2016 Public Health Grand Rounds 04/01

PUBLIC HEALTH GRAND ROUNDS Linking Research to Community Health Improvement Jointly sponsored by the Department of Public Health Sciences & URMC Center for Community Health

- [Speaker] Where he is also Professor of Medicine,
Psychiatry, Medical Humanities in Nursing,
he was the founding director of
the URMC Palliative Care Division
and a past President of The American Academy
of Hospice and Palliative Medicine.
Dr. Quill has published and lectured widely
about the various aspects of
the doctor-patient relationship,
with special focus on end-of-life decision making,
including delivering bad news, non-abandonment,
discussing palliative care earlier,
and exploring last-resort options.
He is the author of several books on end-of-life care
and over 150 articles published in major medical journals.
Dr. Quill was the lead physician plaintiff
in the New York State legal case
challenging the law prohibiting physician-assisted death
that was heard in 1997 by the U.S. Supreme Court.
Dr. Quill received his undergraduate degree
from Amherst College in 1971,
and his M.D. from the University of Rochester in 1976.
He completed his Internal Medicine residency in 1979
and a Fellowship in Medicine/Psychiatry Liaison in 1981,
both from the University of Rochester
School of Medicine and Dentistry.
Dr. Quill is a Fellow
in the American Academy of Hospice and Palliative Medicine,
a Fellow in the American College of Physicians,
and a ABMS-certified Palliative Care Consultant.
So please join me and welcome Dr. Quill.
(audience applauding)
- Thank you, now let me see if I can pull this up.
There we go, okay, so thanks.
Glad to be here today to talk to you.
This is gonna be a bit of an overview talk
about palliative care and hospice.
One of the things you learn the more you do this
is that people don't understand the basics of
what this is about a lot of the time.
So I'm gonna talk, to some degree, basics with you.
I'll present a case at the end.
If you have questions as we go along,
please just yell them out,
and we'll try to address them then.
There will also be time for questions at the end,
if you wanna wait on them, but there's no need to wait.
We're all friends here.
I love to start with this photograph
because it shows people
who are alive and functioning into their 90s
and when we use medicine's powers to keep people
alive and functioning into their 90s,
we are doing a wonderful thing.
My oldest patients, some of you know,
became my patient in primary care at age 85.
At 85 she wanted to be DNR
because she didn't wanna go through too much,
but she was willing to allow treatment
of some basic things at that age.
Her first hospitalization for pneumonia was in her 90s,
and she had pneumonia, it was a treatable thing.
So, she allowed me to bring her into the hospital
and she got better, because antibiotics are very powerful.
She said, "Thank you very much,
"I'm really glad I got better,
"but this hospital stuff is a little bit too much.
"So, no more hospitalization."
So, our next adventure in medicine
was a pneumonia at home at 102,
and oral antibiotics actually worked.
She said, "Okay, well, that's okay, thank you very much,
"but things are getting a little hard now,
"so I'm not sure that I want even any more of that."
At 105, she
could no longer walk
and really couldn't stay at home any more,
so she got admitted to one of our nursing homes
and was comfort care at that point.
About nine months later, she developed a pneumonia
which we did not treat, and she died.
So it took a non-treatment decision
at age 107 to allow her to die.
I tell this story because medicine's powers to keep
people alive longer are really quite extraordinary.
We see a lot of battles going on over across the street,
but the hope was, as people are living longer,
that they would live healthy a lot longer,
they would perhaps live sick a little shorter,
and they would die peacefully.
It's called a compression of morbidity theory.
Turns out this is more of a theory than reality.
What really tends to happen is
people live healthy a little bit longer,
they're living sick a lot longer,
and at the end of sick, they and their families
are often faced with these
daunting decisions that we face every day.
Again, about half the time, the patient is
no longer making decisions for him or herself.
So, how many of you have
an advance directive for yourselves?
Okay, this is, I would say, an average group,
you know, about 40% of you.
Nationally, that's about where things are naturally.
Now the 60% of you who don't have an advance directive,
how do you think decisions are gonna be made
if you can't make decisions for yourselves?
You're family's gonna be asked,
"What would he or she want?"
They're gonna say, "Well, she never said such,
"they never said anything,
"so why don't we just do everything,"
which is sort of our default in our culture right now,
which is one of the reasons why we see
so much overtreatment at the end of life.
And, again, if you take a look at advance care planning,
you think it's bad in here,
which is a largely white audience,
think of a poor, African-American or Hispanic audience.
Think about the trust that it takes
to set limits on treatment,
the trust in the system that most people don't have.
So if you were to predict
where is the most overtreatment going to occur,
it's gonna be in the people who haven't had access to care,
when they finally get access to care,
because then you're not gonna really believe,
"Well, you mean, now that I have access,
"you want me to go to hospice, are you kidding me?"
It doesn't make any sense.
So, again, that is another issue that we have.
Sometimes, in an uncertain situation,
you might say, " Well, why not try a ventilator?
"Maybe I'll get better.
"Maybe there's a 50% chance
"that I'll get off the ventilator."
But, what's the down side of a 50% chance
you're gonna get off the ventilator?
(audience members speak off microphone)
50% chance that you won't.
So, this man probably went in
maybe thinking he was going to get off the ventilator,
but then didn't, and now he's two months
or three months down the road,
faced with a very daunting decision about,
"Do I go off the ventilator and die,"
make a very active decision toward death.
And that's a very hard decision to make for most of us.
Of course, those who are DNR, DNI,
let's say they might have advanced lung cancer or emphysema,
they're likely to have some daunting symptoms
at the very end of their lives.
So, if we are not prepared for dealing with
shortness of breath at the very end of life,
and this man comes into our Emergency Department
extremely short of breath, he's gonna say
if we're not ready to provide some opioids
and maybe sedation to help him make it through that,
he's gonna say, "Give me the ventilator every time,"
because the ventilator, as bad as that is,
is better than untreated shortness of breath.
It really is, so again,
if we're gonna take care of these patients,
and try to protect them from going on these machines
at the very end of life,
we better have a plan that's pretty solid
to deal with their symptoms at the very end of life.
And, of course, in the United States,
you don't have a right to health care at this point,
we're improving in that regard,
but you will get CPR at the end of your life.
You do have a right to that, in fact,
it's a requirement by law unless
you specifically say you don't want it.
So again, now, CPR doesn't work all that well
in people who are seriously, chronically ill,
but still, that's what you're gonna get at the very end,
and it's not a very pretty picture.
It's not the way you'd really choose to die
if you were making a choice in this matter, right?
Not the way you'd want to spend your last moments.
But, those of you, by the way, in the 60% in this audience
that's at a Palliative Care lecture,
who don't have an advance care plan,
ought to think about that,
because that's what you're lining up for.
So, background data, still most deaths are occurring
in hospitals and nursing homes,
even though when you ask people
where they would want to die,
they by and large would want to die at home
if it's possible.
Families are often impoverished in these long,
end-of-life adventures that go on a very long time.
Health care insurance pays for a fraction of this.
It's a good fraction,
but there's a large fraction that's not paid for.
Nationally, probably 30, 40% now
have completed advance directives.
Inadequate pain management, we're now very conflicted
about too much pain management versus too little,
and so we are, particularly in palliative care,
become much more aware of that down side of opioids
in non-terminally ill patients.
But, still, when you even look at terminally ill patients,
there's still a lot of undertreatment
of potentially treatable pain.
When we do prognosticate,
we tend to err on the optimistic side to preserve hope,
and there are some pluses and minuses to that.
The main minus is that people don't really know
where they really are if we aren't honest with them.
When we do refer to hospice, it tends to be very late.
Medical rituals replacing religious rituals,
so you don't see a lot of your own clergy in the hospital.
Even now, you might see a hospital chaplain,
but clergy are also a little bit wary.
And you take a look at most churches and synagogues,
there's not lot of real specific conversation about
"How do we wanna die as a congregation?
"How do we individuals,
"how are we gonna think better about that?"
If I speak with church groups,
I really try to throw that at them
and really challenge them to do that.
Those of you might want to think about
if you are religious folks,
and member of a church, or temple, or whatever,
could we get a conversation going with our group
about how to do this?
Because that is really a place
where it should be happening, as well as in medicine.
And then, economic consent,
we have healthcare reform going on now.
There is a risk of undertreatment,
if we get an incentive to
not do too much at the end of life,
but we ain't there, and we are so not there.
All the incentives still are in the direction
of more aggressive treatment,
and all the money flows with more treatment.
So how does a healer approach serious illness?
It's kind of an interesting philosophical question
or it could be an interesting philosophical question.
If we only think of healing in terms of
curing disease or prolonging life,
then we are gonna fail as healers
if we care for people long enough.
Now, there's a good way to get around that.
And that is, as people get sicker,
send them off to somebody else.
And then we can preserve our sense of healers in that way.
But, if we viewed death as a medical failure,
then we're gonna fail every time,
if we care for people long enough,
because that's just part of the life cycle.
So, we clearly need a broader model of healing
that talks about maintaining wholeness,
maintaining personal integrity, finding meaning, connection,
and again, hospice has taught us a tremendous amount
about this process, this opportunity for growth and closure.
Now, again, it's an acquired taste.
When I have hospice conversations with people
it's a bad day for them.
I think I have a slide about this later on.
Even though many people are very grateful
two weeks later that they went into hospice,
and think, "God, I really wish you'd
"raised it about a month earlier than you did."
And this commitment, who's gonna be
the clinicians caring for me
for the last phase of my life?
A lot of folks don't really know
who that person's going to be, right?
Is it going to be your oncologist,
who's been working with you?
Well, if you stop getting chemo,
is it still gonna be that person?
Is it gonna be your heart failure doctor?
Is it gonna be the palliative care doctor?
Are you going back to your primary care doctor?
So we've fragmented things so much,
it's not that clear who should be that person.
So again, just some images from hospice.
Anybody recognize this lady?
You can make a guess.
wrote "On Death and Dying" back in the 70s,
really cutting-edge writing back in that time,
and maybe her stages are not really stages,
maybe it's more of a gemisch
of feelings and conflicting views,
but she really opened the door to that there is
an inner life that people go through at the end of life.
It's there for the taking.
It's there for the asking,
if we can have the courage to have a conversation.
Now, not everybody wants to have this conversation,
but a lot of people would be willing
if we are willing to have it with them.
I love this slide because I don't imagine this guy
doing a lot of deep death talk.
But, he might be somebody who would give away
his tool collection to his grandson.
And they would have conversations about what to do
with the tools, and how you do it,
and it would be unbelievably cherished,
remembered conversations that might occur.
Again, radically different from spending
your last days in the hospital in an ICU bed, right,
in terms of memories and how you think about these things.
Some of it's very hard, hospice care.
You think it's all gonna be easy, it's not.
You better have somebody who knows
what they're doing in terms of managing symptoms,
because sometimes the symptoms are pretty tough.
But when it works well
and people are able to die peacefully, intact,
it can be a beautiful thing, it really can.
I'm a bit of hospice romantic,
I don't overly romanticize it, sometimes it's very hard,
but again, these peaceful deaths with family around
can be very memorable and important,
and part of a different kind of legacy
than the battle in the hospital.
The battle in the hospital can also be very meaningful.
I don't undermine that, or discount it.
It's just a very different experience.
So, what is palliative care?
Palliative care, this is a definition,
it's not necessarily the definition,
biological, psychological, social and spiritual care
for people whose diseases are probably not gonna be cured.
So you don't see a lot of death in that definition, right?
So do you have to be dying to get palliative care?
The answer should be a resounding no.
The goal of palliative care is to produce
the best possible quality of life
for the patient and the family.
So the focus is on patient and family
and it's for really sick people,
and it's to try to address their suffering
and help them with decision making.
As distinguished from hospice,
which is a Medicare-sponsored program,
although other private insurances cover hospice,
dedicated to provide palliative care
for terminally ill patients.
So, this is a subgroup of people who are terminally ill,
who accept that they are terminally ill,
who accept that the main job is palliation at this point.
So this is a much smaller bubble
inside a much bigger bubble.
What about the Medicare hospice benefit?
It is probably the best home care program
that we have in this country.
It pays for all medications and medical services.
You get a team of experienced caregivers.
It supplements care at home, or at a nursing home,
and there is the option of respite care
or emergency inpatient care,
if a family gets really tired, somebody could go
to an inpatient unit for a short period of time.
So, it's paid for in a unique way,
it's a capitated, per diem reimbursment.
So hospices get about 160 bucks per day to do everything.
All the medicines, all the nursing care,
any home health aids, beds, whatever you need,
is paid for, 160 bucks a day,
and the patient's not gonna get billed a drop more.
You have to have a prognosis of six moths or less.
How likely does it have to be that you're gonna die
in the next six months to go to hospice?
Is it 90%, 50%, or 20%?
'Cause it's gonna make a radical difference
on how many people for whom it's gonna be eligible.
(audience members speaking off microphone)
51% more likely than not.
So it's not a requirement that you die in six months,
(audience laughing)
but in fact, if it's 51%, theoretically
the normal curve of prognosis could go around six months.
So you could have people on for one, two years,
if they wanted a hospice philosophy.
Medicare is gonna start to look pretty carefully
if you're a long-stay patient,
because the expense starts to get pretty strong.
The payment's $150 a day,
whether you're a two-day patient or a two-year patient.
So, the profits and expenses
are radically different for those groups.
The hard nut to crack to get on to hospice is this
waiving your right to curative or disease-directed therapy.
Now again, a lot of the disease-directed therapies
might be palliative, consider treatment for heart failure
is also palliative care treatment,
because if you're less short of breath
and you have less fluid in your lungs,
you're gonna feel better, so that would count.
Palliative chemotherapy, maybe not.
(audience member speaking off microphone)
What is that?
- [Man] Antibiotics would no longer be included?
- Antibiotics would be one of those gray area ones.
So again, if you had a little pneumonia,
and we could make you feel better, yes,
if you had an overwhelming pneumonia, then maybe not.
That would be in the gray zone.
Generally, though,
people aren't gonna have antibiotics for pneumonia,
because you gotta die of something.
And if you don't die of pneumonia,
you're gonna die of something else down the road.
Because if you get a big pneumonia
and you're already on hospice,
you're gonna end up, if you survive that pneumonia,
probably in worse shape than you were in already.
The other thing, if you're gonna get hospice at home,
somebody's gotta provide the bulk of the care,
because hospice provides maximum
two to four hours a day of aid care.
So that means 20 to 22 hours a day
has to be somebody else, family, friends.
And again, if you're up and around
maybe you can get away with a lot less than that,
but as people get sicker, somebody's gonna have to do that,
and as fragmented as we are as families,
a lot of families just can't do that.
They have to provide the hands-on care,
all the fun stuff as well as the not fun stuff.
So, what about if you're only 40% likely to die,
maybe you're not gonna qualify.
The average length to stay on hospice right now,
or the medium length to stay is about 2 1/2 weeks.
So half the patients run short of that,
and of that half who run shorter,
a good percent of that half are on for hours to days.
So clearly referrals are on the late side, by and large.
It's largely been restricted to cancer patients in the past,
although criteria have been developed
for dementia, CHF, COPD, and frailty.
Again, it's gotta be people who are really
toward the end stage of those illnesses
because those illnesses can go on
for a very long period of time.
If you want to continue active treatment,
hospice is not gonna be for you,
the primary care giver, not everybody has somebody.
Hospice tends to be a program for
white middle class and upper class people.
So, people who don't have a lot of resources
or haven't had a lot of contact with the healthcare system
tend not to choose hospice.
It requires a lot of trust in the system.
So the challenges of the hospice discussion,
again, I'm an expert at the hospice discussion.
I know when I'm gonna have that discussion
for the first time with a family.
It's a bad day for them.
They're gonna remember that
just like the first diagnosis day,
because I'm gonna have to tell them some really hard truths.
So again, it's a bad news discussion,
I have to tell them the treatment's not working,
they're more likely than not to die in the next six months
and they're gonna have to give up on hospitalization
and disease-driven treatment to get on the program.
So what about if they're willing to stop most treatments?
What if they're willing to be DNR
but they wanna try the easy treatments?
What about if hospitalization could help me a little bit,
you know, get through a tough spot?
Well, you can't have hospice, then.
That's a hard nut for a lot of folks
because these small chances of cure or prolonging life
are at the core of hope for many people,
particularly as they're first
starting to think about these things.
- [Man] Dr. Quill,
what about the transition from primary care to you?
Who should be having this discussion?
How do you manage that?
- The answer is, somebody should have the case.
The person who knows the patient the best
should have the discussion, who they trust the most.
So again it really depends a lot.
If primary care doc is still very involved,
they might be the one.
If the specialist is the one who's most involved,
they're clearly going to have to be part of that discussion.
If palliative care has gotten involved
and we now have a good relationship, it may be us.
It's gotta be the person who the patient trusts
and it may be, a lot of times with us,
it's all of us sitting down together
with the patient and family.
Because the complexity starts to get very high
of the number of variables they have to consider.
So again, just a picture of palliative care
alongside life-sustaining therapy.
So again, in the early going you might see,
on the left hand side, people who are in line
for a heart transplant might be getting palliative care.
If they get the transplant and they do well with it,
they may live a very long period of time.
They may have chemotherapy
that has got a 50% chance of curing them.
Well, why not get palliative care from the get-go
because you might spend less time in the hospital,
maybe you can get more chemo if you feel better,
there's a lot of pluses to it.
And then as people get sicker,
palliative care becomes a bigger piece of the puzzle.
And then hospice is purely palliative care,
right, this is the model.
So palliative care is this, hoping for the best.
So we have these, looking at what treatments might work
and we really have to think about this.
If they're talking experimental therapy
and it's easy experimental therapy, you'd say, "Why not?
"You know, if it's not going to make me sick, why not try
"because if it works great, if it doesn't work
"I haven't lost anything."
So we'll talk about what's available, the treatment,
and explore the pluses and minuses.
If people are gonna try long shot treatment
we're gonna make sure they're going into it
with their eyes wide open
in terms of odds of working and toxicity.
At the same time that we're having that
hope-for-the-best conversation,
let's pay attention to the symptoms right now.
So make sure if pain is there or shortness of breath,
we're addressing those things.
If there are depression or anxiety,
if there are spiritual issues,
we're going to try to attend to those in the present
to try to make the quality of life as good as it can be.
And again as the odds of responding to treatment
get smaller, the importance of this concomitant effort
is really, really grows.
And then at the same time, we might want to think about
preparing for the worst in case treatment doesn't go.
So again think about a lot of the patients who are
in the hospital, who are in these long shot adventures,
are they aware that it's as long shot as it really is
and have they done the preparation work?
Many people say, "I don't wanna do that work."
That's fine but it ought not to be that
we haven't offered them the opportunity to do it with us.
So again, unfinished business,
open to spiritual and existential issues,
all these amazing things that occur on a hospice,
you don't have to be on hospice to have those things occur.
You have to have a mindset that says, "This is important,
"this is a critical phase of my life that might be short."
- [Woman] Dr. Quill do you find that you have to
also balance the depression?
I mean, if I'm dying
I'm not going to be happy in most cases.
To me,
you don't want to
belittle the fact
that you should be sad that your life is passing.
So you don't want to medicate or do things that lead you to,
"Oh, I'm really happy, my life is passing,
isn't that great?"
- Right, so there's a number of distinctions to be made.
One is between sadness about your life coming to a close
which is part and parcel of this
and it's not clinical depression.
There's also people who will get seriously ill,
who become clinically depressed.
And when you're clinically depressed,
you see the dark side clear as a bell
and you can't see much of anything else.
That clinical depression you'd want to treat
with medication and talk
because if people weren't depressed
they'd see things differently and you want to make sure
you don't make big life-ending decisions
in the presence of clinical depression
that could've been treated.
But it's a grey area and a lot of times if it's really grey,
we get our psychiatric colleagues to help us out,
sort through what's really going on.
Okay, so, like hospice, palliative care
provides improved pain and symptom management,
attention to quality of life,
a look at goals and priorities,
this opportunity to consider life closure,
multi-disciplinary approach
that focuses on patient and family
but you don't have to let go
of disease-directed therapy, hospitalization.
Palliation doesn't even have to be
the primary goal of treatment
and you don't have to accept the prognosis.
So palliative care, when should it be discussed?
Again, you can ask the question over in the hospital,
would you be surprised if the patient died
during this hospitalization?
And again, I think you would find a lot of people
who would not be surprised
if they died during that hospitalization.
Some of those patients are imminently dying.
The one I really like to try to put in people's mind
is when high suffering and poor prognosis,
when you walk in the room, you think,
"Oh my God, this is really hard."
You're thinking this, you're not saying this.
"This is really horrible."
You'd walk out shaking your head
and what you have to do then is say,
"Okay, we have to figure out how are we going to go in
"and have the, somebody's got to go back
"and have the conversation."
Do they really understand how sick they are?
Do they really understand that there could be other options?
And we pick and choose who's the right person to do that,
have that conversation.
So again, the surprise, would you be surprised
if the patient died in the next six months?
And again, think of people in your family.
As you get to the older folks or the sicker folks,
would you be surprised if they died in the next six months
or many of the people in the hospital?
And again, maybe we should normalize this discussion,
maybe it should be had with everybody
who is facing this, really.
And the question then becomes,
who should have the conversation?
It can't always be a palliative care specialist.
I mean, that would be kind of silly
from a policy point of view to have to have
a super specialist to have conversations
that should be part of the norm.
So again, this is the study probably most of you have
seen this study, this was a great study for palliative care
and there have now been four or five studies
that have been similar to this but it's basically
people with non-small cell lung cancer that was metastatic.
They were randomized into two groups.
One group got standard chemotherapy and radiation alone.
The other group got standard chemotherapy,
radiation plus palliative care from the get-go.
And they looked at a lot of things
and a lot of the findings weren't surprising.
If you have some member of the team
focusing on quality of life alongside the disease treatment,
you're gonna expect that pain and shortness of breath
are probably going to be better managed in that group.
It turns out that was the case.
If you have somebody who's paying attention to depression
and you treat it, there's going to be less depression
in the group if you pay attention to it,
and that was the case.
You might also expect there'd be less aggressive
near futile treatment at the very end of life
and that was also the case.
So the people who had palliative care from the get-go
made more decisions toward hospice at the end of life.
But the surprising finding in this study was that
the group that got palliative care from the get-go
lived almost three months longer
than the group that got usual care.
How the hell could that be?
How could that be?
What are some hypotheses?
- [Woman] Less stress.
- [Quill] Less stress maybe helped them live longer.
Maybe the stress of illness, all this untalked about stuff
was building up and putting them down.
- [Woman] Less invasive treatment.
- [Quill] What's that?
- [Woman] Less invasive treatment.
- [Quill] Less invasive treatment.
So it may be that super aggressive treatment
for people who are really frail and near death
shortens life more than it lengthens life,
which is actually what one of my main hypotheses is.
- [Woman] Having a sense of control over the situation?
- Okay, maybe control has a big sense of well being
and helps people do better.
The answer is we don't really know why, right,
but it's a striking finding
and it goes against the death panel thing, right,
which would say giving up early would shorten life.
- [Man] Was longer median survival
associated with lower costs?
- This study did not look at cost.
But I bet there's a lot of studies that show that
earlier palliative care can lessen net cost.
Because again, it's less futile aggressive treatment
at the end of life.
- [Woman] Does palliative care follow the same trend
as hospice of being more middle class patients
or is it better offered across demographics?
- It's probably to some degree
although not as much as hospice
because again some people might refuse
a palliative care consult because any thought,
"Oh palliative care equals hospice equals death,
I don't wanna talk about it."
And we see a little of that here but it's much less so
than the decision to pursue purely palliative care
which would be the hospice decision.
So who's responsible for palliative care?
So this is just moving into a little different zone.
So again we wrote a paper a couple years ago
about specialty palliative care, which is what I do,
versus general palliative care, which is probably
what good doctors and nurse practitioners
and nurses should do with patients.
So general palliative care
provided by non-palliative specialists, primary care doctors
alongside any or all desired treatments
should be part of good medical care.
And then specialty palliative care would be provided
by somebody who has specialized training,
can also be alongside any and all desired treatments
but it may require specialized knowledge and abilities
and it may be restricted to really difficult cases.
That would be a model.
Could be consultative,
in which case you'd provide input to the treating team
but then they would provide the treatment,
or it could be taking over aspects of the care
which would be more of a referral model.
So what might be under the category
of general palliative care skills
that all good clinicians should have?
Basic pain and symptom management should be the basics.
I mean, this is not rocket science, right?
It's a matter of will and learning some basic things.
Goals of care discussions, again,
they can be psychologically challenging,
but we do other, all good clinicians
do other hard decisions with people.
So that's something that can be learned.
Basic family meetings, sitting down with people
and seeing if there's a consensus
should be part of the skillset of all good clinicians.
And then basic decisions about DNR and resuscitation
has to be part of the skillset of good clinicians.
And then, specialty palliative care,
complicated pain and symptom management,
so the basics have been tried, it ain't working.
Major family conflict about how to move forward,
or family and staff conflict,
or intra-staff conflict about how to move forward.
Near futility discussions when, by and large,
families are wanting to keep going no matter what,
the patient's dying, we're running out of options.
And then, last resort options, when a patient asks
about assisted dying and those kinds of things.
You want somebody who's used to having those conversations
with really sick people.
Isn't palliative care just good medicine?
And the answer is, it should be but, by and large, it isn't.
So it's not, we a do a reasonable job at the U of R
putting palliative care in the curriculum
at different places.
I think our students get more exposed than most
but we have a warped thing
of a lot of palliative care-trained people
who are very integrated into the medical school,
so I think it's an unusual environment.
Practicing clinicians are, by and large, self-taught
and that may be good, it may not be good.
But they don't know what they don't know
and the knowledge and skillsets are very uneven at best.
And again, most non-specialists
don't see the challenging cases,
so again we'd need to have specialty care available
in the ideal world for difficult cases.
So when are transitions
when palliative care should be considered?
If it isn't part of the puzzle,
you could say a new life-threatening diagnosis,
maybe when people are talking about
evidence-based treatment,
it might be prostate cancer when people are thinking about,
"Gee, should I start treatment or should I not?"
There's data about not treating early prostate cancer
and stuff with people are weighing these issues.
They're weighing benefits and burdens.
One might think about palliative care
from the get-go for all patients.
Again, if we do use this model,
it can't be specialty palliative care, right,
because we don't have enough specialists to do this.
Treatment not working, so these are folks
who have tried the first-line, maybe second-line treatment
and they're starting to get into treatments
where the benefits and burdens are more difficult.
It seems to me this should always include palliative care
because people are getting sicker,
their odds of responding are getting less,
and the trade-offs are getting much tougher.
All evidence-based treatment not working.
So if somebody's gonna be trying experimental therapy,
again the odds of experimental therapy working in a big way
for an individual patient are very low.
When you take a look at what people
think they're getting with experimental therapy
and what they would think their odds are,
it's radically different from what the odds are.
So again, at this point, treatments unlikely to really help,
palliation should clearly be a central part of the puzzle.
It doesn't mean they don't try experimental therapy,
it just means they ought to be given the opportunity,
have their symptoms well-addressed,
and they ought to have some conversation
about where they are in the trajectory of their illness.
Unless they really don't want to have that conversation,
in which case they don't have to have it.
But even if they refuse to have the conversation, right,
there's some messaging in that.
They then become aware at some level
that there's something to be talked about.
- [Man] In research universities,
one of the things you're evaluated
on a certain approval rating
for randomized control trials of cancer treatment,
there is just a question on MDR,
and the version of chemotherapy standard issue is
deciding that he was being in a randomized control trial
of experimental treatment, meaning that there's conflict
between the people promoting the trials and the treatment.
- Yes. (laughs)
There is, to some degree.
Again, there wouldn't be a conflict
around the pain and symptom management side of it, okay.
So again, if people are getting into an experimental trial,
palliative care from a pain and symptoms management part
should be a no-brainer, really.
And, in fact, people may do better
with their experimental trial if they feel better,
they may be able to get more treatment, that kind of stuff.
I think where it becomes a conflict
is when you really make sure people understand
the odds of responding and the alternatives.
And I do think if you were from a role as an efficist
you'd say, "Maybe it should be palliative care people
"who are getting consent for the experimental therapy
"because there's much less invested interest
"in going one way or the other."
Now again, I think experimental trials are really important.
I'm very supportive of them,
but people need to go in with their eyes wide open
and I think we would help that if that to occur.
But it may, if we were too aggressive,
and again a lot of palliative care,
by the way people this is now our bias,
a lot of palliative care people see their role
affecting people from that cruel system over there.
So if we see our role early on in palliative care,
if you see your role as getting everybody under hospice,
you ain't gonna get a lot of consults in a place like this,
right, because people are not gonna be happy with you.
So when we're gonna raise hospice,
or we're gonna raise stopping treatment decisions
as a consultant, we check in with the treating team first
and say, "Are you guys okay with this?"
Now again, if it's one of those
high-suffering, poor prognosis,
we may push on the treating teams pretty hard to say,
"Look, I really think we need to have this conversation."
And now that we're an established program
we can push even harder.
But when we were first getting started
we had to tread gingerly in that
because the culture is more treatment.
- [Man] In the context of an experimental treatment,
how can you be sure that
the very small benefits of life expectancy
are due to palliative care these patients are receiving
as opposed to the experimental therapy?
- Because you give palliative care to both groups,
either way you'd have it watched out in that circumstance.
But yeah, if you just had the palliative care
in the intervention group and the non-intervention group
you didn't do it and the group lived longer, you would say,
like on that trial earlier, non small-cell lung cancer,
I think that's an example of not doing things
and added support having some benefit for people.
- [Man] So do you think that means the experimental
researchers have to provide the palliative care specialist?
- I think if you were doing a study that compared that,
I think you'd have to make sure that both groups
got similar palliative care opportunities.
I think that would be the way to control for it in some way.
- [Man] Yes sir, question about non-lethal palliative care.
- Non-lethal palliative care?
- [Man] I mean, not palliative care
but diseases for which it's really medical management
of chronic debilitating disease
that's not going to result in a patient's death.
Isn't that really what much of
chronic disease management is,
is palliative care and there's the focus of,
"I want you to have a comfortable, high quality of life
but there's no cure for what you've got."
That's palliative, it's not end-of-life care
and shouldn't that be distributed across many more--
- Absolutely.
All really serious chronic diseases
should have palliative care as a piece of that puzzle.
And again, that includes ideal disease management,
but then it says what are the symptoms associated with this?
And what are some of the issues associated with it?
So make sure somebody's gonna be dealing with those things.
Now there are places in the hospital,
by the way, that do this really well.
You look at the ALS clinic in our institution
from my point of view.
Could it be better if we had palliative care
seeing every patient?
It might be a little better but,
by and large, they really do deal with these issues.
They deal in a deep way with the patients.
They're very connected with them.
They are open about what's really going on.
They are doing great primary palliative care
and that would be the model.
Other places in the hospital of disease management,
it's really biological disease management
that's how it's measured and that is probably not a--
- [Man] How do you get those specialties
to talk about what they do as palliative?
- It's a long slow process.
And generally what you have to do is you find a champion
who's in a position of power within each of the zones
and then you get invited in.
That's sort of how it works.
So again, in Oncology one example of that,
so again we got invited in a little in Oncology.
We're now pretty much part of the fabric in Oncology
and that's a fairly standard way.
Heart failure, we're still, I think,
coming and going a little bit with heart failure.
They sort of get it but we're not really part of the fabric
of the heart failure team at this point and we should be.
- [Woman] Dr. Quill, what are we doing
in terms of pain medication?
99 years ago there was Brompton's cocktail.
Then we went to methadone.
Medical marijuana's now on the horizon.
Any new things?
- There are new things.
One of the new things are really--
- [Woman] It takes 20 years to figure it out.
- Yeah, well, whether new opioids
are substantially different from the old opioids,
they're probably not.
Medical marijuana is a new thing on the block.
Finding its proper role is gonna be a big job.
Rob has been very involved in
kind of helping us figure that out
but I think that that's very much a work in progress
right now, based on very little data.
So, those are coming on
but we have good drugs for most things.
Again, if you take a look
where the data starts to get very thin,
nausea and vomiting starts to get very thin,
it's mostly empirical and good guesswork
and some logic, but not a lot of data.
- [Woman] And it's good now that we have medications
for opioid-induced constipation.
It's all over the commercials.
- Yeah well that's an example of a perversion
of something in my,
well this is a whole another talk
which I better not get off on,
but it's marketing of the most expensive medication
that can work where other extremely cheap medicines work
if you take them regularly.
So what do they market?
The most expensive one
and try to get the public to demand it.
(man speaks off microphone)
Pardon me?
(man speaks off microphone)
These would be narcotic antagonists in the gut.
So, why are these conversations so hard?
There's a whole world of terror management and, you know,
those of you who have been through this with your families,
this is scary stuff
particularly when you first start to deal with this.
So there's a lot of deep emotion,
a lot of fears about death.
We don't talk a lot in our culture about these issues.
The information is very complicated
and people have written about this.
But if you have a 5% chance of responding to this treatment,
which is often how it's presented, what does that mean?
- [Man] Sounds pretty good.
- It sounds pretty good, right?
So what are the questions that you'd want to ask
if you had a 5% chance?
Think about yourselves facing that or a family member.
- [Man] What is the response?
- [Quill] What's the response, okay, and by and large,
a response rate, if you're in the responding group,
is a short prolongation of life,
short like weeks to a month or two.
And what else do you want to ask?
- [Woman] Side effects.
- What happens if there's a side effect?
Because the side effects are gonna happen to the 95%.
So the odds are overwhelming that,
if the side effects are big,
it's gonna help define the last part of your life.
Okay, so these are really hard decisions.
Now again, many people will still try treatment
because they want to be in the 5% and they also think,
"Well, maybe in the 5%, maybe the average is two weeks,
"but maybe I'll get two months or two years,"
or something like that, or indefinite life,
which is what people really want.
- [Man] They also play the lottery.
- Play the lottery, yeah.
Okay, and then optimism,
again clinicians vary in how they present this stuff.
You know, are you an optimist?
If you're an optimist you're gonna shade things
in a positive direction
and even those of us in palliative care, by and large,
shade things a little in the positive direction.
One of the ways to get around that,
I don't know if I have a slide in,
but when we give people or any of the average person
but they're on this list this long, could be longer
and we'll do everything in our power to make it longer,
but we make ourselves always say
there could be shorter part of it
because otherwise people are gonna be so surprised
when the didn't live at least until the average.
And then the fragmentation we've talked a little bit about.
So some difficult questions.
Should I try experimental therapy and so on?
So, why try experimental therapy?
- [Man] Because you're improving the life of others.
- Right. (laughs)
Sure, why else try it?
- [Man] There's no good reason.
- [Quill] No, there is a good reason.
Well, there are good reasons
because you're gonna be the one,
because I'm gonna be the one, it might work,
right, it hasn't been proven not to work.
- [Man] I do buy lottery tickets.
- (Laughs) It's similar to a lottery ticket.
- [Woman] Somebody else is gonna pay.
- Somebody else is gonna pay, so it's free.
But the stuff that goes around it ain't free.
Right, so the drug itself is free
but all the hospitalizations and trouble are not, around it.
Don't wanna die.
So you can try it as a way of avoiding giving up, right.
And that's often, and the whole notion of being a fighter
is very American notion, it's particularly strong
in our culture, so going down swinging,
don't go gently into the night, that kind of stuff.
So why not try it?
Because if it's toxic,
it's likely to define the last part of your life, right.
You're gonna spend it much more likely
in the hospital, side effects, more doctors.
If you knew you were dying,
you probably wouldn't be at this lecture
and the last place you'd want to be is
in a doctor's office regularly, right.
You might want to be someplace different.
So again, if it's not toxic, why not?
And again, if people are trying experimental therapy,
they clearly should be getting palliative care
at the same time and doing some preparation
if they're willing to do that.
We should be much more open about our own views
about this, if asked, by the way.
If I'm asked, I will definitely,
so I will often ask people if they want my opinion
about things, so the ask-tell-ask thing
at least lets them know that there's something
that I have that I could give to them
and most people say they want it then.
Is it time for hospice?
Again, really pluses the hospice when people get there,
very high-rating when it gets there,
but it's a really hard transition.
And most people are very satisfied once they got there.
There's very good backup systems at home for hospice,
so if you get in trouble in the middle of the night,
we can get people out to your house
and they're people with knowledge.
How can hope be preserved?
And again, I'm gonna zoom through this
because I want to go through a case quickly.
So preserving hope, again if we only have
medical avenues for hope,
it's a pretty narrow window on hope, right.
That's what's gonna take you from Rochester, to Mayo Clinic,
to Harvard, to try to find the latest this and that,
if you're gonna do that,
and there will always be a medical thing that can be tried.
You can always find somebody.
Go to NIH or something like that.
But again, if we think about other dimensions of hope,
it can open up a lot of possibilities,
spiritual, religious,
are there family things going on that need some attention?
Alternative therapies may provide some hope for some people.
Again, if it's not toxic, why not?
The odds of alternative therapies working
are probably similar to the odds
of experimental aggressive treatment working.
So again, if you wanted to try something that could,
at least, be on the radar screen.
And then this opportunity to rethink what your goals are.
Again, if you knew that you were really sick
and nearing the end,
you would be rethinking how you spend your time
and that's a real potential positive
for people at this phase of life.
They can rethink and do things that are really important
and many people will say, "I've never felt more alive
"than I felt after I got this diagnosis."
It's a weird thing, right, that that would make your life
look different and be experienced differently
but it does happen to many people, not everybody.
Will you work with me all the way through to my death,
no matter what happens?
I will tell you that this is a real issue.
Who is gonna step up as you stop treatment?
So as long as you're gonna get treatment,
there's a lot of people that are ready to take care of you
and there's a lot of money involved.
That's not the only reason, people they want to help
but there's a lot of things that reinforce intervention.
But if you move toward hospice,
it's not completely clear who that person should be.
But it is clear that you need to find somebody,
and it could be the primary care doc, specialist,
or palliative care doc, but whoever that is needs to commit
to that last phase of your life no matter where it goes.
And again, because this non-abandonment thing,
those who know who their person that they're working with
are really ahead of the game.
They know who to call as things get tough,
they know they can count on somebody,
it's a gigantic issue.
So palliative care, the bottom line,
should be part of the plan for all seriously ill patients,
shouldn't wait for there to be a drastic need,
should be obtained early on.
All clinicians who care for seriously ill patients
should know how to do the basics,
and then specialist involvement as backup.
And again, this is just trying to use this
biopsychosocial spiritual approach
that we've been talking about.
Hospice, premier program providing
palliative care for terminally ill patients.
It's a very hard transition, yet most people are very happy
with the program once the transition is made.
It's the best home care program that we have.
It can also be provided at nursing homes, at hospice houses.
And most people can find a meaningful,
relatively peaceful death on hospice.
So now we'll run through a quick case.
Any questions before the case?
No? Yes?
- [Man] Actually, could I just quickly use this to
talk about a quick experience?
My wife just passed away less than two weeks ago.
We were connected with your department and with Wilmot.
It's almost like a case presentation.
When she first became ill,
so a number of things you talked about,
she was given a basically one-year diagnosis
and within that same couple of days
we met with one of your colleagues
and have been in touch with her straight through ever since.
When the time came that the treatments were, you know,
having that discussion,
already we were sort of prepared.
We knew this was coming, we've been with you for a year now,
so we're finally there.
It made that transition, having that long contact
with palliative for over a year, so much more easy.
We had all the support at home.
And then,
we had two months that was just like
what you would like to describe.
And in the end, we were surrounded by loved ones.
We had lights down, we had a candle on,
and we had all that time to make connections
and it was about as peaceful as one could manage.
So I just wanted to tell you,
thank you so much for all of it.
- Well, thank you for sharing that
because that really does say
what we ideally would like to see happen.
So the early involvement makes the transition
a billion times easier than if you're meeting
somebody like me at this critical juncture
where you're first coming to grips with this thing,
"I don't even know you and you're telling me all this stuff
"that's so different from what anybody else has told me."
So it's very different and then, still a hard transition,
but if you can make it in a timely way,
there are these things that can happen
in the last couple months.
So again, that would be the way
we're trying to make the system work.
So, thank you for sharing that.
So, quickly through this case.
64 year old woman, two months prior to her presentation,
she had back pain radiating to right chest.
No cough, hemoptysis.
She was a non-smoker.
Her chest showed a lesion.
You can see down here, this is not supposed to be there.
And she also had a lesion in her spine,
and something in her brain,
which we thought was probably there before.
So when you start looking at brains,
probably none of your brains,
but average people's brains, you find stuff.
And most of it is Incidentalomas.
They're not really relevant.
We thought this was an Incidentaloma, turned out not to be.
So, she had a biopsy.
It showed Adenocarcinoma of the lung,
which is a tough kind of cancer.
It did have some receptor positivity
that meant that one of the kinds of chemotherapy
tends to work reasonably well for it.
But it was locally spread so it was stage four.
She had radiation of the spine, chemotherapy,
and palliative care from the get-go
because somebody in the Oncology world had read about this
and she was aware of this, the patient.
So she was an educated patient.
So what do we initially address?
Her pain in her back was seven out of 10.
She was having trouble thinking straight.
So again, and she responded very nicely to low-dose opioids.
She also had long-standing anxiety as part of her life,
that was part of her wiring.
And we treated that with benzodiazepines and SSRIs
and it really helped those symptoms get better.
And she had a lot of thoughts about what was going on
so we set her up with a therapist.
So she was able to have therapy throughout this process.
She wanted to set limits on treatment from the get-go.
She said, "You know, I want treatment,
"what treatment can help me?"
"But ventilators and shocks and all that stuff,
"that'd be way more than what I want to go through."
So she became DNR, DNI from the get-go
at the time of her diagnosis.
This was early palliative care.
So this is a lot more than would usually be happening
in early palliative care but it was there to happen.
So the next two years
she had a lot of fear about future suffering.
she eventually failed first-line therapy.
She failed it,
therapy failed her.
I hate that she failed therapy.
And went to second-line as a time-limited trial.
She wasn't sure she wanted to continue it.
She wasn't sure how she would tolerate it.
She tolerated it pretty well.
Her husband became more withdrawn as the time went on,
we got him a counselor and actually their relationship
got much better than it had ever been.
And so this personal growth was really occurring for them,
as a couple, throughout this process.
Eventually her disease, now two years down the road,
lesions all started to grow, including this one
that we thought was a benign lesion,
and her brain was growing.
We resected that,
she tried a little bit of experimental chemotherapy,
and then went on to hospice, and died peacefully,
again, about six weeks later at home
with her family at her side.
So it really was medicine working well
to provide her with all kinds of treatments
that might help, turned out it did help.
But also a timely transition to hospice.
So let's stop, we've got five minutes
for questions and comments.
And a couple of references
for those of you who don't have these references,
you might want to look them up.
- [Woman] I was wondering if you could talk about
giving family diagnosis where you have a patient
that might be ready to transition into palliative care
but family members are resistant?
- Yeah, so, just a little correction in terms of life,
transitioning into hospice, you're thinking of,
rather than palliative care, because palliative care,
they can get alongside all aggressive therapy, right.
But a lot of times patients say they're ready
but the family won't let them go
and they cave to the family.
Alright, so what do we do in those circumstances?
Struggle, we struggle, there's no simple answer.
So we talk with the patient,
we may talk privately with the patient, we say,
"Do you want us to help you explain this to your family
"and let them know why it's going on?"
And if they really want us to do that,
we will ally with them and try to with the family
because an important fact, a patient with capacity
has the right to make those decisions.
Now what more often happens is
they don't want to stir the family dynamics up
and they don't want to have everybody
have a bad feeling about it.
So if that's the case, then we try to talk to the family,
see if we can find common ground.
We do a lot of negotiation and stuff.
And if the family really wants treatment
and the patient's really gonna accede to that,
we go on with treatment
and provide the palliative care at the same time.
No easy answer.
- [Woman] Is that something that you have time built in?
It sounds like a very time-consuming process.
- One of the great things
about being a palliative care consultant,
particularly in the hospital,
is we do have time and we have teams that can go in
and we can sit down for an hour a couple times a week
and have these conversations.
And that's a huge thing
because these are not simple conversations,
and not particularly well-compensated.
You know, if you're an economic determinist, you can say,
"Why waste your time with something like that
"when you can make so much more money
"by just doing more treatment?"
Other comments or questions?
Yeah, wait, one more.
- [Man] Given the results in New England Journal trial,
having a lot of people they can say
that the drug worked that well
and would you prescribe by every physician in the country
for somebody with that condition.
So, have you seen a shift
as far as acceptance of palliative care
as a result of some of the larger published trials?
- There is a shift, and particularly
in that particular domain.
So our challenge from an evidence point of view
is demonstrated in other domains.
These studies are incredibly hard to do in a way
that's really compelling scientifically.
These are real world studies.
But in the non-small cell cancer, in the lung cancer zone,
we get referred a lot early because the folks here get it.
And it's relative to the cost of chemotherapy,
it's a real cheap intervention and an effective one.
- [Man] Is the palliative care community
ready for the baby boom tidal wave?
- Are any of us ready for the baby boom tidal wave?
The answer is, not if we're gonna have
all of palliative care being done by specialists.
It just can't be, there aren't enough of us to do it.
We're drowning right now
and Rochester has more palliative care clinicians,
doctors certainly, per capita
than any other part of the country.
So there are cities that have more than we do
but they have a population about 10 times our size.
So we have a lot more and, still,
we don't have enough personnel to do all this.
So the long term challenge is gonna be
to train up the hospitalists and the primary care docs
and it's a good thing to do.
This work is so rich and meaningful
if people have the time protected to do it
and get the skillsets.
- [Man] Is there time and is there a plan
to try to reduce this incredible cost?
- There's a lot of conversation, again,
if we ever become self-insured,
then the incentive is ours to do this.
And again, this is from an economic point of view,
a no-brainer, if you're self-insured.
If somebody else is paying the bill,
then the other is a no-brainer
from an economic point of view,
we'll just treat as long as people will allow us to
without really telling them what's going on.
Okay, thank you.
(audience claps)