03/08/2004 01:33 PM Senate HES
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ALASKA STATE LEGISLATURE
SENATE HEALTH, EDUCATION AND SOCIAL SERVICES STANDING COMMITTEE
March 8, 2004
1:33 p.m.
TAPE(S) 04-12
MEMBERS PRESENT
Senator Fred Dyson, Chair
Senator Lyda Green, Vice Chair
Senator Gary Wilken
Senator Bettye Davis
MEMBERS ABSENT
Senator Gretchen Guess
COMMITTEE CALENDAR
HOUSE BILL NO. 282
"An Act relating to contracts between the University of Alaska
and its employees involving research or other development of
intellectual property and to the authority of the president of
the University of Alaska regarding employee contracts for
development of intellectual property."
MOVED HB 282 OUT OF COMMITTEE
CS FOR HOUSE BILL NO. 25(JUD)
"An Act relating to health care decisions, including do not
resuscitate orders, anatomical gifts, and mental health
treatment decisions, and to powers of attorney relating to
health care, including anatomical gifts and mental health
treatment decisions; and providing for an effective date."
HEARD AND HELD
PREVIOUS COMMITTEE ACTION
BILL: HB 282
SHORT TITLE: UNIVERSITY EMPLOYEE RESEARCH CONTRACTS
SPONSOR(s): REPRESENTATIVE(s) FATE
04/23/03 (H) READ THE FIRST TIME - REFERRALS
04/23/03 (H) HES, L&C
05/15/03 (H) HES AT 3:00 PM CAPITOL 106
05/15/03 (H) Scheduled But Not Heard
01/22/04 (H) HES AT 3:00 PM CAPITOL 106
01/22/04 (H) Moved Out of Committee
01/22/04 (H) MINUTE(HES)
01/23/04 (H) HES RPT 3DP 1NR
01/23/04 (H) DP: CISSNA, SEATON, WILSON; NR: GATTO
02/02/04 (H) L&C AT 3:15 PM CAPITOL 17
02/02/04 (H) Moved Out of Committee
02/02/04 (H) MINUTE(L&C)
02/04/04 (H) L&C RPT 4DP 3NR
02/04/04 (H) DP: CRAWFORD, ROKEBERG, GUTTENBERG,
02/04/04 (H) ANDERSON; NR: LYNN, GATTO, DAHLSTROM
02/19/04 (H) TRANSMITTED TO (S)
02/19/04 (H) VERSION: HB 282
02/20/04 (S) READ THE FIRST TIME - REFERRALS
02/20/04 (S) HES
03/03/04 (S) HES AT 1:30 PM BUTROVICH 205
03/03/04 (S) Heard & Held
03/03/04 (S) MINUTE(HES)
03/08/04 (S) HES AT 1:30 PM BUTROVICH 205
BILL: HB 25
SHORT TITLE: HEALTH CARE SERVICES DIRECTIVES
SPONSOR(s): REPRESENTATIVE(s) WEYHRAUCH
01/21/03 (H) PREFILE RELEASED (1/10/03)
01/21/03 (H) READ THE FIRST TIME - REFERRALS
01/21/03 (H) HES, JUD, FIN
02/13/03 (H) HES AT 3:00 PM CAPITOL 106
02/13/03 (H) Heard & Held
02/13/03 (H) MINUTE(HES)
02/27/03 (H) HES AT 3:00 PM CAPITOL 106
02/27/03 (H) Heard & Held
02/27/03 (H) MINUTE(HES)
03/06/03 (H) HES AT 3:00 PM CAPITOL 106
03/06/03 (H) Moved CSHB 25(HES) Out of Committee
03/06/03 (H) MINUTE(HES)
03/10/03 (H) HES RPT CS(HES) NT 7DP
03/10/03 (H) DP: GATTO, WOLF, HEINZE, SEATON,
03/10/03 (H) CISSNA, KAPSNER, WILSON
03/26/03 (H) JUD AT 1:00 PM CAPITOL 120
03/26/03 (H) -- Meeting Canceled --
03/28/03 (H) JUD AT 1:00 PM CAPITOL 120
03/28/03 (H) Heard & Held
03/28/03 (H) MINUTE(JUD)
03/31/03 (H) JUD AT 1:00 PM CAPITOL 120
03/31/03 (H) Moved CSHB 25(JUD) Out of Committee
03/31/03 (H) MINUTE(JUD)
04/07/03 (H) JUD RPT CS(JUD) NT 5DP
04/07/03 (H) DP: SAMUELS, HOLM, GARA, OGG, MCGUIRE
04/07/03 (H) FIN REFERRAL WAIVED
05/06/03 (H) TRANSMITTED TO (S)
05/06/03 (H) VERSION: CSHB 25(JUD)
05/07/03 (S) READ THE FIRST TIME - REFERRALS
05/07/03 (S) HES, JUD
05/16/03 (S) HES AT 1:30 PM BUTROVICH 205
05/16/03 (S) Heard & Held
05/16/03 (S) MINUTE(HES)
03/08/04 (S) HES AT 1:30 PM BUTROVICH 205
WITNESS REGISTER
REPRESENTATIVE HUGH FATE
Alaska State Capitol
Juneau, AK 99801-1182
POSITION STATEMENT: Sponsor of HB 282.
MR. JIM POUND
Staff to Representative Fate
Alaska State Capitol
Juneau, AK 99801-1182
POSITION STATEMENT: Answered questions pertaining to HB 282.
REPRESENTATIVE BRUCE WEYHRAUCH
Alaska State Capitol
Juneau, AK 99801-1182
POSITION STATEMENT: Sponsor of HB 25.
DR. MARIA WALLINGTON
Providence Alaska Medical Center
Anchorage, Alaska
POSITION STATEMENT: Supports HB 25.
FRANCIS NOLAN
Anchorage Emergency Medical Services
Anchorage, Alaska
POSITION STATEMENT: Supports HB 25, with expressed concern.
MS. CAROLE EDWARDS
Alaska Nurses Association (ANA)
Juneau, Alaska
POSITION STATEMENT: Supports HB 25.
MS. MARIE DARLIN
AARP Alaska Capital City Task Force
Juneau, Alaska
POSITION STATEMENT: Supports HB 25.
MS. LINDA SYLVESTER
Staff to Representative Weyhrauch
Alaska State Capitol
Juneau, AK 99801-1182
POSITION STATEMENT: Answered questions pertaining to HB 25.
MR. CHIP WAGONER
Alaska Catholic Conference
Juneau, Alaska
POSITION STATEMENT: Supports HB 25, with suggested amendments.
ACTION NARRATIVE
TAPE 04-12, SIDE A
CHAIR FRED DYSON called the Senate Health, Education and Social
Services Standing Committee meeting to order at 1:33 p.m.
Senators Green, Wilken, Davis, and Chair Dyson were present at
the call to order. Also present were Representatives Fate and
Weyhrauch. He announced the committee would take up HB 282 and
HB 25 and that his intention was to hear public testimony on HB
25 and to hold the bill in committee for resolution of issues.
HB 282-UNIVERSITY EMPLOYEE RESEARCH CONTRACTS
REPRESENTATIVE HUGH FATE, the bill sponsor, testified that HB
282 allows the president of the university to contract with an
employee of the university for intellectual property specific to
the research done by that employee. This contractual
arrangement benefits not only the university, but also the state
because of the potential for accrued proceeds from these
business relationships through profit and royalties. This takes
pressure off of recruitment and helps to retain top professors;
it supplements their incomes, but also supplements the income,
regard, and prestige of the university for which they work. The
bill has been held up before because of regulations concerning
ethics, as it's not allowed under current statute and
regulation. Many universities have done this. For example,
there were over 500 patents from Stanford alone, this past year.
This also takes pressure off of the general fund in the event
that business enterprises are wildly successful.
SENATOR LYDA GREEN expressed concern. She referred to the third
paragraph of President Mark Hamilton's letter of support and
read as follows: "Such constraints tend to force researchers to
choose between exporting their intellectual property without
continuing support, and giving up their university employment.
This climate provides little incentive for researchers to focus
on technologies that are subject to commercialization." She
said it seems simple that during an employee's tenure as a
professor or researcher - whether through grant, federal, or
state funding - that the information gained would certainly be
the university's property as well. She remarked that the issue
is that an employee can leave with that intellectual property
without the university accruing anything. "I have an idea that
problem is bigger than we are, and that's probably a subject of
debate all across universities in the world." She pointed out
that in the private market this would never be allowed.
REPRESENTATIVE FATE said he couldn't specifically answer that
concern, but those items would probably be taken up in the
contracts and agreements. "In our particular case because we
have not done much of this, it would be uncertain in my mind."
SENATOR GREEN responded that this was a very important issue to
be taking up, emphasizing that the protection of that
information and the benefit accruing to the university - if it's
done in the university lab, on computers, with help, with the
whole thing that goes with it - was her main concern.
CHAIR DYSON asked if contrary or negative testimony had been
heard on this bill.
MR. JIM POUND, Staff to Representative Fate, responded that
negative comments had not been offered in the other body's
committee process.
SENATOR GARY WILKEN moved to report HB 282 from committee with
individual recommendations [and zero fiscal notes, as mentioned
by the Chair].
CHAIR DYSON asked if there was any objection. Seeing and
hearing none, it was so ordered.
1:50 p.m.
HB 25-HEALTH CARE SERVICES DIRECTIVES
CHAIR DYSON began the hearing on HB 25 [CSHB 24(JUD)] by
mentioning that Representative Weyhrauch had made considerable
improvements on the bill and that it was [the Chair's] opinion
that the "do nothing" option was not a good one. He informed
members that after hearing from Representative Weyhrauch, [Chair
Dyson] would outline six policy questions for the committee to
focus on, followed by public testimony - with the intent to
incorporate and accommodate concerns - and to move the bill out
of committee in the next 10 days or two weeks.
SENATOR GREEN moved to adopt version U [labeled 23-LS0137\U,
Bannister, 2/11/04] as the working document.
CHAIR DYSON asked if there was any objection. There being none,
version U was before the committee.
SENATOR WILKEN asked if there was a referral to Senate Finance
and received confirmation that there was not.
CHAIR DYSON pointed out that there was a zero fiscal note.
REPRESENTATIVE BRUCE WEYHRAUCH, sponsor of HB 25, told members
that if it were not for Chair Dyson's spiritual, emotional, and
policy insights, the bill would be "poor for it." As an
editorial comment, he said HB 25 was difficult to deal with
because it addresses fundamental questions of life and death,
and of losing a loved one. He testified that HB 25 was inspired
by a concept called the five wishes, and reflects how a person
is treated at the end of life according to those wishes in areas
such as who will be making those decisions, which decisions to
make, the relative comfort during the dying process, and what
loved ones should know about end-of-life healthcare decisions.
The policy issues are significant and affect decisions such as
withholding of food and water, and determining that the
environment is - as much as possible - a loving one that is free
of judicial intervention. There have been major cases in the
U.S. (Florida, Missouri, and elsewhere) dealing with whether
treatment should be withheld from someone who is in a vegetative
state. He said that at some point policy decisions need to be
made and he is glad to have the debate on record. He
acknowledged that this bill has been in the Senate before, that
he has worked very hard on it, and welcomes dialogue and debate
to address concerns.
CHAIR DYSON then outlined six questions as follows:
1. Do we want this legislation to always start with
the presumption that when in doubt, we work to
preserve life?
2. At what point can an advance directive, an agent,
or the surrogate direct that artificial nutrition and
hydration - food and water - be withheld?
CHAIR DYSON commented that before looking into this issue, he
would have said "of course" [to providing food and water]
because to do otherwise would be involved with euthanasia, and
he is not personally willing to go there.
3. Reciprocity. How do we handle an end-of-life
directive that comes to us from another state that may
have different rules, different constraints, and
different assumptions?
4. Who is qualified? What is a qualified patient?
If you were to push the logic, all of us are in the
process of dying, and with the present technology, are
terminal. At what point in that process does the
definition of 'being qualified' kick-in?
5. Anatomical gifts. That's when parts of the dying
or dead person will be transplanted to help someone
who is living.
6. Authority of decision-makers. When you have an
incompetent patient, no longer capable of making
decisions on [his/her] own, and those decisions have
been given to a third person. You'll see in the bill
a hierarchy of presumption regarding who those 'third
persons' are who will make those decisions and how
authority or position is gained, and whether there
ought to be any appeals to that.
CHAIR DYSON said he probably knows of more reprobates than
others do, and cited three instances in Alaska from the last
year. He mentioned one example as that of an 87-year old man
who had not been out of bed for three years, was marginally
conscious, and who all of a sudden fell in love with his 34-year
old caretaker and demanded a marriage. The marriage was
performed with almost no witnesses present, and the man died
five days later. The estate went to the new bride, at the
exclusion of the family. "And lo and behold her boyfriend was
the doctor prescribing the medicine." He emphasized that care
needs to be taken in situations involving people with vested
interests. He referred to two situations in which the will was
predicated on death order, meaning who died first determined
"where the estate went." Manipulation can occur so that "who
becomes an heir depends on who dies first."
DR. MARIA WALLINGTON, a medical ethicist at Providence Alaska
Medical Center, testified in support of HB 25, saying that she
has been working with Representative Weyhrauch's office and that
she was available to answer questions of a medical or ethical
nature that might come up.
FRANCIS NOLAN, Anchorage Emergency Medical Services, testified
in support of HB 25. He expressed concern about a section of
the bill no longer included in the bill's current version U. He
also mentioned support for Alaska's Comfort One Program.
MS. CAROLE EDWARDS, an oncology nurse in Juneau for over 20
years and board member of Alaska Nurses Association (ANA),
expressed ANA's strong support of HB 25 and testified as
follows:
Death is something that we all must face. The type of
death we have can be in a large part within our own
control. HB 25 allows us to outline the treatment we
do - or don't want - in our last days. Death can be a
beautiful and peaceful experience for the patient as
well as the family and friends. Or it can be
extremely traumatic, painful and stressful for all
involved. I have been with many patients at the time
of death and have seen both.
I would like to tell you two stories about a good
death and a bad death. The first occurred several
years ago for a gentleman who was dying from cancer.
He had made his wishes known. He was in the hospital.
As death was imminent, family and friends gathered at
his bedside. I entered the room to feel a sense of
peace wash over me. Friends and family were in a
circle, holding hands with each other and with the
patient, and one member was strumming a guitar gently
as the group softly sang, "May the Circle Not be
Broken." The patient died in this beautiful setting.
This death made a huge impact on me, as I know that
this is how it should be. No fear, no writhing in
pain, and no dissention among the family members. I
think of this experience often and I would wish it for
everyone.
The other death was far different. The patient had
terminal cancer. Treatment was extremely difficult,
uncomfortable, and the patient was clearly not
responding. This was a woman with several adult
children. The patient wanted to stop her treatment.
One child supported this; the two others did not.
Major arguments, even screaming matches broke out in
the hospital halls and in the patient's room, among
the siblings and with the patient. If this woman had
filled out advance directives and a durable power of
attorney, we as health care providers could have more
easily stepped in. This woman died a very stressful
death. The children were not even speaking to each
other as they left the hospital. I don't even know if
they ever reconciled. Nobody deserves this.
2:10 p.m.
I have also been asked to speak today about fluid and
nutrition and pain control for terminally ill
patients. First I will address fluid and nutrition.
Nutrition in this instance refers to a feeding tube
being placed; IV, fluids. If a person, at the end of
life, in terminal care, desires something to eat or
drink, this does not mean that we would not allow them
to have it. They would certainly be allowed to have
whatever they want.
Withholding fluid and nutrition allows a patient to
die naturally. Before we had the technology to
provide IVs and feeding tubes, patients in the dying
process naturally ate less and drank less. This
allowed the organ systems to slowly shut down in
preparation for death. Therefore, it follows that
giving food and nutrition unnaturally can prolong the
death process. If we are concerned about, as we say,
"playing God" and making these decisions, we are
actually doing it by giving fluid and nutrition in
some instances and therefore prolonging death
unnaturally.
Fluid and nutrition can cause increased discomfort for
a dying patient by increasing respiratory secretions,
coughing and shortness of breath, increasing GI
secretions causing nausea and vomiting for this
patient, and it can also increase the peri-tumoral
edema - the edema around the tumor - causing increased
pain.
As for pain, nobody needs to die in pain - nobody.
More cancer patients fear dying in pain than dying
itself. Families of cancer patients consistently
express the fear that their loved ones will die in
pain. Almost every cancer patient, and I've taken
care of hundreds, that I've ever seen, and their
family, has expressed this fear to me. The same is
true for my oncology colleagues across the country.
Many people try to set out guidelines on pain.
Leading pain researchers give the definition of pain
as: "pain is whatever the patient says it is." And
it should be treated appropriately so that the pain is
alleviated. Cancer patients often need very large
amounts of pain medication to relieve their pain, and
as much as is needed should be given.
I will tell you another story about a friend who was
dying from cancer down South. She had extreme pain.
She was at home with hospice care. Hospice kept
increasing her morphine to control the pain during her
last few days. Finally the pain was controlled so
that she was able to focus on her family, who had
gathered, and even exchange intimate moments with her
husband. They even joked about a few things. She was
fully awake. She was getting over 300 milligrams (mg)
of morphine an hour. That is a huge dose! Most
people would expect it to cause instant death. It did
not. Unfortunately the end of this story is not quite
so peaceful. As death was imminent she became non-
responsive. She was taken to the local hospital and
seen in the emergency room. When they saw the amount
of morphine that she was being given, they immediately
dropped it to 20 mg an hour. She had extreme pain,
was screaming in pain at the time of her death,
begging her family to do something. The family is
upset to this day about the experience. This should
never have happened.
Pain medications are given in large amounts with the
intention of alleviating pain. Narcotic medications
do not have a therapeutic ceiling. Terminally ill
patients do not become addicted. Alleviating pain is
not assisted suicide. It is pain control and at times
will allow a patient to actually live a little longer
with much improved quality time with their family.
They can complete unfinished business with the family
- and this is very important at the end of life - and
they can die in peace. Adequate pain medication will
allow a patient to breathe more easily, not stop
breathing.
Every individual has a right to a peaceful death and
society should insist on this right.
I also wanted to add two other things because of the
questions that you raised. Ideally, everyone should
have advance directives. Passing this bill will not
guarantee that everybody is going to have those. So,
the way I see it, when this bill passes - which I hope
it does very quickly - it's not the end of our work.
We need to follow up on that, get this well
advertised, and get the message out so that people
fill out their advance directives. When they're
filled out, then we can act on them. To me, the
passing of this bill is just the beginning of our
work.
The other comment I have is that as far as other
states and advance directives, I want to tell you that
I have had my advance directives filled out for many
years because of my many experiences. I keep a set in
the safe at my parents house in New Jersey - both my
husband and I - I also have a set of advance
directives in my carry-on luggage that I take with me
at all times, no matter where I'm traveling. I guess
that's one of the hazards of being a nurse in this
business.
CHAIR DYSON remarked that version U, which his office has helped
to write, helps to clarify that regarding a comatose or
incompetent pregnant woman patient, the presumption would be to
preserve the life of the woman as long as possible to give the
developing child as much time in the womb as possible to mature,
thereby enhancing the chances of survival. He asked if this was
standard practice in hospitals.
MS. EDWARDS replied that she has not worked extensively in
ob/gyn but believed this to be true. She reported that ANA's
board and legislative committee supports this issue, as does
she, saying "if there's a chance of saving that child then we
should definitely keep the mother alive on life-support or
whatever it takes to allow that child to be born and survive.
It would certainly comfort the family to have that child if
they're losing a member."
CHAIR DYSON said this clarification has been done with the
agreement of the bill's sponsor. He stated he was irrevocably
pro-life regarding the abortion issue, yet he was not aware that
this was necessarily strengthening the pro-life position in the
courts or in the debate. He said he thought one could deduce
that this would be a wanted child if a woman had been carrying
that child and had not previously elected the abortion option;
it would be her and the family's intention for that child to
survive if at all possible. He acknowledged that the sponsor
was nodding in agreement.
DR. WALLINGTON offered support of this issue, as well.
The committee took a brief at-ease at 2:18, at Senator Green's
request.
MS. MARIE DARLIN, Coordinator for AARP Alaska Capital City Task
Force, testified that after six years of working on this bill,
AARP is glad that it has gotten this far. She referred to a
letter of support from the AARP office indicating that "all
states should have this type of legislation." The aim has been
to put a lot into one bill, to bring things up to date, and to
address outdated legislation. She said considerable work has
been done on this bill and attempts have been made to meet
everyone's concerns. She said that in the past three or four
years, she has been involved with her own family's situations
and that different things happen at the time of death; what's
included in this bill would make all of that much easier.
MS. DARLIN told members that her sister passed away last spring
after having cancer for several years and after losing her
husband about one year prior to that due to a massive heart
attack. Her sister, who had six children, and inoperable
cancer, had completed the forms so that her children would know
exactly how she wanted to be treated at the end of her life.
Things went according to her wishes in a hospice situation,
which really was the best. One month before she died, things
were well taken care of and nobody had to worry about how things
were going to be handled. Ms. Darlin then gave the example of
her son-in-law, who had an inoperable brain tumor and had
already verbally given instructions about how things were to be
handled. With the family knowing of his wishes, it was possible
to do things "the best for him, right up until the very end."
MS. DARLIN continued that she lost a brother about two or three
years ago who had not filled out any directives. He died of a
massive heart attack while duck hunting - which was the joy of
his life - and in that situation no decisions needed to be made.
She said she has another elderly relative who is currently going
through this process, whose kids want to know how to handle
things. She [the relative] is planning to say - on her next
trip to Fairbanks - "All right, now is the time, and we're going
to make some decisions, and I'm going to make them." Ms. Darlin
said that passing HB 25 would make this process easier because
"all of it will be in one place."
CHAIR DYSON asked if she was familiar with version U, and
requested that she circulate it to anyone wanting to have input.
MS. DARLIN replied that AARP remains supportive of HB 25,
appreciates the work done by Representative Weyhrauch and his
staff and will notify the committee if there are problems with
the current version.
CHAIR DYSON asked if it was customary in other jurisdictions to
have the actual document in the law rather than having the
provisions in the law and the documents in regulation.
MS. EDWARDS replied she didn't know.
DR. WALLINGTON responded that she wasn't so familiar with other
states.
MS. EDWARDS asked if people who already had their paperwork in
order would have to make changes or if existing documents would
be grandfathered-in.
REPRESENTATIVE WEYHRAUCH responded that statutory language is
intended to cover the basics and that having forms different
from those in statute would not be illegal. He said he'd have
to get back to the committee to answer the question as to
whether it's customary to have the documents included in the
law.
CHAIR DYSON said he questioned the wisdom of including this and
asked to be directed to the part of the bill clarifying that a
specific document in the law doesn't have to be used, but can be
modified or substituted.
MS. LINDA SYLVESTER, Staff to Representative Weyhrauch, referred
to page 22, line 17, "Optional form. The following sample form
may be used to create an advance health care directive ... this
form may be modified to suit the needs of the person, or a
completely different form may be used that contains the
substance of the following form or otherwise complies with this
chapter." She told members that one benefit of this statute is
that it creates an optional form, whereas an impediment of
current statute is that no options are available for the power
of attorney and the living will.
CHAIR DYSON asked if the language was carefully crafted to make
the directives clear and to avoid possible conflicts of
litigation.
MS. SYLVESTER said a lot of work had been done on the language
in the form, and that other states' options have been looked at,
as well. As an example, she mentioned the situation of a family
outside of the hospital room of a family member, trying to come
up with ways to address the use of pain therapy.
TAPE 04-12, SIDE B
MS. SYLVESTER continued that there are several options available
to the person who is expressing his/her attitudes toward pain
medication and also towards artificial hydration and nutrition.
One individual may desire that every option be exercised because
of wanting to stay alive, while another individual might want
the provision of artificial hydration and nutrition to allow
time to determine what his/her recovery will be and to have the
option to decide at a later point, when it seems like death is
imminent. There are a number of scenarios and options in which
attitudes can be expressed and conclusions can be drawn by
surrogate decision-makers.
REPRESENTATIVE WEHRAUCH offered that the intent of the form is
to make the directives as clear as possible and to avoid
litigation and uncertainty at the end-of-life, although
experience indicates that litigation will never be completely
avoided. He said he would like to hear Dr. Wallington's
response as to whether the form is clear enough.
DR. WALLINGTON said she had a lot to do with suggesting the
wording, and directed the committee's attention to page 28,
"artificial nutrition and hydration" and gave the example of a
family struggling with this question prior to finding out that
there was a living will. The will revealed that artificial
hydration and nutrition were not desired indefinitely. Knowing
that a choice had been made was helpful and took a load off of
the family.
CHAIR DYSON relayed that recently one of his staff had a parent
who died; in this situation the woman was obviously terminal and
almost never conscious and the continuing of food and water was
producing great discomfort and a lot of complications. He said
if a living will was executed by someone "not in the
circumstance, and a long ways away from it", there ought to be a
way for someone who previously said, "sure, keep giving me food
and water" but after becoming incompetent, and from among those
seeing the needless suffering being endured by someone who is
dying and who is beyond being able to communicate, it seemed -
"and I won't use the word torture" - but really inappropriate.
His understanding was that the document before the committee
makes the living will the guiding document and perhaps does not
make it easy enough, in a case that is perhaps obvious, for that
to be over-ruled. He asked Dr. Wallington to comment on this.
DR. WALLINGTON responded that this was an example of how "the
world is gray and not black and white." She said it was
interesting to hear the recognition of artificial nutrition and
hydration as not being the end all and be all of existence. She
said she has had a lot more difficulty with families being
unwilling to give up artificial nutrition and hydration than
recognizing that "they're doing bad things to people by using
it." She said she would be open to suggestions regarding how to
properly give an option for evaluating people's stated
preferences, recognizing that perhaps it was not known what life
would be like under those preferences and that perhaps a change
is desired. She stated she didn't want to make it too easy to
do away with what somebody has chosen because the point of the
living will is to have one's choices followed. She brought up
the difficulty with a person unfamiliar with the medical world
who is making decisions based upon what he/she thinks is right,
and then experiencing the consequence of that choice.
CHAIR DYSON alluded to the well-publicized case in Florida in
which the patient was not in danger of dying from other causes
but was questionably comatose and the husband, who had the
authority to make the decisions, also had a vested financial
interest in her dying sooner rather than later. He asked, "Is
medical science capable with reasonable certainty of saying this
person will never again be conscious and competent, or not?"
DR. WALLINGTON replied that there would be very few neurologists
(the specialty making that decision) who wouldn't think that the
statistics regarding their abilities firmly say that somebody,
after a year, can have a very good sense of whether or not "they
will wake up." She stated she had a different take on this
particular case, remarking that she was "about 10 years out
from" the incident and the chances of her changing would be
miniscule. To answer the question, she said it was possible to
make mistakes but there are very, very, very few [instances]
when after a significant length of time, a person's status will
change.
REPRESENTATIVE WEYHRAUCH referred to Chair Dyson's earlier
comment about a person who is living, who has the authority to
make decisions regarding someone else's healthcare and who would
be the heir to assets when that other person dies, depending on
the timing of the death. He said this was very common. He
mentioned that when his own father passed away, the assets went
to his mother, whereas if she had died first, her assets and the
trust would have gone to his father. He asked if this was the
type of scenario in question.
CHAIR DYSON responded that the situation he had in mind was, for
example, that of the father and the oldest son both being
terminal but still alive. If the father dies first, the estate
goes to the eldest son and when he dies, the estate goes to the
eldest son's children. However, if the eldest son dies first,
the estate goes to the second child (a woman). In this
situation, the eldest son's child was making the decisions for
the grandfather.
REPRESENTATIVE WEHYRAUCH suggested that in those decisions, many
factors go into analyzing the nature of the relationships: was
it loving, close, continuous, supportive, adversarial; were
there connections, hobbies, work projects; or was this a person
who just interjected him/herself. He said that in these
situations people can always repair to the courts for a
determination but analyzing this goes to the fundamental issue
of, "Where do we come from in adopting this kind of statute in
our approach to these kinds of health care decisions?" Is it to
continue life, or to make the person as comfortable as possible
in death? And how to trust a person's decisions while he/she
was conscious? "It's tough all around."
CHAIR DYSON said the following question has also come up: "If
we do not have a living will directive and the agent or
surrogate is making those decisions, should we have an appeal
process for other related adults to appeal the decision of the
agent or the surrogate and have that appeals process such that
it would work in a real time? You know, hours and days as
opposed to months and years."
REPRESENTATIVE WEYHRAUCH responded that many of those cases
become moot. He said they have to be in real time, or
expedited, otherwise the factual basis for having the case dies.
CHAIR DYSON concurred, "Exactly right, and time might work for
the bad guys, or it might work for the good guys." He suggested
that in quite a few situations, one could go to a magistrate and
get a stop order to buy some time to get the decision changed.
He asked, "Do we have a remedy like that if this law passes?"
REPRESENTATIVE WEYHRAUCH said a remedy already exists. "You can
always repair to the courts under this statutory scheme."
CHAIR DYSON asked if this was a readily available remedy.
REPRESENTATIVE WEYHRAUCH said, "Yes sir."
MS. SYLVESTER offered that currently there is a power of
attorney for health care. In HB 25 this would be the agent, and
there is the option of having a substitute agent as well. There
is also guardianship and under current law one can nominate,
through the courts, that guardian. The new law being brought in
by HB 25 is the concept of a surrogate, somebody (such as a
wife) who is the next logical candidate to make healthcare
decisions; the hierarchy is laid out. If there is a
disagreement and something is not right, a person or institution
can bring the case to a higher authority. The public guardian
is most likely assigned well in advance of an actual court
hearing. Guardianship statutes in Alaska don't authorize that
person to make decisions authorizing withdrawal of life-
sustaining measures, so there's also that protection currently
in place. Catholic Conference of Alaska suggests that if there
is a disagreement, that the diverse opinions of the surrogates
be considered by the healthcare provider before making a
decision. Of course anybody in that group can take it to
superior court and rectify the situation. She added that she
didn't think the remedy would be as easy in a situation in which
someone actually signed and was made an agent.
DR. WALLINGTON commented that if the healthcare provider
community sensed that the decisions being pushed for were
inappropriate, particularly in the realm of stopping care,
rights would be exercised under current law to ask for
[guardianship]. It takes up to six weeks for the process of
full guardianship to take place; temporary guardianship can be
done rather quickly. The family can also exercise that right,
it doesn't have to be the health system.
CHAIR DYSON said it appears that the law and the consent form
assume that anatomical gifts will be exercised unless the person
has explicitly declined wanting this. He asked if this was
correct, and if this was the proper way to proceed.
DR. WALLINGTON said she had recalled that the agreement was that
it was "inappropriate to have the process be one of [indisc.]."
REPRESENTATIVE WEYHRAUCH said the intent was, "You're not forced
in at all. You have to opt in."
CHAIR DYSON clarified that this related to page 16, lines 14 -
17.
MS. SYLVESTER pointed out that there was a drafting error, and
that updates had been submitted. She explained that
[subsection] (k) was inadvertently included by the drafter. She
said there was a change from the 1984 to the 1987 Uniform
Anatomical Gift Act, except for a provision that would make
Alaska an opt-out state. Alaska's new form has the option to
reject this, which was not previously included. She mentioned
that hospitals and hospital staff encourage and solicit organ
donations, and approach family members to seek an opinion. That
is currently law, and it will stay in.
CHAIR DYSON asked, "If a person had made an advance directive
and opted out and said 'I don't want to be a donor' then the
relatives or surrogates could not over-rule that?"
MS. SYLVESTER replied, "The decision's made by the principal and
that's that."
CHAIR DYSON asked if in the absence of that - unless there's a
record of desires clearly being made known - the agent or the
surrogate could make that decision.
MS. SYLVESTER said, "Correct."
MR. CHIP WAGONER, representing the Alaska Catholic Conference,
testified that the church remains as an advocate of the life and
human dignity of every person. As stated by Cardinal Bernardin
of Chicago who has since died of cancer, the church supports
that "seamless web of life from conception to natural death" and
opposes mercy killing, assisted suicide, and euthanasia. He
said that all statutes touching on this area of the law should
have a strong presumption for life. ACC favors passage of HB 25
given that amendments are made; ACC will continue the good faith
efforts in working with the sponsor, this committee and others
to devise a bill that is worthy of having the word, "Alaska" at
the top of it.
2:58 p.m.
MR. WAGONER expressed concern regarding the intent language and
did not offer specific suggestions but said he would like to
continue working with the sponsor to make improvements.
CHAIR DYSON mentioned that the intent language pertaining to the
presumption of life is pretty good, but "is watered down in a
couple of the sections further on."
MR. WAGONER concurred. He said with regard to an exception for
mental health treatment for decisions by the surrogate, ACC
thinks there should also be exceptions when abortion or
sterilization decisions are made. That is, when there is
nothing in the advance care directive by the principal; he
referenced page 5, line 15. He said clarification is needed on
page 6, line 8, subsection (d), dealing with individuals who
have "exhibited special care and concern for the patient"
because of the vagueness of the language. He said there is
concern regarding some of the sections on "do not resuscitate"
pertaining to someone who has made the decision of "do not
resuscitate" to be able to withdraw that decision. He said this
was for the principal but not for surrogates or possibly agents,
and he wanted to ensure that "if someone says, 'do not
resuscitate' that we have that."
MR. WAGONER continued that ACC is concerned about protocols that
are not considered to be healthcare decisions. He said
protocols seen in regulations deal with: 1) knowing who the
patient is, and 2) having correct identification of that patient
as a 'do not resuscitate' patient. He said there is nothing in
the protocols indicating how to decide to not resuscitate.
Those are all concerns. Mr. Wagoner remarked that it's been
excellent working with the sponsor's staff and that many
amendments have already been incorporated. He then referenced
page 12, lines 17 - 24, which includes the language, "and other
life-sustaining procedures" noting that ACC would like to see
that deleted. Mr. Wagoner stated concern with the language,
"... to the extent prohibited by other statutes of this state"
on page 13, line 27, subsection (f).
MR. WAGONER concluded that probably the most complex moral and
legal issue is that of artificial nutrition and hydration. He
distributed a statement from the United States Conference of
Catholic Bishops [Nutrition and Hydration: Moral and Pastoral
Reflections (1992)], and reiterated that this is just "not a
black and white issue." He continued that ACC recommends that
the best interest definition be slightly amended, and also that
definitions of "qualified" and "terminally ill" be included. He
then referred to artificial hydration and nutrition, suggesting
that this belongs in a different category than most healthcare
decisions because it results in death, and therefore should have
a different standard than other healthcare decisions. He
repeated that ACC supports the concept of HB 25 and hopes that
work can get done this session so it can become law.
CHAIR DYSON said he wanted each committee member to indicate
what questions remain to be answered before passing the bill out
of committee.
SENATOR GREEN said she didn't have comments at this time.
SENATOR WILKEN said he was ready to move the bill.
SENATOR DAVIS said she wanted time to read and understand the
suggested changes.
CHAIR DYSON suggested that Representative Weyhrauch's office
work with his office to address concerns, resolve issues, and to
isolate what cannot be resolved. After that, to circulate
copies of the proposed solutions on these specific issues -
including Mr. Wagoner's concerns - to committee members and to
others who are interested. He asked if it seemed do-able to
vote this out of committee at the end of next week.
REPRESENATIVE WEYHRAUCH concurred.
CHAIR DYSON said he thought there would be very few things that
there wouldn't be closure on.
SENATOR WILKEN mentioned that next week's focus on POMV [Percent
of Market Value] might affect scheduling.
CHAIR DYSON asked to be kept informed of scheduling conflicts.
MR. NOLAN then added to his previous testimony, saying he just
received a copy of version U. He referred to the top of page 8,
AS 13.52.045, and said, "pregnancy is back in here." He
commented that [subsection] (c) does not apply to EMTs or to
ambulance drivers when providing emergency services in the
field. He suggested that under the definitions, a better phrase
might be "health care providers" because depending on where one
is in the state, a field emergency medical service may be
performed by an emergency trauma technician, an EMT, a mobile
intensive care paramedic, an RN, PA, or in some cases a
physician. He said that under field conditions it can be
extremely difficult to determine pregnancy, and even when
determined, it is difficult to determine fetal viability. His
suggestion was that "everybody gets covered."
MS. SYLVESTER said that consideration was being given to
deleting everything after "does not apply to" and inserting
"health care providers or emergency trauma technicians trained
in accordance with AS 18.08.080 when providing emergency medical
services." She said this would cover all of the emergency
technician-type individuals in the field.
MR. NOLAN responded that he thought this language would work
because under the definition of certified or licensed "health
care provider," everyone is covered except for emergency trauma
technicians.
SENATOR GREEN questioned if the language "in the field" would be
included at the end of the sentence.
MS. SYLVESTER said she believed so because this would not be
applied in a hospital setting.
Before adjournment, CHAIR DYSON said that during the meeting,
the many good things said about Representative Weyhrauch and his
staff had been understatements.
CHAIR DYSON held CSHB 25(JUD) in committee and adjourned the
Senate Health, Education and Social Services Standing Committee
at 3:10 p.m.
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