Sno-Isle Libraries
Issues That Matter Forum, “Don’t Wait for a Crisis: Health Care Your Way”
Recorded October 22, 2014, Edmonds Center for the Arts
Video transcript
00:00:00 - 00:00:19
00:00:18
[Music and Credits]
MODERATOR (ED BREMER)
In the interest of full disclosure I – I do need to admit that I am a card-carrying member of the
Sno-Isle Library. And the question may very well be: Why aren’t you?
As I was driving down here this afternoon, uh, I do a radio program, a live radio program every
day at four o’clock so I didn’t get off the air until 5:00 and so I had to drive down rather quickly
through the rain to get here in time for this forum this evening and – and as I was making my way
down Interstate 5, I got behind one of those huge, luxurious RVs. And I thought it was a – a
double-wide mobile home that was making its way down the freeway. It was – along with all of
the stickers on the back of it that – all of the different states that they had visited, there was
another sticker that said: We’re spending our children’s inheritance. And it occurred to me that
that might be a very popular sticker in years to come to put on the end of beds in nursing homes
and hospitals – We’re spending our children’s inheritance . . . because of the costs of taking care
of us when we get old.
And that’s part of the reason why we are here this evening. We are also here to talk about the
need to make decisions now that will impact end of life, quality of life, decisions as your loved
ones, as we get older here. It can be overwhelming to be asked to make healthcare decisions for
someone who’s very ill or dying or no longer able to make those decisions. It can be even
tougher if you don’t have written or verbal guidance about those wishes, and sometimes verbal
isn’t enough. The lawyers, the doctors, family members – are going to say: Where is it written
down, that that’s what she wants?
But advanced care planning is not just about old age. A medical crisis can happen at any age and
leave you or someone you care about too ill to make these decisions for themselves. Even if
you’re not sick now, making healthcare plans for the future is an important thing to do, to make
sure that you get the care you want, or equally, you don’t get any care if you don’t want it, when
doctors and family members are making those decisions.
Tonight we have four distinguished panelists to speak on this very important topic. Uh, we have,
uh, the Library’s Executive Director, Jonalyn Woolf-Ivory; Reverend Eileen Hanson is Pastor of
Trinity Lutheran Church of Mukilteo; Scott Forslund is Director of the Snohomish County Health
Leadership Coalition; and Joanne Roberts is Chief Medical Officer of Providence Regional
Medical Center in – in Everett.
After opening comments from each of the-, the panelists, we will spend some time talking with
them. I will ask some questions of the panelists and then we will open the floor, to give you the
Sno-Isle Libraries, Issues That Matter Forum, “Don’t Wait for a Crisis: Health Care, Your Way,” Recorded Oct. 22, 2014, Video transcript
opportunity to ask questions, as well. And we are certainly urging you who are watching this
stream to participate on Twitter. Feel free to Twitter questions in for the panelists, as well.
When the time comes for questions, I will ask those audience members to raise your hand. When
the microphone comes to you, stand up. We’ll have a wireless microform-, uh, microphone for
you. We’ll ask you to identify yourself, represent-, whether you represent a specific organization,
which community you come from and which specific panelist you might want to address the
question to, or if you just want to direct it to the panel, in general. If you do have a comment that
you would like to share prior to your question, uh, that’s just fine. We would encourage you to
do that, but please, keep it brief and know that I will exercise my duties as Moderator here to
viciously rip the microphone from your hand –
[laughter]
-
and give it to someone else.
So, first of all, I would like to ask each of the panelists to just take a few moments, introduce
themselves and talk to the topic at hand for this evening, and we will begin, I think, with the
Library’s Executive Director, Jonalyn Woolf-Ivory.
00:04:58
JONALYN WOOLF-IVORY
Good evening. Um, it has been a – a pleasure to, um, be able to work with a number of different
organizations, to present a-, to present tonight’s evening. I am here, um, as a non-health
professional, to share a little bit about my own experience, um, in working with family members
um, to make some difficult decisions, some difficult choices, but, um, having the work done
ahead of time, to make that possible.
00:05:29
MODERATOR
Thank you. Eileen?
00:05:32
EILEEN HANSON
Um, I’m Pastor of Trinity Lutheran Church, Point of Grace in Lynnwood and in Mukilteo. Um, I
serve on the Steering Committee for the Snohomish County Health Leadership Coalition, uh,
particularly representing, uh, faith communities. But also, 70 percent of our county who is not
affiliated with a traditional faith community, bringing more of the spiritual voice to the
conversations of the various initiatives of the Coalition. So, um, for me, in terms of advance care
planning, I have been at the bedside of hundreds of people as they passed away, and have seen,
uh, very good endings and very tragic endings. And, um, my hope in-, in terms of having this
conversation is increasing the number of good endings at the end of life.
00:06:28
MODERATOR
Scott?
00:06:30
SCOTT FORSLUND
Good evening. I’m Scott Forslund and I’m – I’m here tonight representing the Snohomish
County Health Care Leadership Coalition and, uh, am really excited about the – the work that the
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Sno-Isle Libraries, Issues That Matter Forum, “Don’t Wait for a Crisis: Health Care, Your Way,” Recorded Oct. 22, 2014, Video transcript
community is doing, coming forward in this. Jonalyn, thank you for the work that – that Sno-Isle
has done. Uh, this – this effort is focused on improving economic vitality and prosperity of our
community more broadly through improvements in health and in health care value. But not
through the healthcare system trying to pull a lever. But rather through the ability of each of us,
as members of the community, to take back control over our own health. And, uh, the initiative
that we’re gonna be talking about tonight is certainly an important example of that.
00:07:19
JOANNE ROBERTS
Good evening. Hi, I’m Joanne Roberts and I am the Chief Medical Officer at Providence
Regional Medical Center up in Everett. I am a Hospice and Palliative Care doctor and I’ve been
doing this work in palliative medicine for about 20 years. And like Eileen, I have spent time with
hundreds, maybe thousands now, of folks near the end of life, and what I’ve seen is that these
times that we all fear at one point in our life or another, are some of the sweetest, most wonderful
times in our entire lives, and sometimes they’re the most horrible. Uh, families go through times
of tremendous healing at-, in the last days of someone’s – their loved ones’ lives. Sometimes
they go through times of tremendous agony. And I think my work with the Health Care
Leadership Coalition is to be sort of the voice of healthcare, although I don’t think this is at all a
healthcare issue. We are just technicians to your values.
00:08:25
MODERATOR
Thank you. Let me begin by asking . . . Eileen to flush it out a little bit. You said – and also,
um, also for . . . for the others, as well. But and for Joanne, particularly. Eileen, you said that
you’ve been at good endings and you’ve been at bad endings. Can you expand on that? What’s a
good ending? What’s a bad ending? And what makes the difference?
00:09:00
EILEEN HANSON
A good ending is when the family has had a – a conversation about the end of life prior to
entering crisis. And they’ve had conversations about the values of the person who is dying, um,
and how that person wants those values honored by all of the family. That includes the helicopter
child in New Jersey who, will at the last minute, come in – and having those conversations, that
child from New Jersey will still know what mom wanted and will respect the process that’s been
put in play by all of the family
There is a sense of, um, healing, as you said, reconciliation of all the outstanding regrets. There’s
been the forgiveness, the expressions of love and the sense of closure and peace and the
permission to leave. Um, that’s a good death, as I’ve experienced.
The more tragic is if there has not been that commu-, uh, communication in advance of the crisis.
That’s when you have the helicopter child who has unresolved issues, wanting to stop the
process. And say: Wait, wait, wait, wait, wait. We can’t – we can’t let mom die or dad die. We
need to intervene and – and suspend the situation. Um, that – that raises a lot of emotional chaos
in which all of the crisis of the last 40, 50 years come into play. And, um, all the childhood
dynamics come into play and there is, what I would describe as - as a high level of conflict, a
high level of anxiety and that peaceful ending, um, is surrounded instead by conflict. And, um,
and that’s – that’s the tragic ending.
And it doesn’t end when the patient dies. That remains an imprint on that family in a destructive
way for – for years. Um, and – and is very destructive to relationships.
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00:11:12
MODERATOR
Joanne, you wanna –
00:11:14
JOANNE ROBERTS
Sure. I couldn’t have – so that’s beautiful. Thanks. Um, I’ll-, I’ll put the technical side to this. I
come from where Eileen is talking, but the technical side – let me describe what it looks like, uh,
and – and from the view that I’ve had working in the hospital.
Um – we all are gonna get older. We’re all are gonna get more frail and a common scenario is a
couple in their 80s, living at home – one maybe has dementia, the other one’s the primary
caregiver. The primary caregiver gets up in the middle of the night to help their – their loved one.
They fall, they break a hip. The caregiver breaks the hip, not the person with dementia. They
call 911. They get to the phone, call 911, comes into the Emergency Department. There’s no one
to have a conversation with. The person who has broken their hip is delirious. They’re not able
to speak for themselves. They go to the Intensive Care Unit. They get their hip repaired. The
get pneumonia. The become-, the go on a ventilator. They can’t talk. There’s no one to care and
the person at home is deteriorating. And then the family may be out of town.
This is really common. This is so common in-, in my world. This is – this is more common than
not, frankly. And the conversations earlier could have prevented that. Not that it could have
prevented the broken hip. Not that it could have prevented the surgery. But it could have
prevented the way that that journey occurred. So that when the pneumonia developed, it was
pretty predictable. Perhaps it wasn’t a time to seek aggressive care. Maybe it was – maybe it was
in the values of that family but perhaps it wasn’t. Usually it’s not.
00:13:12
MODERATOR
Jonalyn, would you like to –
00:13:14
JONALYN WOOLF-IVORY
Well, sure. I – I think kind of following up on Joanne’s comments about those conversations,
um, none of us really look forward to having those conversations. It’s hard to even think about
losing a loved one and it’s even harder then to raise what I call are the what-if questions. And in
a time when people are really capable of providing good answers, and I think about the what-if
questions such as: Well, what happens, Mom, if you’re terminally ill? How – how do you want
to proceed? Um, what – what if you’re in a terrible accident? Um, what if your – your body is
doing great – you could run a hundred miles – um, but your mind is not well anymore? And I – I
did not, as, um, as the youngest child, want to, um, ask those questions, but I think I had the good
fortune of being in a family where those questions had been asked before. And so in the case of
my father, who passed away a number of years ago, um, it was very clear what his expectations
were. And that was clear to my mother and to myself and what was the most helpful is that they
had completed documentation that would allow his wishes to be taken care of. Even with all of
that sort of set aside, it still required an advocate. He still required an advocate. And we still had
answers or questions that – that we needed answered, too. And I can remember, um, when it
became really clear that we were not looking for, um, a repair or a fix, um, we – my mother and I
needed to know: What – what would the end be like? How – how would we know it was
coming? And what should we do?
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I grew up on a fa-, on a farm. My parents still lived there. So a long ways away from medical
help. So what do we do? We – do we call 911? We asked that question. Do we call the doctor?
Do we call Hospice? Do we call the mortuary? Thank heavens we asked the question: Do we
call 911? Because we were given some very careful and really – really thoughtful advice and,
um, it was explained, you know, discussed with us, um, about what our goals were, and what
Harold’s goals were. And, um, if we wished for, um, him to receive treatment, um, then we
should call 911. If that was not his choice, then that was not an option that we should – that, um,
we should, uh, consider. And I think that one question was – and the answer that we got to that
question was so very helpful for my family.
00:17:00
MODERATOR
Now, was this an incident with your father in this situation where he was in ill health and the
prospect of death was imminent? And would that conversation be the same conversation if your
father was in good health but had a heart attack, suddenly, unexpectedly?
00:17:22
JONALYN WOOLF-IVORY
Well –
00:17:22
MODERATOR
Do I call 911? Or I just let him lie there and die?
00:17:26
JONALYN WOOLF-IVORY
Well, in this case he was terminally ill, but those conversations had really happened before that.
And, um, so I think, especially, my parents, the two of them had a very solid understanding of
what their – how they wished to proceed. And what their values were. And, um, I – I felt that as
the-, as the daughter, it was my responsibility to make sure that the path that he wanted, he was
able to have.
Um, I think if it had-, if he hadn’t been terminally ill and he had been in a farm accident or
something, I still think we would have had a sense of how he-, how he would like to be treated.
Um, and I – I believe I can say that pretty-, pretty confidently, uh, about that.
00:18:28
MODERATOR
Scott, we haven’t heard from you. Would you like to contribute to this portion of the
conversation before we –
00:18:35
SCOTT FORSLUND
Well, I’d like to but you’re – you’re hearing from the people who are – [laughs] I’m – I’m
gaining from it, I’ll tell you that. Maybe I’ll put this in a little bit of context.
So, uh, this – this initiative is focused, obviously, on basically giving people better odds of
getting care in line with your personal values, when you’re facing a life-threatening illness, or –
or a life-threatening situation. Um, it may be and end-of-life, uh, scenario. It may be something
that winds up not being end of life. But it is, in any case, it’s, uh, . . . it’s tied to issues that go far
beyond, um, the personal.
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Sno-Isle Libraries, Issues That Matter Forum, “Don’t Wait for a Crisis: Health Care, Your Way,” Recorded Oct. 22, 2014, Video transcript
What this coalition’s interest in doing this is – is basically recognizing that as a society, as a
county, uh, we are faced with, um, increasing threats in terms of resources needed for healthcare
and a recognition that oftentimes the care that people want, if they’re given the opportunity to
think through it, is not in line with, uh, the default care that the healthcare system is going to
provide. Uh, I – I think, although I don’t like to use this statistic because it puts the focus on the
point of death, and that’s not what this is really about at all. But I think, Joanne, you’ve talked
about the fact that something on the ordie of-, order of 70 percent of people, if asked: How do
you wanna spend your final days or hours? Will say, you know, I wanna be at home. I wanna be
with family. I wanna be in a peaceful setting.
And yet, that occurs for about 30 percent of people. Now, for the 30 percent who want to – and I
– I have some people very close to me who are in-, in the-, in the-, in the realm where they’re
saying: You know what? I wanna hang on as long as I can. I wanna know whatever technology
that can be used to, um, to-, to keep me goin’, uh, is in use. Um, the nice thing about this is that
this is focused on makin’ sure, again, that people are getting care in line with their personal
values, whatever those values are. And that if that’s happening, it’s not only a more healing and
positive experience for individuals, but it’s actually a more, uh, healing and positive experience
for – for our communities.
The – the group of leaders who came together to form this coalition, uh, in a banquet room, uh, at,
uh, at Lombardi’s up in Everett in 2010. This is leaders from business, from healthcare, but only
4 out of 13 on that Board are healthcare. Three out of four are not in healthcare and that was
intentional. Uh, Education, non-profits, human services, the faith community – they came
together and – and recognized that there is something as a community that we need to be doing to
put our community on a different trajectory, not only to improve the health, and healthcare costs
issues, but also to improve the overall economy. Um, and – and in the economic vitality and
prosperity of our community.
Gary Cohn, who is the Superintendent of the Everett Pub-, Public Schools, understood that night
at Lombardi’s and talked about the fact that this increase in healthcare risk and healthcare cost,
extending beyond our ability to pay, is threatening and competing directly with our ability to pass
school levies for kids.
Troy McLellan, the Economic Alliance CEO for the county talked about the fact that he
recognized that these same situations are reducing the chances that state transportation funding
can be available to help keep our key employers in town, which we know if employment and
education creates a really virtuous cycle in terms of health and – and well-being.
So they’ve come together to say: Where can we begin with some initiatives like this that put –
uh, put the community in charge. And I hope that Eileen will, uh, talk a little bit about some of
the work that’s being done to – to create an network of volunteers – that is, YMCAs and churches
and senior centers, uh, and others who are – are taking up this effort and really looking to take-,
again, to take back control of our health.
00:22:58
MODERATOR
Well, uh, Scott, just . . . you mentioned that 30 percent of the people are able to have their end of
life the way they want it. What separates the 30 percent from the 70 percent? What did the 30
percent do that the 70 percent didn’t do?
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00:23:17
SCOTT FORSLUND
And I’m – I just pointed to Joanne, as you’re beginning to answer that question, that I want her to
answer that question so –
00:23:22
JOANNE ROBERTS
It’s a conversation. And this is not rocket science. It is just a conversation. And, um, I – I’m just
– I’m gonna pose a question to you all. Who has sat at the bedside of a loved one near the end of
life? [pause] Who considers it a healing experience? [pause] OK. So maybe half. Maybe half.
A conversation can make that a healing experience.
So on the back of my business card, I carry four questions, and – and this is the four questions
that I used and practiced all the years that I worked. But imagine, if you had this conversation
with you, yourself, with your family, with your doctor, with your friends – so the first – The
really core question is not about how do I wanna die – it’s how do I wanna live the rest of my
life? And what are my hopes? And what are my fears? And how do I consider my life
circumstances now?
If we can talk about those four questions, imagine going to a doctor’s office and talking about
those. Have you – who’s had that experience? I’ll bet no one here. But we can. I mean, this is
what we’re trying to do in this community, is just get those four questions on peoples’
conversations with one another, with themselves, with their families and get the doctors to be
ready to hear those conversations. It’s not rocket science. It’s just that simple.
00:25:02
MODERATOR
How do you initiate? Is there a best time to initiate that conversation? Let’s, uh, Jonalyn, when
did you have that conversation? How did that conversation with your father start?
00:25:11
JOANNE ROBERTS
Um –
00:25:11
MODERATOR
Let’s, uh, Jonalyn, when did you have that conversation? How did that conversation with your
father start?
00:25:16
JOANNE ROBERTS
I–
00:25:18
JONALYN WOOLF-IVORY
Um –
00:25:19
JOANNE ROBERTS
Oh, I’m sorry. I thought he was talkin’ to me. You go.
00:25:22
JONALYN WOOLF-IVORY
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OK. Um, actually, the conversation in my family probably started, um, oh, a number of years
before that, when my grandmother was ill. And, um, and so there was – it – it just became a – a
topic of how we wanted to, uh, uh, move forward in our lives and what – what was important to
us. And um, and in the case of conversations with doctors, I – um, I do remember going to a –
the doctor’s office with both my parents and having a conversation not unlike what, uh, uh, what
Joanne was talking about. Is, you know, these are the options. Um, Harold, how, um, how do
you want to proceed? And that was really a question that my mother brought into that
examination, uh, room. And so that there could be a conversation, and then I could hear that, as
well as, uh, as the – the physician.
00:26:43
MODERATOR
Joanne, you wanted to – to speak, uh, just before, um, Jonalyn started. So did – when do you
have this conversation? How do you initiate this conversation, uh, if your mother is 88 years old
and frail? I can see that that conversation could come up. But if your father is 52 years old and
in good health, it – it’s not a conversation that’s going to be an easy one to initiate. But he could
be in an accident the next day.
00:27:16
JOANNE ROBERTS
Well, I can tell you, this is the conversation I had about 15 times a day for about 20 years, and it’s
an easy conversation to have, really. If walking into someone’s room in a hospital or in my office
when I was in primary care and say: So tell me what’s goin’ on for ya. You’d be amazed at what
people say to that. You know? We have a conspiracy of silence between doctors and patients,
where no one’s really willing to ‘fess up. But if someone just says: So – so what’s going on for
you? I probably – half the time in the hospital when I’d be called to see a patient, they’d say:
Well, I’m dying, Doctor. It’s sort of makes the conversation easier to have.
And I had this, you know, I – I’m like you, I had this conversation with my parents. I grew up in
the South where death is a, you know, it’s kinda like a sport, I think [laughs]. Going to funerals is
what you do in the South. And my mother, you know, I used to be the one to go around: I don’t
wanna talk about it. I don’t wanna talk about it. But my mother talked about it constantly and at
the end of her life, she was worried because the doctors were saying: We want – we think you
need this device in your heart. And I said: Mom, does that fit what you had said all the years?
Oh, yeah. Oh, yeah. And she died a couple of days later. It was just very sweet.
00:28:43
MODERATOR
We’re goin’ to open things up to questions from the audience and so if you do have a question,
please raise your hand. We’ll get the microphone over to you. And please stand and, uh, if you
are with an organization, please let us know with what organization, and if you have a question,
to whom you would like to address the question.
00:29:07
RITA MILLER
Uh, my name is Rita Miller and I’m representing a conversation we had at the Senior Center in
our current issues class this morning. The idea of dignity with death came up – the law in
Washington state. I would like someone to say exactly what the law is and then there-, there were
people in the class who believed that not only could the hospital override your written directive,
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Sno-Isle Libraries, Issues That Matter Forum, “Don’t Wait for a Crisis: Health Care, Your Way,” Recorded Oct. 22, 2014, Video transcript
but that certain hospitals, which are ruled by certain religious groups, would indeed keep you
alive despite your written directive. I would like the answer to this, please.
00:29:44
UNIDENTIFIED MALE
That was on 60 Minutes – just last Sunday.
00:29:49
RITA MILLER
I’m talking specifically here. Does 60 Minutes cover this area?
[laughter]
00:29:52
JOANNE ROBERTS
I think I’m just gonna answer this one. [inaudible]
00:29:57
UNIDENTIFIED MALE
[inaudible] person who gave their father morphine, uh, and it was [inaudible].
00:30:02
RITA MILLER
I wanna know here, now, the answer to this.
00:30:05
UNIDENTIFIED MALE
Oh, no, I – I’m not arguing with you.
00:30:06
MODERATOR
Joanne? Joanne, can you speak to that?
00:30:07
JOANNE ROBERTS
I think I am supposed to take this question so – So, yes. I mean, I – I – I have talked about this at
length. I’ve given lectures about it. I’ve – and I’ll represent Providence right now because it’s a
Catholic health organization.
Um, I don’t know the particulars of the law. And I mean, I know basically you have to have your
cognitive ability, you have to request it and there has to be a waiting period and a second
physician involved. Um, but I don’t know exactly what it is. I have worked with folks at
Compassionate Choices but, you know, I have never prescribed nor personally will I because
being a palliative care doctor, I really believe that first of all, physician-assisted suicide can be an
easy out for the system. I want to make sure that the system is able to provide the care that folks
deserve and – and really want.
That said, I do believe that these conversations around death with dignity are wonderful
opportunities for that conversation to be had. So when someone – and I’ve had two patients ask
me. In all the time I’ve worked in this field, I’ve had-, only have had two patients ask me. I work
in the hospital so people use-, usually don’t have their faculties when they come to me. But the
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two patients that asked, I sat down and said: So tell me why you’re asking. Tell me why you’re
asking. Neither patient followed through but I would have been perfectly comfortable to have the
conversation.
Providence, as a system and I – I think I could speak for all of the Catholic systems that work in –
in Washington – they don’t get between a doctor and a patient. What happens between a doctor
and a patient is sacred and it’s considered that way by the organization.
00:31:56
MODERATOR
Or are you saying: Don’t ask, don’t tell?
00:31:59
JOANNE ROBERTS
No, I’m not saying that at all. I’m saying: What happens between a doctor and a patient is
sacred. I mean, it – it’s – it’s not an organizational decision. It’s a personal journey.
00:32:12
MODERATOR
Scott, is – is this on the agenda of the Snohomish County Health Leadership Coalition – the-, this
issue?
00:32:18
SCOTT FORSLUND
It absolutely is on the agenda, but it’s a pretty simple, uh, a simple question to ask, and it goes
back to what I had said earlier. What this is about is giving people better odds of getting care in
line with your personal values, whatever those values are, when you’re facing a life-threatening
illness. And what you’ve heard from a pastor and what you’ve heard from a physician and what
you’ve heard from a community leader or an individual are three perspectives on the fact that
many times the healthcare system – and it’s not just the Catholic Health Care System, by the way
– If Cathe Clapp from Swedish Edmonds were here tonight, she would talk about work that
Swedish Edmonds has done, with a fella named Dick Stewart, who’s a part of this coalition –
working to – to do the same kind of work as a part of-, part of this work. Because of what they
see, she said: So often I will see people come into the Emergency Room and see the process that
they’re gonna walk through and ask this physician what that default process is. And she said: It
is heartrending. And I ask myself: Why didn’t this person have these conversations? Why didn’t
they have an advocate in place? Why didn’t they have the – the Advanced Directives in place so
that they could have what they wanted to have. But instead, they’re gonna have what the default
is that we have to give them.
So the simple answer, again, to this is: If you know what the issues are – and sometimes they’re
not that easy to anticipate. For instance – a ventilator – what is it about a ventilator? Well, one of
the things I’ve heard about a ventilator is: You have a ventilator and you can no longer
communicate with your loved one. You can’t talk anymore. And depending on where a person is
in their life, that might be a really important thing – that they’re able to talk.
So it’s – it’s clearer on some of the practical issues associated with choices or decisions that
you’ll have to make. Having conversations about your own personal values, having
conversations with your loved ones to ensure they know where you’re comin’ from. Making sure
your physician is aware. And then you’ve got a better shot, to answer your question directly,
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wherever you’re at – whether it’s a Catholic health system, whether it’s not – of getting care in
line with your personal values.
Death with dignity is kind of a non-issue from the perspective of this coalition. We’re not for or
agin it. What we wanna make sure of is that people are aware of their values and have a better
shot at getting care in line with those values, and that takes some pre-planning.
00:34:59
MODERATOR
I have another question here in the front.
00:35:02
CAROL SPADE
I’m Carol Spade and I’m with Friends of the Mill Creek Library and in relation to the question
that was just asked, my husband went into a out of-, outpatient facility for a minor, you know,
outpatient acceptable procedure. With directives and we had to, at that point, sign a paper saying
that we realized that this facility did not honor Advanced Directives, etc. And my question is:
How can that be lawful?
00:35:34
JOANNE ROBERTS
And that – that is a pet peeve of mine. Uh, and it’s – it’s about – so where that discussion comes
from – and I was just having it with a friend at the Everett Clinic the other day, who’s another
palliative care doctor. Where that comes from is the anesthesiology community. Because when
we undergo surgery, we are-, you -, we are receiving the same technology as we might receive
during a resuscitation procedure. So we’re on the – artificial breathing machine. Like Scott said,
you can’t talk during surgery. You’re unconscious. Your life is being supported by another
human being during that time. The anesthesiology community feels that that is equivalent to
resuscitation so if you insist that you can’t be resuscitated, they can’t give you anesthesia.
I don’t particularly agree with that interpretation but it does seem to be common. It’s not about
organizations. It’s just about one view of one-, and it’s just about the surgery, itself.
00:36:32
MODERATOR
And then so how do you get around that?
00:36:34
JOANNE ROBERTS
We have conversations – many, many conversations and yes.
00:36:40
SCOTT FORSLUND
I think just building on this a little bit, too. Um, this – the – we can, as members of a community,
take back control of – of our own destiny, broadly? And certainly of our healthcare choices.
And it’s not a perfect system. And getting – oh, becoming aware of what some of the issues are
and being in a place where you’ve got a better shot – based on the cards you’re dealt – of, uh, of
getting what you want. But ultimately, being in a place where you can help to, uh, uh, to
influence policy. Um, to ensure that – that the game rules, if you will, are – are, um, more
amenable. That – that’s where this is all kinda going. And the fact that you are all here tonight,
uh, is probably the most profound and important piece of this. We’ve gotta-, we’ve gotta have
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this become a public conversation. That one where we are equipped and we’re – we’re calling
the shots so –
00:37:34
MODERATOR
Any other questions? The –
00:37:36
JOANNE ROBERTS
Can I – can I just say one more thing about your-, your question? I – I mean, to get-, to Scott’s
point – we’re obviously not serving you well if we can’t adapt to your-, to your values. I mean, it
– to be blunt about it. And that’s what we have to learn. Is: That it is your values and that this,
again, it’s not about the end of life. It’s about what’s important in the journey between here and
there. And that’s – that’s on us.
00:38:08
UNIDENTIFIED MALE
What do you do if you find yourself, um, in a family where it’s not OK to talk about these kinds
of things? And you – you try and talk to a parent or to a sibling or uncle or aunt or someone
you’re clo-, somethin’, someone you care about. But every time you bring it up they say: What
are you trying to do? Kill me off early? Or – or – um – I – I don’t wanna talk about that right
now. But you can really sense that it – the time is coming where you need to have those things in
place, but they’re not really willing to do it. How do you – how do you move them towards that?
Or, do you, at some point, decide: Well, if we can’t talk with you, then we need to talk amongst
ourselves about what we – what we do going forward.
00:38:54
MODERATOR
And before you answer that question, could we get you to introduce yourself?
00:38:56
KEN HARVEY
Oh, I’m Ken Harvey and I work for the Library District but I’ve got, uh, an aging mother and –
and mother-in-law.
00:39:07
EILEEN HANSON
Could I – could I take a stab at that?
00:39:08
MODERATOR
Absolutely.
00:39:09
EILEEN HANSON
Um, I just, um, met with a fellow Pastor this morning about hosting conversations in the church.
She wanted to have this conversation, the classes that the Coalition offers in early December prior
to the holidays so that they could normalize and move upstream that conversation before you’re
in a crisis situation. The document and tool that we’re giving our classes to kind of begin the-,
those awkward conversations – we hear it from children who have concerns about a parent, but
also, a parent whose children wants them to be immortal and serve cookies forever.
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Um, so one of the documents that we give, um, in the class is the-, is the Advanced Directive.
Again, a document that, um, that translates the conversations. What we don’t start with is – we
have a choice of – of who’s gonna be your healthcare agent? And what are the medical
treatments that you want?
Don’t start the conversation with that legal emphasis. Instead, we go to – to the latter wishes,
which is: My wish for how comfortable I want to be. And it’s like, I wish to have my favorite
music played. Whenever there’s a conversation about me, it’s – Mom, you love jazz. You know?
Is – is that something that would be comforting for you?
I had one person who wanted Chanel #5 in their room [laughs]. How do you start with Chanel #5
as an entry point into the conversation? Another person loves their pet and had talked about how
they want-, and how comforting that pet is to them.
How do you enter through those sorts of normal, everyday window opportunities of how
comfortable you want to be? Another consideration is how do you want to treated? Um, and
what I wish my, um, what – the fifth wish is my wish for what I want my loved ones to know,
which always starts about love and forgiveness and reconciliation and healing of relationships.
So how are those entry points into the more legal aspects of healthcare agent and medical
treatment options? And those opportunities exist around a holiday table, but also at the beginning
of new years and resolutions and throughout the – the whole year, in very simple conversations if
your intentional about it.
And that’s what we’re hoping to do in the classes is equip people, in meaningful ways and take
home, um, you know, uh, um information ways, to equip them to be ready for conversations with
loved ones, um, as they arise, or are more intentionally scheduled.
00:42:16
MODERATOR
Is that pamphlet that you were referring to available online? How would someone get a hold of
that?
00:42:20
EILEEN HANSON
Attend our classes – [laughs] – that are scheduled. There’s a sign-up, I saw at the front for, um,
attending classes. But we offer these, um, all of this information is freely given and shared and,
um, the hope is that if we were just to distribute it, you would not have the – the, um, education,
conversation about how to actually use it, and how important it - it needs to be in terms of a
longer process of conversation, reflection on values and then documentation.
00:42:57
MODERATOR
Well, let me explore the – the concept of – of the family dynamic a little bit more because this
conversation is taking place between a mother and a daughter or a mother and a son. The
brothers, the sisters are scattered all over the country. When the final decisions are being made
whose conversation takes precedent? Who does the doctor listen to? Mom would never say that.
I know mom would want to live – she’s a fighter.
00:43:31
EILEEN HANSON
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That – that’s why all of these conversations need to happen upstream with all of the people
involved – even the estranged one that’s difficult to talk to – You’ve got to be able to engage.
Um, so it’s not only the-, the child or the relative or the spouse or the neighbor who’s designated
as the healthcare agent. Um, it’s also that the-, that all of those who were not, who can support
and understand what the – the person wants and be supportive of that healthcare agent. Again, to
avoid those conflicts, intentions, well in advance for when you’re in a crisis.
00:44:13
MODERATOR
And – and does that information - you mentioned documentation – Is it enough if mom handwrote on a piece of paper?
00:44:22
EILEEN HANSON
Ab- absolutely, as long as you have two witnesses.
00:44:28
MODERATOR
And for the doctor and when-, in this dynamic, you-, you’re in a room with the – the children and
they’re not in an agreement as to what happens or what should happen. What role are you, as the
doctor, going to take?
00:44:45
JOANNE ROBERTS
I’ll ask the –
00:44:45
MODERATOR
Are – are you as – as the doctor of palliative care – Well, we’re going to do everything we can to
–
00:44:50
JOANNE ROBERTS
Right.
00:44:50
00:44:52
MODERATOR
to keep her alive for as long as we can.
JOANNE ROBERTS
Right. And – and I – and what I try to do, and first of all, I think families die the way they live.
So whatever there’s – whatever dysfunction there is – and all of our families have some
dysfunction somewhere – those get magnified at that time. And that’s , I mean, that’s – that’s
what keeps me in the-, keeps me in this work all these years is to – to work with families during
crises like that, when the dysfunction really is showing itself. And – and to help bring them back
to what Eileen said, and you know the-, the easy questions are: Well, what would your mom
have said? What would your mom have said? And – and when there has been a conversation,
then it becomes: What did your mom say? What did she say? And- and then the families, they
listen to one another. And even if they disagree, at least they’ll know what their disagreements
are because not all wounds are healed at that time. But if at least the values have been shared and
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it’s the person’s values who’s actually going through the death, it shapes the family’s values, too,
as they have the conversation. It’s amazing to watch these conversations.
00:46:07
MODERATOR
And the – the advocate that was mentioned earlier, where does the advocates come from and
what role does he or she play?
00:46:17
EILEEN HANSON
The advocate or healthcare agent or durable power of attorney for healthcare, there are ma-, there
are many terms to give to this person. The – the qualities that you’re looking for in this person, a
lot of people default to either spouse or child. And we just encourage that they expand their
circle of consideration because what you’re looking for is qualities in a person. Is: Can this
person, um, handle stressful situations with a lot of changing information? Will this person, um,
actually live out your values and not their values? Are they able to listen and advocate for you
even if, um, your values may be different from theirs? Are they, um – are they within relative,
um, I guess, proximity should you have a crisis? What we advocate for is not just one healthcare
agent but a secondary backup healthcare agent. Um, and sometimes a third one, just to make sure
there is someone there to respond, um, with a consistent understanding of what that individual
wants. So –
00:47:32
MODERATOR
And – and to find this person, what super term do you use on Google?
[laughter]
To have this person’s name come up at the time that you need it?
00:47:42
EILEEN HANSON
Right. Well, well it’s – OK. I’m just referring to our kit again [laughter]. What we have is we
have a healthcare agent information form that kind of spells out the responsibilities and
expectation of that healthcare agent, that the person can actually give that person and say: This is
what’s expected and here’s some of the questions that we can, um, we can, um, engage in to
prepare you for that. Um, it’s an imperfect system, but we also have wallet cards that – that
people can carry around, that says: This is my healthcare agent and here’s their contact
information. This is my physician. I have an Advanced Directive. Here’s the document. Here’s
where it is and this is where’s it’s filed.
So it’s – it’s trying to again equip the public, um, in as way-, many ways as possible, um, to let
the – the medical, um, team know that they have an Advanced Directive. Here are the people
who will speak on behalf of me if I’m unable to speak.
00:48:45
SCOTT FORSLUND
And here’s where you get to stop being the audience and start being engaged. Because, uh, and
maybe you can take a moment and talk a little bit about the network of volunteers, uh, who-, who
has been put together, who’s trained and certified, right on from the Washington State Patrol
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background check through personal counseling, uh, and these are I think you’d mentioned the
Edmonds, uh, uh, Senior Center this morning. Michelle Rayton [SP] is an MSW who is with the
Senior Center and has been trained, certified as – as a volunteer facilitator and is teaching these
classes. Terry Huffer, who is a YMCA Senior Programs, uh, uh, manager at the Mill Creek
YMCA, who has just gotten on fire about this and has the whole Silver Sneakers Group on to it.
So maybe, Eileen, you can talk a little bit about the network you’re building and – and the offer
that could be in front of all of these people, too.
00:49:47
EILEEN HANSON
This – this is a grassroots community effort. Um, there is education among physicians but in
educating the – the public, our hope is to reach 1500 people every year. And that is not a
professionalized effort. That is a volunteer grassroots effort in which we need the community to
come together. We are training volunteers in four different roles: One is to facilitate the classes.
If – if you’re comfortable with that. The other we’re calling docents which are more of the
individual, uh, people who love individual conversations that can troubleshoot any questions that
come up as that person considers advanced care planning and documentation. We need
community advocates in all of the different social works. If you belong to a Rotary, can you
advocate for this conversation and introducing at least the movement within a Rotary setting, or a
faith community setting or in a gym setting, or in your – in your place of employment. And the
fourth one is again, administration. This takes administration just in keeping, um, if you’re good
at office work and tracking details and information. We need all those four different roles and
again, it depends on volunteers from the community who think that this is an important
conversation to have.
00:51:15
MODERATOR
And contact information for you on the table in the back?
00:51:17
EILEEN HANSON
Yes. Yes, contact –
00:51:19
MODERATOR
Are there other questions this evening from – we have-, we have a couple of questions. Go
ahead, Sir.
00:51:25
HAN STONKERS [SP]
I’m Han Stonkers [SP] . I’m a retired Family physician and I’m – I’m sorry to – sorry I
interrupted uh, but I just wanted to put a plug in for last Sunday’s 60 Minutes. It had – it dealt
with the-, the states that had Aid in Dying. It gave a – uh, a very poignant example, but then had
a really, very excellent – very excellent – um, Dartmouth physician who talked about that
basically, palliative care – if-, if someone is – needs to die then – then it’s a kind of a failure of
palliative care.
So, uh, and I also wanted to put in a plug for the Peoples’ Memorial Association. The, uh, it’s a
1939 founded cooperative for – for funeral homes and it’s a discount and it recognizes – it was
formed because at the time of death, the last thing you think about is – is price and you’re just
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very vulnerable to being up-sold. And, uh, so the – I actually have a few, uh, pamphlets on the
Peoples’ Memorial Association back there. Thanks.
00:52:30
MODERATOR
All right, thank you very much.
[pause]
00:52:38
MARCEL ALLEN
Hi, I’m Marcel Allen and my question is: How easy would it be for us to get one of those cards
Eileen was talking about when we got our library card? Make it easy. Start it young. ‘Cuz I’m
32 and I put two people down this year and it was not fun, and it’s gotta start young because, this
room – I’m – I’m the minority in age and the young-, the younger people need to start. Start it
with their library card. That could be so easy. Couldn’t it?
00:53:01
EILEEN HANSON
Perfect – perfect.
[laughter] [applause]
00:53:05
MODERATOR
Or the driver’s license?
00:53:08
MARCEL ALLEN
Yeah. Perfect.
00:53:10
MODERATOR
How long is a document that we would be talking about dealing with these issues valid? If – if
something like that is made in your 50s and now you are in your 80s, but you are unable to
articulate? Is that valid? Is that going to take precedence over a conversation that you had with,
uh, a daughter that said: You know, I’ve changed my mind since I made that and I – I wanna go
for broke and be kept alive as long as possible. Which – which takes precedent then and how do
you work with something like that?
00:53:46
SCOTT FORSLUND
You know I – uh, well, a good-, one question is: How long is it val-, valid? I guess another
question is: How long should it be valid? And Joanne, you’ve talked about, uh, e-, even when
folks think they’ve kind of worked through this –
00:54:02
JOANNE ROBERTS
Yeah –
00:54:03
SCOTT FORSLUND
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Maybe they haven’t, I – I wanna say.
00:54:04
JOANNE ROBERTS
So I – what Scott’s referring to is there was a study done years ago, back when I was in
Fellowship, of, uh, spouses. So who should know my values better than my spouse, right? So
they surveyed spouses and they surveyed the patient, who – I don’t know even how they did it
now. Um, but what do you think the error rate was between spouses’ wishes, the spouses’ values
for what they thought their partner wanted and what their partner said that they wanted toward the
end of life?
[inaudible responses]
00:54:37
JOANNE ROBERTS
What do you think the – the correlation was?
00:54:39
UNIDENTIFIED MALE
80 – 20 percent [inaudible].
00:54:41
JOANNE ROBERTS
Uh, it was a coin- a coin toss. It was right at 50 /50. And it was a Yes / No kind of question. So –
[laughter]
00:54:51
I mean this was not a subtle study and I-, so I think it shows that –
MODERATOR
So the question was what? What – what was –
00:54:52
JOANNE ROBERTS
The importance of the conversation – we think people know. We think our families know. Well,
they’ve lived with this our-, their whole lives. They don’t know. They don’t know.
The other thing, I – I don’t know if anyone was at a [inaudible]‘s talk on Monday evening, uh,
down at Town Hall. He – he, um, cited, uh, do-, he’s the author who’s written on patient safety.
He’s a cancer surgeon who has just recently – he’s a young surgeon. He’s just recently seen the
light in this area and realized: My gosh, there’s a conversation to be had here. And he-, he cited
some research that I think is just so provocative and it fits with my life experience and I – I bet
yours.
There’s a researcher at Stanford and that looked at the values of people in their 20s and then
followed them and looked at their values again as they aged. Just: What’s really core to you?
And in their 20s – fame, going to a bar at night and listening to loud music, fortune – those were
the, you know, those were the big values – grasping life, getting and holding life. By the time
people are 50 or 60, they use words like: Intimacy – fame and fortune goes away.
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And so, getting back to your question: How long should these be valid? I don’t know the answer
to that but 20 years is probably long – too long – because I don’t think my values are the same as
they were 20 years ago. I suspect none of yours are either.
00:56:19
EILEEN HANSON
What we recommend is seeing the Advanced Directives as a living, breathing, changing
document that should be reviewed regularly, once a year, just to see if your health has changed,
your relationships have changed, your priorities have changed. It’s very organic and, uh, what
you do in your 20s is not going to be what you do in your 50s or your 80s. And just continue to
have the conversation. Don’t rely on the documents. Have the conversation on an ongoing basis
throughout your life, and let that document change as your conversations change.
00:57:04
MODERATOR
Question in the back?
00:57:06
CHARLES PRATT
I’m Charles Pratt and I’m with the Library system but I’m also monitoring the, uh, conversation
on Twitter and we’ve received some questions there – a lot of which have been answered but this
is one that I haven’t seen spoken about as much, uh, and it’s from Marcel in Mount Vernon. Um,
and she – she asks: How can we better plan our journey even if we are young and our network is
young? And do you have any resources you’d recommend for people under 40, who are thinking
about making these kinds of plans?
00:57:36
EILEEN HANSON
Un-, under-40 resources. Um, I – I think you go through the same conversations, um, the – the
same process, as you think about a healthcare agent. Just, um, which is-, which is actually
challenging for people in their 80s, who – who may not have, um, loved ones in their-, in their
80s. Um, but you think about just the qualities and characters of people. But yours would be
changing a little bit more regularly.
Um, I really am excited about your energy about – [laughter] about talking about this. My 19year-old said: You know, Mom, we should have, um, I should be doing something like this. So
it’s – it’s 19, it’s 40. Um, last year, I was in a car accident with, uh, mild traumatic brain injury.
Stuttered, couldn’t understand a lot of people. You don’t expect that, you know, in the prime of
your life. Accidents happen and that’s why, um, I advocate. I think the process will be the same
in reflecting on your values, of reflecting on medical options. Obviously, a little bit more
intervention may be appropriate, um, if you are in good health, um, and not facing a chronic,
progressive disease. And – and then translating that into an Advanced Directive.
00:58:59
SCOTT FORSLUND
And if I could just build on that. Uh, again, uh . . . I loved what you said, as well and – and that
notion of, you know, how-, how would you like to influence the direction of this movement, of
this work, in a way that aligns with your personal values? Or that would kind of advance your
objectives or your concerns. There are a number of – of different forums that are, um, that are fit
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to-, to different groups. There’s something called the Death Café, uh, that, um, is – it’s around –
it’s a death dinner party, basically, that – that get on-, Google it and you’ll see. Uh, so this isn’t
just a – um, just sort of the conventional, uh, uh, it doesn’t have to be that way at all.
Also, work that the Coalition is doing is experimenting with, um, again with other-, with other
sectors of the workgroups. Uh, Jim Steinruck, who leads Senior Services for Snohomish County,
is working with, uh, an organization in Lynnwood, the Center for-, for Healthy Living that’s, uh,
been funded by Verdant Health Commission and, uh, in that organization, uh, there are – are
groups of – of first generation, multiethnic, um, uh, families and friends that come together. And
so we’re experimenting with – with that because oftentimes there can be cultural values that can
be very different.
So, um, what I loved about – about your-, your point there and what I would ask you and all of
you is: Think about: How do you wanna engage in a way that’s meaningful to you and that can
kinda move this ball forward a little bit? It can’t be done by somebody else. Joanne is doing
yeomen’s work, uh, through- through the Prov Health System and with her-, her vision and her
leadership. Uh, Jonalyn through what’s being done through the Library system is – is, you know,
I think, taking these – these issues out and, uh, in unconventional and important ways. But you
know best how to reach your own peer group and your friends. And that’s what Terry Huffer at
the Y says: You gotta-, I know this Silver Sneakers Group? They trust me. I’ll talk to ‘em. You
know? So –
01:01:05
MODERATOR
Is there anything – and this is for, uh, all of you who have carefully read both documents –
anything in the Affordable Care Act, Medicare or Medicaid that addresses these issues at all?
01:01:20
JOANNE ROBERTS
Uh, well the Affordable Care Act, as you probably remember, this is the-, the infamous death
panels, um, that, uh, there was a provision in the Affordable Care Act originally, uh, to pay
doctors a little bit more for having these conversations but, um, the Death Panel people came
along and that was taken out of the Bill before it, uh, it went for vote. Um –
What is going on in the state is something I – I-, I would like to-, to mention because I think it
gets back to the driver’s license issue. Um, there-, there was a group called the Bree
Collaborative in the state and they make recommendations to the Governor about, uh, tying
Medicaid payment to – to various issues around healthcare quality. And one of the-, the, uh,
issues up right now in the Bree Collaborative are some recommendations around care, uh, toward
the end of life, and one of the recommendations is actually, to put some of this on driver’s
licenses. Those kinds of things get me excited because they’re not gonna transform the state, but
they’ll help.
So, uh, I think it’s still open for public comment, the report from the Bree Collaborative about
payment and, uh, if you Google ‘Bree Collaborative’ you can see –
01:02:34
UNIDENTIFIED FEMALE
Can you spell it?
01:02:34
JOANNE ROBERTS
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It’s B-R-E-E. It’s named after a doctor named Robert Bree who was very, very committed to
improvement of quality of healthcare in the state.
01:02:43
MODERATOR
And – and specifically, what are they talking about putting on the driver’s license? I’m already
an organ donor and it says that right there on my card.
01:02:49
JOANNE ROBERTS
The fact that I have-, I have and Advanced Directive. Doesn’t mean it’s gonna be honored
because, you know, it might not be able to be found, but at least it’s evidenced. Because I-, I’ll
tell you, on the receiving end of this, or the EMS folks who go out to peoples’ houses – they just
don’t have any evidence at a crisis. So any evidence – any evidence is better than what we have
now.
01:03:14
JONALYN WOOLF-IVORY
I do think it’s important, as a family member, um, if you have that documentation and that
evidence, you shouldn’t assume that it is automatically going to happen. Um, I was in the
hospital with my mother and she had been sent from a memory care facility because she was
having trouble breathing. And, um, I overheard , um, the medical staff talking about her and
commenting that she did not have a Do Not Resuscitate Order which was exactly the opposite of
– of what, um, of her wishes and what the documentation that – that we had available. And it was
extremely important that I addressed that issue at that point in time. No one else was going to
address that – that issue and – and, um, we can’t assume that there is this paper trail that moves
along with – with folks.
01:04:20
JOANNE ROBERTS
Yeah, it’s so true.
01:04:23
MODERATOR
Yes?
01:04:25
CAROL SPADE
Carol again. Just in comment to that, we had a nurse in the Emergency Room suggest that when
this issue was over that we take our Advanced Directive to the Emergency – Hospital and have
them scan it into the records so it would be there, and I wouldn’t have to physically take it with
us at – at some point in time.
01:04:45
SCOTT FORSLUND
Yeah, the-, some – the . . . the extent to which Advanced Directives are, um, universally
available? Um, varies from state to state. Uh, I think Utah . . . Oregon are a couple of states that
are, um, that are a little bit further along in this. There have been some efforts to, uh, create
repositories, public repositories – actually in Washington state, um, a few years ago, that – that
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kind of petered out a little bit – that’s also a part of what, um, what we’re looking at as – as a
coalition, is how-, how to try to help move that ball forward. Um, organizations, like Providence
are very, um, uh, - they’ve got some – some IT systems, some in-, info-technology systems that
make it so that, I believe, if – if, uh, if you go into an urgency room at Swedish Edmonds or
Swedish in Seattle, or Providence or St Mary’s, um, there’s some likelihood – is that correct?
01:05:41
JOANNE ROBERTS
So that’s another reason why I think Snohomish County is so poised to-, to move this work
ahead. Um, we’re a very, very, very connected county when it comes to electronic medical
records. So, um, the Providence system, Swedish, um, the Everett Clinic, Edmonds Family
Medicine, I believe, um, Group Health, uh, a couple of the specialty groups – are all on the same
medical record platform. So things can – if you do something at the Everett Clinic, it’s able to be
read at Providence or Swedish. And – and most communities are not nearly as far along as we
are in that.
01:06:22
MODERATOR
And very briefly, and then we’ll wanna go to this lady here.
01:06:24
HAN STONKERS [SP]
Oh, there-, there’s actually an App that you can get on your phone. It’s actually through the
American Bar Association. It’s says, uh, something like My Wishes. Anyway, you-, you could
have – you have your Advanced Directive on your phone, and then the peop-, the other plug for
the Peoples’ Memorial, they’ll have your Advanced Directive. They’ll also have your funeral
plans on record.
01:06:42
MODERATOR
And so will the NSA but that’s another story entirely.
[laughter]
01:06:48
DEBBIE MERCHIE [SP]
I just had a quick question. So – should you-, oh, sorry. I’m Debbie Merchie and I’m a Sn-, an
employee of Sno-Isle but I’m here on my own. Um, just curious: Should you give a copy of your
Advanced Directives to your primary physician, as well as, you know, family members?
01:07:11
JOANNE ROBERTS
I think so. I think the more people who know, the better. Um, I’m less of a document fan. I
mean, over the years I found documents not to be helpful. Other than promoting the
conversation. That’s how they’re – to me, as a provider, that’s how they’ve been helpful – is
promoting conversation.
01:07:30
MODERATOR
So we laminate copies and put it on the refrigerator and pass ‘em out to our neighbors and all of
our children?
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01:07:36
JOANNE ROBERTS
That’s exactly what we do with the POLST Form – so who has heard of a POLST Form? Yes!
That’s great! I’m so glad to hear – [laughs] So a POLST Form is – is – it’s not an Advanced
Directive. Um, it – it speaks to the hierarchy of healthcare but it’s a physician’s Order, um, and –
and patients have to co-sign it or their-, their surrogates have to co-sign it. But it spells out the
goals of care in a very concrete way. It’s bright green. Do you have – Is there a copy in the –
01:08:05
EILEEN HANSON
No.
01:08:05
JOANNE ROBERTS
- packet? OK. It’s very bright green. You-, you can’t miss it. Uh, you can see it from across the
football field. Um, that’s exactly what people do, is they put them on their refrigerators. So the
EMS officers, who are usually the ones who are in the ho-, in the most difficult situation, the
EMS officers walk in and they see it. They know to look for it. Our EMS officers are trained to
go look for that lime green document somewhere in the house.
01:08:31
MODERATOR
And – and where does one get 01:08:32
JOANNE ROBERTS
And they will honor it.
01:08:33
MODERATOR
- that document?
01:08:34
JOANNE ROBERTS
That document can be had at any healthcare provider. Uh, you can go on the Washington State
Medical Association website and get it. You can download it, although you can’t do it in color.
Uh, but any – I mean, any-, any healthcare provider now has a POLST Form.
01:08:49
MODERATOR
Any other questions in the audience? We’ve got another - 01:08:52
UNIDENTIFIED MALE
So, um, I have two questions. I just wanna ask these together. Um, my wife and I have a very
good friend, in her 30s who has been battling her second, uh, bout of breast cancer. Uh, a 10year-old son and, um, and so their family certainly . . . face-to-face with – with a potential
terminal illness, although she seems to be doin’ pretty well now after, you know, with the
treatment that she’s been receiving. So that’s very good but – when you’re thinking – and so this
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family in their 30s, when you’re-, when you’re trying to plan ahead, um, how do you plan ahead
for all of the financial – potential financial costs of different types of illnesses or diseases or even
accidents that could – might leave you paralyzed or whatever. How do you financially plan for
those kinds of things? And is there a way of even having an opportunity to look at the types of
forms that the physicians or their staffs might put in front of your nose if you’re in a critical
situation and they need to do something quickly? And they want you to sign off on it. Can you
look at any of those forms in advance ? So that you’re not doing it under stress when you-, you
may not be thinking as clearly as you’d like to.
01:10:17
JOANNE ROBERTS
You want – answer – I – I think that the financial issue is tragic. It’s just tragic. Um, because I
think we all know that the bankruptcy rates are highest in healthcare-related costs. That’s where
bankruptcies occur these days. It’s in healthcare related costs. And it’s made worse because
healthcare costs are not transparent. Ask you doctor how much the – the CT scan that he or she
orders costs. They can’t answer. Uh, and because they don’t know. You know, it depends on
your health plan, it depends on where you get the scan. Um, so it-, it’s just a tragedy, that we’re-,
we’re suffering through as a country right now.
To get back to your question, I do think that we have to be consumers of the system, and that the
system is only going to respond when people push on the system to respond. It’s no one – it’s the
whole system. – is-, is misaligned right now in that regard.
01:11:10
MODERATOR
And I think –
01:11:11
JOANNE ROBERTS
As far as the forms are concerned, again, I think being a consumer and saying, you know: Why
do I need to do that here? What – what reason would I need to fill out a form at a doctor’s
office? Why not take it home? And bring it back or mail it back.
01:11:25
MODERATOR
Question in the back?
01:11:26
ERIC LINDSEY [SP]
Hi. Uh, Eric Lindsey. Um, I think it would be interesting to see what other countries are doing.
I’ve followed the United States’ quest for universal healthcare for a long time and what I felt with
the Clinton’s initiative that they missed, is they missed the opportunity to have a Ronald Reagan
type, a fireside chat and educate the United States that one way to look at what has happened, um,
to healthcare in the western world, is that with the Marshall Plan after World War II, we helped
rebuild and then prop up all of Europe. And one of the first things they did, is they gave
everyone of their citizens universal healthcare. We paid for it, in a way. Why didn’t we give it to
ourselves? So why don’t we give it to ourselves? I think if – if Hillary Clinton and Bill had
pitched it that way, that-, that would have been a chance to get it during, um, Clinton’s
administration.
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I – I think that having lived in other countries, I’ve seen the way other countries do it. I think
there is – I think what you guys are doing tonight is fantastic for all age groups, um, because I’ve
known people in my life that, um, suffered, um, cataclysmic, um, health reversals, um, in their
20s and 30s, and I had a sudden, uh, onset of, uh, extreme peripheral neuropathy in my lower
legs, uh, two and a half years ago, to the point where I couldn’t talk. I was in so much pain. I
couldn’t think and that took a – a big gap out of my life.
And I also think that there’s a tendency, from having lived in other cultures, there’s a tendency of
Americans to think that we’re coming upon a problem for the first time. That – that no other
country has come upon it, and I think it would be interesting to do a study and see what have
other industrialized countries, what have other countries done with, um, health plans. What have
they done to address this?
Now, if you talking about the 20-something, this is an age group – I – I set a goal when I was 22
and that was: Never to take on the mindset of – excuse me – an old fart –
[laughter]
- and tell young people to turn their music down. Now, with the exception of violent rap, which I
will not listen to, and bad country – I’ll listen to good country, but not bad country – um, I’ve
held up that bargain with a buddy of mine. We’ve stayed current with, uh, pop culture and
whatnot and if you really look at the 20 and 30-somethings, the Millenials, what is easy for them
is obviously technology, um, applications. And I think that if the, uh, Affordable Healthcare
applications for health plans are made electronic, which and they are, then these type of
Advanced Directives could be a part of that process and that would be the most seamless way to
make it universal. People wouldn’t have to have this, uh, I’m bullet-proof. I’m never gonna die,
subconscious mentality. I know, I’m, uh, goin’ on here. 12 years ago, almost to this day, my
father passed away.
01:14:10
MODERATOR
We do need to move on. Do you – do you have a point that, uh –
01:14:13
ERIC LINDSEY
- yeah, I do. 12 years ago, almost to this day, my father passed away. He had a appointment a
month after he passed away to do a Living Trust and a Living Will. So I think that what you’re
doing is great and what plans do you all have to take this even further and get the word out there
to the lower dema- uh, age demographics?
01:14:32
MODERATOR
Perfect place to bring the program to a close. Thank you!
Thank you!
01:14:37
MODERATOR
And, I think it’s also a perfect idea for a future Issues that Matter – the cost of healthcare and
dealing with the cost of healthcare. ‘Cuz I just – I ran across while I was reading up about this,
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25 years from now, when most of us – 20, 25 years from now – are going to need it, a private
one-bedroom in Washington state in a healthcare facility is going to be $24,000 a month.
[several – Oh, my God. Mm-hmm.]
Think about that on your way home tonight.
What I’d like to do now in wrapping this up is thank all of our moderators and go down the pa-,
path and ask them to – to just give us some final thoughts and one take-away message, one takeaway that you would like to leave with each of the members of the audience to night. Jonalyn?
01:15:34
JONALYN WOOLF-IVORY
I was very intrigued by Joanne’s, uh, comment that of: We die the way we live. And, um, I think
we all have choices, um, for ourselves and I think it behooves us to make those choices known. I
know I had blithely assumed that, um, my three children were very clued in with what, um, how I
wanted to be cared for. And luckily, um, one of my sons recently said to me: Mom, you know, I
can do lots of things for you. I’ll – I’ll take care of your money, I’ll put your garbage out, but I
just cannot be the one to be responsible for making the decision about how you should continue if
you’re ill. And he was probably the child that I – I had assumed may have been the most-, had
the most ability to do that. So that conversation, for me was a gift. And, um, I – I guess I
encourage folks to look for ways to have conversations with, um, people that, um, that are
important to you.
01:17:00
MODERATOR
Thank you. Eileen?
01:17:02
EILEEN HANSON
Transformation – that’s the key word for me and it’s not just about systems. It’s about attitudes.
And it is not about someone else doing it. It’s about everybody doing it. And, um, being
involved to – to create a movement. That type of transformation will be not only about how do
you equip and empower yourselves individually, but how do you help this community do it in a
broader way? So – transformation.
01:17:33
MODERATOR
Scott?
01:17:36
SCOTT FORSLUND
Uh, the-, the notion that there are somethings that are uniquely within the purview of a
community to take on, as opposed to, um, an industry or a profession or a healthcare system, uh,
really was again driven home to me tonight, and it is over and over again, and with-, and with
your comment about – about how important this is to you. So I guess, activation, um, and action.
Um, I hope that you’ll take one personal step – sign up for a class, take somebody with you – it’ll
make a difference. So –
01:18:08
MODERATOR
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Joanne?
01:18:09
JOANNE ROBERTS
Um, yes, my-, my wish for everyone here is to sta-, start small and start tonight. On your way
home tonight when you’re driving in your car, ask yourself: How do I want to live the rest of my
life? Don’t think about death. Ask yourself that. And then when you get home, just mention it
to someone that you love, that you were thinking about it.
01:18:30
MODERATOR
Thank you, very much.
We have come to the end of our allotted time for tonight and I wanna thank all of you for coming
out. If you have not already done so, please be sure to fill out the evaluation form about tonight’s
programs and discussions. And if you have ideas for future Issues that Matter, please include
those on the evaluation.
Thank you to our panel tonight, um, who is sitting here talking with us. Executive Director of the
uh, Sno-Isle Libraries, Jonalyn Woolf-Ivory, Reverend Eileen Hanson, Pastor of Trinity Lutheran
Church of Mukilteo, Joanne Roberts, Chief Medical Officer of Providence Regional Medical
Center and Scott Forslund, who is Director of the Snohomish County Health Leadership
Coalition. When does that Coalition meet? And how do we get in contact with you? Uh, what’s
the-, what’s the procedure and – and, uh, how often do you meet?
01:19:21
SCOTT FORSLUND
www dot sno co health dot org (www.snocohealth.org)
and, uh the-, the Coalition itself meets quarterly. But that Coalition is a group of leaders who’s
working to be a set of agents for all of us. Uh, when that group meets is with that list of courses,
for example. Um, that – that’s where the real work gets done.
01:19:42
MODERATOR
I asked each of the panelists for what is the takeaway message for tonight and I will leave you
with the five things that, uh, the Sno-Isle Libraries would like you to know.
Think more about the treatment choices you want and who will speak for you if you become
seriously ill or injured.
Visit Sno-Isle dot org slash Issues that matter and look for this healthcare forum. You’ll find out
more information about what we talked about this evening. Opportunity to sign up for
community classes about Advance Care Planning.
Create, sign, provide copies of your Advanced Care Plan and your Advanced Directive. Give it
to your physician, give it to your neighbor. Put one around the neck of your dog.
[laughter]
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Put it on your refrigerator. Make sure that everybody knows where it is and what it is. And talk
with friends and family, to make sure that they know where it is and that they are doing the
Advanced Care Planning, as well.
Remember, it is not just for you.
And again, thanks to our panel this evening. Thanks to all of you for coming out tonight. And
thanks to the Snohomish County Health Leadership Coalition, the Sno-Isle Libraries, the Sno-Isle
Library Foundation, for making us possible to have this discussion tonight. I’m Ed Bremer from
KSER. Thank you all for coming out.
[APPLAUSE]
[Music and Credits] to end
END OF RECORDING [01:21:19]
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