Palliative Care Institue: Medical Perspectives on Death with Dignity & VSED (Law)

Palliative Care Institue: Medical Perspectives on Death with Dignity & VSED (Law)



I'm an internal medicine
doctor, and I've been with End of Life
Washington for six years now, and I've met over 100 clients. So the first part
of my talk I'm going to talk about voluntary
stopping eating and drinking. Only with the medical
aspects, because there are people following
me that are going to talk about other
aspects, and so I'm going to just tell
you how you die from not eating and drinking. So first of all, I'm
going to give you a list of symptoms
that will probably make you feel kind of sick. Because these are the
most common physical and psychological symptoms that
some terminally ill patients experience. Pain, fatigue, insomnia,
loss of appetite, shortness of breath,
nausea and vomiting, dry mouth, constipation, cough,
swelling, itching, diarrhea, dizziness, incontinence,
numbness, tingling, weakness. Kind of makes you feel
like you would want to die. The psychological ones
are depression, anxiety, hopelessness, feeling like
their life is meaningless, irritability, and if
you're caregivers, you've all experienced
irritability of someone you're taking care of. Impaired concentration,
confusion, delirium, loss of focus, and
loss of libido. So most of us wouldn't want
to stop eating and drinking. And for those of us
that can't follow a diet for more
than a few days, it would be the last
thing we would choose. But if you can put yourself
in these people's shoes, and people who
are terminally ill have often lost their appetite,
so it's easier for them to do this. And the way they die is
they become dehydrated, and once you become
significantly dehydrated, your kidneys fail. And so they quit
filtering your blood, and you don't get rid of all
the toxic metabolic products that your body produces
on a daily basis. One of the side effects
of kidney failure is you can become delirious. So it's very important
that if you ever decide to use VSED, or
somebody that you know decides, that you have to have
a very committed, supportive, environment. You need a very committed
and supportive physician, or hospice, if you qualify. Unfortunately, some
people that choose VSED don't qualify for
hospice, because no one can predict that they have
six months or less to live. Some people with chronic
neurogenic degenerative diseases, such as ALS,
MS, multiple system atrophy, no one can quite
predict that six month window, and sometimes
people with COPD, congestive heart failure
are also unpredictable. So sometimes these people,
who are experiencing symptoms for situations
that they find intolerable, choose VSED. And one of the
mechanisms for death with dehydration
and kidney failure is that your potassium
gets very high. And high potassium is
a medical emergency because of a variety of
arrhythmias of the heart, or abnormal rhythms. Most people fall into
a coma or fall asleep before those happen, so I
don't think most of the people would experience those
rhythms physically. I think the delirium
and the confusion is a bigger issue
with kidney failure. So basically it's a
process of dehydration that works for VSED. I'm going to talk
longer about death with dignity, because there's
so many other speakers that are going to talk about
the various legal aspects, the psychological
aspects of VSED after me. So death with dignity are
for those clients, patients, that have the six month window
and decide, for some reason, that they don't want to put
up with the symptoms they're experiencing. They don't want to
put their loved ones through the emotional or
psychological trauma of caring for them. They don't have the money,
maybe, for their treatment. Sometimes they hate the fact
that life is meaningless, that they're not having fun,
and they've lost their dignity. So these are some of
the reasons for people that choose death with dignity. And it's legal in our state. You have to have two physicians
that agree that you're within six months of dying. One of the physicians has
to write the prescriptions. The other physician
just has to agree that they know who you are. You have to be 18
years or older. You have to have a
terminal diagnosis. You have to be in your right
mind, so people with dementia or Alzheimer's disease
do not qualify. And you need to be
acting voluntarily. So the state's very careful
to put in provisions so that no one's ushering
their loved one away, or to their death, just because
they are worth more dead than alive. So often patients have
a hard time finding physicians that will help them. A lot of physicians
ethically don't feel like they can do that,
or they don't want to do that. They may be employed by
a Catholic employer that forbids them to help
people in that respect, or even talk about it. A lot of physicians
don't know we have the death with dignity law. We're trying to raise
the consciousness of more physicians. They may not want
to be bothered. May think it takes too long. Or they just don't
really know about it. So End of Life Washington
helps about 93% of the people that go
through the process of death with dignity. And we think it's
very important, because it's a nonprofit. It doesn't cost them anything. The volunteers make house calls. They explain to the
patient, and to the family, how the process works. They help them find
physicians that will be either the prescribing
physician or the consulting physician. The consulting physician
job is pretty easy. It's a simple page form
that says yes, they know the patient. They're not terribly depressed. If they think they're
depressed and using this as a form of
suicide, they can ask for a psychological evaluation. They have to check the
box that this patient is acting voluntarily, that
they know what they're doing, and let's see. I think that's all
that's on that form. It's fairly easy. The attending physician
meets with a patient. Both of these physicians have
to meet with the patient, and the patient has to
make the first request to one or the other of them,
or to their own doctor, or their
sub-specialist, say it's an oncologist, or a
sub-specialist of some– maybe a neurologist. You have to have
a 15 day waiting period between
your first request and your second request, and
that 15 day starts the day after you make
the first request. So if people wait
too long, they end up not having the two week span. In the meantime, they to meet
with the second physician that agrees that they qualify. And they have to– after
they've met both physicians, they have to sign
a piece of paper in front of two witnesses, and
it's called the written request for medicine to end my life in
a peaceful and dignified manner. And of the two witnesses,
one can be a family member, but one has to be a
non-family member, and it can't be either
of the physicians that are qualifying them. Once they've signed
that, the prescriptions can be written 48 hours later,
but they can't take them until they've hit the 15 days. So they can take the
medicines on the day of their second request,
but that they can't take it any earlier than that. So with the patients
that I've met, I'm typically the
prescribing, but sometimes the consulting physician. When they can't find
anyone else, End of Life calls me and says, would
you see this client. I typically write
prescriptions when I can, send it off to the pharmacy
with a letter saying, this patient wants this option. They're not ready yet. Because many patients I
meet really aren't ready. They want it as an option. And I often start my
conversation with them as, are you in a
hurry to take this? And some people are, because
of pain or disability. Most people say, well,
you know, I don't really– don't want to take it very soon,
but I really want the option. And we've heard over and
over and over from families and clients that once they
get this all in a row, they feel relieved. They just feel like,
I have an option. Whether I use it or
not doesn't matter. And 30% of the time,
people don't use it for a variety of reasons. Either they can't swallow,
or they become demented, or they become incompetent
mentally, or for whatever reason. We've even had occasions
where the volunteers go home on the day they've decided they
want to take the medicines, and all along the way, by
law, attending and consulting physicians have to keep
telling the patient, you don't have to do this. This is strictly voluntary. You can change your
mind at any time. And even we've had people
there with the medicine, and the patient
said, no, I don't think I want to do it today. Fine. And we go away. So there are lots of steps
there to make sure that this is what the patient wants. And the medicines have to
be– they're not an injection. And they have to drink it. It's a mixture of
medications that cause the patient fall
asleep within about five to 10 minutes. They're in a coma
within 15 to 20. And the time to
death is variable. The average is about
two hours, but it can go as long as four or five. And so we always have to warn
the family, and the client, that it's not a
pill that they take. And it's not going to
make them go away quickly. But they will die. We've never had
anybody not die when we've given them various
medications, because they've changed over time. And it's hard to predict
who's going to die in an hour, and who's going to
take four hours. So I'd like to read you a
thank you note from a family. And we hear this
all the time, but I think this kind of tells
you, it just gives you an idea of how thankful
the families are. Dr. Law, you came to our house
on a Saturday morning in April, pastries in hand, to write
a prescription for life ending medication
for my husband Scott. Throughout the 14 months since
his brain tumor diagnosis, he had expressed to
all of his doctors his desire to use the
Death with Dignity law when the time came that his
quality of life was gone. He felt abandoned when none of
them would help him with this, and he was so grateful to
you for coming to his rescue. He relaxed the minute the
meds were in the house. His escape hatch,
as he called it. As a family, we've decided to
be open and public about how his life ended, legally
and peacefully, so that maybe the next family
won't face the same resistance. Thank you for being a
light in our darkness. [APPLAUSE] So I tend to get
nervous and speak fast, so I suppose we have
some time for questions. Oh, yeah. Questions. Sally McLaughlin is
the Executive Director for End of Life Washington. She's here today. So if I can't answer
it, I'll refer to her. All right, fair enough. OK, so we have
time for questions. Yes, back there. Hi. I'm an American citizen, but
I live in Canada right now, working there as a nurse, and
both the nurse practitioners and the pharmacists are
part of the Medicaid assistance in that process. Do you ever foresee that
for us in the states, nurse practitioners and
pharmacists being able to prescribe and
be at the bedside? Oh, boy. [LAUGHTER] I think probably, as
the need increases. And nothing happens in
America unless there's an economic impact. Once there's an economic impact,
That will probably happen, but not before, is my guess. So right here in the front. Why is this not suicide? My perception is, the
person is actively taking his life, or her life,
and to me that's suicide. You know, it's semantics. We call it aided dying, but
euthanasia, and active– I mean, we can't– it's– that's a hard
one for me to answer, because that's
what most people– you probably never use
this, because of that idea. Right. OK? But the other people
don't feel that way, OK? I'll take it. All right. [LAUGHTER] So that is a very big debate,
whether it's suicide or not. First and foremost, in the
law for death with dignity, it directly states
it is not suicide. Obviously the law doesn't
tell us what words mean, but it says it's not
a suicide because it doesn't want to impact people's
health and life insurance. So on the death
certificate, what's written as the cause of death
is the underlying disease. What we have discovered
at End of Life Washington, is people who use
life ending medication to hasten their death, are
not committing suicide. If they had the choice to live
on, they would be living on. Suicide indicates you
have some life to live and you're choosing
to end it early. These folks are
hastening their death. They are already dying. They're already
terminal, and they're choosing not to
go down that road, but to pick the time and the
manner in which they die. So again, it is semantics,
but it doesn't look, feel, act like suicide. I've never met one
of these people who, if they had the choice,
they wouldn't have lived on. Thank you. Yes, over here. Currently, what is the cost of
the medications to the patient? Cost of the medication to
the patient is the question. It's about $600 is the lowest. The highest is secobarbital,
and it's anywhere from $3,600 to $5,000. Whoa. $5,000. Why is it so expensive? It's because the
drug company that makes it knew that they
could double the price and get away with it. How much is it in Canada? It's a Canadian company. [LAUGHTER] Yes. So in that regard, is
there any system in place to assist people
who would not be able to afford the medication? Some insurance companies
will pay for it. Not very many. Medicare does not. But we have had some
patients submit the forms to their insurance
companies and pay for it. Are there other mechanisms– Not so far. [INAUDIBLE], or– no? That might be something– Well there's the
Costigan Foundation The who? There's a foundation called
the Costigan Foundation that we can apply to for help. Yes, Hillary? I was wondering where
you would recommend, in your form in particular, the
End of Life Washington advance directive, to talk
about VSED and death with dignity, because
there's not really a specific area in
the advance directive to address those two things. So the question is, where
in the advance directive would you address your choice
for either death with dignity or VSED? Do you want to take this one? Yep, sure. So an advance directive
for health care goes into effect when you are
not able to speak for yourself. And if you are not able
to speak for yourself, you can't use
death with dignity. You have to be
contemporarily competent. So those two– we are going back
into our Alzheimer's directive, and we're going to put
in a codicil about VSED based on the conference
that we just were at. So I'm meeting with the
doctor Lisa Brodoff next week, and we're going to
be addressing VSED. Can I ask answer that? Oh, yes. Until the Alzheimer's
directive gets updated, the place where I
recommend clients to make their wishes
known as to VSED is just by adding a
supplemental narrative statement at the back of the Alzheimer's
directive, or the back of the advance directive. It can be handwritten.
it can be typed. We just want it to have
the same kind of formality as the directive itself in
terms of being witnessed, and then it carries
the same weight. And the Alzheimer's– for those
of you who are not familiar with the Alzheimer's directive,
it will be addressed later in the day, so I don't want to
spend a lot of time unpacking that question right this minute. Can you repeat what she said? So she said that if you
want to address death with dignity or VSED, that
you can add a narrative statement that should have
similar formality to the rest of the advance directive to
your own advance directive. So write an extra paragraph
that specifies what you want, and make sure that's
been witnessed. Yes? I have another question. I'm familiar with the
organization Compassionate Choices. I'm not familiar with
End of Life Washington. That's because they're
the same thing. Oh, OK. We changed our name. We changed our name. [LAUGHTER] Just to confuse everybody. OK, thank you. [LAUGHTER] Another question? Are there any physicians
here in Whatcom County that will perform that function? Yes. Yes, but I think the
thing that's concerning to me is that it's not a
very transparent process. And so one of the things
that's important to do is to contact the
Whatcom Medical Society. But I've been trying
to work with people to make the process
more transparent, and any ideas would be welcome. I have a suggestion. When you see your
physicians, talk to them about death with dignity. Ask them if you found
yourself in that position, would they help you? What was the question? They can't. Yeah, they can't. Because if– If they're PeaceHealth,
they cannot. If they're PeaceHealth,
they cannot. But there physicians
in our community who do not work for PeaceHealth. Then if you call End
of Life Washington, we can assign
physicians to help you. And people have various
levels of rule following. [LAUGHTER] [APPLAUSE] [INTERPOSING VOICES] I was just going to say, my
Grandma did go through and do death with dignity about ten
and a half years ago, in Oregon, and I was very young. And it was really
heartbreaking for us to not be able to find a second
doctor for quite some time, and so this is just– OK. OK, Paul. This– Just a question to follow
up on the suicide question. If people have it in
their homes for weeks, months, because it feels
good to have it there, is that permissible? You mentioned
volunteers, or does the– We typically don't
want the medications dispensed until the
day they take them, because we don't
want them to fall into the hands of children, or
people they're not meant to. That's what I was worried about. But you said that
they get comfort knowing that it's there. Well, they get comfort knowing
that all they have to do is make a call, and they
can get it the next day. Oh, OK. So it's not physically
in their house. No, no. Very rarely. Very rarely do we allow it.

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