Episode Transcript
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Speaker 1 (00:09):
To Night on Frontline an intimate journey to the edge
of life.
Speaker 2 (00:14):
Nobody wants to die, and nobody wants to die badly.
Speaker 3 (00:19):
Into the heart of modern medicine, there's almost always something
else that we can do to put off the inevitable.
Speaker 1 (00:27):
Where patients, families, and doctors face the hardest decisions.
Speaker 4 (00:32):
If you're tired and you don't want us to do
this anymore, that's okay with me.
Speaker 1 (00:37):
The moments of hope.
Speaker 5 (00:38):
People surprise us all the time. Patients that we didn't
think could breathe to breathe.
Speaker 6 (00:43):
Patience with severe illness will go with you to the edge.
Speaker 1 (00:48):
The will to fight, have to why give up?
Speaker 7 (00:56):
What's that going to do?
Speaker 1 (00:58):
And the courage to.
Speaker 8 (00:59):
Let I think doing nothing is a very important consideration.
It really depends on what you.
Speaker 1 (01:07):
Want to Night on frontline, facing death. In the intensive
(01:27):
care unit at Mount Sina Hospital in New York City,
a family gathers Gendolina Laramillo has been kept alive on
a ventilator for the last five days.
Speaker 9 (01:42):
She's not doing well. She's dying.
Speaker 1 (01:50):
Very difficult, we know, with every major organ failing from
end stage liver disease. Her family is now faced with
taking her off life support.
Speaker 9 (02:00):
We have a decision to make. One of the decisions
is whether we should take the tube from the mouth
and take it out. Does he have thoughts about that? Okay,
so let me prepare you for what may happen. The
(02:21):
ICU is at the apex of life and death. We
give a little bit of dose of the sedative to
make sure she feels no pain. We have a tremendous
amount of technology that prolonged life, but ultimately we can't
overcome the patient's illness. In most cases, they have cancer,
(02:46):
they have kidney disease, they have end stage liver disease,
They have these diseases that are life shortening after we
remove the tube. Now, if you look at the history
of critical care, the idea of an intensive carrying it
was for you to come there with a life threatening
illness and respond to the treatment and get better. Unfortunately,
(03:10):
what's happened is that Americans are now coming to ice
us to die. Okay, we're gonna take it out.
Speaker 10 (03:23):
Okay.
Speaker 1 (03:26):
Today more Americans die in hospitals than anywhere else, often
after prolonged illness and many medical interventions.
Speaker 3 (03:37):
What modern medicine is capable of doing is almost what
twenty years ago was considered science fiction. Essentially, you can
support pretty much every body system for years because you
can keep their lungs breathing and keep their heart beating,
keep their blood pressure up, and keep their blood flowing.
(03:59):
That an animation state goes on forever. And so the
decisions the end of life have become much more complicated
for everyone involved.
Speaker 1 (04:12):
As healthcare costs continue to escalate, there is growing concern
over the billions of dollars that Americans now spend each
year on end of life care. There's a tremendous pressure.
Speaker 6 (04:24):
Now to reduce care to numbers as though there's an
algorithm for every decision. When you look at Medicare data
on expenditures at end of life and what is very
glibly termed waste, you know, thirty percent of all care
(04:48):
is waste. That's the new mantra. It's very hard to
know what that means, and it's very hard to bring
that out of Washington and into a hospital and at
the bedside with a single individual.
Speaker 11 (05:07):
Facing death, HI can just cross my hand here you God.
Speaker 9 (05:21):
Put your head down.
Speaker 1 (05:23):
Robert Bernardini is forty seven years old. He had a
massive stroke two years ago. And has been living in
a nursing home. His cost of care is covered by Medicaid.
Speaker 10 (05:35):
He was here two months ago. Here also be pneumonia.
Speaker 12 (05:39):
He got better.
Speaker 10 (05:40):
They send him back to the nursing home and came
back in Tuesday, and since then he's been on the machine.
Speaker 1 (05:49):
When Robert came into the hospital with pneumonia, he had
a cardiac arrest and was resuscitated. He has now been
on a ventilator in the intensive care unit for over
a week.
Speaker 10 (06:00):
The first two days he was listening to me because
he would. I would tell him, Bobby, if you hear me,
touch my hands, and he would.
Speaker 9 (06:09):
But now I.
Speaker 10 (06:09):
Don't know what it is that has not happening like
that anymore.
Speaker 9 (06:15):
Nearly ninety five percent of our patients cannot communicate because
of either their underlying illness or because of the heavy
sedation we're providing. So what happens is is that most
of the care and interventions are discussed with the health
care decision maker, who may be a family member or
a healthcare proxy. In a perfect world, the patient designates
(06:37):
a health care proxy and has a discussion about what
their preferences would be at the end of life, but
many of the patients who end up in the intensive
care unit, those discussions have never happened, and the critical
care doctors, and this causes a tremendous amount of burden
for everybody because they now have to make life or
death decisions for somebody else. So we know that he
(07:03):
had his underlying problems, right, So he has his emphysema,
and we know he's had a stroke and his underlying
HIV as well. From the standpoint of his brain. It's
unclear whether he's had long term damage from the cardiac arrest,
(07:25):
but it does appear that he's waking up. The bigger
problem I think right now is his lungs. If we're
unable to safely get him off the artificial respirator removes
it to safely, then the next step is what we
call a tricheotomy. Is right, right, but there is a
(07:47):
tremendous amount of pain and suffering that can go along
with that as well. It will certainly prolong his life.
The question is will it improve it?
Speaker 10 (08:07):
Say, I don't know what to do about this. Should
I just let him keep? I mean in this condition,
I don't know. I don't want him to suffer anymore.
I mean I'm self freaming, and I know he is also.
Speaker 13 (08:22):
Now.
Speaker 10 (08:22):
I can't handle this no more, but I just hope
that I make the right choice.
Speaker 4 (08:29):
I don't know.
Speaker 9 (08:30):
I don't know, I really don't know.
Speaker 2 (08:35):
These are decisions about whether people are going to be
alive or not alive, and if they are alive, if
they're going to be living with dependence on life supports
or not, or inequality of life that may or may
not be acceptable to them. The risk is that somebody
(08:56):
ends up in a position that they absolute we do
not want to be in, and they are very vulnerable
and voiceless and cannot extricate themselves from that position. So
she is very, very wasted, you know, very poor nutritional status.
She's had multiple amputations of her digits from her underlying disease.
Speaker 1 (09:20):
Diana Reid is thirty one years old and has claroderma,
a progressive disease that causes the skin to tighten and
major organs to shut down.
Speaker 3 (09:29):
You've got a patient who was in shock.
Speaker 1 (09:32):
When she first came to the ICU two weeks ago.
She was in respiratory distress and had to be intubated,
although Diana told doctors that she did not want to
be permanently dependent on machines. Her family is not ready
to take her off the ventilator.
Speaker 2 (09:49):
Now, let's address the family situation, because we did meet
with them yesterday and they're coming back in today, and
we have some difficult issues that we've got to address
with them. The doing is giving her every form of
support that we can for all of her organs. She's
getting maximum support from the respirator, she's getting medication to
(10:10):
keep her blood pressure up. Her kidneys really haven't been working.
There are clinical situations where the odds are so overwhelming
that someone can survive the hospitalization in a condition that
they would find acceptable. Then using this technology to support
(10:35):
the physiology of the patient doesn't make sense. And yet
for almost everybody involved, it feels much more difficult to
stop something that's already been started.
Speaker 3 (10:48):
Right now, I want her chief her the way she.
Speaker 9 (10:51):
Is on the respirator.
Speaker 2 (10:53):
You want her on the respirator.
Speaker 13 (10:54):
Okay, that's my best, Yai Satartia, Lucien.
Speaker 14 (11:13):
Carames, you, Louis Hanserli claud.
Speaker 1 (11:20):
Yet Martha Lareville is eighty six years old and has dementia.
She has been intubated for two weeks. And now her
daughter's Nadesia nurse and Shirley, a physician, have to decide
whether to remove her from the ventilator.
Speaker 14 (11:36):
Gluaratwas seniorges not repe qosieur tons la santitier Qutoraiugien, Kurtavo
felt camosiel donuso, Roduino Tropaco, Tidia.
Speaker 13 (11:59):
Frances less.
Speaker 15 (12:08):
And let's yet, she loves life. She's the one that
always say, oh, I call nine one one right away.
And even though she was not acknowledging any one, we
didn't know she was, she knows the surrounding. She lived
up those two fingers and short of course we applaud
(12:29):
We were so happy about it. I myself would not
want to put Mom through a trick and I'm not
sure at this point what benefit is that will that
prolong on the life that she's right now for one
month or two months, And although it is something that
will be missed greatly, but to me, if it gets
(12:51):
to that, it's something I would accept because.
Speaker 9 (12:54):
Of compassion for her.
Speaker 15 (12:57):
My sister, in the other hand, have a different opinion.
Speaker 16 (13:00):
I don't want to be the one to see DNA
and to be responsible for a day before a time.
I want to make sure that the help was provided
and she gets it. I would not stop her from breathing.
Speaker 1 (13:11):
I would help.
Speaker 16 (13:12):
I would maintain her until the last minute.
Speaker 3 (13:15):
I mean, who am I?
Speaker 6 (13:16):
Who are you?
Speaker 17 (13:17):
We cannot decide.
Speaker 7 (13:18):
I want to see one day at a time and.
Speaker 13 (13:20):
Take it therefore of us.
Speaker 15 (13:22):
We will take a vote, including the grandchildren, and see
what we comes out to. And whatever comes out, that's
what we're gonna abide by.
Speaker 9 (13:33):
Are you nice to say?
Speaker 13 (13:35):
Yeah?
Speaker 1 (13:36):
The Laurreaville family is meeting with doctors to discuss taking
their mother off the respirator.
Speaker 17 (13:43):
We've come to a crossroad as too, with regards to
a decision. People cannot stay on a ventilator with a
tomb for a long time, giving the possibility of infections
and other problems they arise. If it's successful, we remove
the too, she's able to breathe on her home.
Speaker 13 (14:03):
The question is.
Speaker 17 (14:06):
If we remove the two and she does not breathe
on her own, what should we do?
Speaker 15 (14:14):
First of all, I want to know if she needs
to be reintubated again, can she be placed the same
way back o'rally, and if so, how long or does
she have to have a trick on actual surgical on trick.
Speaker 5 (14:26):
You okay, So I think it's important to realize that
what got her intubated is that she aspirated, not on
food likely but just her own secretions. And that's a
part of the natural history of dementia. So that will
happen again. So if we take the two bout, it's
highly likely that at some point it's going to have
to go back in. If we do that, we're going
(14:47):
to be exactly where we are right now.
Speaker 18 (14:49):
Again.
Speaker 16 (14:50):
I would go for the trick, and that's what I
think mother would have wanted any respected and the quality,
the quality of life, you know, you meant to be
seen because we know that you know that Adle's eismeers
is progressing. You know, we don't know if she's going
to be better tomorrow. She was not improving much. You know,
we don't know exactly she's going to survive. Are you
betting on how many days, how many months, how many weeks?
Speaker 19 (15:12):
You know, we don't know.
Speaker 5 (15:15):
You never really want to impose your own personal morals
or beliefs on a family, But I mean, the truth is,
and I thought that probably the most humane thing to
do would be to take the tea about and to
see if she could breathe, and if she couldn't, then
to just make sure she was comfortable. But that's my
own personal bias.
Speaker 1 (15:36):
The family voted two to one that if the extirbation failed,
they would do the tracheotomy.
Speaker 7 (15:43):
Okay, they fail, thanks fail, My good car occupable.
Speaker 13 (15:59):
More.
Speaker 17 (16:02):
She's breathing respiration eighteen s say, heart rate one oh
four ops, generation ninety six percent.
Speaker 20 (16:14):
Oh God, would like it to breathe.
Speaker 13 (16:18):
Okay.
Speaker 5 (16:19):
People surprise us all the time. Patients that we didn't
think could breathe do breathe, and people we didn't think
would get off life support do get off life support.
So every time it's scary because you're afraid that maybe
you're guiding someone to stop treatment when maybe that's premature.
So it's very very fine line.
Speaker 6 (16:53):
For every disease, there's always a tail end of the curve.
There's a group of people who five expectations. We don't
know what will happen for any individual. We can look
at probabilities and chances, but the way progress is made,
(17:14):
the way advances occur, requires going to the very edge
and pushing very hard. Many times in sunglens we fail,
but that is what often drives medicine forward and leads
to discovery. Here in the bone marrow transplant unit, a
(17:35):
team of oncologists treats people with blood cancer who a
generation ago would have died, but now a bone marrow
transplant gives them a chance of survival.
Speaker 19 (17:47):
We are an extraordinarily aggressive group of physicians. We couldn't
do what we do if we weren't very aggressive. We
can endure some level of suffering among our patients because
we belie leave that while we do make them suffer,
that there is a greater good at the end of it,
that they will come out the other side. And we've
seen it enough times that we hold it as a belief.
(18:11):
When you transfuse her today, let's get a post transfusion CBC.
Speaker 1 (18:15):
A bone marrow transplant is one of the most drastic
therapies in oncology, and it's expensive. The cost of a
transplant alone can be close to two hundred and fifty
thousand dollars.
Speaker 21 (18:28):
Stem cell transplantation is viewed as the final strategy that
has the potential to cured diseases that are otherwise incurable.
We're using super lethal doses of radiation. We're talking about
radiation that patients were exposed to nearly with the A
bomb and they get sick enough so that they can
die from infection or bleeding or other organ toxicities. The
(18:52):
mortality from transplant can be twenty five thirty percent from
the treatment. On the other hand, we're dealing with diseases
which will otherwise be fatal. So that's a struggle we
have all the time, you know, trying to weigh the
potential risk of death from the procedure and the risk
of death from the disease.
Speaker 22 (19:12):
Morning.
Speaker 1 (19:15):
When Albert ALBERTI fifty three was first diagnosed two years
ago with MDS, a type of leukemia, he was given
only months to live. Married with three young children, he
knew a bone marrow transplant was his only hope for
a cure.
Speaker 3 (19:35):
So Albert, how is this kin doing?
Speaker 7 (19:37):
How is that ring not good?
Speaker 20 (19:40):
Is he more eaty compared with last week?
Speaker 9 (19:43):
Yes, yeah, this kin is very very well.
Speaker 1 (19:46):
Albert had one transplant but it failed, and then he
had another. Both were covered by his insurance, but with
each one he's had terrible complications, including pneumonia and a stroke.
Speaker 22 (20:01):
When the first transplant didn't work, we went to the
second one and I still stay positive. But then when
I had the stroke that that sort of broke me.
And I always felt myself as a pretty tough guy,
but my emotions lately have been so it's it's it's
(20:24):
it's it wears at you these diseases. I had my
appendix out once and it was a week, it was
back to normal. Broke my arm six weeks and back
to normal. It's uh eleven months and they.
Speaker 7 (20:38):
Have no answers.
Speaker 20 (20:40):
We are just still debating about what to give you.
We don't want to harm you, we want to help
you with right. We are still looking for the donors
for you.
Speaker 22 (20:48):
If I have anyother UH stem cell transplant, I would
have to get stronger, heavier, right because the chemo treatment
would they stronger.
Speaker 16 (20:57):
You are the the that it would be for you.
Speaker 22 (20:59):
So oh okay, see, hopefully we find another donor and
UH I could go through another UH transplant and UH
this form will be successful and I could get back
to a normal life.
Speaker 7 (21:16):
That's UH, that's my goal.
Speaker 4 (21:19):
It's gotta take every step possible.
Speaker 7 (21:22):
You know, it's UH, it's tough, but you know, w.
Speaker 4 (21:26):
Why give up? What's that gonna do?
Speaker 1 (21:31):
Exactly?
Speaker 20 (21:35):
Some patients want to know what are my chances of surviving.
But even when the numbers are low, they still go
for it because the option of living is worth it.
It's very difficult for me to say to a patient,
I don't think you have any treatment opportunity. I I
(21:57):
never said that to any patient. Never I think I
I can humanly say that to a patient. He always say,
you know, what, are we gonna do these or the other,
even if it's in a pertiative way, but they offer.
Speaker 19 (22:15):
I always say that it is something to do.
Speaker 14 (22:22):
Yeah, crazy, Oh no, you go every Monday, let's get
Lento's pizza.
Speaker 1 (22:32):
For nearly nine months, John Maloney has been in the
hospital with one complication after another.
Speaker 18 (22:40):
Sandwich.
Speaker 1 (22:41):
But now there is a chance to go home.
Speaker 5 (22:43):
You get the fresh hand.
Speaker 23 (22:45):
Okay, this has been crazy. He has been hospitalized since January.
It's October now, I'm watching the seasons.
Speaker 21 (22:54):
Go.
Speaker 23 (22:54):
I opened my pool. I closed my pool. He never
even saw it. He hasn't stopped fighting in two years now,
it's been two years, and he's just keep going, keep going.
I'm gonna do this and we're gonna have time, and
we're gonna do things, and I'm gonna get better. And
that's still his mantra, that's still what he's saying.
Speaker 1 (23:16):
John Maloney, a corrections officer, was fifty five when he
was first diagnosed with multiple myeloma. He's tried every available treatment,
including two bone marrow transplants, but his myeloma keeps coming back.
Speaker 18 (23:33):
You're gonna lift up aside as he can, and it's
hard to watch.
Speaker 19 (23:38):
You know.
Speaker 23 (23:39):
John was six foot three, two hundred and fifty pounds.
He's like one hundred and fifty pounds now. You know,
it's very hard to see him like this. Sometimes when
I come into the hospital, I'm almost gasping, you know,
like wow. And I told John, I said, no more
can to treatment, no more chemo. I can't see you
(23:59):
be any more debilitated. But then you talk and you say, okay,
let's try something mild because doing nothing. It's scary to
do nothing, because what if I don't want him to die?
You know, So you feel like you want to do something,
I'm ready.
Speaker 7 (24:17):
Can you believe it?
Speaker 19 (24:20):
Well, apparently you did the stairs.
Speaker 1 (24:24):
Although doctors believe they can no longer control his mile loma,
John doesn't want to stop treatment, so they've agreed to
send him home on a mild chemotherapy.
Speaker 19 (24:33):
I still think you're not strong enough to get big
time chimo in the hospital, and you, let's face it,
you've been here for so long it's time to leave
for a little while.
Speaker 12 (24:43):
But I think we've accomplished the goal that we've tried
to accomplish, to get you.
Speaker 19 (24:47):
On some ooral chemotherapy, to get you strong enough to
go home, to keep things stable.
Speaker 2 (24:52):
And I think you know the goal was to go home.
Speaker 19 (24:55):
So yeah, okay, sounds good.
Speaker 18 (25:00):
Okay, have a wonderful weekend at.
Speaker 9 (25:04):
Monday.
Speaker 13 (25:04):
Okay, back home for a while.
Speaker 18 (25:11):
No, no, it's back home for good.
Speaker 19 (25:17):
Some physicians can keep giving treatment and some find it unacceptable,
and that is I think where the art and science
of medicine mix. The lines are blurred, and they're also
different for different physicians. Sometimes there are patients for whom
(25:41):
I think about them and I wish we'd stopped earlier
because I think they suffered unnecessarily, But in the moment
and the heat of that moment, maybe I didn't realize
it at that time. Sometimes there are forces outside of
the patient and myself that are the patient's family, other physicians, uh,
and so sorting that out can be very, very tricky
(26:04):
in those moments, and each situation is slightly different.
Speaker 4 (26:09):
The significant other came and said this morning that he
told you he wanted he was tired and he wanted
to if anything to be a DNR.
Speaker 9 (26:16):
He still wanted everything done.
Speaker 1 (26:17):
But a patient's girlfriend has just told doctors that he
wants to sign and do not Resuscitate.
Speaker 23 (26:22):
Order a d n R and needs to be changed
every three days.
Speaker 1 (26:27):
Norman Smelley has been in the hospital for two months
suffering from life threatening complications of his transplant.
Speaker 4 (26:35):
Tell me what's happening. You're having pain in your belly.
Speaker 9 (26:47):
You're scared of you?
Speaker 4 (26:48):
What are you scared of?
Speaker 18 (26:51):
I don't want to do it if you're.
Speaker 4 (26:53):
Scared, nor we don't have to do it. There's nothing
wrong with the catheter.
Speaker 1 (26:57):
It's although he's always told doctor Rosman that he wants
everything done to stay alive that important, he's now starting
to refuse treatments and she needs to know if he's
changed his mind.
Speaker 4 (27:09):
Let me ask you something.
Speaker 19 (27:10):
Rita said that you've been thinking a little bit about
if you ever need an event, what you would do
or what you would want us to do.
Speaker 4 (27:17):
And have you thought about that more? And do you
wanna tell me something about that.
Speaker 22 (27:26):
Hm.
Speaker 2 (27:33):
If something should happen and you would have trouble breathing,
do you want to be put on a respirator to
help you breathe?
Speaker 6 (27:44):
You do?
Speaker 4 (27:45):
Is that a yes?
Speaker 7 (27:46):
Okay?
Speaker 13 (27:47):
All right?
Speaker 4 (27:48):
That's what you always did express to me, but I
wanna make sure that hasn't changed. Listen.
Speaker 19 (27:55):
I wanna say something that you should think about today,
but you don't have to say anything about it now.
Speaker 4 (27:59):
I just wanna say it to you.
Speaker 5 (28:00):
Okay.
Speaker 4 (28:02):
If you're tired and you don't want us to do
this anymore, that's okay with me, but you gotta let
me know. I don't want to put you through procedures
that you don't wanna go through, but I don't wanna
not do the things that are right in terms of
trying to help you get better. Okay, now, this is
(28:25):
what I told him.
Speaker 9 (28:26):
I told him if he doesn't wanna.
Speaker 4 (28:29):
Do it anymore.
Speaker 13 (28:31):
But m.
Speaker 1 (28:34):
Norman's girlfriend, GiMA, has been with him twenty four hours
a day for the past two months.
Speaker 19 (28:39):
I'm trying to read from his face, but she is
not his.
Speaker 1 (28:42):
Health care proxy.
Speaker 4 (28:43):
I want to respect what he wants and he wants
Society Vienna he didn't say that just now we asked him.
Speaker 19 (28:51):
So I believe you that he said it to you.
But I think then is what I think is hap.
I think it's kind of going. I think he's everything
is yes, no, no, I ask who.
Speaker 4 (29:01):
Is the healthcare proxy?
Speaker 19 (29:02):
Phyllis, if you can stop breathing, do you want us
to put.
Speaker 18 (29:06):
You on an event?
Speaker 13 (29:07):
Yes?
Speaker 9 (29:09):
Oh he did it, But I think one minute this way,
I know.
Speaker 7 (29:15):
Him what he won.
Speaker 16 (29:20):
I'm not the official health care proxy, but let me
tell you, I don't want to see him suffering.
Speaker 7 (29:28):
You know, people poking him. That's it.
Speaker 24 (29:32):
Nowadays.
Speaker 7 (29:33):
He doesn't want to be bothered. You know, let me go,
let me go.
Speaker 19 (29:37):
It's not one time he's so you know he's diet.
Speaker 13 (29:42):
I think.
Speaker 1 (29:49):
It's the next morning and overnight Norman got worse. His
liver began to fail.
Speaker 19 (29:56):
How are you so?
Speaker 1 (29:57):
Doctors called in His sister, Phyllis is his health care proxy.
Speaker 25 (30:02):
A month ago he discussed healthcare proxy and he said
to me, I want everything. That's it, he said, I
want everything. He's a young man and you want everything.
I said, okay, Norman, those your wishes, I will do it.
Speaker 7 (30:20):
He knows his the illness.
Speaker 20 (30:21):
He knows.
Speaker 7 (30:23):
So if he says he wants everything to stay alive,
That's what I'm going to do.
Speaker 1 (30:30):
Although Jimas still believes he wants to stop treatment, doctor
Rossmann and Norman's sister decided to send him to the
intensive care unit to see if he could be stabilized.
Speaker 19 (30:42):
Sometimes it's not completely clear what's reversible isn't Will they
rally from this moment, from this infection. You can count
all the things that are moving against them, but that
doesn't necessarily mean that the prognosis is dismal. Sometimes those
things can still and it only takes a little bit
time to put them over the edge and back into
(31:02):
the living. But in those wee hours of the night,
when you think about the patients and am I doing
the right thing and so on, I think there are
a lot of question marks that come up, and sometimes
you fight to the bitter end.
Speaker 2 (31:16):
And you still lose.
Speaker 3 (31:23):
The degree of uncertainty you have to deal with now
is the doctor. It's hard to describe how much greater
it is than it ever was before, because there's so
much innovation and because of how rapidly it evolves, there's
almost always something else that we can do to put
off the inevitable, another course of chemotherapy, a little bit
(31:46):
more radiation. What if we got one more cat scan,
What if we explore this person's belly one more time.
There's always been nagging concern in the back of your mind.
Have I really left no stone unturned?
Speaker 6 (32:00):
In the context of bohemera transplant, It's even more uncertain
because this is a field of medicine that has advanced
so much, where new treatments and new interventions can change
outcome so that now many many lives are saved. But
(32:25):
you cannot escape the reality that too often that success
is not the case, and you risk amplifying suffering.
Speaker 18 (32:38):
Hi, Hey, what happens around seven o' clark last night?
I was feeling very unstable, My balance was off, and
I put my children to bed.
Speaker 1 (32:56):
Early three weeks after his clinic visit, Alberti was back
in the hospital.
Speaker 18 (33:02):
And I just fell off the toilet bowl slow motion.
I couldn't stop myself.
Speaker 24 (33:07):
Are you having any headache today?
Speaker 8 (33:10):
No?
Speaker 13 (33:10):
Any change in your vision?
Speaker 9 (33:13):
No, we try and stand up.
Speaker 8 (33:17):
Mister Alberti was in a really horrible position because not
only had the first transplant fail, but his underlying disease
had recurred. Don't worry, I'm holding onto it.
Speaker 24 (33:28):
Small steps, and he was so debilitated that the reality
of him being strong enough to withstand the rigors of
another transplant was minuscule.
Speaker 8 (33:41):
Al Right, so this is what we'll do. I'll go
look at the cat scan and then we'll speak with
a neurologist. One thing that makes our patients different from
other patient populations is by the time that we transplant
them first time second time, they've been through so much
that at that point, stopping therapy is not even within
(34:01):
the mindset of the majority of our patients. Stopping treatment
almost means that we acknowledge that death is near.
Speaker 18 (34:27):
Half the.
Speaker 13 (34:47):
Things to see how to say again?
Speaker 6 (34:49):
Hi.
Speaker 1 (34:51):
John Maloney is also back in the hospital home for
only a week. He was brought back in on an
emergency admission.
Speaker 8 (34:58):
Definitely are a lot better than yesterday.
Speaker 13 (35:02):
I didn't even know what day it was to any where.
I wore about you.
Speaker 23 (35:06):
On Monday.
Speaker 3 (35:07):
I was in good shape.
Speaker 7 (35:09):
We started out the door and I'm telling you so
somebody shot me.
Speaker 9 (35:15):
That was Friday.
Speaker 23 (35:17):
I kinda you've done wish we didn't do that second
stem cell transplant, But he doesn't. He said, I had
to take the chance I had to, you know, so
we have different feelings on that to bring down your
calcim you know, I think everything went downhill from that,
the chemo that he had prior to the stem cell transplant.
(35:37):
Even though he lived, he survived, he hasn't walked since.
Speaker 8 (35:43):
I do think that the disease is getting worse. So
we need to think about where to go from here,
you know, knowing that you've had many, many therapies for
your mieloma, including two transplants, and now when we make
a decision, we need to think very carefully because many
(36:05):
therapies that we give you may affect your quality of
life or may even shorten your life. So things to
think about would be, you know, to go home.
Speaker 4 (36:22):
With a lot of support.
Speaker 8 (36:27):
With home hospice would be a possibility or not. Or
if John wants to try further therapy, then we can
try to tweak this regimen m that you've received, but
I'm not sure it would really help.
Speaker 23 (36:43):
But if you're saying to do therapy and it's not
gonna help, so why not just do nothing?
Speaker 19 (36:49):
Would it still be to stay the same?
Speaker 8 (36:52):
I think doing nothing is a very important consideration. It
really depends on what you want.
Speaker 3 (37:03):
Antha, we'll talk.
Speaker 8 (37:09):
Alright, John, I'm gonna be back to check on you
a little bit later, Okay, alright, alright, alright, and Debbie
I'll be back with you.
Speaker 10 (37:19):
Okay, okay, alright.
Speaker 23 (37:28):
We can't keep bombing your body going.
Speaker 10 (37:30):
We can't.
Speaker 19 (37:31):
That's the bottom line.
Speaker 7 (37:32):
Okay, bomb me.
Speaker 18 (37:36):
Rugby like that, then, diad.
Speaker 2 (38:01):
Nobody wants to die. Nobody wants to die, and at
the same time, nobody wants to die badly.
Speaker 6 (38:12):
And that is my job. My job is to.
Speaker 2 (38:21):
Try to prevent people from dying if there's a possible
way to do it that will preserve a quality of
life that's acceptable to them. But if they can't, go
on to try to make the death.
Speaker 7 (38:38):
A good death.
Speaker 9 (38:41):
Were you here during the night, Okay, good morning, Norman.
Speaker 2 (38:48):
We're going to just listen to your chest and do
a few other things on the exam and we'll try
very hard not to hurt in any way.
Speaker 7 (38:57):
Can you just open your eyes up a little bit
for me and look all the way up.
Speaker 1 (39:01):
It's been two days since Norman Smelle was brought to
the ICU from the bone marrow transplant unit, and he
has continued to get worse.
Speaker 2 (39:10):
Don't push too hard because uh, he's got pain in
his thigh.
Speaker 1 (39:14):
So doctor Nelson wants to meet with Norman's family and
doctor Rossman to discuss his prognosis.
Speaker 19 (39:21):
He has a lot of medical problems, as you know,
and doesn't have terrific counts. He got Grade four graphers
as host disease of the bowel, which I have yet
to see somebody recover from and live through. He also
has CMVs, so he has a lot a lot of problems.
Speaker 22 (39:40):
You know.
Speaker 19 (39:40):
I had many conversations with Norman myself about his prognosis
and what would happen and what he wanted right. But
you can have a lot of conversations about these things,
but I think when the moments come, I don't think
that anybody can be completely prepared for what it's really
(40:04):
all about.
Speaker 13 (40:05):
Hi, I am doctor Savandron.
Speaker 25 (40:07):
So you know he had the biopsy the other night,
but looks like that is the GVHD.
Speaker 7 (40:13):
But I have a question, sure, and I would like
a straight answer. Is my brother dying? I think I
need I need a straight answer.
Speaker 2 (40:26):
What do you think, phillis?
Speaker 4 (40:28):
What do you think?
Speaker 7 (40:29):
Wait?
Speaker 9 (40:30):
I mean, I think we can say what we think,
but what is your gut feeling about it.
Speaker 25 (40:35):
My gut feeling is that this there's not going to
be a positive outcome here, Okay, there's I don't see
Norman walking out of this hospital.
Speaker 2 (40:48):
I think you're right, Phyllis. I think he's dying and
we have trouble picturing him leaving the hospital. Also, I
think he has too many problems based on what dot
Com Drassman is telling me and what we've observed in
the ICU, and they're all playing against each other in
a very bad way.
Speaker 16 (41:08):
Do you think jam he's been telling me he doesn't
want anything.
Speaker 9 (41:15):
That's why I remember when I asked him, if you.
Speaker 7 (41:17):
Yeah, he doesn't want anything for since he was upset.
Speaker 25 (41:23):
Unfortunately for me, then when i'd come he never says
any of those things to me.
Speaker 7 (41:30):
I just don't want him to pain.
Speaker 9 (41:33):
He's not gonna be in pain. He is not gonna
be in pain.
Speaker 2 (41:41):
The uncertainty is the most disturbing part of the decision making,
and the availability of the therapies has created this fiction
that we can orchestrate this one way or the other,
when the truth of it is that for all of
(42:02):
this magnificent technology, the underlying illness and the medical condition
of the patient are far and away the most important
factors in determining the outcome. But it feels like when
you have the technology available that your decisions to use
(42:23):
or not use it are like the decisions to allow
life or not allow life. And that's not a position
that any of us wants.
Speaker 13 (42:36):
To be in.
Speaker 1 (42:39):
After meeting with doctors in the ICU, Norman's family decided
to sign a DNR and focus exclusively on comfort care.
Speaker 19 (42:50):
When there's no chance that things are going to get better,
then I think the only hope you can offer is
for that good death, whatever that is, and for allowing
some comfort and some acceptance of the situation.
Speaker 3 (43:08):
But you know, I don't know.
Speaker 19 (43:13):
I think that the concept of a good death probably
matters more to those who are around the one who
is dying, because they hold that memory in their mind.
But I don't know that the person who's going through it,
who knows.
Speaker 23 (43:40):
He won't say that he's going to die from this,
you know, as crazy as that sounds, he still won't
say it. I think he thinks if he says that
he's giving in, he's giving into.
Speaker 9 (43:55):
The cancer.
Speaker 23 (43:56):
He's giving in and he's saying the possibility I might
die and John won't say that.
Speaker 7 (44:05):
I don't know.
Speaker 23 (44:06):
Maybe I'm terrified now. I think this week has changed
me because I think I really believe that he was
going to get stronger, and I really didn't think this
was going to happen. So I think now I'm scared,
anger out.
Speaker 14 (44:27):
How are you?
Speaker 4 (44:29):
You're still bleeding a lot? Oh, I don't know.
Speaker 13 (44:32):
I was.
Speaker 1 (44:34):
Oh sure, it's been one week since John stopped chemotherapy
and now he's bleeding internally. Earlier in the day, doctors
needed to know if he wanted life sustaining measures to
keep him alive, or if he wanted to sign a
do not resuscitate order.
Speaker 4 (44:54):
So you spoke with doctor i Sawa today.
Speaker 7 (44:56):
Yeah what did he say?
Speaker 1 (44:59):
Oh, we order of course your feet and then we'll
go on make a choice and we'll see what happens
and up for it too.
Speaker 13 (45:11):
Men.
Speaker 7 (45:13):
So, uh what John?
Speaker 23 (45:15):
You're not understanding, honey, not understanding.
Speaker 9 (45:17):
You're not understanding what he's saying to you.
Speaker 23 (45:20):
He's saying, if you ever go into distress again, you
have a choice to say, yes, do everything you can.
I wanna live on life support or no, I've had enough.
Don say Soula is telling you that it's not gonna help,
it's not gonna make you better at that point.
Speaker 18 (45:38):
If he thought it would, he would do it.
Speaker 4 (45:39):
But at that point, it's just sustaining your life.
Speaker 18 (45:41):
And that's the choice you have to make that.
Speaker 9 (45:45):
Right, right, okay. And the other thing is to get
the blood under control.
Speaker 18 (45:50):
That's what doctor Osma was just talking to.
Speaker 7 (45:51):
You, Okay.
Speaker 13 (45:53):
But I don't know.
Speaker 19 (45:54):
That's why I raise it cause I'm not sure that
you're gonna be able to get back home again.
Speaker 12 (45:59):
I think we could do everything to get you back home,
but then what might happen is the bleeding.
Speaker 19 (46:10):
Might start again because we're not really doing anything to
definitively fix that bleeding because we really just can't anymore.
Speaker 4 (46:16):
Right, we'll talk about things. You need a lot to
take in today.
Speaker 18 (46:21):
There's a lot of stuff that have been said I.
Speaker 4 (46:25):
Not prepared to hear.
Speaker 7 (46:26):
So that's okay, that's okay.
Speaker 13 (46:32):
I ain't going anywhere.
Speaker 19 (46:49):
Do you have like flexibility to take a little bit
of time?
Speaker 4 (46:53):
I don't know I have to do. You need me
to call your boss, like, like how much time a couple.
Speaker 7 (46:59):
Of weeks.
Speaker 9 (47:03):
And you're saying that's when it's at the end.
Speaker 19 (47:06):
Yeah, So you have your time with him and he
has time with you, and you move Camilo.
Speaker 7 (47:25):
World Ray see.
Speaker 13 (47:27):
You said.
Speaker 1 (47:42):
John never did sign a dn R, but he did
agree to go to hospice. One day later, he would die.
Speaker 22 (48:04):
Dormant.
Speaker 1 (48:06):
Two days after his family decided to stop aggressive treatment,
Norman Smelley would die from complications of his transplant.
Speaker 19 (48:16):
I'm not sure that the transplant prolonged his life, but
I'm not sure that he would have lived much longer
without it. He died a much more difficult death after
the transplant than he would have died had he not
chosen that. And I'm not sure that we added to
his quality of.
Speaker 9 (48:33):
Life at all.
Speaker 19 (48:36):
So of course there's some guilt. We did that to him,
now what? And so that's that's a that's yeah, I
didn't want that for him.
Speaker 8 (48:49):
What's my name?
Speaker 10 (48:51):
What's my name?
Speaker 22 (48:54):
My name?
Speaker 10 (48:55):
De nov A.
Speaker 1 (49:00):
Few days after being readmitted to the hospital, Albert Alberti
had a massive stroke. One week later, he would die.
Speaker 6 (49:12):
Patience with severe illness will go with you to the edge,
even for that small chance that they'll beat the odds
and they'll be the one who will emerge. Often they're not,
but sometimes they are, and we should be very careful
(49:36):
that we don't label as futile or meaningless some treatment
or some attempt to push the envelope, because otherwise we
will stand in place.
Speaker 1 (49:52):
Only one day after Martha Laurville surprised everyone by being
able to breathe on her own, she had to have
a tracheotomy. She has now been living on a ventilator
for over a year.
Speaker 2 (50:07):
At any given time, one hundred thousand people are chronically
critically ill on ventilators all over the country. It's estimated
that the cost of caring for these people is in
the twenty to twenty five billion dollar range annually. And
(50:27):
these are the broken survivors of intensive care. And the
better intensive care gets, the more of these broken survivors
we have.
Speaker 3 (50:38):
What we've done in medicine, by offering more and more
and being more and more aggressive, is to create the
sort of culture of expectation that when you come, you're
coming to get something more. It's really in this country,
maybe alone in the world, that we allow our doctors
to continue to practice in that way, we allow our
(51:00):
patients to continue to have that expectation. There's no question
that the technology has saved in a meaningful way, hundreds
of thousands, if not millions.
Speaker 7 (51:12):
Of lives.
Speaker 3 (51:14):
But with those advances and all of that progress, comes
an ultimate trade off, and the toll is sometimes devastating
on the patient themselves, on their family, their loved ones,
and on the healthcare system.
Speaker 26 (51:38):
Frontline is made possible by contributions to your PBS station
from viewers like you, Thank you, and by the Corporation
for Public Broadcasting. Major funding is provided by the John D.
Speaker 7 (51:51):
And Catherine T.
Speaker 26 (51:52):
MacArthur Foundation, committed to building a more just, verdant, and
peaceful world, and by Riva and David Logan, committed to
investigative journalism as the guardian of the public interest. Additional
funding is provided by the Park Foundation, committed to raising
public awareness, and by the Frontline Journalism Fund with a
(52:13):
grant from Scott Nathan and Laura de Bumas.
Speaker 12 (52:31):
For more on this and other Frontline programs, visit PBS
dot org.
Speaker 26 (52:47):
Frontline's Facing Death is available on DVD.
Speaker 19 (52:51):
To order, visit shop PBS dot org or call one
eight hundred play PBS
To Night on Frontline an intimate journey to the edge
of life.
Speaker 2 (00:14):
Nobody wants to die, and nobody wants to die badly.
Speaker 3 (00:19):
Into the heart of modern medicine, there's almost always something
else that we can do to put off the inevitable.
Speaker 1 (00:27):
Where patients, families, and doctors face the hardest decisions.
Speaker 4 (00:32):
If you're tired and you don't want us to do
this anymore, that's okay with me.
Speaker 1 (00:37):
The moments of hope.
Speaker 5 (00:38):
People surprise us all the time. Patients that we didn't
think could breathe to breathe.
Speaker 6 (00:43):
Patience with severe illness will go with you to the edge.
Speaker 1 (00:48):
The will to fight, have to why give up?
Speaker 7 (00:56):
What's that going to do?
Speaker 1 (00:58):
And the courage to.
Speaker 8 (00:59):
Let I think doing nothing is a very important consideration.
It really depends on what you.
Speaker 1 (01:07):
Want to Night on frontline, facing death. In the intensive
(01:27):
care unit at Mount Sina Hospital in New York City,
a family gathers Gendolina Laramillo has been kept alive on
a ventilator for the last five days.
Speaker 9 (01:42):
She's not doing well. She's dying.
Speaker 1 (01:50):
Very difficult, we know, with every major organ failing from
end stage liver disease. Her family is now faced with
taking her off life support.
Speaker 9 (02:00):
We have a decision to make. One of the decisions
is whether we should take the tube from the mouth
and take it out. Does he have thoughts about that? Okay,
so let me prepare you for what may happen. The
(02:21):
ICU is at the apex of life and death. We
give a little bit of dose of the sedative to
make sure she feels no pain. We have a tremendous
amount of technology that prolonged life, but ultimately we can't
overcome the patient's illness. In most cases, they have cancer,
(02:46):
they have kidney disease, they have end stage liver disease,
They have these diseases that are life shortening after we
remove the tube. Now, if you look at the history
of critical care, the idea of an intensive carrying it
was for you to come there with a life threatening
illness and respond to the treatment and get better. Unfortunately,
(03:10):
what's happened is that Americans are now coming to ice
us to die. Okay, we're gonna take it out.
Speaker 10 (03:23):
Okay.
Speaker 1 (03:26):
Today more Americans die in hospitals than anywhere else, often
after prolonged illness and many medical interventions.
Speaker 3 (03:37):
What modern medicine is capable of doing is almost what
twenty years ago was considered science fiction. Essentially, you can
support pretty much every body system for years because you
can keep their lungs breathing and keep their heart beating,
keep their blood pressure up, and keep their blood flowing.
(03:59):
That an animation state goes on forever. And so the
decisions the end of life have become much more complicated
for everyone involved.
Speaker 1 (04:12):
As healthcare costs continue to escalate, there is growing concern
over the billions of dollars that Americans now spend each
year on end of life care. There's a tremendous pressure.
Speaker 6 (04:24):
Now to reduce care to numbers as though there's an
algorithm for every decision. When you look at Medicare data
on expenditures at end of life and what is very
glibly termed waste, you know, thirty percent of all care
(04:48):
is waste. That's the new mantra. It's very hard to
know what that means, and it's very hard to bring
that out of Washington and into a hospital and at
the bedside with a single individual.
Speaker 11 (05:07):
Facing death, HI can just cross my hand here you God.
Speaker 9 (05:21):
Put your head down.
Speaker 1 (05:23):
Robert Bernardini is forty seven years old. He had a
massive stroke two years ago. And has been living in
a nursing home. His cost of care is covered by Medicaid.
Speaker 10 (05:35):
He was here two months ago. Here also be pneumonia.
Speaker 12 (05:39):
He got better.
Speaker 10 (05:40):
They send him back to the nursing home and came
back in Tuesday, and since then he's been on the machine.
Speaker 1 (05:49):
When Robert came into the hospital with pneumonia, he had
a cardiac arrest and was resuscitated. He has now been
on a ventilator in the intensive care unit for over
a week.
Speaker 10 (06:00):
The first two days he was listening to me because
he would. I would tell him, Bobby, if you hear me,
touch my hands, and he would.
Speaker 9 (06:09):
But now I.
Speaker 10 (06:09):
Don't know what it is that has not happening like
that anymore.
Speaker 9 (06:15):
Nearly ninety five percent of our patients cannot communicate because
of either their underlying illness or because of the heavy
sedation we're providing. So what happens is is that most
of the care and interventions are discussed with the health
care decision maker, who may be a family member or
a healthcare proxy. In a perfect world, the patient designates
(06:37):
a health care proxy and has a discussion about what
their preferences would be at the end of life, but
many of the patients who end up in the intensive
care unit, those discussions have never happened, and the critical
care doctors, and this causes a tremendous amount of burden
for everybody because they now have to make life or
death decisions for somebody else. So we know that he
(07:03):
had his underlying problems, right, So he has his emphysema,
and we know he's had a stroke and his underlying
HIV as well. From the standpoint of his brain. It's
unclear whether he's had long term damage from the cardiac arrest,
(07:25):
but it does appear that he's waking up. The bigger
problem I think right now is his lungs. If we're
unable to safely get him off the artificial respirator removes
it to safely, then the next step is what we
call a tricheotomy. Is right, right, but there is a
(07:47):
tremendous amount of pain and suffering that can go along
with that as well. It will certainly prolong his life.
The question is will it improve it?
Speaker 10 (08:07):
Say, I don't know what to do about this. Should
I just let him keep? I mean in this condition,
I don't know. I don't want him to suffer anymore.
I mean I'm self freaming, and I know he is also.
Speaker 13 (08:22):
Now.
Speaker 10 (08:22):
I can't handle this no more, but I just hope
that I make the right choice.
Speaker 4 (08:29):
I don't know.
Speaker 9 (08:30):
I don't know, I really don't know.
Speaker 2 (08:35):
These are decisions about whether people are going to be
alive or not alive, and if they are alive, if
they're going to be living with dependence on life supports
or not, or inequality of life that may or may
not be acceptable to them. The risk is that somebody
(08:56):
ends up in a position that they absolute we do
not want to be in, and they are very vulnerable
and voiceless and cannot extricate themselves from that position. So
she is very, very wasted, you know, very poor nutritional status.
She's had multiple amputations of her digits from her underlying disease.
Speaker 1 (09:20):
Diana Reid is thirty one years old and has claroderma,
a progressive disease that causes the skin to tighten and
major organs to shut down.
Speaker 3 (09:29):
You've got a patient who was in shock.
Speaker 1 (09:32):
When she first came to the ICU two weeks ago.
She was in respiratory distress and had to be intubated,
although Diana told doctors that she did not want to
be permanently dependent on machines. Her family is not ready
to take her off the ventilator.
Speaker 2 (09:49):
Now, let's address the family situation, because we did meet
with them yesterday and they're coming back in today, and
we have some difficult issues that we've got to address
with them. The doing is giving her every form of
support that we can for all of her organs. She's
getting maximum support from the respirator, she's getting medication to
(10:10):
keep her blood pressure up. Her kidneys really haven't been working.
There are clinical situations where the odds are so overwhelming
that someone can survive the hospitalization in a condition that
they would find acceptable. Then using this technology to support
(10:35):
the physiology of the patient doesn't make sense. And yet
for almost everybody involved, it feels much more difficult to
stop something that's already been started.
Speaker 3 (10:48):
Right now, I want her chief her the way she.
Speaker 9 (10:51):
Is on the respirator.
Speaker 2 (10:53):
You want her on the respirator.
Speaker 13 (10:54):
Okay, that's my best, Yai Satartia, Lucien.
Speaker 14 (11:13):
Carames, you, Louis Hanserli claud.
Speaker 1 (11:20):
Yet Martha Lareville is eighty six years old and has dementia.
She has been intubated for two weeks. And now her
daughter's Nadesia nurse and Shirley, a physician, have to decide
whether to remove her from the ventilator.
Speaker 14 (11:36):
Gluaratwas seniorges not repe qosieur tons la santitier Qutoraiugien, Kurtavo
felt camosiel donuso, Roduino Tropaco, Tidia.
Speaker 13 (11:59):
Frances less.
Speaker 15 (12:08):
And let's yet, she loves life. She's the one that
always say, oh, I call nine one one right away.
And even though she was not acknowledging any one, we
didn't know she was, she knows the surrounding. She lived
up those two fingers and short of course we applaud
(12:29):
We were so happy about it. I myself would not
want to put Mom through a trick and I'm not
sure at this point what benefit is that will that
prolong on the life that she's right now for one
month or two months, And although it is something that
will be missed greatly, but to me, if it gets
(12:51):
to that, it's something I would accept because.
Speaker 9 (12:54):
Of compassion for her.
Speaker 15 (12:57):
My sister, in the other hand, have a different opinion.
Speaker 16 (13:00):
I don't want to be the one to see DNA
and to be responsible for a day before a time.
I want to make sure that the help was provided
and she gets it. I would not stop her from breathing.
Speaker 1 (13:11):
I would help.
Speaker 16 (13:12):
I would maintain her until the last minute.
Speaker 3 (13:15):
I mean, who am I?
Speaker 6 (13:16):
Who are you?
Speaker 17 (13:17):
We cannot decide.
Speaker 7 (13:18):
I want to see one day at a time and.
Speaker 13 (13:20):
Take it therefore of us.
Speaker 15 (13:22):
We will take a vote, including the grandchildren, and see
what we comes out to. And whatever comes out, that's
what we're gonna abide by.
Speaker 9 (13:33):
Are you nice to say?
Speaker 13 (13:35):
Yeah?
Speaker 1 (13:36):
The Laurreaville family is meeting with doctors to discuss taking
their mother off the respirator.
Speaker 17 (13:43):
We've come to a crossroad as too, with regards to
a decision. People cannot stay on a ventilator with a
tomb for a long time, giving the possibility of infections
and other problems they arise. If it's successful, we remove
the too, she's able to breathe on her home.
Speaker 13 (14:03):
The question is.
Speaker 17 (14:06):
If we remove the two and she does not breathe
on her own, what should we do?
Speaker 15 (14:14):
First of all, I want to know if she needs
to be reintubated again, can she be placed the same
way back o'rally, and if so, how long or does
she have to have a trick on actual surgical on trick.
Speaker 5 (14:26):
You okay, So I think it's important to realize that
what got her intubated is that she aspirated, not on
food likely but just her own secretions. And that's a
part of the natural history of dementia. So that will
happen again. So if we take the two bout, it's
highly likely that at some point it's going to have
to go back in. If we do that, we're going
(14:47):
to be exactly where we are right now.
Speaker 18 (14:49):
Again.
Speaker 16 (14:50):
I would go for the trick, and that's what I
think mother would have wanted any respected and the quality,
the quality of life, you know, you meant to be
seen because we know that you know that Adle's eismeers
is progressing. You know, we don't know if she's going
to be better tomorrow. She was not improving much. You know,
we don't know exactly she's going to survive. Are you
betting on how many days, how many months, how many weeks?
Speaker 19 (15:12):
You know, we don't know.
Speaker 5 (15:15):
You never really want to impose your own personal morals
or beliefs on a family, But I mean, the truth is,
and I thought that probably the most humane thing to
do would be to take the tea about and to
see if she could breathe, and if she couldn't, then
to just make sure she was comfortable. But that's my
own personal bias.
Speaker 1 (15:36):
The family voted two to one that if the extirbation failed,
they would do the tracheotomy.
Speaker 7 (15:43):
Okay, they fail, thanks fail, My good car occupable.
Speaker 13 (15:59):
More.
Speaker 17 (16:02):
She's breathing respiration eighteen s say, heart rate one oh
four ops, generation ninety six percent.
Speaker 20 (16:14):
Oh God, would like it to breathe.
Speaker 13 (16:18):
Okay.
Speaker 5 (16:19):
People surprise us all the time. Patients that we didn't
think could breathe do breathe, and people we didn't think
would get off life support do get off life support.
So every time it's scary because you're afraid that maybe
you're guiding someone to stop treatment when maybe that's premature.
So it's very very fine line.
Speaker 6 (16:53):
For every disease, there's always a tail end of the curve.
There's a group of people who five expectations. We don't
know what will happen for any individual. We can look
at probabilities and chances, but the way progress is made,
(17:14):
the way advances occur, requires going to the very edge
and pushing very hard. Many times in sunglens we fail,
but that is what often drives medicine forward and leads
to discovery. Here in the bone marrow transplant unit, a
(17:35):
team of oncologists treats people with blood cancer who a
generation ago would have died, but now a bone marrow
transplant gives them a chance of survival.
Speaker 19 (17:47):
We are an extraordinarily aggressive group of physicians. We couldn't
do what we do if we weren't very aggressive. We
can endure some level of suffering among our patients because
we belie leave that while we do make them suffer,
that there is a greater good at the end of it,
that they will come out the other side. And we've
seen it enough times that we hold it as a belief.
(18:11):
When you transfuse her today, let's get a post transfusion CBC.
Speaker 1 (18:15):
A bone marrow transplant is one of the most drastic
therapies in oncology, and it's expensive. The cost of a
transplant alone can be close to two hundred and fifty
thousand dollars.
Speaker 21 (18:28):
Stem cell transplantation is viewed as the final strategy that
has the potential to cured diseases that are otherwise incurable.
We're using super lethal doses of radiation. We're talking about
radiation that patients were exposed to nearly with the A
bomb and they get sick enough so that they can
die from infection or bleeding or other organ toxicities. The
(18:52):
mortality from transplant can be twenty five thirty percent from
the treatment. On the other hand, we're dealing with diseases
which will otherwise be fatal. So that's a struggle we
have all the time, you know, trying to weigh the
potential risk of death from the procedure and the risk
of death from the disease.
Speaker 22 (19:12):
Morning.
Speaker 1 (19:15):
When Albert ALBERTI fifty three was first diagnosed two years
ago with MDS, a type of leukemia, he was given
only months to live. Married with three young children, he
knew a bone marrow transplant was his only hope for
a cure.
Speaker 3 (19:35):
So Albert, how is this kin doing?
Speaker 7 (19:37):
How is that ring not good?
Speaker 20 (19:40):
Is he more eaty compared with last week?
Speaker 9 (19:43):
Yes, yeah, this kin is very very well.
Speaker 1 (19:46):
Albert had one transplant but it failed, and then he
had another. Both were covered by his insurance, but with
each one he's had terrible complications, including pneumonia and a stroke.
Speaker 22 (20:01):
When the first transplant didn't work, we went to the
second one and I still stay positive. But then when
I had the stroke that that sort of broke me.
And I always felt myself as a pretty tough guy,
but my emotions lately have been so it's it's it's
(20:24):
it's it wears at you these diseases. I had my
appendix out once and it was a week, it was
back to normal. Broke my arm six weeks and back
to normal. It's uh eleven months and they.
Speaker 7 (20:38):
Have no answers.
Speaker 20 (20:40):
We are just still debating about what to give you.
We don't want to harm you, we want to help
you with right. We are still looking for the donors
for you.
Speaker 22 (20:48):
If I have anyother UH stem cell transplant, I would
have to get stronger, heavier, right because the chemo treatment
would they stronger.
Speaker 16 (20:57):
You are the the that it would be for you.
Speaker 22 (20:59):
So oh okay, see, hopefully we find another donor and
UH I could go through another UH transplant and UH
this form will be successful and I could get back
to a normal life.
Speaker 7 (21:16):
That's UH, that's my goal.
Speaker 4 (21:19):
It's gotta take every step possible.
Speaker 7 (21:22):
You know, it's UH, it's tough, but you know, w.
Speaker 4 (21:26):
Why give up? What's that gonna do?
Speaker 1 (21:31):
Exactly?
Speaker 20 (21:35):
Some patients want to know what are my chances of surviving.
But even when the numbers are low, they still go
for it because the option of living is worth it.
It's very difficult for me to say to a patient,
I don't think you have any treatment opportunity. I I
(21:57):
never said that to any patient. Never I think I
I can humanly say that to a patient. He always say,
you know, what, are we gonna do these or the other,
even if it's in a pertiative way, but they offer.
Speaker 19 (22:15):
I always say that it is something to do.
Speaker 14 (22:22):
Yeah, crazy, Oh no, you go every Monday, let's get
Lento's pizza.
Speaker 1 (22:32):
For nearly nine months, John Maloney has been in the
hospital with one complication after another.
Speaker 18 (22:40):
Sandwich.
Speaker 1 (22:41):
But now there is a chance to go home.
Speaker 5 (22:43):
You get the fresh hand.
Speaker 23 (22:45):
Okay, this has been crazy. He has been hospitalized since January.
It's October now, I'm watching the seasons.
Speaker 21 (22:54):
Go.
Speaker 23 (22:54):
I opened my pool. I closed my pool. He never
even saw it. He hasn't stopped fighting in two years now,
it's been two years, and he's just keep going, keep going.
I'm gonna do this and we're gonna have time, and
we're gonna do things, and I'm gonna get better. And
that's still his mantra, that's still what he's saying.
Speaker 1 (23:16):
John Maloney, a corrections officer, was fifty five when he
was first diagnosed with multiple myeloma. He's tried every available treatment,
including two bone marrow transplants, but his myeloma keeps coming back.
Speaker 18 (23:33):
You're gonna lift up aside as he can, and it's
hard to watch.
Speaker 19 (23:38):
You know.
Speaker 23 (23:39):
John was six foot three, two hundred and fifty pounds.
He's like one hundred and fifty pounds now. You know,
it's very hard to see him like this. Sometimes when
I come into the hospital, I'm almost gasping, you know,
like wow. And I told John, I said, no more
can to treatment, no more chemo. I can't see you
(23:59):
be any more debilitated. But then you talk and you say, okay,
let's try something mild because doing nothing. It's scary to
do nothing, because what if I don't want him to die?
You know, So you feel like you want to do something,
I'm ready.
Speaker 7 (24:17):
Can you believe it?
Speaker 19 (24:20):
Well, apparently you did the stairs.
Speaker 1 (24:24):
Although doctors believe they can no longer control his mile loma,
John doesn't want to stop treatment, so they've agreed to
send him home on a mild chemotherapy.
Speaker 19 (24:33):
I still think you're not strong enough to get big
time chimo in the hospital, and you, let's face it,
you've been here for so long it's time to leave
for a little while.
Speaker 12 (24:43):
But I think we've accomplished the goal that we've tried
to accomplish, to get you.
Speaker 19 (24:47):
On some ooral chemotherapy, to get you strong enough to
go home, to keep things stable.
Speaker 2 (24:52):
And I think you know the goal was to go home.
Speaker 19 (24:55):
So yeah, okay, sounds good.
Speaker 18 (25:00):
Okay, have a wonderful weekend at.
Speaker 9 (25:04):
Monday.
Speaker 13 (25:04):
Okay, back home for a while.
Speaker 18 (25:11):
No, no, it's back home for good.
Speaker 19 (25:17):
Some physicians can keep giving treatment and some find it unacceptable,
and that is I think where the art and science
of medicine mix. The lines are blurred, and they're also
different for different physicians. Sometimes there are patients for whom
(25:41):
I think about them and I wish we'd stopped earlier
because I think they suffered unnecessarily, But in the moment
and the heat of that moment, maybe I didn't realize
it at that time. Sometimes there are forces outside of
the patient and myself that are the patient's family, other physicians, uh,
and so sorting that out can be very, very tricky
(26:04):
in those moments, and each situation is slightly different.
Speaker 4 (26:09):
The significant other came and said this morning that he
told you he wanted he was tired and he wanted
to if anything to be a DNR.
Speaker 9 (26:16):
He still wanted everything done.
Speaker 1 (26:17):
But a patient's girlfriend has just told doctors that he
wants to sign and do not Resuscitate.
Speaker 23 (26:22):
Order a d n R and needs to be changed
every three days.
Speaker 1 (26:27):
Norman Smelley has been in the hospital for two months
suffering from life threatening complications of his transplant.
Speaker 4 (26:35):
Tell me what's happening. You're having pain in your belly.
Speaker 9 (26:47):
You're scared of you?
Speaker 4 (26:48):
What are you scared of?
Speaker 18 (26:51):
I don't want to do it if you're.
Speaker 4 (26:53):
Scared, nor we don't have to do it. There's nothing
wrong with the catheter.
Speaker 1 (26:57):
It's although he's always told doctor Rosman that he wants
everything done to stay alive that important, he's now starting
to refuse treatments and she needs to know if he's
changed his mind.
Speaker 4 (27:09):
Let me ask you something.
Speaker 19 (27:10):
Rita said that you've been thinking a little bit about
if you ever need an event, what you would do
or what you would want us to do.
Speaker 4 (27:17):
And have you thought about that more? And do you
wanna tell me something about that.
Speaker 22 (27:26):
Hm.
Speaker 2 (27:33):
If something should happen and you would have trouble breathing,
do you want to be put on a respirator to
help you breathe?
Speaker 6 (27:44):
You do?
Speaker 4 (27:45):
Is that a yes?
Speaker 7 (27:46):
Okay?
Speaker 13 (27:47):
All right?
Speaker 4 (27:48):
That's what you always did express to me, but I
wanna make sure that hasn't changed. Listen.
Speaker 19 (27:55):
I wanna say something that you should think about today,
but you don't have to say anything about it now.
Speaker 4 (27:59):
I just wanna say it to you.
Speaker 5 (28:00):
Okay.
Speaker 4 (28:02):
If you're tired and you don't want us to do
this anymore, that's okay with me, but you gotta let
me know. I don't want to put you through procedures
that you don't wanna go through, but I don't wanna
not do the things that are right in terms of
trying to help you get better. Okay, now, this is
(28:25):
what I told him.
Speaker 9 (28:26):
I told him if he doesn't wanna.
Speaker 4 (28:29):
Do it anymore.
Speaker 13 (28:31):
But m.
Speaker 1 (28:34):
Norman's girlfriend, GiMA, has been with him twenty four hours
a day for the past two months.
Speaker 19 (28:39):
I'm trying to read from his face, but she is
not his.
Speaker 1 (28:42):
Health care proxy.
Speaker 4 (28:43):
I want to respect what he wants and he wants
Society Vienna he didn't say that just now we asked him.
Speaker 19 (28:51):
So I believe you that he said it to you.
But I think then is what I think is hap.
I think it's kind of going. I think he's everything
is yes, no, no, I ask who.
Speaker 4 (29:01):
Is the healthcare proxy?
Speaker 19 (29:02):
Phyllis, if you can stop breathing, do you want us
to put.
Speaker 18 (29:06):
You on an event?
Speaker 13 (29:07):
Yes?
Speaker 9 (29:09):
Oh he did it, But I think one minute this way,
I know.
Speaker 7 (29:15):
Him what he won.
Speaker 16 (29:20):
I'm not the official health care proxy, but let me
tell you, I don't want to see him suffering.
Speaker 7 (29:28):
You know, people poking him. That's it.
Speaker 24 (29:32):
Nowadays.
Speaker 7 (29:33):
He doesn't want to be bothered. You know, let me go,
let me go.
Speaker 19 (29:37):
It's not one time he's so you know he's diet.
Speaker 13 (29:42):
I think.
Speaker 1 (29:49):
It's the next morning and overnight Norman got worse. His
liver began to fail.
Speaker 19 (29:56):
How are you so?
Speaker 1 (29:57):
Doctors called in His sister, Phyllis is his health care proxy.
Speaker 25 (30:02):
A month ago he discussed healthcare proxy and he said
to me, I want everything. That's it, he said, I
want everything. He's a young man and you want everything.
I said, okay, Norman, those your wishes, I will do it.
Speaker 7 (30:20):
He knows his the illness.
Speaker 20 (30:21):
He knows.
Speaker 7 (30:23):
So if he says he wants everything to stay alive,
That's what I'm going to do.
Speaker 1 (30:30):
Although Jimas still believes he wants to stop treatment, doctor
Rossmann and Norman's sister decided to send him to the
intensive care unit to see if he could be stabilized.
Speaker 19 (30:42):
Sometimes it's not completely clear what's reversible isn't Will they
rally from this moment, from this infection. You can count
all the things that are moving against them, but that
doesn't necessarily mean that the prognosis is dismal. Sometimes those
things can still and it only takes a little bit
time to put them over the edge and back into
(31:02):
the living. But in those wee hours of the night,
when you think about the patients and am I doing
the right thing and so on, I think there are
a lot of question marks that come up, and sometimes
you fight to the bitter end.
Speaker 2 (31:16):
And you still lose.
Speaker 3 (31:23):
The degree of uncertainty you have to deal with now
is the doctor. It's hard to describe how much greater
it is than it ever was before, because there's so
much innovation and because of how rapidly it evolves, there's
almost always something else that we can do to put
off the inevitable, another course of chemotherapy, a little bit
(31:46):
more radiation. What if we got one more cat scan,
What if we explore this person's belly one more time.
There's always been nagging concern in the back of your mind.
Have I really left no stone unturned?
Speaker 6 (32:00):
In the context of bohemera transplant, It's even more uncertain
because this is a field of medicine that has advanced
so much, where new treatments and new interventions can change
outcome so that now many many lives are saved. But
(32:25):
you cannot escape the reality that too often that success
is not the case, and you risk amplifying suffering.
Speaker 18 (32:38):
Hi, Hey, what happens around seven o' clark last night?
I was feeling very unstable, My balance was off, and
I put my children to bed.
Speaker 1 (32:56):
Early three weeks after his clinic visit, Alberti was back
in the hospital.
Speaker 18 (33:02):
And I just fell off the toilet bowl slow motion.
I couldn't stop myself.
Speaker 24 (33:07):
Are you having any headache today?
Speaker 8 (33:10):
No?
Speaker 13 (33:10):
Any change in your vision?
Speaker 9 (33:13):
No, we try and stand up.
Speaker 8 (33:17):
Mister Alberti was in a really horrible position because not
only had the first transplant fail, but his underlying disease
had recurred. Don't worry, I'm holding onto it.
Speaker 24 (33:28):
Small steps, and he was so debilitated that the reality
of him being strong enough to withstand the rigors of
another transplant was minuscule.
Speaker 8 (33:41):
Al Right, so this is what we'll do. I'll go
look at the cat scan and then we'll speak with
a neurologist. One thing that makes our patients different from
other patient populations is by the time that we transplant
them first time second time, they've been through so much
that at that point, stopping therapy is not even within
(34:01):
the mindset of the majority of our patients. Stopping treatment
almost means that we acknowledge that death is near.
Speaker 18 (34:27):
Half the.
Speaker 13 (34:47):
Things to see how to say again?
Speaker 6 (34:49):
Hi.
Speaker 1 (34:51):
John Maloney is also back in the hospital home for
only a week. He was brought back in on an
emergency admission.
Speaker 8 (34:58):
Definitely are a lot better than yesterday.
Speaker 13 (35:02):
I didn't even know what day it was to any where.
I wore about you.
Speaker 23 (35:06):
On Monday.
Speaker 3 (35:07):
I was in good shape.
Speaker 7 (35:09):
We started out the door and I'm telling you so
somebody shot me.
Speaker 9 (35:15):
That was Friday.
Speaker 23 (35:17):
I kinda you've done wish we didn't do that second
stem cell transplant, But he doesn't. He said, I had
to take the chance I had to, you know, so
we have different feelings on that to bring down your
calcim you know, I think everything went downhill from that,
the chemo that he had prior to the stem cell transplant.
(35:37):
Even though he lived, he survived, he hasn't walked since.
Speaker 8 (35:43):
I do think that the disease is getting worse. So
we need to think about where to go from here,
you know, knowing that you've had many, many therapies for
your mieloma, including two transplants, and now when we make
a decision, we need to think very carefully because many
(36:05):
therapies that we give you may affect your quality of
life or may even shorten your life. So things to
think about would be, you know, to go home.
Speaker 4 (36:22):
With a lot of support.
Speaker 8 (36:27):
With home hospice would be a possibility or not. Or
if John wants to try further therapy, then we can
try to tweak this regimen m that you've received, but
I'm not sure it would really help.
Speaker 23 (36:43):
But if you're saying to do therapy and it's not
gonna help, so why not just do nothing?
Speaker 19 (36:49):
Would it still be to stay the same?
Speaker 8 (36:52):
I think doing nothing is a very important consideration. It
really depends on what you want.
Speaker 3 (37:03):
Antha, we'll talk.
Speaker 8 (37:09):
Alright, John, I'm gonna be back to check on you
a little bit later, Okay, alright, alright, alright, and Debbie
I'll be back with you.
Speaker 10 (37:19):
Okay, okay, alright.
Speaker 23 (37:28):
We can't keep bombing your body going.
Speaker 10 (37:30):
We can't.
Speaker 19 (37:31):
That's the bottom line.
Speaker 7 (37:32):
Okay, bomb me.
Speaker 18 (37:36):
Rugby like that, then, diad.
Speaker 2 (38:01):
Nobody wants to die. Nobody wants to die, and at
the same time, nobody wants to die badly.
Speaker 6 (38:12):
And that is my job. My job is to.
Speaker 2 (38:21):
Try to prevent people from dying if there's a possible
way to do it that will preserve a quality of
life that's acceptable to them. But if they can't, go
on to try to make the death.
Speaker 7 (38:38):
A good death.
Speaker 9 (38:41):
Were you here during the night, Okay, good morning, Norman.
Speaker 2 (38:48):
We're going to just listen to your chest and do
a few other things on the exam and we'll try
very hard not to hurt in any way.
Speaker 7 (38:57):
Can you just open your eyes up a little bit
for me and look all the way up.
Speaker 1 (39:01):
It's been two days since Norman Smelle was brought to
the ICU from the bone marrow transplant unit, and he
has continued to get worse.
Speaker 2 (39:10):
Don't push too hard because uh, he's got pain in
his thigh.
Speaker 1 (39:14):
So doctor Nelson wants to meet with Norman's family and
doctor Rossman to discuss his prognosis.
Speaker 19 (39:21):
He has a lot of medical problems, as you know,
and doesn't have terrific counts. He got Grade four graphers
as host disease of the bowel, which I have yet
to see somebody recover from and live through. He also
has CMVs, so he has a lot a lot of problems.
Speaker 22 (39:40):
You know.
Speaker 19 (39:40):
I had many conversations with Norman myself about his prognosis
and what would happen and what he wanted right. But
you can have a lot of conversations about these things,
but I think when the moments come, I don't think
that anybody can be completely prepared for what it's really
(40:04):
all about.
Speaker 13 (40:05):
Hi, I am doctor Savandron.
Speaker 25 (40:07):
So you know he had the biopsy the other night,
but looks like that is the GVHD.
Speaker 7 (40:13):
But I have a question, sure, and I would like
a straight answer. Is my brother dying? I think I
need I need a straight answer.
Speaker 2 (40:26):
What do you think, phillis?
Speaker 4 (40:28):
What do you think?
Speaker 7 (40:29):
Wait?
Speaker 9 (40:30):
I mean, I think we can say what we think,
but what is your gut feeling about it.
Speaker 25 (40:35):
My gut feeling is that this there's not going to
be a positive outcome here, Okay, there's I don't see
Norman walking out of this hospital.
Speaker 2 (40:48):
I think you're right, Phyllis. I think he's dying and
we have trouble picturing him leaving the hospital. Also, I
think he has too many problems based on what dot
Com Drassman is telling me and what we've observed in
the ICU, and they're all playing against each other in
a very bad way.
Speaker 16 (41:08):
Do you think jam he's been telling me he doesn't
want anything.
Speaker 9 (41:15):
That's why I remember when I asked him, if you.
Speaker 7 (41:17):
Yeah, he doesn't want anything for since he was upset.
Speaker 25 (41:23):
Unfortunately for me, then when i'd come he never says
any of those things to me.
Speaker 7 (41:30):
I just don't want him to pain.
Speaker 9 (41:33):
He's not gonna be in pain. He is not gonna
be in pain.
Speaker 2 (41:41):
The uncertainty is the most disturbing part of the decision making,
and the availability of the therapies has created this fiction
that we can orchestrate this one way or the other,
when the truth of it is that for all of
(42:02):
this magnificent technology, the underlying illness and the medical condition
of the patient are far and away the most important
factors in determining the outcome. But it feels like when
you have the technology available that your decisions to use
(42:23):
or not use it are like the decisions to allow
life or not allow life. And that's not a position
that any of us wants.
Speaker 13 (42:36):
To be in.
Speaker 1 (42:39):
After meeting with doctors in the ICU, Norman's family decided
to sign a DNR and focus exclusively on comfort care.
Speaker 19 (42:50):
When there's no chance that things are going to get better,
then I think the only hope you can offer is
for that good death, whatever that is, and for allowing
some comfort and some acceptance of the situation.
Speaker 3 (43:08):
But you know, I don't know.
Speaker 19 (43:13):
I think that the concept of a good death probably
matters more to those who are around the one who
is dying, because they hold that memory in their mind.
But I don't know that the person who's going through it,
who knows.
Speaker 23 (43:40):
He won't say that he's going to die from this,
you know, as crazy as that sounds, he still won't
say it. I think he thinks if he says that
he's giving in, he's giving into.
Speaker 9 (43:55):
The cancer.
Speaker 23 (43:56):
He's giving in and he's saying the possibility I might
die and John won't say that.
Speaker 7 (44:05):
I don't know.
Speaker 23 (44:06):
Maybe I'm terrified now. I think this week has changed
me because I think I really believe that he was
going to get stronger, and I really didn't think this
was going to happen. So I think now I'm scared,
anger out.
Speaker 14 (44:27):
How are you?
Speaker 4 (44:29):
You're still bleeding a lot? Oh, I don't know.
Speaker 13 (44:32):
I was.
Speaker 1 (44:34):
Oh sure, it's been one week since John stopped chemotherapy
and now he's bleeding internally. Earlier in the day, doctors
needed to know if he wanted life sustaining measures to
keep him alive, or if he wanted to sign a
do not resuscitate order.
Speaker 4 (44:54):
So you spoke with doctor i Sawa today.
Speaker 7 (44:56):
Yeah what did he say?
Speaker 1 (44:59):
Oh, we order of course your feet and then we'll
go on make a choice and we'll see what happens
and up for it too.
Speaker 13 (45:11):
Men.
Speaker 7 (45:13):
So, uh what John?
Speaker 23 (45:15):
You're not understanding, honey, not understanding.
Speaker 9 (45:17):
You're not understanding what he's saying to you.
Speaker 23 (45:20):
He's saying, if you ever go into distress again, you
have a choice to say, yes, do everything you can.
I wanna live on life support or no, I've had enough.
Don say Soula is telling you that it's not gonna help,
it's not gonna make you better at that point.
Speaker 18 (45:38):
If he thought it would, he would do it.
Speaker 4 (45:39):
But at that point, it's just sustaining your life.
Speaker 18 (45:41):
And that's the choice you have to make that.
Speaker 9 (45:45):
Right, right, okay. And the other thing is to get
the blood under control.
Speaker 18 (45:50):
That's what doctor Osma was just talking to.
Speaker 7 (45:51):
You, Okay.
Speaker 13 (45:53):
But I don't know.
Speaker 19 (45:54):
That's why I raise it cause I'm not sure that
you're gonna be able to get back home again.
Speaker 12 (45:59):
I think we could do everything to get you back home,
but then what might happen is the bleeding.
Speaker 19 (46:10):
Might start again because we're not really doing anything to
definitively fix that bleeding because we really just can't anymore.
Speaker 4 (46:16):
Right, we'll talk about things. You need a lot to
take in today.
Speaker 18 (46:21):
There's a lot of stuff that have been said I.
Speaker 4 (46:25):
Not prepared to hear.
Speaker 7 (46:26):
So that's okay, that's okay.
Speaker 13 (46:32):
I ain't going anywhere.
Speaker 19 (46:49):
Do you have like flexibility to take a little bit
of time?
Speaker 4 (46:53):
I don't know I have to do. You need me
to call your boss, like, like how much time a couple.
Speaker 7 (46:59):
Of weeks.
Speaker 9 (47:03):
And you're saying that's when it's at the end.
Speaker 19 (47:06):
Yeah, So you have your time with him and he
has time with you, and you move Camilo.
Speaker 7 (47:25):
World Ray see.
Speaker 13 (47:27):
You said.
Speaker 1 (47:42):
John never did sign a dn R, but he did
agree to go to hospice. One day later, he would die.
Speaker 22 (48:04):
Dormant.
Speaker 1 (48:06):
Two days after his family decided to stop aggressive treatment,
Norman Smelley would die from complications of his transplant.
Speaker 19 (48:16):
I'm not sure that the transplant prolonged his life, but
I'm not sure that he would have lived much longer
without it. He died a much more difficult death after
the transplant than he would have died had he not
chosen that. And I'm not sure that we added to
his quality of.
Speaker 9 (48:33):
Life at all.
Speaker 19 (48:36):
So of course there's some guilt. We did that to him,
now what? And so that's that's a that's yeah, I
didn't want that for him.
Speaker 8 (48:49):
What's my name?
Speaker 10 (48:51):
What's my name?
Speaker 22 (48:54):
My name?
Speaker 10 (48:55):
De nov A.
Speaker 1 (49:00):
Few days after being readmitted to the hospital, Albert Alberti
had a massive stroke. One week later, he would die.
Speaker 6 (49:12):
Patience with severe illness will go with you to the edge,
even for that small chance that they'll beat the odds
and they'll be the one who will emerge. Often they're not,
but sometimes they are, and we should be very careful
(49:36):
that we don't label as futile or meaningless some treatment
or some attempt to push the envelope, because otherwise we
will stand in place.
Speaker 1 (49:52):
Only one day after Martha Laurville surprised everyone by being
able to breathe on her own, she had to have
a tracheotomy. She has now been living on a ventilator
for over a year.
Speaker 2 (50:07):
At any given time, one hundred thousand people are chronically
critically ill on ventilators all over the country. It's estimated
that the cost of caring for these people is in
the twenty to twenty five billion dollar range annually. And
(50:27):
these are the broken survivors of intensive care. And the
better intensive care gets, the more of these broken survivors
we have.
Speaker 3 (50:38):
What we've done in medicine, by offering more and more
and being more and more aggressive, is to create the
sort of culture of expectation that when you come, you're
coming to get something more. It's really in this country,
maybe alone in the world, that we allow our doctors
to continue to practice in that way, we allow our
(51:00):
patients to continue to have that expectation. There's no question
that the technology has saved in a meaningful way, hundreds
of thousands, if not millions.
Speaker 7 (51:12):
Of lives.
Speaker 3 (51:14):
But with those advances and all of that progress, comes
an ultimate trade off, and the toll is sometimes devastating
on the patient themselves, on their family, their loved ones,
and on the healthcare system.
Speaker 26 (51:38):
Frontline is made possible by contributions to your PBS station
from viewers like you, Thank you, and by the Corporation
for Public Broadcasting. Major funding is provided by the John D.
Speaker 7 (51:51):
And Catherine T.
Speaker 26 (51:52):
MacArthur Foundation, committed to building a more just, verdant, and
peaceful world, and by Riva and David Logan, committed to
investigative journalism as the guardian of the public interest. Additional
funding is provided by the Park Foundation, committed to raising
public awareness, and by the Frontline Journalism Fund with a
(52:13):
grant from Scott Nathan and Laura de Bumas.
Speaker 12 (52:31):
For more on this and other Frontline programs, visit PBS
dot org.
Speaker 26 (52:47):
Frontline's Facing Death is available on DVD.
Speaker 19 (52:51):
To order, visit shop PBS dot org or call one
eight hundred play PBS
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