WEBVTT

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[sil.]

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[music]

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During the 1990\'s, the Robert Wood Johnson

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Foundation\'s ground-breaking SUPPORT Study
examined how patients who are near the end of life

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are cared for in American hospitals
today. In the second phase

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of the project, nurses were hired and
specially trained in each of five research

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centers. Their goal was to improve patient
care by facilitating communication

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between patients, families and staff.
I think that what SUPPORT can tell us

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is
How we can better care for the dying and

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focus our resources on
things that can make a difference to

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them. And that may not
necessarily be the technology, it may not

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necessarily be the number of ICU beds
that we have available. For some

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it will, but it will help us

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to determine what is the

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experience of these people who
are this sick and who are dying.

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And I don\'t think we know how to
deal with \'em that, in a way,

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that\'s
compassionate and in a way that\'s caring.

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The cases you will see in
this video were filmed

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during the final weeks of the SUPPORT Project.
They are not meant to be representative

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either of the goals or of the conclusions of the
study. But rather to illustrate some of the

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complex realities of end of life
care and decision making.

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Coming into a hospital these days not only
are you sick and in need of

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care but the pace of it, the
technology, the

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number of people that are in and out of any
persons room at any given time is so great

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that it\'s hard to keep
a, hmm, perspective on

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the person that\'s sick. You know,

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like I said, there\'s, there\'s like 20 some people
involved in his case. You know, he\'s got kidney

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problems, he\'s diabetic, he\'s got heart and all
this other stuff and you never know who to talk

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to when you need to find any
answer. Yeah. It just scared me \'cause

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I didn\'t know what to do and all these things go through
your mind. Well what if something happens, what do I do,

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what do I start with. I mean I didn\'t even
know who to talk to

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first or anything, you know. It\'s been kinda
confusing with this changing of services and

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you felt like, felt like you needed more information. And so
that\'s kinda why we gathered you together here is to give you

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an opportunity to talk to the doctor and, and to
find out some of the answers to your questions.

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Right now I don\'t think you\'re going to get much
better. Yeah. That\'s because it\'s becoming,

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uh, more of multi-medical problem,
it\'s not only your heart. Mm-hmm.

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A couple of times they had told us that if
he would start filling up with fluid

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and that to take him to emergency. Well
how do you know when it would be...

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Too much or... too much or, yeah, at the
right time. \'Cause his feet and legs always

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look swelled up to us. Yeah, always. I
mean they were extremely swollen recently

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but how, how long do you wait until
you think he\'s critical or something.

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What we can do is when we... Mr. Riley came
into the hospital for bowel surgery several

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months ago. But a heart failure and consequent
need for open heart surgery, a later

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episode of acute renal failure and other
complications postponed the operation.

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He was so discouraged and
he said, hmm, you know, I

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just don\'t care anymore. I\'d rather go
home to die than, than I would to be, to

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stay here and go through all these treatments. I just,
I don\'t wanna go under one more thing. I\'ve been here

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for months. I came here for a simple
surgery. I wanna go home. You know, hospital

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stays kinda have a little momentum. The longer you stay in, the
weaker you are, the harder it is to care for yourself at home

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and that. That\'s right, that\'s right, yeah. One of the
things we most fear for ourselves and our loved ones

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is being trapped in the hospital.
Lonely, helpless and in pain.

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I mean I had to have me some mean surgery there, ya know,
and I don\'t know what happened or what the hell went

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haywire, uh, I\'m telling you
I was begging for something.

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And it hurt so bad I\'m
begging \'em for any damn

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kind of morphine or pills or... They tried everything and
nothing was helping and they ended up taking him down to

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anesthesiology and they put a thing in his
back where it would pump through like

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Novocain constantly to help... Nerve blockers or
whatever they call that. Yeah. So that, that did

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give him some relief, yeah. Yeah. What
do, can you do, you can just beg.

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You need a quick fix then or just
let me go. One or the other.

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To see somebody that you love and care about so much
to be in that much pain actually begging, you know,

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for you to do something, to give him relief was
really, you know, it\'s, it\'s been real hard on all

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of us, you know. If patients are
living in pain or in the fear of pain

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it can become the total focus of their hospital
experience. They and their families cannot

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realistically evaluate their health
care options.

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I know you\'re, you\'re receiving this
medication, do you think it\'s

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working? It\'s working when I get

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enough. Mm-hmm. My prob,
my problem is I don\'t

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always get
enough and it runs out then I can\'t

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get any more until the time
comes

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and once it gets to hurting

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it takes all the pain medicine. I just

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can\'t get the right amount.
I was wondering how it is

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for you two also, to see her hurting? You just
wanna do something yourself but what can you

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do. She says she feels like she could go to sleep
now and this 50 mic(ph) load will help her

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get a little bit of rest too. It might not have been
that she had an effective dose earlier. I\'ll reevaluate

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her tomorrow morning. If she does have pain there\'s
somebody here 24 hours a day who can respond to that

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so make sure they know, we don\'t want her lying up here hurting
and, and people not knowing that you can call somebody

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from PCA(ph). Right. While we have made
enormous advances in our ability to manage pain

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effectively, the application of these techniques
is sometimes impeded by the traditions and culture

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of the hospital and by the cultures
of patients themselves. Uh, it\'s

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remarkable to me how many people will say,
hmm, I don\'t wanna be any trouble to you

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or, uh, you
know, and they\'re sick. You know, they

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oughta be, they oughta be trouble
and, hmm, troubles not the word that

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I wanna use there but then they, they have
needs and it\'s okay to have, to have needs

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and that\'s something very
consistent in some of the culture

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too. You know how to take

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those?

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I already took the cap off. Yeah, oh.

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We may sometimes imagine
that there is a clear

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demarcation between living and what
we speak of as the dying process. Yet

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many patients who have terminal illnesses
nonetheless remain fully engaged in the needs

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and choices of
their day-to-day lives.

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[sil.]

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Have you talked to your daughter about
how you\'re worried about being a

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burden? We didn\'t go into a
long discussion about it

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but she know how I feel. Well, she
say we work around this, you know,

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you only have tubes, we can work around

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it. Yeah, I think she\'s pretty fond of you.

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It was her idea all this, you know. Mm-hmm,

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yeah. What are you expecting
down the road for

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you? I don\'t know.

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I didn\'t think I was gonna be this sick
this long but... We talk a lot about that,

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hmm, just a few days left kind of
decision making that people do

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is the kind that Mr. Smith was doing today.
Things that have a tremendous

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impact on our lives and how
their existence is gonna be.

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But don\'t necessarily, hmm, deal
with am I gonna be here tomorrow

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but what house will I wake
up in and how will I eat

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and what will I do during the day and
who will I see and, all those things.

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If I were to say what cou... what would be your
greatest hope right now what would you tell me?

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Getting well. Mm-hmm.

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I\'m really not able to do anything for

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myself.

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Somebody have to put you to
bathroom and all. Maybe down

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and up the steps.

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They say they don\'t mind
but I mind.

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He\'s a person who was very clear that he did
not want to complete a living will and yet

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he has some strong feelings about his healthcare.
He feels that the circumstances of life

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are too unpredictable to, to be able
to say now what he will want at

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a later time. can you slow your breathing
down some? The one thing he\'s quite

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clear about is that he does not want to be
resuscitated. He\'s tired of feeling so sick

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but he feels it\'s important to keep going as
long as he can. Treat those things that he can

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but when it\'s time to go just go.
Here, just look at me a sec, go.

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[music]

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Stanley, I know this is not easy. If
there\'s any

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way you can indicate what
you need and I can help,

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I\'d like to do that. Mr.
Lee is a relatively young

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patient with end stage kidney disease. He has
recently suffered brain damage because of lack

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of oxygen. Uh, 33 year old with an
oxy brain injury. Status (inaudible)

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arrest on the 12th

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December. The medical team believe Stanley
is in a coma and will not recover

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and they are struggling with how aggressive to be
in his care. His primary surrogate is his father,

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he lives at home with his parents
prior to having this event and

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they\'ve been very clear on what they
want and that is aggressive care.

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Their belief is that he never talked
about any advance directives, never made

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any decisions prior to coming into the
hospital regarding not wanting

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to be resuscitated or not wanting to be
maintained on life support and also they, um,

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are strong Christians and feel that God
should decide. That they shouldn\'t make any

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medical decisions. I think that it\'s one
of the more interesting dilemmas we face,

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uh, I use the word dilemma not pejoratively
but, uh, it really

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stalls discussion about, uh, limits on care
because what do

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you say when they say, uh, uh, it\'s Gods
decision. I never, uh, uh,

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have any success in, in doing anything but
working with families, work through this

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and usually it, the, the illness
wins and not the, uh, clinicians

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and, hmm... Well Stanley\'s
father has decided to, to talk

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to Stanley about it and that might seem silly
to all of us because he, we don\'t really

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know what he can understand. I explained that
to his father but he does seem to nod yes or no

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to hurting and to some things
and, I mean, what would be

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the ultimate best would be if Stanley
could make his own decisions. And he\'s

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at a point where he can\'t but maybe he can give
his father some indications of what he wants.

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What I wrote in my note yesterday is that we\'re gonna walk a
narrow line between fulfilling the family\'s wishes regarding

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aggressive care and not doing things
that would be, uh, uh, wasteful, uh,

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a, a consumption of resources, uh, so that means...
Also his comfort with his bottom... Right,

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that means that diagnostic tests should
be limited. Lab tests should be limited

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to what we absolutely need, uh, hmm, the therapy
should be tailored to the problems and to

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comfort. Uh, uh, and if he deteriorates

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then, you know, difficult discussions will
have to, uh, ensue because it would be wrong

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to perform cardio pulmonary resuscitation on this gentleman
with severe anoxic encephalopathy. He\'s never gonna

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be able to, uh, make his own healthcare decisions
and as much as they\'d like him to, hmm,

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it\'s not a medical reality. So we can
do our part to keep his care good,

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solid, comfort based care, uh,
uh, in keeping with the family\'s

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wishes and, uh, supportive but we don\'t
have to go, uh, hog wild here, so to speak.

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As far as we know the care giver, being
a nurse going into the room

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and having to one, turn Stanley back
and forth and

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see how his bottom is on fire,
it\'s broken open, he grimaces.

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Having to stick him for different
IV\'s or different blood gases.

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The, the having to suction him
is incredibly painful he has

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spasms of coughing and he can\'t quite
get up his secretions. And I sense from

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the healthcare team that they\'re
really tired

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of having to put Stanley through
all of this. It just, hmm, I

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I mean, for what?

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Mr. Lee is in a coma and cannot make
decisions about his own care.

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Instead his family and caregivers
struggle to interpret what he would have

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wanted. Advance
directives offer ways that we can make our

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own decisions in advance before a
time comes when we are unable to do

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so. Well a lot of times, um, we use
these family meetings as an opportunity

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to ask the patient questions so that they can
express, and the physicians there to hear,

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what is important to the patient for decision
making and, hmm, kinda draw that out of the

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patient. With one form of directive,
called a living will we can leave specific

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instructions about what kinds of care we do
or do not want under specified circumstances.

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With a healthcare
proxy or durable power of attorney we can

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appoint a trusted person to make decisions
for us if we are unable to do so ourselves.

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I know one of the first times I met you,
you felt it was really important to

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do an advance directive and we, hmm,
worked together and I explained to you

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how they can work for you. We did a
durable power of attorney. Yeah. And, um,

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I\'m just wondering what your feelings are
about that. If you, if you still feel

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that\'s a really important document to you or...
Oh I think it is, yeah. What were your reasons

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for wanting to do
that? Well I don\'t wanna be the,

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uh, you know, I mean, if something
went haywire with me I get a

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quick, quick jump-start on something
that\'s, that\'s one thing but, uh, the,

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you know, the plug in for some
long term crap. I, I don\'t want

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nothing like that. That\'s all

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basically. So you, you\'re saying you\'re in favor of
something that offered you benefit but maybe not if it

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was just to prolong
your dying process. Oh yeah. Okay. Yeah.

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It\'s good for, hmm, Dr. Hejjo-Alrefrai to know that because
he\'s going to be following you in the clinic so it\'s

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important that you communicate... It was, um, important
to him to, um, set it down in writing and to, um,

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put down that his wife

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would be a surrogate decision maker for him. He wanted
the durable power of attorney for healthcare and

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we did that. Hmm, he was

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concerned about getting caught up in the system and
having a lot of things done to him that he didn\'t

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participate in those decisions and he wanted
to make sure that that didn\'t happen.

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And I think he realizes, after talking to
him yesterday, that his prognosis is poor

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and that his life expectancy isn\'t great. But the
most important thing to him right now is to get home

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and to spend time with his family and, um, even if
that means foregoing some of the more aggressive

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treatments to keep him in there a little longer. That\'s
not how he wants to spend his time. Once controversial,

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today the idea of advance directives has
moved into the mainstream. Physicians,

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lawyers and a range of civic organizations
offer advice on preparing living

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wills and healthcare proxies. Hospitals are
required to ask patients if they

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have prepared directives and to offer them
assistance in doing so. Yet it\'s often

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difficult to interpret exactly what these
documents mean. The problems we have

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with advance directives, I have, as a physician, is
that often they\'re fairly vague and the specific

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situations they give occur so infrequently
is that, that they\'re not very helpful, uh,

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hmm, the documents aren\'t as helpful
as they could be. It\'s frightening to

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see in the assumptions that suddenly
with this piece of paper with very

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few specific words you suddenly have a grasp
of what this patient wants that may be

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very erroneous, hmm... Or that it doesn\'t
change and that this is a process

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that you need to evaluate and address
on a regular basis as more information

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becomes available. Hmm. That\'s not
a static thing, it, it changes

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and it, and, and should. I,
what really, hmm, you know,

00:18:45.000 --> 00:18:49.999
bothers me is that it\'s become a task. I see
on care plans check the box, do they have

00:18:50.000 --> 00:18:54.999
an advance directive, yes or no. We\'ve had
the example of where, uh, you know, a house

00:18:55.000 --> 00:18:59.999
officers told that someone has a living will and they go, okay and
they go and write a DNR order on the chart and you have to go,

00:19:00.000 --> 00:19:04.999
well wait a minute, they, they do want to be
resuscitated, that\'s but, but people have,

00:19:05.000 --> 00:19:09.999
I think it\'s just the natural human tendency to want
things to be black and white... Yes, put it in the box

00:19:10.000 --> 00:19:14.999
and its done... you know, if, if, okay, you know we\'re going to do
everything or aren\'t we... Mm-hmm... you know, let me know so I can

00:19:15.000 --> 00:19:19.999
get on with my work and, and you can check the box and
move on. The way they are helpful is, is, is that

00:19:20.000 --> 00:19:24.999
just the act of thinking about this and filling one
out forces the patient and the family to think

00:19:25.000 --> 00:19:29.999
about this and talk about it among themselves so that often
they\'ve had a chance to think about and deal with the issues so

00:19:30.000 --> 00:19:34.999
that when problems come up it\'s not hitting them for
the first time and they, and they really have some

00:19:35.000 --> 00:19:39.999
sense of how to, to deal with it and, and if the
patient is too sick to participate in decision making

00:19:40.000 --> 00:19:44.999
the family members a little more confident
that they do know how the patient feels.

00:19:45.000 --> 00:19:49.999
There\'s been a marked improvement. Oh, yeah.
How are you feeling? Fine. My speech has come

00:19:50.000 --> 00:19:54.999
back, I can use my hand now. Well
let\'s see you hold them up. Mrs.

00:19:55.000 --> 00:19:59.999
Adkins(ph) has congestive heart failure
and recently experienced a stroke.

00:20:00.000 --> 00:20:04.999
Her condition could deteriorate rapidly
at any time and the staff feel

00:20:05.000 --> 00:20:09.999
she needs to make some decisions
about her care. She\'s, um, 39 she\'s

00:20:10.000 --> 00:20:14.999
a long history of hypertension, she\'s had
an MI in \'92 and she just suffered a,

00:20:15.000 --> 00:20:19.999
hmm, CVA this week so her,
you know, her overall

00:20:20.000 --> 00:20:24.999
prognosis is not, not great
at this point and, hmm,

00:20:25.000 --> 00:20:29.999
I went in and talked with her the
other day and we started to talk

00:20:30.000 --> 00:20:34.999
about what might be important to her... When people
come and talk to you about it, it doesn\'t necessarily

00:20:35.000 --> 00:20:39.999
mean that something\'s wrong...
Right... um, but the

00:20:40.000 --> 00:20:44.999
hope is to get people to talk about these things when they\'re okay,
when they\'re feeling all right and they\'re able to talk about \'em

00:20:45.000 --> 00:20:49.999
so that decisions aren\'t made later... Yeah...
um, when the patient can\'t, can\'t participate

00:20:50.000 --> 00:20:54.999
in them. Mm-hmm. Have you ever thought about any of
these issues? Yeah, I\'ve thought about quite a few

00:20:55.000 --> 00:20:59.999
of \'em, you know. Like what?
Well I don\'t think I would

00:21:00.000 --> 00:21:04.999
wanna put on
life support system, system if I had to be.

00:21:05.000 --> 00:21:09.999
What do you mean when you say that?
Hmm, I think I would be better off if

00:21:10.000 --> 00:21:14.999
they would just let me go so let
me, you know, keep hanging on.

00:21:15.000 --> 00:21:19.999
And are you talking to me about, um, a, a
breathing

00:21:20.000 --> 00:21:24.999
machine. Is that what you\'re talking about? Yeah. Yeah. Are you
saying that you would never wanna be put on a breathing machine? Uh,

00:21:25.000 --> 00:21:29.999
if it would help I would be. Okay. But if
it wasn\'t I don\'t think I would wanna be

00:21:30.000 --> 00:21:34.999
put on one. And I think, and that\'s a very
important distinction \'cause a lot of times, hmm,

00:21:35.000 --> 00:21:39.999
people get scared and they say, \'Oh, I would never want that,
I never wanna be on life support of any kind.\' Right. Hmm,

00:21:40.000 --> 00:21:44.999
but what you\'re saying to me again is that, um,
if it helped... If it helped I would wanna

00:21:45.000 --> 00:21:49.999
but if it didn\'t help, you know, I can\'t
see no sense in it. So if it offers you

00:21:50.000 --> 00:21:54.999
benefit and they feel that they can use it
to help you overcome... Right. Right... say

00:21:55.000 --> 00:21:59.999
a respiratory illness or, or something, hmm, until you
were able to breathe on your own then that, you\'re willing

00:22:00.000 --> 00:22:04.999
to do that. Yes. Have you ever thought
about, um, in terms of your heart

00:22:05.000 --> 00:22:09.999
if you\'re ever so sick that your heart
were to stop how would you feel about, um,

00:22:10.000 --> 00:22:14.999
would you want somebody to try to
restart it? Yeah,

00:22:15.000 --> 00:22:19.999
I would want \'em to try to restart
it but I wouldn\'t want \'em to keep

00:22:20.000 --> 00:22:24.999
doing it and doing it, you know... Okay. You
would... you would only do so much. Right, okay.

00:22:25.000 --> 00:22:29.999
Have you ever told your husband? Yeah,
I\'ve told him how I felt. Yeah. Because,

00:22:30.000 --> 00:22:34.999
well, I have little children so I have to
think of them too. Yeah. This is hard.

00:22:35.000 --> 00:22:39.999
How, how long have you been...

00:22:40.000 --> 00:22:44.999
About 17(ph) now. It\'s pretty scary, uh.

00:22:45.000 --> 00:22:49.999
Yeah, this is a hard time. We
sat \'em down and talked to

00:22:50.000 --> 00:22:54.999
\'em, explained to \'em, you
know, how bad it is and,

00:22:55.000 --> 00:22:59.999
but they help lots. Do they. The thing she
was the most afraid of was to leave her

00:23:00.000 --> 00:23:04.999
daughters without a mother and, uh, I
could really, you know, I think that

00:23:05.000 --> 00:23:09.999
would be the thing I would be most
afraid of. You try to stand back

00:23:10.000 --> 00:23:14.999
and, um, not, I wouldn\'t say keep a distance
because I don\'t think we can do our job

00:23:15.000 --> 00:23:19.999
well if we put too much distance but
you try to maybe do some sort of

00:23:20.000 --> 00:23:24.999
protective, um,
shielding but, uh,

00:23:25.000 --> 00:23:29.999
you know, we, we build strong relationships
with these people and, and they become our

00:23:30.000 --> 00:23:34.999
friends and we become
their friends. It\'s hard, uh,

00:23:35.000 --> 00:23:39.999
talking to patients about these issues. It gets easier as you do it
and part of the reason it gets easier is when you do it you realize,

00:23:40.000 --> 00:23:44.999
yeah, that was a pretty difficult topic, yes that was an
emotionally charged, but when you, situation, when you walk

00:23:45.000 --> 00:23:49.999
out of the room you feel like you\'ve done something good. What
I\'ve done is to write in on a living will... In addition to

00:23:50.000 --> 00:23:54.999
helping patients think through and clarify
their wishes about end of life care

00:23:55.000 --> 00:23:59.999
staff have an equally crucial role in interpreting
those decisions to the rest of the healthcare team.

00:24:00.000 --> 00:24:04.999
Hi Mr. Hepland(ph) how you doing? Okay,
how are you? All right. It\'s good to see

00:24:05.000 --> 00:24:09.999
you but I\'m sorry you\'re back in.
Mr. Hepland is 46 years old.

00:24:10.000 --> 00:24:14.999
He\'s in the hospital for at least the second time
with angina pains and also has been diagnosed

00:24:15.000 --> 00:24:19.999
with heart failure. There is a possibility
that he could be helped by a heart transplant.

00:24:20.000 --> 00:24:24.999
He is a potential heart transplant
candidate as best I know.

00:24:25.000 --> 00:24:29.999
But in this case we have to be careful with the
living will. We don\'t want that to be interpreted

00:24:30.000 --> 00:24:34.999
by the nurses and the doctors as
his not wanting everything done.

00:24:35.000 --> 00:24:39.999
He definitely, from what you\'re saying, he wants things
done he just doesn\'t wanna end up a, a vegetable

00:24:40.000 --> 00:24:44.999
if you will, uh, indefinitely on a ventilator in a
nursing home. Right. That\'s a lot different from,

00:24:45.000 --> 00:24:49.999
from not wanting anything done. Exactly.
So we have to get clear what his,

00:24:50.000 --> 00:24:54.999
that if, exactly what, what he means and
if he wants us to put limits on what we

00:24:55.000 --> 00:24:59.999
do. Because wanting a heart transplant
is a 110% go situation. You know, if

00:25:00.000 --> 00:25:04.999
you, if the heart transplant people know that
he\'s kind of like, if they think he\'s like,

00:25:05.000 --> 00:25:09.999
well I sort of want therapy I sort of don\'t want therapy then
he\'s not a heart transplant candidate. Those people need

00:25:10.000 --> 00:25:14.999
to sort of say, take my body, do whatever
you want as long as I get better I\'m happy.

00:25:15.000 --> 00:25:19.999
Yeah. And, uh, and they do, actually they do very well
with heart transplants... Mm-hmm, yeah... so it might

00:25:20.000 --> 00:25:24.999
be a very nice therapy for him. Yeah. Okay.
Well I\'ll kinda, I\'ll sound it out a little

00:25:25.000 --> 00:25:29.999
bit and I\'ll talk with you before I put anything in the chart if
you think that might have an impact. Okay. Yeah, all right. Great.

00:25:30.000 --> 00:25:34.999
Before when you were in the hospital you felt really
strongly that you wanted to do everything you could

00:25:35.000 --> 00:25:39.999
to get better but that if things didn\'t
go well that you didn\'t wanna be kept

00:25:40.000 --> 00:25:44.999
going on machinery and that kind of stuff and
you had done a living will. If you\'re gonna be

00:25:45.000 --> 00:25:49.999
a transplant candidate, be
evaluated for a heart transplant,

00:25:50.000 --> 00:25:54.999
if there\'s some question about putting a document
like that in your chart because they need

00:25:55.000 --> 00:25:59.999
to know that you wanna work hard
to get better it might be good for

00:26:00.000 --> 00:26:04.999
you right now to make sure that your
doctors understand how you feel about that

00:26:05.000 --> 00:26:09.999
but maybe not put the document in the
chart so it wouldn\'t be misinterpreted.

00:26:10.000 --> 00:26:14.999
How do you feel about that? Is that all right
with you? Yeah. Okay. All right. And if I

00:26:15.000 --> 00:26:19.999
remember right your wife is pretty clear on
how you feel too. Yeah. Yeah, all right.

00:26:20.000 --> 00:26:24.999
I know that this has gotta be hard with both
of you having been sick, you know, and, and

00:26:25.000 --> 00:26:29.999
when we spoke before you would wanna
be one another\'s spokesperson. Have

00:26:30.000 --> 00:26:34.999
you any other people that you feel know you
well enough that if one of you

00:26:35.000 --> 00:26:39.999
was in the hospital and unable to speak for the other
person that, that you would wanna make medical

00:26:40.000 --> 00:26:44.999
decisions for you if you needed that.
I don\'t know.

00:26:45.000 --> 00:26:49.999
Yeah, it\'s, it may be something you
haven\'t thought much about.

00:26:50.000 --> 00:26:54.999
I think my wife knows me better than
anybody. Yeah, really. In some ways maybe

00:26:55.000 --> 00:26:59.999
we fool ourselves that, that we have
more control over our leaving than

00:27:00.000 --> 00:27:04.999
we do or have more control over our health
than we do. There are no guarantees.

00:27:05.000 --> 00:27:09.999
It, we can\'t promise people and,
and stand behind our promise

00:27:10.000 --> 00:27:14.999
that once we know what you want we absolutely
guarantee you this is what\'s gonna happen.

00:27:15.000 --> 00:27:23.000
That\'s hard to live with, that\'s real
hard to live with.

00:27:25.000 --> 00:27:29.999
The medical team caring for Mr. Lee feel
that he will not recover from his coma

00:27:30.000 --> 00:27:34.999
and that the family should begin thinking about
discontinuing mechanical life supports. An

00:27:35.000 --> 00:27:39.999
intern on the team has arranged to meet with
Stanley\'s father. An you know that, I mean,

00:27:40.000 --> 00:27:44.999
you\'ve, you admitted to the fact that you don\'t think
he\'ll leave the hospital alive. I, I just want

00:27:45.000 --> 00:27:49.999
you to be aware of, of what might happen and
what you\'ll have to see and what you\'ll have to,

00:27:50.000 --> 00:27:54.999
to go through as he
survives mechanistically.

00:27:55.000 --> 00:27:59.999
With mechanical things and electric shock
things to get his heart going and,

00:28:00.000 --> 00:28:04.999
and things that, that I don\'t
necessarily believe he would,

00:28:05.000 --> 00:28:09.999
and he would approve of at that point. And when it comes
to that time, you know, you say now that you\'re able to

00:28:10.000 --> 00:28:14.999
communicate with him and, and get that,
the message of fight from him. It may

00:28:15.000 --> 00:28:19.999
come to a point that you won\'t know what he\'s saying
because he won\'t be there any longer, it\'ll just be

00:28:20.000 --> 00:28:24.999
a body supported by machines. And
he may not have any way to tell

00:28:25.000 --> 00:28:29.999
you that he doesn\'t wanna go on. What I,

00:28:30.000 --> 00:28:34.999
well what I feel in this matter is,

00:28:35.000 --> 00:28:39.999
is that we gonna work,
we gonna go we gonna do

00:28:40.000 --> 00:28:44.999
what we have to do with fluids
and whatever medication an, and

00:28:45.000 --> 00:28:49.999
support
him until he, he got to that point.

00:28:50.000 --> 00:28:54.999
If he get to the point where
he\'s comatose or completely

00:28:55.000 --> 00:28:59.999
unresponsive then that\'s when I will
make that

00:29:00.000 --> 00:29:04.999
decision. Okay. We realize
that the way he stands now

00:29:05.000 --> 00:29:09.999
he could fall either way. He could go, he
could go either way. We don\'t, we, the family

00:29:10.000 --> 00:29:14.999
is well aware of this but
my, my concern as father

00:29:15.000 --> 00:29:19.999
is give him every chance and every

00:29:20.000 --> 00:29:24.999
opportunity that we can for him to survive.

00:29:25.000 --> 00:29:29.999
Okay. Did, did she discuss

00:29:30.000 --> 00:29:34.999
resuscitation
though continuing on as we are but if his

00:29:35.000 --> 00:29:39.999
heart were to stop... Well see
resuscitation would, I think would,

00:29:40.000 --> 00:29:44.999
uh, would, uh... to not to... it
would be left into the hands of

00:29:45.000 --> 00:29:49.999
the
doctor at that particular point, the,

00:29:50.000 --> 00:29:54.999
can, can, can you
determine, can medi, can, can medical

00:29:55.000 --> 00:29:59.999
technology determine if he got

00:30:00.000 --> 00:30:04.999
to the point where he needed
resuscitation that it wouldn\'t be worth

00:30:05.000 --> 00:30:09.999
while. Can you say that? Uh, well, I
mean I can\'t, there\'s no way to say 100%

00:30:10.000 --> 00:30:14.999
on anything but I can say with 98%

00:30:15.000 --> 00:30:19.999
certainty right now I don\'t expect
Stanley to recover. I don\'t expect

00:30:20.000 --> 00:30:24.999
Stanley, that
even if he was to survive, that he

00:30:25.000 --> 00:30:29.999
would ever become conscious,
able to speak.

00:30:30.000 --> 00:30:34.999
I don\'t, I think that he\'ll remain
in a hospital until he dies.

00:30:35.000 --> 00:30:39.999
And, and, and my greatest fear of all

00:30:40.000 --> 00:30:44.999
this is that, is that something
may be done that\'s too late

00:30:45.000 --> 00:30:49.999
to turn around unless we
make a decision now and look

00:30:50.000 --> 00:30:54.999
at things... The staff are concerned that it may be
much harder to discontinue life sustaining treatments

00:30:55.000 --> 00:30:59.999
once they have been started than not to initiate
them in the first place. They are urging

00:31:00.000 --> 00:31:04.999
Mr. Lee to make a decision based upon what Stanley
would have wanted if he were able to decide for

00:31:05.000 --> 00:31:09.999
himself. But the two men have different
perspectives on this and for Mr. Lee

00:31:10.000 --> 00:31:14.999
there are other principals at stake,
including the needs of the family.

00:31:15.000 --> 00:31:19.999
For you, you know, if he got to the point

00:31:20.000 --> 00:31:24.999
where he, he didn\'t even
recognize us, you know,

00:31:25.000 --> 00:31:29.999
it wouldn\'t be the same to
you as it would be to me

00:31:30.000 --> 00:31:34.999
because even though he doesn\'t
recognize me I, he\'s there.

00:31:35.000 --> 00:31:39.999
I can put hands on, I can see him and, uh,

00:31:40.000 --> 00:31:44.999
when I make a decision knowing

00:31:45.000 --> 00:31:49.999
that my decision is saying

00:31:50.000 --> 00:31:54.999
I won\'t be able to put
hands on, prematurely,

00:31:55.000 --> 00:31:59.999
that\'s the way I would feel like it\'s
prematurely,

00:32:00.000 --> 00:32:04.999
it would, my, it would affect
me for a long, long, long time

00:32:05.000 --> 00:32:09.999
and all of the other times
that he\'s had these, uh,

00:32:10.000 --> 00:32:14.999
attacks, whatever it was
he kept fighting to live.

00:32:15.000 --> 00:32:19.999
See
this is Stanley that I know and this

00:32:20.000 --> 00:32:24.999
is the Stanley that I know and I want him to
have every opportunity... You have this history

00:32:25.000 --> 00:32:29.999
of Stanley that we don\'t have. Do you need to get
back and check on him? Yeah, I need to run back in

00:32:30.000 --> 00:32:34.999
there and make sure that he\'s okay. Okay. I think you ought to
talk it over with the family. Yeah. I have, maybe we\'ll talk

00:32:35.000 --> 00:32:39.999
it over some
more. When they, intern

00:32:40.000 --> 00:32:44.999
was speaking to, to Mr. Lee he almost
had tears in his eyes at one point.

00:32:45.000 --> 00:32:49.999
I\'ve rarely
have seen family conferences where the,

00:32:50.000 --> 00:32:54.999
the medical doctors have
presented their side so strongly

00:32:55.000 --> 00:32:59.999
to not continue on aggressively.
In a way we\'d

00:33:00.000 --> 00:33:04.999
like to take the decision away from his
father, make the decision ourselves.

00:33:05.000 --> 00:33:09.999
I don\'t know what degree they feel,

00:33:10.000 --> 00:33:14.999
you know, the, the, the team how

00:33:15.000 --> 00:33:19.999
much effort, how much, the, uh, effort
they want to put into this because of

00:33:20.000 --> 00:33:24.999
the deterioration of his own body
because of all the other illnesses.

00:33:25.000 --> 00:33:29.999
All I, uh, would want is to at least

00:33:30.000 --> 00:33:34.999
initiate it

00:33:35.000 --> 00:33:39.999
and if there\'s no response
then there\'s no response.

00:33:40.000 --> 00:33:44.999
And your son says still that he\'s not
saying I\'m ready to die?

00:33:45.000 --> 00:33:49.999
Try and, uh, when the supreme power,

00:33:50.000 --> 00:33:54.999
when God says that\'s enough it\'ll be
enough. We have respect for what we do

00:33:55.000 --> 00:33:59.999
anyway. Might not do any
good but at least try.

00:34:00.000 --> 00:34:04.999
That\'s what I\'m saying.
That\'s all I\'m saying.

00:34:05.000 --> 00:34:09.999
I know. If he\'s there
you can easily see him

00:34:10.000 --> 00:34:18.000
but death is final. The clarity
which advance directives

00:34:20.000 --> 00:34:24.999
seem to offer can be an illusion. Each
patient is unique and the reality

00:34:25.000 --> 00:34:29.999
of each case can change from minute to minute.
The same technology which under one set

00:34:30.000 --> 00:34:34.999
of circumstances can trap us into
a long drawn out and undignified death

00:34:35.000 --> 00:34:39.999
under other circumstances may offer us
meaningful extra time with our loved ones.

00:34:40.000 --> 00:34:44.999
It, I think one of the things that
often surprises people is that,

00:34:45.000 --> 00:34:49.999
hmm, that there\'s medical uncertainty
exists. I think that, that people often

00:34:50.000 --> 00:34:54.999
view their experience in the hospital as
though the physician is going to be able to

00:34:55.000 --> 00:34:59.999
tell them when they walk in the door what\'s gonna
happen to them and, and not only sort of specifically

00:35:00.000 --> 00:35:04.999
about what\'s going to happen with their healthcare but
what time frame that\'s going to occur in. I think also

00:35:05.000 --> 00:35:09.999
that people often times think that there is
one clear alternative that\'s always the best

00:35:10.000 --> 00:35:14.999
thing and, and that\'s not always the case
either. I, I have to go back to that case that

00:35:15.000 --> 00:35:19.999
I had with the, the family member. This patient
had had a surgery and as the result of the

00:35:20.000 --> 00:35:24.999
surgery got a pneumothorax, not as a result
of the surgery but a common complication,

00:35:25.000 --> 00:35:29.999
hmm, they were putting a defibrillator
and she got a pneumo and the husband

00:35:30.000 --> 00:35:34.999
wanted nothing done, hmm, becau… she
needed to be put on a ventilator

00:35:35.000 --> 00:35:39.999
until she re-, um, -covered and have some chest tubes put
in till she could recover from this pneumo which was very

00:35:40.000 --> 00:35:44.999
treatable. Hmm, but he came running in with
this advance directive and he said you\'re not

00:35:45.000 --> 00:35:49.999
touching, you know, and really, I mean in his heart thought
he was doing what was best for his wife \'cause he knew

00:35:50.000 --> 00:35:54.999
she did not want to be trapped on a ventilator
and they really, um, talked to him,

00:35:55.000 --> 00:35:59.999
um, at length about how this
was a very, um, treatable

00:36:00.000 --> 00:36:04.999
situation and they felt they could have her off in
a few days but he heard one thing. He heard, hmm,

00:36:05.000 --> 00:36:09.999
a young resident say, uh, when he, when the husband
asked how long would she be on the ventilator

00:36:10.000 --> 00:36:14.999
he says, \'I dunno, two days, two years,
I don\'t know, \' And he heard two years

00:36:15.000 --> 00:36:19.999
and he heard nothing else after two
years, that was it. So what happened?

00:36:20.000 --> 00:36:24.999
Miraculously she sat up in bed
and, um, the doctor said, you

00:36:25.000 --> 00:36:29.999
know, all I need to do is put in a chest tube and put you on a vent, if
it doesn\'t work in two days we\'ll talk about it and I\'ll take it off

00:36:30.000 --> 00:36:34.999
and she goes, \'Go for it.\' And

00:36:35.000 --> 00:36:39.999
she\'s home and she\'s doing well and,
um, she recovered and... The problem here

00:36:40.000 --> 00:36:44.999
is that people are put in situations where they have to
make decisions about things that they know so little about

00:36:45.000 --> 00:36:49.999
and he, and this guy is trying to do what he thinks is
best for his wife, trying to protect his wife from,

00:36:50.000 --> 00:36:54.999
you know, the technology and all this stuff
and... I think it speaks to how hard all this is.

00:36:55.000 --> 00:36:59.999
I mean, just to the fact that even though you
think you\'re being very clear or, or you

00:37:00.000 --> 00:37:04.999
try to use the best possible
guidelines to, to make a decision,

00:37:05.000 --> 00:37:09.999
you know, when somebody is lying there
dying... It\'s, it\'s very

00:37:10.000 --> 00:37:14.999
hard when you see something you can do,
not to step in and do it, you know, when

00:37:15.000 --> 00:37:19.999
people end up in untenable situations on ventilators in
nursing homes it doesn\'t usually happen all at once,

00:37:20.000 --> 00:37:24.999
you know, it\'s a lot of little things, it\'s, it\'s, it\'s some
doctor saying, you know, if I just put this tube in I can

00:37:25.000 --> 00:37:29.999
save your mothers life and he goes well, you know, I wanna save my mothers
life put the tube in. Then they come back and they say, you know, we gonna

00:37:30.000 --> 00:37:34.999
need another tube, we\'re gonna have to put that tube in and we\'re gonna, we
better put him on the ventilator but it\'ll just be for a short while. And

00:37:35.000 --> 00:37:39.999
before you know it you end up in, yeah,
it\'s, uh, and it\'s, but it\'s real hard

00:37:40.000 --> 00:37:44.999
not to do it and that\'s, you
know, that\'s the problem.

00:37:45.000 --> 00:37:53.000
[music]

00:37:55.000 --> 00:37:59.999
I\'m sorry, it must be so frustrating to
try to say something and I can\'t,

00:38:00.000 --> 00:38:04.999
did you have a question about
the trach?

00:38:05.000 --> 00:38:13.000
Okay. Let me talk and if I start

00:38:15.000 --> 00:38:19.999
talking about what you want to ask me

00:38:20.000 --> 00:38:24.999
then start nodding your head...
It\'s the next day. Despite

00:38:25.000 --> 00:38:29.999
the predictions of the medical team Stanley,
the young patient with an oxy brain injury

00:38:30.000 --> 00:38:34.999
has revived from his coma and although with
considerable difficulty he is able to communicate.

00:38:35.000 --> 00:38:39.999
I\'m very proud of you, you\'ve done
great.

00:38:40.000 --> 00:38:44.999
Well I think, you know, with anoxic encephalopathy
the, I guess the teaching is what you get early on

00:38:45.000 --> 00:38:49.999
is what, what you wind up with but he, in
the four days I\'ve been taking care of him

00:38:50.000 --> 00:38:54.999
has made a very significant cognitive
improvement. As, uh, Rene said,

00:38:55.000 --> 00:38:59.999
uh, uh, he fully interacts, he understands, he
remembers nothing of being on a ventilator.

00:39:00.000 --> 00:39:04.999
When I asked him today about, uh, would he want to go back on a
ventilator just, because I didn\'t believe Rene when she told me,

00:39:05.000 --> 00:39:09.999
uh, I\'ll be very honest, uh, I thought that, uh, uh,
she was just being her usual hopeful optimistic

00:39:10.000 --> 00:39:14.999
self, uh, and when I talked to him it\'s clear he
did not remember being on a ventilator. But when I

00:39:15.000 --> 00:39:19.999
explained to him what a ventilator was and why
it might again become necessary he understood

00:39:20.000 --> 00:39:24.999
and said he would go on it. Although he paused
and thought about it before he shook his head,

00:39:25.000 --> 00:39:29.999
uh, so the communication isn\'t more
than rudimentary but it is very clear,

00:39:30.000 --> 00:39:34.999
A he understands, B he, uh,
has a plan for his own care

00:39:35.000 --> 00:39:39.999
and, uh, it makes it much easier
for us to take care of him now.

00:39:40.000 --> 00:39:44.999
I feel much better about taking care of him now
regardless of the outcome and I, I don\'t think he\'ll ever

00:39:45.000 --> 00:39:49.999
regain full function but that is a prognostication
that no-one can make, uh... I thought if he could

00:39:50.000 --> 00:39:54.999
communicate to us in some way what
he wanted I thought he was gonna

00:39:55.000 --> 00:39:59.999
indicate that he wanted to stop but
he said he wanted to continue.

00:40:00.000 --> 00:40:04.999
And with that information I\'m,
I\'m more comfortable with

00:40:05.000 --> 00:40:09.999
the plan of care. I think that he\'s gonna recover
from his anoxic encephalopathy to the point where

00:40:10.000 --> 00:40:14.999
a warm and supportive family could take
care of him at home. He has come this far

00:40:15.000 --> 00:40:19.999
one, because of excellent healthcare but
because of a family who refused to stop

00:40:20.000 --> 00:40:24.999
against, uh, suggestions, uh,

00:40:25.000 --> 00:40:29.999
by the healthcare team. Yes, very good point.
Medical opinion of the healthcare team.

00:40:30.000 --> 00:40:34.999
Had I been his physician during the first
five days of his illness when he arrested

00:40:35.000 --> 00:40:39.999
I would have talked to them very
strongly about limiting support.

00:40:40.000 --> 00:40:44.999
Absolutely, that\'s an excellent point
and it shows the fallibility of, uh,

00:40:45.000 --> 00:40:49.999
of human judgment. Based on his early
progress it was completely appropriate,

00:40:50.000 --> 00:40:54.999
or lack of progress, to make him a no resuscitation
and may have been appropriate to discontinue support

00:40:55.000 --> 00:40:59.999
on him. And I don\'t know how many times we\'ve
done that where the patient, had we had an

00:41:00.000 --> 00:41:04.999
alternative universe to see what would have happened,
uh, had we not done it, uh, what the patient would have

00:41:05.000 --> 00:41:13.000
survived to his level even now.

00:41:15.000 --> 00:41:19.999
Hey Gussy(ph), there you go. Come on, yeah,
come on. Gussy Hewitt is 90

00:41:20.000 --> 00:41:24.999
years old and in the surgical intensive
care unit. She was being weaned from

00:41:25.000 --> 00:41:29.999
the respirator following heart surgery
but now has become unresponsive.

00:41:30.000 --> 00:41:34.999
Her children and grandchildren
have gathered at her bedside.

00:41:35.000 --> 00:41:39.999
We need to be really tuned into what\'s
important to people and how we as

00:41:40.000 --> 00:41:44.999
a healthcare system put in
barriers rather than promoting

00:41:45.000 --> 00:41:49.999
a, a departure in which the
healthcare team and family and everybody

00:41:50.000 --> 00:41:54.999
feel like not only has everything been done that
it\'s possible to do, not just in the high-tech

00:41:55.000 --> 00:41:59.999
sense but in the emotional sense and in
the family sense and all those things.

00:42:00.000 --> 00:42:04.999
To try to make sure that the treatment that
people receive is consistent with what\'s

00:42:05.000 --> 00:42:09.999
important to them and their family values.
There are times when the only end of life

00:42:10.000 --> 00:42:14.999
care that matters is the caring of friends and
family and the most important thing staff

00:42:15.000 --> 00:42:19.999
can do is to create moments
when that can happen.

00:42:20.000 --> 00:42:24.999
Yeah, and see, all your other
brats are here. Look, look see.

00:42:25.000 --> 00:42:29.999
Hey Mama. Hey baby.

00:42:30.000 --> 00:42:34.999
Yeah big Momma, here we are. Even
though the situation may be tragic

00:42:35.000 --> 00:42:39.999
you have the feeling that at least
suffering has been relieved.

00:42:40.000 --> 00:42:44.999
You may not be able to change the
ultimate outcome but to help, hmm,

00:42:45.000 --> 00:42:49.999
change the amount of suffering that it takes
to get from here to there, that\'s a real,

00:42:50.000 --> 00:42:54.999
that\'s a real wonderful thing
that\'s very, hmm, rewarding.

00:42:55.000 --> 00:43:03.000
[music]

00:44:30.000 --> 00:44:38.000
Stanley I know this is not easy. If
there\'s any way you can indicate

00:44:40.000 --> 00:44:44.999
what you need and I can help,
I\'d like to do that.

00:44:45.000 --> 00:44:49.999
Mr. Lee is a relatively young patient with
end stage kidney disease. He has recently

00:44:50.000 --> 00:44:54.999
suffered brain damage because of lack of oxygen.
Uh, 33 year old with anoxic brain injury

00:44:55.000 --> 00:44:56.000
status (inaudible)

00:44:56.001 --> 00:44:59.999
arrest on the 12th December. The medical
team believe Stanley is in a coma

00:45:00.000 --> 00:45:04.999
and will not recover and they are struggling
with how aggressive to be in his care.

00:45:05.000 --> 00:45:09.999
His primary surrogate is his father, he lives
at home with his parents prior to having

00:45:10.000 --> 00:45:14.999
this event and they\'ve been very
clear on what they want and that is

00:45:15.000 --> 00:45:19.999
aggressive care. Their
belief is that he never

00:45:20.000 --> 00:45:24.999
talked about any advance directives, never made
any decisions prior to coming into the hospital

00:45:25.000 --> 00:45:29.999
regarding not wanting to be resuscitated or
not wanting to be maintained on life support.

00:45:30.000 --> 00:45:34.999
And also they, um, are strong
Christians and feel that God should

00:45:35.000 --> 00:45:39.999
decide. That they shouldn\'t make any medical
decisions. I think that it\'s one of the more

00:45:40.000 --> 00:45:44.999
interesting dilemmas we face, uh, I use
the word dilemma not pejoratively but,

00:45:45.000 --> 00:45:49.999
uh, it really stalls discussion about, uh,

00:45:50.000 --> 00:45:54.999
limits on care because what do you say
when they say, uh, uh, it\'s Gods decision.

00:45:55.000 --> 00:45:59.999
I never, uh, uh, have any success in, in
doing anything but working

00:46:00.000 --> 00:46:04.999
with families, work through this and
usually it, the, the illness wins and not

00:46:05.000 --> 00:46:09.999
the, uh, conations and, hmm...
Well Stanley\'s father has

00:46:10.000 --> 00:46:14.999
decided to, to talk to Stanley about it
and that might seem silly to all of us

00:46:15.000 --> 00:46:19.999
because he, we don\'t really know what he can
understand. I explained that to his father but he

00:46:20.000 --> 00:46:24.999
does seem to nod yes or no to hurting
and to some things and, I mean,

00:46:25.000 --> 00:46:29.999
what would be the ultimate best would
be if Stanley could make his own

00:46:30.000 --> 00:46:34.999
decisions. And he\'s at a point where he
can\'t but maybe he can give his father

00:46:35.000 --> 00:46:39.999
some indications of what he wants. What I wrote in my note
yesterday is that we\'re gonna walk a narrow line between

00:46:40.000 --> 00:46:44.999
fulfilling the family\'s wishes regarding aggressive
care and not doing things that would be,

00:46:45.000 --> 00:46:49.999
uh, uh, wasteful, uh, a, a consumption of
resources, uh, so that means... Also his

00:46:50.000 --> 00:46:54.999
comfort with his bottom... Right, that means
that diagnostic tests should be limited.

00:46:55.000 --> 00:46:59.999
Lab tests should be limited to what we absolutely
need, uh, hmm, the therapy should be tailored

00:47:00.000 --> 00:47:04.999
to the problems and to comfort. Uh, uh, and

00:47:05.000 --> 00:47:09.999
if he deteriorates then, you know, difficult
discussions will have to, uh, ensue

00:47:10.000 --> 00:47:14.999
because it would be wrong to perform cardio pulmonary
resuscitation on this gentleman with severe

00:47:15.000 --> 00:47:19.999
anoxic encephalopathy. He\'s never gonna be able
to, uh, make his own healthcare decisions and

00:47:20.000 --> 00:47:24.999
as much as they\'d like him to, hmm, it\'s not
a medical reality. So we can do our part to

00:47:25.000 --> 00:47:29.999
keep his care good, solid,
comfort based care, uh, uh,

00:47:30.000 --> 00:47:34.999
in keeping with the family\'s wishes and,
uh, supportive but we don\'t have to go,

00:47:35.000 --> 00:47:39.999
uh, hog wild here, so to speak. As far
as we know the care giver, being a

00:47:40.000 --> 00:47:44.999
nurse going into the
room and having to one,

00:47:45.000 --> 00:47:49.999
turn Stanley back and forth and see
how his bottom is on fire, it\'s

00:47:50.000 --> 00:47:54.999
broken open, he grimaces. Having to stick
him for different IV\'s, or different

00:47:55.000 --> 00:47:59.999
blood gases. The, the
having to suction him is

00:48:00.000 --> 00:48:04.999
incredibly painful he has spasms of coughing
and he can\'t quite get up his secretions.

00:48:05.000 --> 00:48:09.999
And I sense from the healthcare
team that they\'re really tired

00:48:10.000 --> 00:48:14.999
of having to put Stanley
through all of this.

00:48:15.000 --> 00:48:23.000
It just, hmm, I mean, for what?
The medical team caring for

00:48:25.000 --> 00:48:29.999
Mr. Lee feel that he will not recover from his coma
and that the family should begin thinking about

00:48:30.000 --> 00:48:34.999
discontinuing mechanical life supports. An
intern on the team has arranged to meet

00:48:35.000 --> 00:48:39.999
with Stanley\'s father. An you know that, I mean,
you\'ve, you admitted to the fact that you don\'t

00:48:40.000 --> 00:48:44.999
think he\'ll leave the hospital alive. I, I
just want you to be aware of, of what

00:48:45.000 --> 00:48:49.999
might happen and what you\'ll have to see
and what you\'ll have to, to go through

00:48:50.000 --> 00:48:54.999
as he survives mechanistically.
With mechanical things and

00:48:55.000 --> 00:48:59.999
electric shock things to get his heart
going and, and things that, that I don\'t

00:49:00.000 --> 00:49:04.999
necessarily believe he would, and
he would approve of at that point.

00:49:05.000 --> 00:49:09.999
And when it comes to that time, you know, you say now
that you\'re able to communicate with him and, and

00:49:10.000 --> 00:49:14.999
get that, the message of fight from him. It may
come to a point that you won\'t know what he\'s

00:49:15.000 --> 00:49:19.999
saying because he won\'t be there
any longer, it\'ll just be a body

00:49:20.000 --> 00:49:24.999
supported by machines. And he may not have
any way to tell you that he doesn\'t wanna go

00:49:25.000 --> 00:49:29.999
on. What I, well what I

00:49:30.000 --> 00:49:34.999
feel in this matter is,

00:49:35.000 --> 00:49:39.999
is that we gonna work, we gonna go we
gonna do what we have to do with fluids

00:49:40.000 --> 00:49:44.999
and whatever medication an, and support him

00:49:45.000 --> 00:49:49.999
until he, he got to that point.
If he get to the point where

00:49:50.000 --> 00:49:54.999
he\'s comatose or completely unresponsive

00:49:55.000 --> 00:49:59.999
then that\'s when I will make that decision.
Okay. We realize

00:50:00.000 --> 00:50:04.999
that the way he stands now
he could fall either way.

00:50:05.000 --> 00:50:09.999
He could go, he could go either way. We
don\'t, we, the family is well aware of this

00:50:10.000 --> 00:50:14.999
but my, my concern as father is

00:50:15.000 --> 00:50:19.999
give him every chance and
every opportunity that we

00:50:20.000 --> 00:50:24.999
can for him to survive. Okay.

00:50:25.000 --> 00:50:29.999
Did, did she discuss resuscitation
though

00:50:30.000 --> 00:50:34.999
continuing on as we are but if his heart were
to stop... Well see resuscitation would,

00:50:35.000 --> 00:50:39.999
I think would, uh, would,

00:50:40.000 --> 00:50:44.999
uh... to not to... it would be
left into the hands of the doctor

00:50:45.000 --> 00:50:49.999
at that particular point,
the, can, can, can you

00:50:50.000 --> 00:50:54.999
determine, can medi, can, can
medical technology determine

00:50:55.000 --> 00:50:59.999
if he got to the point where
he needed resuscitation

00:51:00.000 --> 00:51:04.999
that it wouldn\'t be worth while.
Can you say that?

00:51:05.000 --> 00:51:09.999
Uh, well, I mean I can\'t, there\'s no way
to say 100% on anything but I can say with

00:51:10.000 --> 00:51:14.999
98% certainty right now

00:51:15.000 --> 00:51:19.999
I don\'t expect Stanley to recover. I
don\'t expect Stanley, that even if he

00:51:20.000 --> 00:51:24.999
was to survive, that he would ever become

00:51:25.000 --> 00:51:29.999
conscious, able to speak. I
don\'t, I think that he\'ll

00:51:30.000 --> 00:51:34.999
remain in a hospital until he dies. And,

00:51:35.000 --> 00:51:39.999
and, and my
greatest fear of all this is that, is that

00:51:40.000 --> 00:51:44.999
something may be done that\'s too
late to turn around unless we

00:51:45.000 --> 00:51:49.999
make a decision now and look at things...
The staff are concerned that it

00:51:50.000 --> 00:51:54.999
may be much harder to discontinue life sustaining
treatments once they have been started than not to

00:51:55.000 --> 00:51:59.999
initiate them in the first place. They are
urging Mr. Lee to make a decision based

00:52:00.000 --> 00:52:04.999
upon what Stanley would have wanted if he were
able to decide for himself. But the two men

00:52:05.000 --> 00:52:09.999
have different perspectives on this and for
Mr. Lee there are other principals at stake,

00:52:10.000 --> 00:52:14.999
including the needs of the family. For you,

00:52:15.000 --> 00:52:19.999
you know, if he got to the point
where he, he didn\'t even recognize

00:52:20.000 --> 00:52:24.999
us, you know, it wouldn\'t be

00:52:25.000 --> 00:52:29.999
the same to you as it
would be to me because

00:52:30.000 --> 00:52:34.999
even though he doesn\'t recognize me I, he\'s
there. I can put hands on, I can see him

00:52:35.000 --> 00:52:39.999
and, uh,

00:52:40.000 --> 00:52:44.999
when I make a decision knowing

00:52:45.000 --> 00:52:49.999
that my decision is saying I won\'t be able

00:52:50.000 --> 00:52:54.999
to put hands on prematurely, that\'s the way

00:52:55.000 --> 00:52:59.999
I would feel like it\'s
prematurely, it would, my, it would

00:53:00.000 --> 00:53:04.999
affect me for a long, long,
long time and all of the

00:53:05.000 --> 00:53:09.999
other times that he\'s had these, uh,
attacks, whatever it was

00:53:10.000 --> 00:53:14.999
he kept fighting to live. See this is

00:53:15.000 --> 00:53:19.999
Stanley that I know and this
is the Stanley that I know

00:53:20.000 --> 00:53:24.999
and I want him to have every opportunity... You
have this history of Stanley that we don\'t have.

00:53:25.000 --> 00:53:29.999
Do you need to get back and check on him? Yeah, I need
to run back in there and make sure that he\'s okay. Okay.

00:53:30.000 --> 00:53:34.999
I think you ought to talk it over with the family.
Yeah. I have, maybe we\'ll talk it over some more.

00:53:35.000 --> 00:53:39.999
When they, intern was speaking to, to
Mr. Lee

00:53:40.000 --> 00:53:44.999
he almost had tears in his eyes at one point.
I\'ve rarely have seen family conferences

00:53:45.000 --> 00:53:49.999
where the, the medical doctors have

00:53:50.000 --> 00:53:54.999
presented their side so strongly to not

00:53:55.000 --> 00:53:59.999
continue on aggressively. In a way we\'d
like to take the decision away from

00:54:00.000 --> 00:54:04.999
his father, make the decision ourselves.
I don\'t know what degree

00:54:05.000 --> 00:54:09.999
they feel, you know,

00:54:10.000 --> 00:54:14.999
the, the, the team how
much effort, how much,

00:54:15.000 --> 00:54:19.999
the, uh, effort they want to put into this
because of the deterioration of his own body

00:54:20.000 --> 00:54:24.999
because of all the other illnesses.
All I, uh,

00:54:25.000 --> 00:54:29.999
would want is to at least

00:54:30.000 --> 00:54:34.999
initiate it

00:54:35.000 --> 00:54:39.999
and if there\'s no response then there\'s
no response. And your son says

00:54:40.000 --> 00:54:44.999
still that he\'s not
saying I\'m ready to die? Try

00:54:45.000 --> 00:54:49.999
and, uh, when the supreme
power, when God says

00:54:50.000 --> 00:54:54.999
that\'s enough it\'ll be enough. We
have respect for what we do anyway.

00:54:55.000 --> 00:54:59.999
Might not do any good but at least try.
That\'s what I\'m saying.

00:55:00.000 --> 00:55:04.999
That\'s all I\'m saying. I know.
If he\'s there

00:55:05.000 --> 00:55:09.999
you can easily see him but death is

00:55:10.000 --> 00:55:18.000
final. Each patient is unique
and the reality of each case

00:55:20.000 --> 00:55:24.999
can change from minute to minute. The same
technology that under one set of circumstances

00:55:25.000 --> 00:55:29.999
can trap us into a long, drawn out
and undignified death, under other

00:55:30.000 --> 00:55:34.999
circumstances may offer us meaningful
extra time with our loved ones.

00:55:35.000 --> 00:55:39.999
I\'m sorry, it must be so frustrating
to try to say something and I can\'t,

00:55:40.000 --> 00:55:44.999
did you have a questions about the

00:55:45.000 --> 00:55:53.000
trach? Let me talk and if I start talking

00:55:55.000 --> 00:55:59.999
about what you want to ask me

00:56:00.000 --> 00:56:04.999
then start nodding your head.
It\'s the next day. Despite the

00:56:05.000 --> 00:56:09.999
predictions of the medical team Stanley, the
young patient with an oxy brain injury has

00:56:10.000 --> 00:56:14.999
revived from his coma and although with
considerable difficulty he is able to communicate.

00:56:15.000 --> 00:56:19.999
I\'m very proud of you, you\'ve done
great. Well I think,

00:56:20.000 --> 00:56:24.999
you know, with anoxic encephalopathy the, I
guess the teaching is what you get early on is

00:56:25.000 --> 00:56:29.999
what, what you wind up with but he, in the four
days I\'ve been taking care of him has made

00:56:30.000 --> 00:56:34.999
a very significant cognitive
improvement. As, uh, Rene said,

00:56:35.000 --> 00:56:39.999
uh, uh, he fully interacts, he understands, he
remembers nothing of being on a ventilator.

00:56:40.000 --> 00:56:44.999
When I asked him today about, uh, would he want to go back on a
ventilator just, because I didn\'t believe Rene when she told me, uh,

00:56:45.000 --> 00:56:49.999
I\'ll be very honest, uh, I thought that, uh, uh,
she was just being her usual hopeful optimistic

00:56:50.000 --> 00:56:54.999
self, uh, and when I talked to him it\'s clear he
did not remember being on a ventilator. But when I

00:56:55.000 --> 00:56:59.999
explained to him what a ventilator was and why
it might again become necessary he understood

00:57:00.000 --> 00:57:04.999
and said he would go on it. Although he paused
and thought about it before he shook his head,

00:57:05.000 --> 00:57:09.999
uh, so the communication isn\'t more than
rudimentary but it is very clear, A

00:57:10.000 --> 00:57:14.999
he understands, B he, uh,
has a plan for his own care

00:57:15.000 --> 00:57:19.999
and, uh, it makes it much easier for
us to take care of him now. I feel

00:57:20.000 --> 00:57:24.999
much better about taking care of him now regardless of
the outcome and I, I don\'t think he\'ll ever regain full

00:57:25.000 --> 00:57:29.999
function but that is a prognostication that
no-one can make, uh... I thought if he could

00:57:30.000 --> 00:57:34.999
communicate to us in some way what he
wanted I thought he was gonna indicate

00:57:35.000 --> 00:57:39.999
that he wanted to stop but he
said he wanted to continue.

00:57:40.000 --> 00:57:44.999
And with that information I\'m, I\'m
more comfortable with the plan

00:57:45.000 --> 00:57:49.999
of care. I think that he\'s gonna recover from
his anoxic encephalopathy to the point where

00:57:50.000 --> 00:57:54.999
a warm and supportive family could take
care of him at home. He has come this far

00:57:55.000 --> 00:57:59.999
one, because of excellent healthcare but
because of a family who refused to stop

00:58:00.000 --> 00:58:04.999
against, uh, suggestions, uh, by

00:58:05.000 --> 00:58:09.999
the healthcare team. Yes, very good point. Medical
opinion of the healthcare team. Had I been

00:58:10.000 --> 00:58:14.999
his physician during the first five
days of his illness when he arrested

00:58:15.000 --> 00:58:19.999
I would have talked to them very
strongly about limiting support.

00:58:20.000 --> 00:58:24.999
Absolutely, that\'s an excellent point
and it shows the fallibility of,

00:58:25.000 --> 00:58:29.999
uh, of human judgment. Based on his early
progress it was completely appropriate,

00:58:30.000 --> 00:58:34.999
or lack of progress, to make him a no resuscitation and
may have been appropriate to discontinue support on

00:58:35.000 --> 00:58:39.999
him. And I don\'t know how many times we\'ve done
that where the patient, had we had an alternative

00:58:40.000 --> 00:58:44.999
universe to see what would have happened, uh, had
we not done it, uh, what the patient would have

00:58:45.000 --> 00:58:49.999
survived to his level even now.

00:58:50.000 --> 00:58:58.000
[music]

00:59:45.000 --> 00:59:49.999
When we did the observational
phase of the study we looked at

00:59:50.000 --> 00:59:54.999
the physicians and we saw the physicians
didn\'t know what the patients

00:59:55.000 --> 00:59:59.999
wanted very well, frequently, you know, or,
or, or were less aware of these things

01:00:00.000 --> 01:00:08.000
than we thought that they should be and than most
physicians would have thought that they should be.

01:00:10.000 --> 01:00:14.999
But we also should be talking to the patients and saying listen,
your doctor needs to know how you feel about being on a ventilator,

01:00:15.000 --> 01:00:19.999
uh, uh, he or she\'ll make better decisions
and advice you better if, if, if, uh,

01:00:20.000 --> 01:00:24.999
they really understand how you feel. And, and that\'s
what we\'re trying to do is to get the communication

01:00:25.000 --> 01:00:33.000
going both ways. I know one of the first times
I met you, you felt it was really important to

01:00:35.000 --> 01:00:39.999
do an advance directive and we, hmm,
worked together and I explained

01:00:40.000 --> 01:00:44.999
to you how they can work for you. We did a
durable power of attorney... Once controversial

01:00:45.000 --> 01:00:49.999
today the idea of advance directives has
moved into the mainstream. Physicians,

01:00:50.000 --> 01:00:54.999
lawyers and a range of civic organizations
offer advice on preparing living wills and

01:00:55.000 --> 01:00:59.999
healthcare proxies. Hospitals are required
to ask patients if they have prepared

01:01:00.000 --> 01:01:04.999
directives and to offer them
assistance in doing so. Yet it\'s often

01:01:05.000 --> 01:01:09.999
difficult to interpret exactly what
these documents mean. The problems we

01:01:10.000 --> 01:01:14.999
have with advance directives, I have as a physician,
is that often they\'re fairly vague and the specific

01:01:15.000 --> 01:01:19.999
situations they give occur so infrequently
is that, that they\'re not as helpful,

01:01:20.000 --> 01:01:24.999
uh, hmm, the documents aren\'t as helpful
as they could be. The way they are helpful

01:01:25.000 --> 01:01:29.999
is, is that just the act of thinking
about this and filling one out forces

01:01:30.000 --> 01:01:34.999
the patient and the family to think about this and talk about it among
themselves so that often they\'ve had a chance to think about and deal with the

01:01:35.000 --> 01:01:39.999
issues so that when problems come up it\'s not
hitting them for the first time and they,

01:01:40.000 --> 01:01:44.999
and they really have some sense of how to, to deal with
it and, and if the patient is too sick to participate

01:01:45.000 --> 01:01:49.999
in decision making the family members a little
more confident that they do know how the patient

01:01:50.000 --> 01:01:54.999
feels.

01:01:55.000 --> 01:01:59.999
There\'s a patient of mine with [??] obstructive lung
disease who decides like 45 minutes before surgery that he

01:02:00.000 --> 01:02:04.999
wants to be DNR. And I came
and told Al he wasn\'t happy.

01:02:05.000 --> 01:02:09.999
Right. So, I wasn\'t happy because I knew what the surgeon was... anyway I call the surgeon
up and I say, \'Listen, hmm, I need to tell you that he doesn\'t want to be resuscitated.\'

01:02:10.000 --> 01:02:14.999
He says, \'Fine, we\'ll cancel the surgery.\' I said, \'Well he broke
his hip and I think, you know, we need to fix it. He, he does

01:02:15.000 --> 01:02:19.999
want his hip fixed, he wants to go on it\'s just if his heart stops beating
he just doesn\'t want to be resuscitated.\' \'Well I can\'t operate on him under

01:02:20.000 --> 01:02:24.999
those conditions.\' You know his attitude was if he doesn\'t
wanna get better why should I waste my time operating on him.

01:02:25.000 --> 01:02:29.999
He was also I think a little bit worried that if something happened during
the surgery that he would be held responsible and I think that that was a

01:02:30.000 --> 01:02:34.999
legitimate concern and it probably is legitimate
to reconsider a, a DNR during a, you know,

01:02:35.000 --> 01:02:39.999
necessary surgery like that.
With a living will

01:02:40.000 --> 01:02:44.999
patients specify the types of care that
they want or do not want under specific

01:02:45.000 --> 01:02:49.999
circumstances. With a power of
attorney or healthcare proxy they can

01:02:50.000 --> 01:02:54.999
choose a relative or other trusted person to
make decisions for them when they are unable

01:02:55.000 --> 01:02:59.999
to do so. With a do not
resuscitate or DNR order

01:03:00.000 --> 01:03:04.999
the patients indicate that they do not want to
be revived if their heart fails or they stop

01:03:05.000 --> 01:03:09.999
breathing. Each document performs a different
role in the patients advance planning.

01:03:10.000 --> 01:03:14.999
But people misunderstand that, you know, we\'ve
had the example of where, uh, you know,

01:03:15.000 --> 01:03:19.999
house officers told that someone has a living will and they go okay
and they go and write a DNR order on the chart and you have to go,

01:03:20.000 --> 01:03:24.999
well wait a minute they, they do want to be
resuscitated, that\'s, but, but people have,

01:03:25.000 --> 01:03:29.999
I think it\'s just a natural human tendency to want things to
be black and white, you know... Yes, right, put it in the box

01:03:30.000 --> 01:03:34.999
and it\'s done... if, if, okay, you know, we\'re gonna do everything
or aren\'t we. You know, let me know so I can get on with

01:03:35.000 --> 01:03:39.999
my work. Yesterday I went to do, with
people who theoretically are familiar

01:03:40.000 --> 01:03:44.999
with advance directives and the patient
said he didn\'t want to be resuscitated

01:03:45.000 --> 01:03:49.999
and the person I was with said, \'Then
sign this living will.\' And I said, \'Gee,

01:03:50.000 --> 01:03:54.999
you know that\'s not the same thing.\' And
they said, \'It isn\'t?\' and I said, \'No, you

01:03:55.000 --> 01:03:59.999
know, they\'re really very different. Someone with a living
will might wanna be resuscitated.\' Not many people who,

01:04:00.000 --> 01:04:04.999
you know, were in an auto accident would
wanna say, you know, don\'t even bring me in.

01:04:05.000 --> 01:04:09.999
But boy it, it\'s frightening to see the
assumptions that go along with that.

01:04:10.000 --> 01:04:14.999
And the assumptions that suddenly with
this piece of paper with very few

01:04:15.000 --> 01:04:19.999
specific words you suddenly have a grasp of
what this patient wants that may be very

01:04:20.000 --> 01:04:24.999
erroneous, hmm. Or that it doesn\'t change
and that this is a process that you

01:04:25.000 --> 01:04:29.999
need to evaluate and address on a regular
basis as more information becomes available.

01:04:30.000 --> 01:04:34.999
Hmm, that\'s not a static
thing it, it changes and

01:04:35.000 --> 01:04:39.999
it, and, and should I, what
really, hmm, you know, bothers me

01:04:40.000 --> 01:04:44.999
is that it\'s become a task. I see on care
plans, check the box, do they have an advance

01:04:45.000 --> 01:04:49.999
directive, yes or no. They come in en masse
some of these senior citizens centers and they,

01:04:50.000 --> 01:04:54.999
and they all, you know, line up at tables and they fill
out their advance directives and they come into the

01:04:55.000 --> 01:04:59.999
hospital and they don\'t know what it means. I just had
a patient who had a diagnosis of colon cancer with

01:05:00.000 --> 01:05:04.999
liver metastases which is a very devastating
diagnosis with a, not a great prognosis

01:05:05.000 --> 01:05:09.999
and she wanted to get her affairs in order and she
went to the, to the, hmm, lawyer and they had

01:05:10.000 --> 01:05:14.999
all of the things that she might need to consider and
she just signed. When she came into the hospital

01:05:15.000 --> 01:05:19.999
here I said well, well do you know what
they say, do you have any idea what it,

01:05:20.000 --> 01:05:24.999
what it means and she said, \'Well my mother thinks
I signed \'em but no I don\'t know, what do they

01:05:25.000 --> 01:05:33.000
say? What are they all about?\' I, I
have to go back to that case that I

01:05:35.000 --> 01:05:39.999
had with the, the family member. This
patient had had a surgery and as the result

01:05:40.000 --> 01:05:44.999
of the surgery got a pneumothorax, not as a
result of the surgery but a common complication,

01:05:45.000 --> 01:05:49.999
hmm, they were putting a defibrillator
and she got a pneumo and the husband

01:05:50.000 --> 01:05:54.999
wanted nothing done, hmm, becau… she
needed to be put on a ventilator

01:05:55.000 --> 01:05:59.999
until she re, um, covered and have some chest tubes put
in till she could recover from this pneumo which was very

01:06:00.000 --> 01:06:04.999
treatable. Hmm, but he came running in with
this advance directive and he said you\'re

01:06:05.000 --> 01:06:09.999
not touching, you know, and really, I mean in his heart thought
he was doing what was best for his wife \'cause he knew

01:06:10.000 --> 01:06:14.999
she did not want to be trapped on a ventilator,
you know, and technically she wasn\'t

01:06:15.000 --> 01:06:19.999
terminal, technically she wasn\'t permanently
unconscious I think she was in a very, very grey area

01:06:20.000 --> 01:06:24.999
but she had end stage cardiac disease, although
what\'s end stage cardiac disease? I don\'t

01:06:25.000 --> 01:06:26.999
know, people can go on quite a long time
with, you know, a very, very low (inaudible)

01:06:27.000 --> 01:06:29.999
. Sure.

01:06:30.000 --> 01:06:34.999
And they really, um, talked to him,
um, at length about how this was

01:06:35.000 --> 01:06:39.999
a very, um, treatable situation and they
felt they could have her off in a few

01:06:40.000 --> 01:06:44.999
days but he heard one thing. He
heard, hmm, a young resident say, uh,

01:06:45.000 --> 01:06:49.999
when he, when the husband asked how long would she be on the
ventilator he says, \'I dunno, two days, two years, I don\'t know, \'

01:06:50.000 --> 01:06:54.999
And he heard two years and he heard
nothing else after two years,

01:06:55.000 --> 01:06:59.999
that was it. So what happened?
Miraculously she sat up in bed

01:07:00.000 --> 01:07:04.999
and, um, the doctor said, you know, all I need to
do is put in a chest tube and put you on a vent,

01:07:05.000 --> 01:07:09.999
if it doesn\'t work in two days we\'ll talk about it
and I\'ll take it off and she goes, \'Go for it.\'

01:07:10.000 --> 01:07:14.999
And she\'s home and she\'s doing well and,

01:07:15.000 --> 01:07:19.999
um, she recovered and... The problem here is that
people are put in situations where they have

01:07:20.000 --> 01:07:24.999
to make decisions about things that they know so little about
and he, and this guy is trying to do what he thinks is best

01:07:25.000 --> 01:07:29.999
for his wife, trying to protect his wife from,
you know, the technology and all this stuff and,

01:07:30.000 --> 01:07:34.999
uh, yet we know, see, this is, this is,
I\'m not sure how I would have handled it,

01:07:35.000 --> 01:07:39.999
I think I would have put the tube in,
over his objections because... But you

01:07:40.000 --> 01:07:44.999
haven\'t met him. Yeah, well may be so, may be
so but it also teaches you that you have to be

01:07:45.000 --> 01:07:49.999
careful about making flip remarks or giving snap
answers to patients. I mean that, what that

01:07:50.000 --> 01:07:54.999
resident said, you know, two days, two
years, wasn\'t entirely untrue but that,

01:07:55.000 --> 01:07:59.999
those are the, that\'s the range of the possibilities but
we had some idea of where this lady was likely to fall

01:08:00.000 --> 01:08:04.999
and it was not likely to be two years. The,
the whole tension in dealing with, with

01:08:05.000 --> 01:08:09.999
these things is we, a patient has a right
to accept or refuse any treatments

01:08:10.000 --> 01:08:14.999
so we don\'t, you know, even if it means
that they will die. That woman could say,

01:08:15.000 --> 01:08:19.999
\'You can\'t put a chest tube in me, I do not want a chest
tube, I would rather die than get a chest tube or be on

01:08:20.000 --> 01:08:24.999
a ventilator.\' We might not like that decision, we might
not think it\'s a smart decision. We would be obliged to

01:08:25.000 --> 01:08:29.999
try and explain to them, and to educate them
or whatever. But if after all of that\'s done

01:08:30.000 --> 01:08:34.999
they say no, then it\'s no, you can\'t do something to a
patient against their will. The problem is when the

01:08:35.000 --> 01:08:39.999
patient can\'t tell you what they
want done in that situation. Then,

01:08:40.000 --> 01:08:44.999
if there\'s no family you\'re obliged to act in your,
in what you think is their best interest and do

01:08:45.000 --> 01:08:49.999
what you think is, is best for them,
uh, uh, in medical terms. If a family

01:08:50.000 --> 01:08:54.999
is available you should consult them and
discuss this with them, uh, and primarily

01:08:55.000 --> 01:08:59.999
so that you can get, try to get them to advise
you about what they think the patient would have

01:09:00.000 --> 01:09:04.999
wanted done in the situation. Help, help you in making the
decision but they can\'t really make the decision for them,

01:09:05.000 --> 01:09:09.999
the patient, legally. In reality we are
rarely... durable power of attorney

01:09:10.000 --> 01:09:14.999
with him. Oh, did he have, did she... he had both... He had durable power? He
had durable power and living will... well then, then it\'s a different story

01:09:15.000 --> 01:09:19.999
then, no if he had durable power of attorney then,
then you would have been obliged to. Then, then he

01:09:20.000 --> 01:09:24.999
would have... But are you still obliged because...
Oh, I see. Because it, because she\'s not,

01:09:25.000 --> 01:09:29.999
yeah... because you thought it was treatable. I think
it would have been difficult for me to let someone die

01:09:30.000 --> 01:09:38.000
from a, from a easily treatable disease.
A living will takes

01:09:40.000 --> 01:09:44.999
effect when the person is terminally ill or
permanently unconscious but phrases like

01:09:45.000 --> 01:09:49.999
terminally ill or permanently unconscious
can be subject to interpretation.

01:09:50.000 --> 01:09:54.999
A durable power of attorney takes effect
when the person is unable to make their own

01:09:55.000 --> 01:09:59.999
healthcare decisions. However, in some
states the healthcare representatives

01:10:00.000 --> 01:10:04.999
power to refuse treatment may be limited in
situations where the patient, with treatment

01:10:05.000 --> 01:10:09.999
might regain the ability to make their
own decisions. The thing is you have to

01:10:10.000 --> 01:10:14.999
decide, I mean, what\'s more important. You,
you worry about hurting this guys feelings

01:10:15.000 --> 01:10:19.999
or making him angry that\'s, and that\'s... It wasn\'t hurting his
feelings, they weren\'t worried about that. Then, and the other thing

01:10:20.000 --> 01:10:24.999
is then, if you, you\'re worried about legal ramifications, him
suing you or something like that. See the thing is you have to say

01:10:25.000 --> 01:10:29.999
is it more important for me to avoid a law suit or save
this lady\'s life. If I was convinced this guy really

01:10:30.000 --> 01:10:34.999
knew what his wife would want done in this specific
situation I would be guided by that. You know, what

01:10:35.000 --> 01:10:39.999
if, I think that if I was convinced, even if I
thought it was a bad idea if this lady, this is the

01:10:40.000 --> 01:10:44.999
way this lady would have answered that question if she were
here, that would, that would very much influence my thinking.

01:10:45.000 --> 01:10:47.999
What if they cannot do a verbal power of attorney? If, if that
person was on the ventilator and was unconscious and was (inaudible)

01:10:48.000 --> 01:10:49.999
and had given this person

01:10:50.000 --> 01:10:54.999
a durable power of attorney and, and... And they said the exact
same thing with the durable power... then I would feel obliged

01:10:55.000 --> 01:10:59.999
to act as if that patient was telling
me to stop now. Even if you know

01:11:00.000 --> 01:11:04.999
that they had a chance of recovery? Well I would still
feel an obligation to talk to them and to educate

01:11:05.000 --> 01:11:09.999
them to do all the other things. I think, see,
the, the situation here was this was an acute

01:11:10.000 --> 01:11:14.999
readily reversible problem. Now if we treat this the
chances of this lady dying from this event are,

01:11:15.000 --> 01:11:19.999
are very small. If we don\'t treat it the chances of her dying
are very high. It\'s and it\'s, the treatment isn\'t all that

01:11:20.000 --> 01:11:24.999
bad, uh, so I think he was
overreacting to the situation, uh, um,

01:11:25.000 --> 01:11:29.999
and I would have been real uncomfortable with that as
opposed to somebody who, you know, had some overwhelming or

01:11:30.000 --> 01:11:34.999
devastating disease. The problem is, I mean, how
can we ever be a 100% convinced that that person,

01:11:35.000 --> 01:11:39.999
given this new information in this
new situation, had this

01:11:40.000 --> 01:11:44.999
patient known that it was treatable, she would
have said yes. Did he know what he, she wanted. He

01:11:45.000 --> 01:11:49.999
thought she didn\'t want to be treated.
I, you know, I don\'t, I, I just, I\'m

01:11:50.000 --> 01:11:54.999
to set it down in concrete and say that\'s the way I\'m
always gonna feel regardless of what\'s going on in

01:11:55.000 --> 01:11:59.999
my healthcare situation, I\'m, you know,
unless you have a metastatic disease

01:12:00.000 --> 01:12:04.999
and where it\'s clearly black and white, hmm... See
it\'s easy to talk about these things in the abstract

01:12:05.000 --> 01:12:09.999
and, and it\'s a whole different story when you\'re
right there, sitting in the room talking to

01:12:10.000 --> 01:12:14.999
somebody.

01:12:15.000 --> 01:12:19.999
But when, when I go in, when I go in to
talk to a family and present a situation if

01:12:20.000 --> 01:12:24.999
they say they want
everything stopped in a, uh, 40-year-old

01:12:25.000 --> 01:12:29.999
man who I think has a 60% chance of leaving the
hospital and doing well there\'s no way that

01:12:30.000 --> 01:12:34.999
I\'m gonna do that but what I would do is I wouldn\'t just say that\'s it
I\'m outta here, I would explain this to them. Often what happens is

01:12:35.000 --> 01:12:39.999
people are, they see the tubes and they see the ventilator and
they think this is hopeless how can anyone recover from this.

01:12:40.000 --> 01:12:44.999
What they need to hear is well people like this 60%
of them get better and are alive six months from now.

01:12:45.000 --> 01:12:49.999
Well that might very well change their thinking.
I think it speaks to how hard all this is.

01:12:50.000 --> 01:12:54.999
I mean just the fact that even though you
think you, you\'re being very clear or, or

01:12:55.000 --> 01:12:59.999
you try to use the best possible
guidelines to, to make a

01:13:00.000 --> 01:13:04.999
decision. You know when someone
is lying there dying...

01:13:05.000 --> 01:13:09.999
It\'s very hard when you see something you
can do not to step in and do it, you know.

01:13:10.000 --> 01:13:14.999
When people end up in untenable situations on
ventilators in nursing homes it doesn\'t usually happen

01:13:15.000 --> 01:13:19.999
all at once, you know, it\'s a lot of little things, it\'s, it\'s,
it\'s some doctor saying, you know, \'If I just put this tube in

01:13:20.000 --> 01:13:24.999
I can save your mothers life.\' and he goes, \'Well, you know, I
wanna save my mothers life, put the tube in.\' Then they come back

01:13:25.000 --> 01:13:29.999
and they say, \'You know, we\'re gonna need another tube, we\'re gonna have to put that
tube in, we\'re gonna, we better put him on the ventilator but it\'ll just be for

01:13:30.000 --> 01:13:34.999
a short while.\' And before you know it you end
up and... yeah, it\'s, uh, and it, but it\'s

01:13:35.000 --> 01:13:39.999
real hard not to do it and that\'s,
that\'s, that\'s the problem.

01:13:40.000 --> 01:13:44.999
But what we worry about is, you know, a decision that you
made in the lawyers office six months ago or two years ago

01:13:45.000 --> 01:13:49.999
does, is that really, should that really direct
what we do right now. You know, we go, if we

01:13:50.000 --> 01:13:54.999
go back to Mr. McCuller(ph) Mr. McCuller changed his mind
about eight times in, uh, in six weeks about what he wanted

01:13:55.000 --> 01:13:59.999
and, he, and what he would say to me is, \'Well
you know what I want Dr. Connor.\' And I\'d say,

01:14:00.000 --> 01:14:04.999
I\'d say, \'Well I kinda know what you want Mr.
McCuller but I\'m not sure exactly what you want.

01:14:05.000 --> 01:14:09.999
I\'m not sure what, what I would have to do right now if you toppled over
in the bed.\' He goes, \'Well, you know, do whatever you think is right.\'

01:14:10.000 --> 01:14:14.999
And it\'s, it\'s, which is actually not an
unreasonable thing to say but it\'s, it just, it

01:14:15.000 --> 01:14:19.999
speaks to the difficulty of the situation.

01:14:20.000 --> 01:14:25.000
[music]