February 4, 2020 • 26 mins
Creating a health care directive is an important step in planning for the future. It's a gift that lets your family know what choices to make regarding your health care if you are unable to voice that choice for yourself. In this podcast episode, Focus on the Future host Allycia Wolff talks with Maggie O'Connor of Honoring Choices Minnesota. Together, they discuss what goes into a health care directive and why it is important to you and your family.
About Honoring Choices Minnesota
Honoring Choices Minnesota is a collaborative, state-wide Advance Care Planning initiative led by Twin Cities Medical Society. Honoring Choices Minnesota’s goal is to spur family conversations about future health care preferences and to assist health care organizations and community partners with the installation of a comprehensive advance care planning program. Learn more at www.honoringchoices.org.
About Focus on the Future
You can find more information about Focus on the Future at arcminnesota.org/podcast. If Episode 9 inspired a question for an Arc Advocate, call The Arc Minnesota at 833.450.1494.
Focus on the Future is a podcast for caregivers and families supporting people with disabilities. In each episode, a conversation about the journey of discovering our best life and how to achieve it. While exploring legal, financial, and quality of life structures, Focus on the Future aims to get back to what matters most: living a fulfilling and meaningful life that is defined by each individual person.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Music (00:02):
[ music playing]
Allycia Wolff (00:02):
Welcome to Focus on the Future, a future planning
podcast for caregivers andfamilies, supporting people with
disabilities.
Focus on the Future is a podcastof The Arc Minnesota, a
nonprofit advocacy organizationworking with folks with
intellectual and developmentaldisabilities.
My name is Allycia Wolff.
I'm an advocate here at The Arcand your host for Focus on the
(00:23):
Future.
In this week's episode we'regoing to be talking about
healthcare directives.
Over the past few episodes,we've been talking higher level
about future planning and whatit is and some concepts to
consider as you're doing futureplanning.
And now we're going to get backinto the actual logistics of
future planning.
All of that fun paperwork stuffand the things that need to
(00:47):
happen in future planning tocreate a more concrete plan.
So we're going to step intothat.
As we have discussed a lot inprevious episodes, future
planning is like that threelegged stool with the legal
planning, financial planning andquality of life planning.
Today we're going to be talkingabout one of the legal planning
(01:08):
aspects, which is the healthcaredirective.
So a healthcare directive is aform that somebody completes,
fills out, to guide people inwhat they would like their end
of life care to be if they arenot able to speak for
themselves.
There's a lot of other thingsthat go along with it, but in a
nutshell, that's basically it.
(01:29):
And so since it is a legaldocument that's notarized and
you get to choose an agent andthere's a few different like
pieces in here, I invited MaggieO'Connor from Honoring Choices
Minnesota in to talk about thedetails of a healthcare
directive.
She's an expert in this area andI'll introduce her when we jump
(01:50):
into the interview.
I just also wanted to share thatconsidering future desires and
successor care and just planningfor the future is, is a really
big, big part of this wholejourney and in filling out a
health care directive.
So today we're just going tolearn what a healthcare
directive is, what you shouldconsider along the way and where
(02:13):
to start.
So here we go.
Hi Maggie.
Welcome to The Arc Minnesota.
Thanks for coming in today.
Maggie O'Connor (02:21):
Good morning.
Allycia Wolff (02:23):
Maggie O'Connor is a retired palliative care
doctor and in her time workingwith families, she used many
healthcare directives asfamilies were facing end of life
choices.
And so she is here today as apart of Honoring Choices
Minnesota to share her expertiseon health care directives and
end of life care.
(02:44):
So welcome.
Maggie O'Connor (02:45):
Thank you.
Allycia Wolff (02:46):
And what is your job with Honoring Choices?
Maggie O'Connor (02:49):
I'm a volunteer or what they call an ambassador.
And there's a group of us thatmeet regularly, about four times
a year, and speak about healthcare directives, help people
fill them out, do that kind ofthing.
Allycia Wolff (03:07):
Okay.
And I think the burning questionfor everybody here is what is a
health care directive?
How do you describe it?
What does it entail?
Maggie O'Connor (03:17):
The way that I think of it is that it's a set
of directions for family andhealthcare people of what you
would want if you couldn't sayfor yourself.
If something had happened andyou couldn't talk or you were
critically ill, they would havesomething to refer to and be
able to say, ah, well, in thiscircumstance, given these
(03:40):
things, she would really want usto do...whatever it happens to
be.
Allycia Wolff (03:45):
When I work with families a lot, people say,
well, my family knows what Iwant, so I don't really feel it
necessary to have to fill out ahealth care directive.
Maggie O'Connor (03:56):
I heard that many, many times.
One woman said, my mother thinksI'm her health care directive.
The problem is the kinds ofdecisions that people are facing
have a lot to do withfundamental values.
If your brain is the mostcherished part of yourself...
(04:18):
I have a son who's a quoteunquote nerd, and if that was
damaged and he couldn't do thatvery complex thinking, that
would be a much different lossthan it would be for me if I
(04:41):
knew who was around me and Iknew myself well, that'd be
good.
Allycia Wolff (04:47):
Yeah.
Yeah, so it's very subjectivealso.
Maggie O'Connor (04:50):
Very subjective.
Allycia Wolff (04:52):
And so filling out a health care directive
gives people like a roadmap,would you say, of how to make
those decisions?
Maggie O'Connor (05:00):
A roadmap, a voice that they can listen to.
"Oh yeah, that sounds like mom."
Allycia Wolff (05:06):
Hm-mmm.
So you said before thateverybody should have a health
care directive after the age of18.
A lot of people that arelistening to this podcast right
now are caretakers of childrenwith disabilities, often adult
children.
Uh, and so what do you have tosay to that.
Maggie O'Connor (05:31):
These conversations are difficult no
matter what your circumstancebut are invaluable and maybe
somebody with cognitivedifficulties would not be able
to wrap their head around all ofthese questions, but some of the
questions.
Absolutely.
Allycia Wolff (05:51):
Yeah.
What are some of the questionsthat are on the directives?
Maggie O'Connor (05:56):
One of them that I like is, what are three
non-medical things that youthink other people should know
about me?
And that would take some contextexplaining, you know, if you
were in the hospital, but itcould range from my dog is my
closest friend, to, I reallyhate being cold.
(06:19):
Very fundamental practical kindsof things that it'd be good for
people who are taking care ofyou in the hospital to know
about.
Allycia Wolff (06:32):
Yeah.
And it's, it's really importantpieces of information because
for those two examples, my dogis the most important person in
my life.
I may want to see my dog beforeI pass.
And I hate being cold.
Make sure that I'm not cold atthe end of my life to make sure
that I'm the most comfortable aspossible.
And you being a palliative caredoctor, retired palliative care
(06:54):
doctor, you know the importanceof people being comfortable
because palliative care is, canyou describe it a little bit?
Maggie O'Connor (07:00):
So palliative care is a between kind of thing.
So there's hospice, which isstrictly when people are clearly
dying.
Palliative care work with peoplewith serious illness, but they
may even be able to recover.
But the differences that wefocus on, the goals of a person.
So one person who's 90 mightsay, you know, my goal is to be
(07:24):
comfortable.
I know you could give me allsorts of treatments, but my
family's gone and I've lived agood life.
Just keep me comfortable.
And a person who is 25 and has anewborn baby would say in the
same circumstance, I want you todo every possible thing you can.
And palliative care would followboth paths, the second path
(07:45):
going towards hospice, but thefirst path, making sure that the
oncologist is paying attentionto things like nausea, pain,
shortness of breath, the angstof losing a child perhaps.
Um, all those types of things.
Allycia Wolff (08:01):
Absolutely.
Okay.
Thank you.
And so as far as the healthcaredirectives go, when people
create a health care directive,they fill out preferences and
things that matter to them inthat directive to be able to
guide a health care agent anddoctors in the future.
(08:23):
Now a health care agent issomebody who is overlooking the
health care directive and makingthose decisions.
Can you describe what they, whatthey do and what their
responsibilities are?
Maggie O'Connor (08:34):
So the way I think of an agent is they will
talk with the doctors, they willtalk with the nurses just as you
would if you were able to speakand they will have access to
your chart.
They can make decisions on yourbehalf, they can guide sort of
(08:56):
the goal of treatment.
They can do everything you woulddo if you were sick and able to
talk and able to make decisions.
They're your voice.
Allycia Wolff (09:08):
My boss jokes that her husband is not her
health care agent because shedoesn't believe that he would be
able to make the choices thatshe would want in this situation
where he would need to makethose choices.
And so when we guide peoplethrough, through choosing your
(09:28):
health care agent, that's kindof the most important thing in
doing a health care directive ischoosing somebody that you would
trust to really follow what youwant.
Maggie O'Connor (09:37):
Choosing somebody you trust, asking them
if they can do it, and talkingto the people you did not choose
if you think they might haveexpected to be chosen.
So if you have two daughters andyou choose one, be sure to talk
to the other daughter and say,this is why I have done this.
(10:00):
Because I have seen situationswhere one daughter was excluded
and had a big personality andintimidated the agent into
making a decision that actuallytheir mother would probably not
have wanted.
So you really want to cover allthose bases.
Allycia Wolff (10:23):
Yeah, I often also hear the quote, I don't
know where to start.
And all of this thinking aboutthe end of your life is really,
really difficult.
So when you work with families,because you go into people's
homes and you help people fillout health care directives,
(10:44):
where do you start?
Maggie O'Connor (10:46):
Well, the first thing is to not attempt to start
in the future.
To start right now.
So what that means is if you'rerelatively healthy, imagine that
you went outside and you gotinto an accident and you were
knocked out and injured.
(11:10):
What would you want in thiscircumstance right now, because
we obviously don't know ourfuture self, we don't know our
future circumstance.
There's no way we couldanticipate and make a directive.
Directives can be rewritten asmany times as you want.
(11:31):
And they recommend that yourewrite it every decade.
With the change in health, withdivorce, with death of a spouse.
Any major change, you want torewrite the directive.
You do not want to scribble outthe old one and add something.
(11:52):
You really want to do the wholething just because once
something's scribbled out, it'ssort of suspect.
Okay.
Was that Maggie that scribbledit out or was that her evil twin
just trying to manipulate thesituation.
[laughs].
Allycia Wolff (12:13):
Absolutely.
Okay.
So do a new healthcare directiveat any major life change at
least every 10 years.
Elect an agent whom you trustand when you're creating the
health care directive, thinkabout the decisions that you
would want to make right now.
Maggie O'Connor (12:30):
Right.
And doing that takes somereflection on what makes my life
worth living?
If I was paralyzed from thewaist down, I'm not a great
athlete.
I'd be bummed, but I could, Icould handle that.
(12:50):
If I didn't know my loved onesfrom anybody, if I didn't know
who I was, you know, don't goout and kill me, but I don't
want you to do any kind ofroutine testing.
I don't want you to try and keepme alive.
I don't want you to artificiallyfeed me.
Those are those kind ofdecisions I would make, but
(13:13):
those are the types of decisionsthat you would want to look at
Allycia Wolff (13:18):
That you would want to account for, yeah.
And in the Honoring Choiceshealth care directive form,
there's a few different forms.
There's a two page form, a fourpage form and an eight page
form.
So depending on what you qualifyas your state of health or
however far in depth you want togo, those forms pretty well like
(13:39):
walk you through that.
Correct?
Like they ask you questions asyou go through it so you
shouldn't feel so lost.
Maggie O'Connor (13:46):
They lay out the questions one at a time.
What's interesting is that thefour-page form is the newest one
and it has some questions thatare not on the other two that
are very, very helpful.
Things like what gives mestrength and keeps me going in
(14:06):
difficult times.
Or my worries and fears about myhealth.
And I enlarge that in my mind tomy worries and fears about being
ill and having to be in ahospital or serious kind of
(14:26):
situation.
Because as a healthy person, I'mnot worried about my health
exactly.
My goal is if my health getsworse, that's the one that
begins to open a can of worms ifyou don't have some kind of
illness already, but if I hadcancer, I hope I would have the
(14:51):
strength early on to thinkabout, well, what do I want if
treatment really becomesburdensome and at least begin
that conversation before I'mfaced with it.
Allycia Wolff (15:07):
Yeah.
It gives you a way toemotionally prepare.
Yeah, and that's something thatthat I've noticed a lot in these
conversations with people aboutend of life care and just future
planning in general is peoplereally struggle with not knowing
what the future is going to holdand not being able to picture
(15:29):
it.
And so having a framework tostart the conversation can be
really, really helpful.
Maggie O'Connor (15:37):
And depending on your health, there may be
some questions where you say, Ihave no idea.
And that's fine.
You don't have to answer everyquestion in the health care
directive.
Oh, okay.
So you know, if I was 18 andthey're asking me questions
about what is a good death, it'dbe like, give me a break.
Allycia Wolff (15:58):
To not die.
Maggie O'Connor (15:59):
Yeah.
To not die.
Exactly.
Yeah.
Yeah.
And that's fine.
You don't have to answer thatone.
Allycia Wolff (16:06):
Yeah.
Okay.
And then so, so you don't haveto answer certain questions.
Another question that I oftenget is, can you have more than
one health care agent?
Maggie O'Connor (16:15):
You can have more than one a health care
agent.
You can have either that theyare sort of co equals, or you
can have that they have toanswer together, or you can have
a primary choice and a secondarychoice.
In every form that isn'tnecessarily quite laid out, but
(16:36):
you can note that.
Allycia Wolff (16:38):
You can write it in.
And doctors and nurses andhealth care providers all look
at the health care directive anduse that as a guide?
Maggie O'Connor (16:48):
I would like to say yes, but it depends on the
circumstance.
So if somebody comes in to theemergency room and a decision
has to be made this instant orthey're gonna die, they may not
look at the directive.
They may do what they have to doin that moment.
(17:12):
There is something called aphysician or provider order
regarding life sustainingtreatment, a whole nother topic.
That is a physician that's orderor a provider's order and then
the emergency room can say,"Ohnope, we do not have to do
aggressive measures here."
Allycia Wolff (17:33):
Okay.
So then a health care directiveis more useful in this situation
where somebody is getting moreongoing treatment or is like
meeting with their doctor andhas not quite so much of an
emergency situation.
Maggie O'Connor (17:48):
No.
A healthcare directive is moreuseful for, for any situation
because any one of us could bein a place of not being able to
speak.
But if you know, I don't want tobe hospitalized, I don't want to
be resuscitated.
I don't want to be brought backto life.
(18:09):
I already have bad emphysema orcongestive heart failure or
whatever it happens to be.
Then there is a point whichusually coincides with hospice
where that P O L S T- POLST- isvery, very useful because that
(18:33):
means...
Let's say grandma's on hospice,but she falls out of bed and
she's big and I can't pick herup and get her back in bed.
I can call the emergency peopleand get assistance without
having to worry of,"Oh my gosh,are they going to take her into
(18:53):
the hospital" because they havea physician order that says this
person can be left alone.
They don't have to be saved.
Allycia Wolff (19:03):
Okay, so at some point it may be, it may be
something to consider thatpeople who would want a health
care directive and a POLST.
Maggie O'Connor (19:10):
That's right.
Allycia Wolff (19:11):
But for the most part, people are good and well
covered with just a health caredirective.
Maggie O'Connor (19:18):
That's right.
Allycia Wolff (19:20):
Maggie, would you mind walking us through the
execution of a health caredirective?
What it looks like on a day today basis when somebody has one
that's established and they'rereceiving care from a physician?
Maggie O'Connor (19:33):
Absolutely.
Probably the most commonsituation where I saw this was
in the intensive care unit.
Somebody was very, very sick.
It was unclear if they would getbetter or not and there would be
a family meeting.
This would involve me, maybe achaplain or a social worker.
(19:56):
The primary doctors at thatmoment, it might be the
intensive care doctor, it mightbe other specialists, and the
family.
And family is whoever shows upfor you.
Allycia Wolff (20:09):
So it could be your chosen family.
Maggie O'Connor (20:11):
It can be your chosen family and there's no
verification that goes on.
You don't have to prove, youknow that you're married or
anything else like that.
So we'd sit down together andthe doctors taking care of your
loved one would explain thesituation and make sure that you
(20:32):
understood how they were doing,what might be the good course
and what might be the not sogood course that things might
travel going ahead.
And then a conversation about ifthings do not improve, we want
to think about what we shoulddo.
(20:54):
There's a point where you haveto make a decision of whether to
keep them on the machine or not.
And it's more complicated than Ineed to get into, but usually
before that point we begintalking about it.
So if they don't get better bythe end of the week, what would
(21:15):
he or she want?
And what's important then toknow is that question of, what
makes life worth living?
What are the goals now at thistime in my life?
Those are the things that youneed to put into that directive
so that the person speaking foryou can say, as a friend of mine
(21:37):
did, well my dad said that if hecould eat chocolate ice cream
and watch football, then keepon.
And the surgeon said he'll beable to do those things.
And they kept on and he gotbetter.
And so that was a happy ending.
Yeah, and that's really thebottom line of a health care
(22:00):
directive is it's a gift to thepeople you love the most.
It gives them support at a timewhen they are facing the
possibility of losing you.
It's really a gift.
Allycia Wolff (22:13):
Absolutely it is.
Yeah.
I was talking to somebody a fewyears ago about their health
care directive and filling itout and there came a point in
the health care directive whereI asked like what is important
to you and let last few momentsof your life or something like
that.
(22:33):
And somebody wrote that theywanted a certain kind of music
played and they wanted somebodyto brush their hair.
And somebody chuckled orsomebody laughed and, and it
ended up being a reallywonderful gift that that person
gave to their family because notonly were they able to clearly
articulate what they wanted andthen the family had no question,
but then also the daughter hadsomething to do in those last
(22:58):
few moments that made her feelconnected to her mom and like
she was able to help make that amore positive experience and not
focus so much on the grief.
And so it is a really greatgift.
Maggie O'Connor (23:12):
Death is one of those times that the people who
survive, remember for the restof their lives.
And so to be able to rememberbrushing your mother's hair, and
listening to her favorite music,is a wonderful memory at a time
of deep loss.
(23:33):
Wonderful gift.
Allycia Wolff (23:35):
Yeah.
The health care directive can bea wonderful gift.
And that could be a differentperspective to look at it,
right, instead of filling out adocument about your death and
all the destruction and stuff,you can try to flip the
perspective and try to thinkabout it from your loved one's
point of view and not so muchyours.
Maggie O'Connor (23:54):
I imagine whispering into my son's ears if
it's, they aren't the agent yet,but they probably will be one
day.
This is what I'd want.
Yeah.
Just do this.
Allycia Wolff (24:09):
It's like, Oh, thanks mom.
You got it.
Wonderful.
Well, thank you so much fortaking time today, Maggie.
I really appreciate you comingin and you can, for listeners
here today can go tohonoringchoices.org to find all
of this information.
The different health caredirectives watch there's various
(24:30):
different videos.
There's a lot of reallywonderful content and you can
also call the organization for aconversation if you wanted to
talk to somebody and had anyin-person questions.
Maggie O'Connor (24:41):
That's right.
Thank you very much.
It's been a pleasure.
Allycia Wolff (24:43):
Wonderful.
Thanks.
Music (24:47):
[ music playing]
Allycia Wolff (24:47):
If this episode inspired questions for an
advocate at The Arc Minnesota,please give us a call at
883.450.1494.
On the next episode of Focus onthe Future we are going to be
talking about guardianship anddecision making.
Usually a really big factor inthinking and talking about the
(25:08):
future is decision making andwho's going to be supporting
people and what is guardianshiplook like.
Lots of questions that go alongwith that.
So we'll dive in next time.
Focus on the Future is a podcastof The Arc Minnesota.
Subscribe to the podcast on yourfavorite streaming service to
stay up to date with the newestepisodes.
(25:30):
If you're enjoying listening,please support the podcast and
our mission by donating atarcminnesota.
org/podcast.
Also, we would love to hear whatyou think about the podcast and
what topics we would like tocover in the future.
So leave us a review if you areable.
Our podcast music is composedand recorded by Micah Kadwell.
(25:51):
Micah is a talented guitaristfrom New Brighton, Minnesota,
who also has autism.
Thanks, Micah.
This podcast is produced,hosted, and developed by myself,
Allycia Wolff, and supported bya team of very talented
individuals.
Thanks all and thank you forlistening.
Have a great day.
[ music playing]
Allycia Wolff (00:02):
Welcome to Focus on the Future, a future planning
podcast for caregivers andfamilies, supporting people with
disabilities.
Focus on the Future is a podcastof The Arc Minnesota, a
nonprofit advocacy organizationworking with folks with
intellectual and developmentaldisabilities.
My name is Allycia Wolff.
I'm an advocate here at The Arcand your host for Focus on the
(00:23):
Future.
In this week's episode we'regoing to be talking about
healthcare directives.
Over the past few episodes,we've been talking higher level
about future planning and whatit is and some concepts to
consider as you're doing futureplanning.
And now we're going to get backinto the actual logistics of
future planning.
All of that fun paperwork stuffand the things that need to
(00:47):
happen in future planning tocreate a more concrete plan.
So we're going to step intothat.
As we have discussed a lot inprevious episodes, future
planning is like that threelegged stool with the legal
planning, financial planning andquality of life planning.
Today we're going to be talkingabout one of the legal planning
(01:08):
aspects, which is the healthcaredirective.
So a healthcare directive is aform that somebody completes,
fills out, to guide people inwhat they would like their end
of life care to be if they arenot able to speak for
themselves.
There's a lot of other thingsthat go along with it, but in a
nutshell, that's basically it.
(01:29):
And so since it is a legaldocument that's notarized and
you get to choose an agent andthere's a few different like
pieces in here, I invited MaggieO'Connor from Honoring Choices
Minnesota in to talk about thedetails of a healthcare
directive.
She's an expert in this area andI'll introduce her when we jump
(01:50):
into the interview.
I just also wanted to share thatconsidering future desires and
successor care and just planningfor the future is, is a really
big, big part of this wholejourney and in filling out a
health care directive.
So today we're just going tolearn what a healthcare
directive is, what you shouldconsider along the way and where
(02:13):
to start.
So here we go.
Hi Maggie.
Welcome to The Arc Minnesota.
Thanks for coming in today.
Maggie O'Connor (02:21):
Good morning.
Allycia Wolff (02:23):
Maggie O'Connor is a retired palliative care
doctor and in her time workingwith families, she used many
healthcare directives asfamilies were facing end of life
choices.
And so she is here today as apart of Honoring Choices
Minnesota to share her expertiseon health care directives and
end of life care.
(02:44):
So welcome.
Maggie O'Connor (02:45):
Thank you.
Allycia Wolff (02:46):
And what is your job with Honoring Choices?
Maggie O'Connor (02:49):
I'm a volunteer or what they call an ambassador.
And there's a group of us thatmeet regularly, about four times
a year, and speak about healthcare directives, help people
fill them out, do that kind ofthing.
Allycia Wolff (03:07):
Okay.
And I think the burning questionfor everybody here is what is a
health care directive?
How do you describe it?
What does it entail?
Maggie O'Connor (03:17):
The way that I think of it is that it's a set
of directions for family andhealthcare people of what you
would want if you couldn't sayfor yourself.
If something had happened andyou couldn't talk or you were
critically ill, they would havesomething to refer to and be
able to say, ah, well, in thiscircumstance, given these
(03:40):
things, she would really want usto do...whatever it happens to
be.
Allycia Wolff (03:45):
When I work with families a lot, people say,
well, my family knows what Iwant, so I don't really feel it
necessary to have to fill out ahealth care directive.
Maggie O'Connor (03:56):
I heard that many, many times.
One woman said, my mother thinksI'm her health care directive.
The problem is the kinds ofdecisions that people are facing
have a lot to do withfundamental values.
If your brain is the mostcherished part of yourself...
(04:18):
I have a son who's a quoteunquote nerd, and if that was
damaged and he couldn't do thatvery complex thinking, that
would be a much different lossthan it would be for me if I
(04:41):
knew who was around me and Iknew myself well, that'd be
good.
Allycia Wolff (04:47):
Yeah.
Yeah, so it's very subjectivealso.
Maggie O'Connor (04:50):
Very subjective.
Allycia Wolff (04:52):
And so filling out a health care directive
gives people like a roadmap,would you say, of how to make
those decisions?
Maggie O'Connor (05:00):
A roadmap, a voice that they can listen to.
"Oh yeah, that sounds like mom."
Allycia Wolff (05:06):
Hm-mmm.
So you said before thateverybody should have a health
care directive after the age of18.
A lot of people that arelistening to this podcast right
now are caretakers of childrenwith disabilities, often adult
children.
Uh, and so what do you have tosay to that.
Maggie O'Connor (05:31):
These conversations are difficult no
matter what your circumstancebut are invaluable and maybe
somebody with cognitivedifficulties would not be able
to wrap their head around all ofthese questions, but some of the
questions.
Absolutely.
Allycia Wolff (05:51):
Yeah.
What are some of the questionsthat are on the directives?
Maggie O'Connor (05:56):
One of them that I like is, what are three
non-medical things that youthink other people should know
about me?
And that would take some contextexplaining, you know, if you
were in the hospital, but itcould range from my dog is my
closest friend, to, I reallyhate being cold.
(06:19):
Very fundamental practical kindsof things that it'd be good for
people who are taking care ofyou in the hospital to know
about.
Allycia Wolff (06:32):
Yeah.
And it's, it's really importantpieces of information because
for those two examples, my dogis the most important person in
my life.
I may want to see my dog beforeI pass.
And I hate being cold.
Make sure that I'm not cold atthe end of my life to make sure
that I'm the most comfortable aspossible.
And you being a palliative caredoctor, retired palliative care
(06:54):
doctor, you know the importanceof people being comfortable
because palliative care is, canyou describe it a little bit?
Maggie O'Connor (07:00):
So palliative care is a between kind of thing.
So there's hospice, which isstrictly when people are clearly
dying.
Palliative care work with peoplewith serious illness, but they
may even be able to recover.
But the differences that wefocus on, the goals of a person.
So one person who's 90 mightsay, you know, my goal is to be
(07:24):
comfortable.
I know you could give me allsorts of treatments, but my
family's gone and I've lived agood life.
Just keep me comfortable.
And a person who is 25 and has anewborn baby would say in the
same circumstance, I want you todo every possible thing you can.
And palliative care would followboth paths, the second path
(07:45):
going towards hospice, but thefirst path, making sure that the
oncologist is paying attentionto things like nausea, pain,
shortness of breath, the angstof losing a child perhaps.
Um, all those types of things.
Allycia Wolff (08:01):
Absolutely.
Okay.
Thank you.
And so as far as the healthcaredirectives go, when people
create a health care directive,they fill out preferences and
things that matter to them inthat directive to be able to
guide a health care agent anddoctors in the future.
(08:23):
Now a health care agent issomebody who is overlooking the
health care directive and makingthose decisions.
Can you describe what they, whatthey do and what their
responsibilities are?
Maggie O'Connor (08:34):
So the way I think of an agent is they will
talk with the doctors, they willtalk with the nurses just as you
would if you were able to speakand they will have access to
your chart.
They can make decisions on yourbehalf, they can guide sort of
(08:56):
the goal of treatment.
They can do everything you woulddo if you were sick and able to
talk and able to make decisions.
They're your voice.
Allycia Wolff (09:08):
My boss jokes that her husband is not her
health care agent because shedoesn't believe that he would be
able to make the choices thatshe would want in this situation
where he would need to makethose choices.
And so when we guide peoplethrough, through choosing your
(09:28):
health care agent, that's kindof the most important thing in
doing a health care directive ischoosing somebody that you would
trust to really follow what youwant.
Maggie O'Connor (09:37):
Choosing somebody you trust, asking them
if they can do it, and talkingto the people you did not choose
if you think they might haveexpected to be chosen.
So if you have two daughters andyou choose one, be sure to talk
to the other daughter and say,this is why I have done this.
(10:00):
Because I have seen situationswhere one daughter was excluded
and had a big personality andintimidated the agent into
making a decision that actuallytheir mother would probably not
have wanted.
So you really want to cover allthose bases.
Allycia Wolff (10:23):
Yeah, I often also hear the quote, I don't
know where to start.
And all of this thinking aboutthe end of your life is really,
really difficult.
So when you work with families,because you go into people's
homes and you help people fillout health care directives,
(10:44):
where do you start?
Maggie O'Connor (10:46):
Well, the first thing is to not attempt to start
in the future.
To start right now.
So what that means is if you'rerelatively healthy, imagine that
you went outside and you gotinto an accident and you were
knocked out and injured.
(11:10):
What would you want in thiscircumstance right now, because
we obviously don't know ourfuture self, we don't know our
future circumstance.
There's no way we couldanticipate and make a directive.
Directives can be rewritten asmany times as you want.
(11:31):
And they recommend that yourewrite it every decade.
With the change in health, withdivorce, with death of a spouse.
Any major change, you want torewrite the directive.
You do not want to scribble outthe old one and add something.
(11:52):
You really want to do the wholething just because once
something's scribbled out, it'ssort of suspect.
Okay.
Was that Maggie that scribbledit out or was that her evil twin
just trying to manipulate thesituation.
[laughs].
Allycia Wolff (12:13):
Absolutely.
Okay.
So do a new healthcare directiveat any major life change at
least every 10 years.
Elect an agent whom you trustand when you're creating the
health care directive, thinkabout the decisions that you
would want to make right now.
Maggie O'Connor (12:30):
Right.
And doing that takes somereflection on what makes my life
worth living?
If I was paralyzed from thewaist down, I'm not a great
athlete.
I'd be bummed, but I could, Icould handle that.
(12:50):
If I didn't know my loved onesfrom anybody, if I didn't know
who I was, you know, don't goout and kill me, but I don't
want you to do any kind ofroutine testing.
I don't want you to try and keepme alive.
I don't want you to artificiallyfeed me.
Those are those kind ofdecisions I would make, but
(13:13):
those are the types of decisionsthat you would want to look at
Allycia Wolff (13:18):
That you would want to account for, yeah.
And in the Honoring Choiceshealth care directive form,
there's a few different forms.
There's a two page form, a fourpage form and an eight page
form.
So depending on what you qualifyas your state of health or
however far in depth you want togo, those forms pretty well like
(13:39):
walk you through that.
Correct?
Like they ask you questions asyou go through it so you
shouldn't feel so lost.
Maggie O'Connor (13:46):
They lay out the questions one at a time.
What's interesting is that thefour-page form is the newest one
and it has some questions thatare not on the other two that
are very, very helpful.
Things like what gives mestrength and keeps me going in
(14:06):
difficult times.
Or my worries and fears about myhealth.
And I enlarge that in my mind tomy worries and fears about being
ill and having to be in ahospital or serious kind of
(14:26):
situation.
Because as a healthy person, I'mnot worried about my health
exactly.
My goal is if my health getsworse, that's the one that
begins to open a can of worms ifyou don't have some kind of
illness already, but if I hadcancer, I hope I would have the
(14:51):
strength early on to thinkabout, well, what do I want if
treatment really becomesburdensome and at least begin
that conversation before I'mfaced with it.
Allycia Wolff (15:07):
Yeah.
It gives you a way toemotionally prepare.
Yeah, and that's something thatthat I've noticed a lot in these
conversations with people aboutend of life care and just future
planning in general is peoplereally struggle with not knowing
what the future is going to holdand not being able to picture
(15:29):
it.
And so having a framework tostart the conversation can be
really, really helpful.
Maggie O'Connor (15:37):
And depending on your health, there may be
some questions where you say, Ihave no idea.
And that's fine.
You don't have to answer everyquestion in the health care
directive.
Oh, okay.
So you know, if I was 18 andthey're asking me questions
about what is a good death, it'dbe like, give me a break.
Allycia Wolff (15:58):
To not die.
Maggie O'Connor (15:59):
Yeah.
To not die.
Exactly.
Yeah.
Yeah.
And that's fine.
You don't have to answer thatone.
Allycia Wolff (16:06):
Yeah.
Okay.
And then so, so you don't haveto answer certain questions.
Another question that I oftenget is, can you have more than
one health care agent?
Maggie O'Connor (16:15):
You can have more than one a health care
agent.
You can have either that theyare sort of co equals, or you
can have that they have toanswer together, or you can have
a primary choice and a secondarychoice.
In every form that isn'tnecessarily quite laid out, but
(16:36):
you can note that.
Allycia Wolff (16:38):
You can write it in.
And doctors and nurses andhealth care providers all look
at the health care directive anduse that as a guide?
Maggie O'Connor (16:48):
I would like to say yes, but it depends on the
circumstance.
So if somebody comes in to theemergency room and a decision
has to be made this instant orthey're gonna die, they may not
look at the directive.
They may do what they have to doin that moment.
(17:12):
There is something called aphysician or provider order
regarding life sustainingtreatment, a whole nother topic.
That is a physician that's orderor a provider's order and then
the emergency room can say,"Ohnope, we do not have to do
aggressive measures here."
Allycia Wolff (17:33):
Okay.
So then a health care directiveis more useful in this situation
where somebody is getting moreongoing treatment or is like
meeting with their doctor andhas not quite so much of an
emergency situation.
Maggie O'Connor (17:48):
No.
A healthcare directive is moreuseful for, for any situation
because any one of us could bein a place of not being able to
speak.
But if you know, I don't want tobe hospitalized, I don't want to
be resuscitated.
I don't want to be brought backto life.
(18:09):
I already have bad emphysema orcongestive heart failure or
whatever it happens to be.
Then there is a point whichusually coincides with hospice
where that P O L S T- POLST- isvery, very useful because that
(18:33):
means...
Let's say grandma's on hospice,but she falls out of bed and
she's big and I can't pick herup and get her back in bed.
I can call the emergency peopleand get assistance without
having to worry of,"Oh my gosh,are they going to take her into
(18:53):
the hospital" because they havea physician order that says this
person can be left alone.
They don't have to be saved.
Allycia Wolff (19:03):
Okay, so at some point it may be, it may be
something to consider thatpeople who would want a health
care directive and a POLST.
Maggie O'Connor (19:10):
That's right.
Allycia Wolff (19:11):
But for the most part, people are good and well
covered with just a health caredirective.
Maggie O'Connor (19:18):
That's right.
Allycia Wolff (19:20):
Maggie, would you mind walking us through the
execution of a health caredirective?
What it looks like on a day today basis when somebody has one
that's established and they'rereceiving care from a physician?
Maggie O'Connor (19:33):
Absolutely.
Probably the most commonsituation where I saw this was
in the intensive care unit.
Somebody was very, very sick.
It was unclear if they would getbetter or not and there would be
a family meeting.
This would involve me, maybe achaplain or a social worker.
(19:56):
The primary doctors at thatmoment, it might be the
intensive care doctor, it mightbe other specialists, and the
family.
And family is whoever shows upfor you.
Allycia Wolff (20:09):
So it could be your chosen family.
Maggie O'Connor (20:11):
It can be your chosen family and there's no
verification that goes on.
You don't have to prove, youknow that you're married or
anything else like that.
So we'd sit down together andthe doctors taking care of your
loved one would explain thesituation and make sure that you
(20:32):
understood how they were doing,what might be the good course
and what might be the not sogood course that things might
travel going ahead.
And then a conversation about ifthings do not improve, we want
to think about what we shoulddo.
(20:54):
There's a point where you haveto make a decision of whether to
keep them on the machine or not.
And it's more complicated than Ineed to get into, but usually
before that point we begintalking about it.
So if they don't get better bythe end of the week, what would
(21:15):
he or she want?
And what's important then toknow is that question of, what
makes life worth living?
What are the goals now at thistime in my life?
Those are the things that youneed to put into that directive
so that the person speaking foryou can say, as a friend of mine
(21:37):
did, well my dad said that if hecould eat chocolate ice cream
and watch football, then keepon.
And the surgeon said he'll beable to do those things.
And they kept on and he gotbetter.
And so that was a happy ending.
Yeah, and that's really thebottom line of a health care
(22:00):
directive is it's a gift to thepeople you love the most.
It gives them support at a timewhen they are facing the
possibility of losing you.
It's really a gift.
Allycia Wolff (22:13):
Absolutely it is.
Yeah.
I was talking to somebody a fewyears ago about their health
care directive and filling itout and there came a point in
the health care directive whereI asked like what is important
to you and let last few momentsof your life or something like
that.
(22:33):
And somebody wrote that theywanted a certain kind of music
played and they wanted somebodyto brush their hair.
And somebody chuckled orsomebody laughed and, and it
ended up being a reallywonderful gift that that person
gave to their family because notonly were they able to clearly
articulate what they wanted andthen the family had no question,
but then also the daughter hadsomething to do in those last
(22:58):
few moments that made her feelconnected to her mom and like
she was able to help make that amore positive experience and not
focus so much on the grief.
And so it is a really greatgift.
Maggie O'Connor (23:12):
Death is one of those times that the people who
survive, remember for the restof their lives.
And so to be able to rememberbrushing your mother's hair, and
listening to her favorite music,is a wonderful memory at a time
of deep loss.
(23:33):
Wonderful gift.
Allycia Wolff (23:35):
Yeah.
The health care directive can bea wonderful gift.
And that could be a differentperspective to look at it,
right, instead of filling out adocument about your death and
all the destruction and stuff,you can try to flip the
perspective and try to thinkabout it from your loved one's
point of view and not so muchyours.
Maggie O'Connor (23:54):
I imagine whispering into my son's ears if
it's, they aren't the agent yet,but they probably will be one
day.
This is what I'd want.
Yeah.
Just do this.
Allycia Wolff (24:09):
It's like, Oh, thanks mom.
You got it.
Wonderful.
Well, thank you so much fortaking time today, Maggie.
I really appreciate you comingin and you can, for listeners
here today can go tohonoringchoices.org to find all
of this information.
The different health caredirectives watch there's various
(24:30):
different videos.
There's a lot of reallywonderful content and you can
also call the organization for aconversation if you wanted to
talk to somebody and had anyin-person questions.
Maggie O'Connor (24:41):
That's right.
Thank you very much.
It's been a pleasure.
Allycia Wolff (24:43):
Wonderful.
Thanks.
Music (24:47):
[ music playing]
Allycia Wolff (24:47):
If this episode inspired questions for an
advocate at The Arc Minnesota,please give us a call at
883.450.1494.
On the next episode of Focus onthe Future we are going to be
talking about guardianship anddecision making.
Usually a really big factor inthinking and talking about the
(25:08):
future is decision making andwho's going to be supporting
people and what is guardianshiplook like.
Lots of questions that go alongwith that.
So we'll dive in next time.
Focus on the Future is a podcastof The Arc Minnesota.
Subscribe to the podcast on yourfavorite streaming service to
stay up to date with the newestepisodes.
(25:30):
If you're enjoying listening,please support the podcast and
our mission by donating atarcminnesota.
org/podcast.
Also, we would love to hear whatyou think about the podcast and
what topics we would like tocover in the future.
So leave us a review if you areable.
Our podcast music is composedand recorded by Micah Kadwell.
(25:51):
Micah is a talented guitaristfrom New Brighton, Minnesota,
who also has autism.
Thanks, Micah.
This podcast is produced,hosted, and developed by myself,
Allycia Wolff, and supported bya team of very talented
individuals.
Thanks all and thank you forlistening.
Have a great day.
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