ever
have to deal with." She advised that she has been told that she
is evil for introducing this bill, she is going to hell, she is
a Nazi, and told she is playing God. Terminally ill patients
are hooked up to countless machines that prolong death for
weeks, there are machines that can breathe, eat, urinate for
people, and CPR is administered on sick patient's (audio
difficulties) swollen, bleeding, airways. (Audio difficulties)
be able to help people. Representative Drummond stated the
following:
I have been told that by introducing this legislation
I am promoting suicide. I resent that and I'm going
to get ahead of this game. My son was a sensitive,
caring, athletic 17-year old the day he took his own
life. Steven was my oldest child, he loved biking and
snowboarding. He biked to Denali when he was just an
8th grader. I have spent years going over every
minute of the days leading up to his death. I have
agonized over every decision, every word I said
wondering if there's anything I could have done to
prevent it. There isn't a day that goes by when I
don't think about how old he would be now or what he
might be doing if he was alive today. Suicide is a
tragedy, an irrational self-destructive act that
should be prevented at all costs. We don't get to
pick and choose which deaths we want to be suicide.
Does a patient who decides to quit chemotherapy or
stop undergoing lifesaving dialysis after years of
slow deterioration count as suicide? Does a Marine
who is under attack and jumps on a bomb to save his
fellow soldiers count as a suicide? Does a Jehovah
Witness who refuses a blood transfusion because of her
religious beliefs count as a suicide? Suicide is a
healthy person who could live, but wants to die. Aid
in Dying is about a sick person who wants to live, but
is dying.
6:36:42 PM
REPRESENTATIVE DRUMMOND explained that this legislation allows
patients to have important end-of-life discussions with doctors
that they already know and trust. Without this discussion,
well-meaning doctors are faced with prescribing painful
procedures, even when the patient does not want them, and there
is little hope for success. People in these conditions have
often lost their health and oftentimes much more. This bill, at
least, gives a patient control for the last and most important
decision they have left. Seven states and Washington D.C. have
all legalized Death with Dignity and those states have seen a
dramatic decrease in suicide attempts by the terminally ill, she
explained. Alaskans should be not forced to make a choice
between living out the rest of their life in misery with a
terminal illness or taking their own life in a brutal and
inhumane manner. She urged the committee's support in the
passage of this bill to give an end-of-life choice to the person
it will affect most.
6:38:50 PM
CHAIR CLAMAN opened public testimony on HB 54.
6:39:26 PM
ELLA SALTONSTALL, Volunteer, (Audio difficulties) and is fired
up to lead this cause. She explained that she is testifying to
advocate for those (audio difficulties), and she would like that
to be a possibility for terminally ill Alaskans. (Audio
difficulties) she offered that it is so people will not suffer,
and their reply is "Well, of course they shouldn't suffer and
this is about (audio difficulties)." (Audio difficulties.)
6:43:21 PM
MARGARET DORE, Attorney, President, Choice is an Illusion,
advised that the State of Washington passed the Death with
Dignity Act into law, and she warned the committee to not make
Washington's mistake. She noted that she is the President of
Choice is an Illusion which is opposed to assisted suicide in
euthanasia. She said that she prepared an analysis to the bill
and she had other handouts for the committee. One of the first
things to understand is that the discussion is not talking about
people who are necessarily dying anytime soon, the law has a
broad reach as currently written. For example, (audio
difficulties) because the criteria is six-months to live and
that is determined by (audio difficulties). As far as not
causing suicide, she said she has had three health (audio
difficulties) one of them told her later that she had saved his
life, these are traditional suicide. The other issue is (audio
difficulties). Aid in Dying is a traditional term for
euthanasia and she first saw the term being used in a State of
Iowa law review. She advised that there has been push back in
other states, this year in the State of Utah (audio
difficulties).
6:47:11 PM
MARY MCDOWELL advised that sometimes what is far less manageable
than the physical pain that a terminally ill person suffers is
their fear and anguish. She said that it is not just about
death itself, but about the process of dying and what that might
entail. For some people, some of that fear and anguish can be
relieved by just knowing that they have the option to make their
own decision to not endure any additional hours or days of
suffering if and when they reach the point where they are ready
and want it to end. One of the most compelling arguments for
her in favor of this legislation is the fact that in states with
similar laws in place, a large percentage of the terminally ill
people who choose to obtain the prescription for life ending
medication ultimately end up choosing to not use the medication.
The beauty of that for both those who ultimately choose to use
the medication and those who do not, is that throughout their
dying process they have the peace of mind of knowing that the
option is available if and when their suffering becomes
unbearable. These people are then able to stop spending so much
of their precious remaining time in dread and worry about some
of the "what if's" and instead they can savor whatever quality
of life they might otherwise enjoy in their final weeks and
days. Alaskans highly value individual rights and self-
determination, yet the state laws currently deny mentally
competent adults who are already in the midst of the dying
process, the right to avail themselves, if they so choose, of a
liberty they would have had if they resided in a number of other
states and the right to have some control over the timing and
manner in which their impending death would ultimately occur.
She noted that from everything she has read about the track
record of Death with Dignity laws in states that have it in
place, there is just simply no evidence of the sorts of abuses
that some who oppose this legislation put forth as reasons to
deny this right to the terminally ill. Furthermore, she stated,
this bill puts a lot of carefully designed provisions and
safeguards in place to provide both rights and protections to
the terminally ill, and some of those are so burdensome that it
would actually keep people, especially in rural Alaska where
medical providers are limited, from availing themselves of this
potential law. She understands that having so many level of
protections in place is meant to alleviate any concerns about
potential shortcutting or abuse of the process, she said. To
the extent possible, she remarked that she believes Alaska's
state laws should ensure that Alaskans are able to live with the
self-determination they hold so dear and retain as much peace of
mind as possible until their final breath is drawn. In the
event HB 54 becomes law, no terminally ill person will be forced
to use its provisions if that is their desire, but not passing
this bill is denying an Alaskan access to this option for those
who desperately want it, appears to be inhuman and un-Alaskan.
6:50:22 PM
ASHLEY CARDENAS, Director, Policy and Programs, Compassion and
Choices, advised that Compassion and Choices is the nation's
oldest and largest non-profit working to improve care and expand
choices at the end of life. She related that she is testifying
for Compassion and Choices to lift the voices of the more than
1,200 Alaskan supporters across the state, and to express strong
support for lawmakers to authorize medical Aid in Dying. This
legislation is modeled after the State of Oregon's Death with
Dignity Act, which has been tested and proven safe for more than
20 years. Although, she commented, opponents may try to use
scare tactics and make the same dire predictions raised in the
State of Oregon and in every state since, to deter this
legislation. The facts demonstrate that for more than 40 years
of combined practice in the authorized states, the laws do work
as intended as there has not been one single substantiated
instance of abuse. To that point, she said, she would address
some inaccurate claims that have been heard and will likely be
heard later in today's testimony. First, she said, there is a
fundamental difference between the act of committing suicide,
which is often the tragic result of an unrecognized or untreated
mental health disease such as depression or addiction, and a
rational well-considered decision to advance the time of death
in the setting of terminal illness and unrelenting suffering.
There is absolutely no evidence that authorizing medical Aid in
Dying increases the suicide rates in any state, she advised, and
that suicide rates encompass ready access to firearms, the rural
geography, and limited access to mental health services.
Studies have shown that the vast majority of those misdiagnosis
are either the result of missed diagnosis or under diagnosis.
She pointed out that rarely is a terminal diagnosis delivered,
let alone confirmed by multiple physicians, when the patient is
not in fact terminally ill. Furthermore, physicians are
typically optimistic in their estimate of a patient's survival
and generally over-estimate the amount of time a patient is
likely to live. In fact, she offered, one study showed that
physicians tend to over-estimate by at least five times.
Additionally, she advised, studies have shown that there is no
evidence of a heightened risk for patients in vulnerable groups,
and insurance companies have no financial incentive to pressure
terminally patients to accelerate their deaths because there is
no potential cost savings. Decisions about death belong to the
dying, she said, and this policy allows them to have open
conversations with their doctors, their loved ones, and their
faith leaders, about their needs at the end of their life. The
decision to utilize medical Aid in Dying is only one end of life
option, and for those who are strongly opposed need not opt for
the medical aid. Except, for those people who do face
unbearable suffering at end of their life, this option gives
them the courage and the hope that allows them to live fully as
long as possible, and to die peacefully when death is imminent,
she pointed out.
6:54:02 PM
DAVID GRUBE, M.D., Compassion and Choices, advised that he was
raised in Fairbanks and graduated from Lathrup High School, and
he has practiced in a small town in Oregon from 1977-2012.
During 15 of those years, Oregon's Death with Dignity Act was in
force, which is similar to HB 54, and he had a number of
terminally ill, dying and suffering patients who asked him to
support their choice at their end of life. Contrary to a
previous testifier, who is not a clinician and is not at the
bedsides of dying patients, Aid in Dying is a deliberate and
careful act. Doctors do not allow patients to use this process
because they are diabetic or because they just want to die. In
fact, he pointed out, when reviewing the State of Oregon's data
and experience, 95 percent of Aid in Dying patients are in
Hospice and are receiving Hospice's excellent quality of care.
He stated that he knows for a fact that Aid in Dying is a
palliative opportunity in and of itself because when people have
an opportunity to talk to their doctor about all of their end of
life choices, it is palliative and they suffer less. Dr. Grube
pointed out that more people have not died since Death with
Dignity was passed in the State of Oregon, and all of the people
who used Aid in Dying were about to die and fewer people have
suffered. He related that he hopes that is true for those
terminally ill and suffering Alaskans, they can write their own
final chapter and be allowed to not suffer.
6:56:48 PM
JEANNE ANDERSON, M.D., advised that she is a medical oncologist
who has taken care of cancer patients for almost 30 years, and
she is strongly against HB 54. She stated that doctors cannot
prognostic and predict that someone has less than six months to
live. Statistics offer an approximate average of survivals as
to how long patients might live, those statistics are data based
on historical treatment protocols and are notoriously
inaccurate. For example, she said, David White had stage 4
bladder cancer in 2014, and if he asked her to participate in
this end-of-life program, at that point she would have had to
predict that he had less than six months to live. Mr. White
chose to go on a clinical trial and he has been alive for three
years without evidence of his cancer. Another patient, Donald
Dunkleburger, had a (audio difficulties) lymphoma in 2015, he
did not respond to any of his chemotherapy treatments, he flew
to Seattle for a bone marrow transplant and the experts there
advised that he could not have the transplant because he would
not respond. Mr. Dunkleburger returned home, any oncologist
would have predicted that he had less than six months to live,
he chose to go home and not undergo further treatments, and two
years later he is still alive with a normal quality of life
without active lymphoma. Those are examples to show that
doctors cannot prognosticate, she advised, and for this is a
group of people being targeted, doctors have no clue how long
they will live. When someone is imminently dying with days to
weeks, or hours to days, to live it is then easy to determine
which is when doctors need to relieve their suffering. She
offered her belief that people make an excellent point that
suffering needs to be relieved and that there are many ways in
which to relieve suffering. In the event there is existential
suffering, patients need help for that, but they do not need to
take some treatment that ends their life before they have had
the opportunity to close ends with family members, and so forth.
There are palliative care teams (audio difficulties) services
within the community that can support people going through the
difficult process. There is an unintended consequence of
financial (audio difficulties).
6:59:33 PM
RICHARD ASHER, M.D., advised that he has lived in Dillingham for
over 30 years and he cares for people in rural villages. His
desire, he said, is (audio difficulties) assisted suicide will
not be passed. Physicians and practitioners are better trained
in relieving pain and comforting suffering patients with Hospice
and palliative care in rural communities. Care is provided to
patients in terminal situations and currently pain is much
better relieved than in the past. Dangers are involved when
physicians walk away from the traditional (audio difficulties)
causing harm to a patient (audio difficulties). Physicians and
nurses can (audio difficulties) as they face death and care for
them in tough situations. On the other hand, he said, (audio
difficulties) think is going to happen (audio difficulties).
Alaska has a high suicide rate, and a person who is depressed or
ill (audio difficulties) dealing with life's difficulties. He
urged the committee to (audio difficulties) this bill because
physicians and other health care providers will be harmed by
assisting patients in this endeavor.
7:01:14 PM
LAURINDA MARCELLO urged the committee to advance and eventually
pass HB 54. She advised that the summer after she graduated
from high school, her family changed completely because her
father, a middle-aged college chemistry professor, was
unexpectantly diagnosed with terminal cancer and scans had
located tumors throughout the critical areas of his body. Her
father opted for palliative comfort care and he died just three
weeks after his initial diagnosis. During that short period of
time much happened to diminish his quality of life which
included a serious infection, being medevacked to Seattle, and
losing his independence. Although her father was able to return
to Sitka, he carried the emotional burden of not being able to
return to his own home due to his health. During her father's
final several days, he faced the type of pain that not even the
maximum allowable dosage of morphine could erase. The (audio
difficulties) progression of (audio difficulties) precluded her
father from actually seeing a Death with Dignity law in Alaska.
This proposed law contains a reasonable waiting period in order
to avoid misuse; however, she said, she takes comfort in knowing
that other terminally ill Alaskans could be helped by HB 54.
Oftentimes, terminally ill people have months to contemplate and
plan for their death, and unfortunately that extra time often
comes with a prolonged period of agony. She related that it is
her greatest hope that the legislature will offer its terminally
ill residents the option to die with the assistance of
medication, and she asked the committee to support the passage
of HB 54.
7:02:52 PM
LUKE LIU, M.D., advised that he is an interventional pain
physician and he is opposed to HB 54 because this legislation
permits assisted suicide and euthanasia for terminally ill
patients. He offered that he shares Dr. Anderson's testimony,
her respect for the expectancy of life, and her progressive
optimism over advancing community medical care. In his
experience as an anesthesiologist and interventional pain
physician, he pointed out that he has encountered numerous cases
wherein medical teams were wrong in their assessment of the
survival duration for a patient. Doctors are not right all of
the time, he stressed. In the event the justice system (audio
difficulties) innocent until proven guilty and erroneously
imprison the wrongly accused. How much more detrimental, he
asked, are the consequences when a terminally ill person is
wrongfully diagnosed with a limited survival duration. He
offered that he does not think anyone, including medical
doctors, should be given such power to definitively limit
another person's life expectancy. Within his practice, he
remarked, (audio difficulties) patients. Particularly patients
with cancer pain wherein many of these modalities involve non-
opioid therapeutic options. He pointed out that the constant
advances in matters of terminal illnesses offer more alternative
treatment options, other than morphine drips and morphine
infusions. Currently, terminally ill patients are enrolled in
Hospice, and its very mission is to ease their suffering and
possibly hasten an inevitable and certain death. He asked why
the state needs something outside of the defined confines of the
well established medical specialty of Hospice to introduce some
(audio difficulties) negative social certainties when the nation
and the state are currently in an opioid epidemic. He stressed
that he is opposed to giving medical providers (audio
difficulties); therefore, he is opposed to HB 54.
7:05:31 PM
SUSAN SCHRADER advised that she has lived in Juneau for almost
30 years, offered her full support for HB 54, and encouraged the
committee's support for the legislation. She related that she
is unsure as to what she could say that would change the minds
of those who are opposed to giving (audio difficulties).
7:07:17 PM
CHERYL BOWIE advised that she opposes HB 54, and the testimony
using completely different geographic areas as a way to show how
a policy would have permanent impacts on a rural state versus a
different state with multiple options for healthcare,
transportation, and funding. She said, "We do pride ourselves"
on striving to achieve self-determination, but oftentimes "we
limit what our choices are." She remarked that she has personal
and professional experience wherein she has suffered multiple
and painful medical conditions the majority of her life. She
offered that, "I have also worked for two medical directors, one
for the federal government and one for a highly regulated
environment working in the oil field industry." She said she is
a "previous liver disease fellow," and completed a two semester
practicum at Indian Health Service Continuing Education in the
1990s. She related that she values life and before legalizing
something when this state is facing massive unemployment, huge
amounts of depression, drug abuse, suicide, and limited options,
this bill carries the wrong message. As much as she has not
enjoyed the "things I've had to endure in my own medical
history," (audio difficulties) she has learned lessons in her
life as someone suffering with multiple health conditions, and
she was in severe pain before she started using a (audio
difficulties).
7:09:57 PM
JOEL HANSON urged the committee to support the Death with
Dignity legislation. Similar to many people in their late 60s,
he has some personal knowledge and experience with end-of-life
issues. He offered that his father died almost 30 years ago
from cancer, and all of his family spent time helping him
through a prolonged and difficult period of deteriorating health
at home. His father eventually died hooked up to a morphine
pump, which he needed in order to keep his pain in check during
his last few months. Fifteen years ago, his mother died of
cancer, in pain, and at home with her children at her bedside.
He noted that he listened to a recording of the hearing in the
House Health and Social Services Standing Committee on 1/30/18.
He telephonically thanked the supporters of this bill during
that hearing, and he now offered his thanks again for their
efforts. These end-of-life issues are not easy to deal with,
"but deal with them we must, both personally and as a society."
He remarked to those who opposed this legislation in January and
to those in opposition today, it is the epidemy of cruelty for a
person to force agony on another person simply due to their
religious or ethical belief in the sanctity of life. In the
event this is "your position" as it was for the only two
objectors at the January hearing, (audio difficulties) is in
effect condemning someone else to suffer pain in order to "avoid
subjecting yourself to nothing more than a measure of doctrinal
or ethical distress ... Call it whatever you want, but don't
call your position a commitment of your devotion to a
compassionate God or a higher moral sense. No. Call it what it
is, a commitment to prolonging human anguish. I have my own
confession, if I find myself near my own life's end, in the same
kind of shape my parents were before their death, I have a
backup plan. It won't be the most dignified solution, but
absent a legally sanctioned pharmaceutical alternative, it will
be better than suffering and possibly causing those around me to
suffer. I know what that's like." He related his hope that
those representatives who are still undecided on Death with
Dignity, will give some thought to the fact that at least a few
elderly and seriously unwell Alaskans choose to take their own
lives every year (audio difficulties).
7:12:29 PM
WILLIAM KENYON advised that he is age 76, he is a resident of
Cordova, and one and one-half years ago he was diagnosed with
idiopathic pulmonary fibrosis, which is a terminal diagnosis.
There is no cure for this condition, he related, he will slowly
lose his ability to breathe, and near the end of his life he
will be restricted to bed care. A friend of his lived in the
State of Oregon, and she died of terminal cancer. Using the
Oregon law, she went through the process of being approved for
medical Aid in Dying. Even though his friend never used that
help, her explanation to him was that every day and every moment
she was not helpless because she had a valid choice for her
future, and that fact gave her a great degree of peace. As time
wore on, through the pain and discomfort she would put off the
decision for the next day, and she continued to live for another
day. Even though he has not yet reached the last weeks or
months of his life, he stated that he agrees with his friend and
with a clear mind, he would like the right to choose when it is
time for him to leave this world.
7:14:00 PM
MAUREEN MOORE, advised that she lives in Juneau (audio
difficulties) seriously makes plans for the end and she would
rather (audio difficulties) state that she loves, surrounded by
the people she cares about at the end of her life. (Audio
difficulties) Hospice trainer for (audio difficulties) and she
would certainly like to have that choice at the end of her day
and not leave her family with (audio difficulties) of suffering
that do not easily disappear. (Audio difficulties) mine are
valuable and she asked the committee to please support this
legislation and move it to the floor of the House of
Representatives this year.
7:16:11 PM
CHAIR CLAMAN, after ascertaining no one wished to testify,
closed public testimony on HB 54.
[HB 54 was held over.]