Cancer Answers: Compassionate Care for Advanced Lung Cancer, April 3, 2011

Dr. Jennifer Temel, Compassionate Care for Advanced
Lung Cancer
April 3, 2011Welcome to Yale Cancer Center Answers with doctors Francine
Foss and Lynn Wilson.  I am Bruce Barber.  Dr. Foss is a
Professor of Medical Oncology and Dermatology, specializing in the
treatment of lymphomas.  Dr. Wilson is a Professor of
Therapeutic Radiology and an expert in the use of radiation to
treat lung cancers and cutaneous lymphomas.  If you would like
to join the conversation, you can contact the doctors
directly.  The address is canceranswers@yale.edu and
the phone number is 1-888-234-4YCC.  This week, guest-host Dr.
Thomas Lynch, sits down for a conversation with Dr. Jennifer
Temel.  Dr. Lynch is Director of Yale Cancer Center andPhysician-in-Chief of Smilow Cancer Hospital.  Dr. Temel
is Assistant Professor of Medical Oncology and Hematology at
Massachusetts General Hospital and she joins Dr. Lynch this evening
to talk about advanced lung cancer.  Here is Dr. Thomas
Lynch.Lynch
Let's start of by having you tell us a little bit about what got
you into the field of lung cancer?Temel
 When I was first training in oncology, I think I was struck by
both the amount of physical and emotional suffering that patients
with advanced cancers like lung cancer went through and seeing that
made me interested in not only taking care of those patients
clinically, but also researching ways to optimize and improve the
care that they receive.Lynch
How are we doing with lung cancer?  If a patient has advanced
lung cancer with disease spread beyond the lung itself, how do
those patients do?Temel
 The news in the last couple of years is that we have really seen
marked improvements in lung cancer treatments.  Treatments are
certainly getting better, especially novel targeted therapies and
we are seeing patients, overall, live longer with their disease;
however, where I think we have lagged behind is in supportive care
treatments for patients with lung cancer, meaning making sure that
they get optimal symptom management so they can enjoy their quality
of life as much as possible and be as functional is possible. Be
able to work and go out with their friends and family and enjoy
social time.Lynch
Dr. Temel, when you see a patient who has advanced lung cancer and
the patient or the family asks how long is my relative going to
live with this disease, what do you say?Temel
 That's a very important issue.  Data tells us that overall
patients who have serious illnesses such as cancer want general
amounts of prognostic information, so they want to have a general
sense of how they are going to do with their disease. But how
patients want to hear this information, when they want to hear it,
and how much information they want to receive, varies patient to
patient, so I think it is important that clinicians get to know
their patient and have a better understanding of what would be the
optimal way for them to hear and receive this type of
information.Lynch
 Some people have said, and I have heard patients and family tell
me this, that you could be harming the patient by telling them that
they have a bad prognosis where they could die from their cancer
and they want to be protective for their family member. How do you
react to that and how do you deal with that with patients and
families?3:14 into mp3 file 
http://yalecancercenter.org/podcast/apr0311-cancer-answers-temel.mp3Temel             
 Traditionally that has been a concern on the part of clinicians
that if they disclose a poor prognosis, for example, a short life
expectancy, that they will cause patients to feel depressed or feel
despair and that may have negative implications for their cancer,
and what we know from recent data is that that is actually not
true, it is not harmful for patients to know their prognostic
information. Patients who have had conversations with their
physicians about their end of life care or decisions about care are
no more likely to feel depressed or panicked, or even sad and
worried, so it is not harmful to disclose that type of information
to advanced cancer patients.Lynch
For our audience's benefit, who may not know a lot about lung
cancer, the average person with metastatic lung cancer, how long
does the average person live?Temel
 When people look up this type of information in the newspaper or
on the internet, it can be somewhat misleading because we know that
patients with advanced lung cancer who participate in clinical
trials tend to be a healthier group of patients, and it is not
uncommon in those situations to see people have a life expectancy
of a year or greater, but for all patients diagnosed with this
disease, older people, patients with other medical illnesses, the
average life expectancy remains less than one year, about 10
months.Lynch
Ten months, do you tell patients that the average life expectancy
may only be 10 months?Temel
 My general practice is to not tell patients that and getting back
to what I was saying before, I think it is very important for
clinicians and patients to have an established relationship and for
a patient to be able to some extent negotiate when they receive
this type of information.  My practice style is even when I am
first meeting patients before, for example, I administer
chemotherapy, I make sure that they have an understanding that
their cancer is not curable, and I think that is a very important
piece of information that should always be provided to patients
before they begin chemotherapy, for them to understand that the
intent of the chemotherapy is not to cure their cancer.Lynch
Dr. Temel, you have lectured extensively on talking to patients
about prognosis.  Do you think it allows them to make better
treatment decisions, if they have a better understanding of their
prognosis?Temel
 I think that is 100% true.  There has been data going back as
far as 15 years or 20 years telling us that how patients view their
illness and prognosis, certainly translates into decisions about
their care.  As a nation, we are seeing care in cancer and in
other diseases become more aggressive, we are seeing patients spend
more time in the hospital and less time at home, and what we know
is that patients who have a faulty or over estimation of their
prognosis, are more likely to choose this aggressive care and not
only is that associated with a worse quality of death for patients,
but also significantly worse bereavement outcomes for their family
members.Lynch
What do you mean by bereavement outcomes?6:13 into mp3 file 
http://yalecancercenter.org/podcast/apr0311-cancer-answers-temel.mp3Temel
 Obviously after a loved one dies family members go through a
period of sadness and grief and we know that the period of sadness
and grief is extended and significantly worse when they view their
loved one as having a poor quality of death, for example, a death
that had significant pain or they were in the hospital with a lot
of invasive care. So patients who have a better quality of death,
their family members adjust more smoothly after the patient has
passed away.Lynch
As a doctor, how do you find the language to talk to patients about
dying?  It must be something that is difficult to do and how
do you do that as a clinician?Temel
 Again, I think importantly data tells us that for patients with
serious illnesses, especially advanced cancer, it is very important
for them to know that their clinician is prepared for their
death.  So again, within the first weeks or months of meeting
someone with a terminal illness, I do not necessarily think it is
the right thing or necessarily appropriate to discuss their death,
but as patients become more ill from their cancer and are becoming
closer to the time of their death, I think that as their care
providers we owe it to them to begin a dialogue about their life
expectancy and about their wishes when they do become more ill, for
example, do they want to be at home or in a hospice facility?Lynch
Dr. Temel, do you think that oncologists in general, particularly
those who treat lung cancer, do a good job in talking to their
patients about death, or do you think this is an area that we could
improve upon?Temel
 The good news is that this is becoming a more important area of
research.  Over the last couple of years, we have seen more
data telling us that the patients want this type of information,
even some data giving clinicians some suggestions on how to provide
this information, so I think it is an area of oncology that is
gaining more focus. For example, the American Society of Clinical
Oncology just came out with a statement about encouraging
oncologists to have these conversations earlier in the course of
their disease, so I think we are going to see improvements in this
area in the upcoming years.Lynch
Among the many things you do at the Massachusetts General Hospital,
you run the training program which trains future hematologists and
oncologists. How do you teach compassion, how do you teach the
ability to talk to patients about death?Temel
 I think the most important way for medical students, residents,
and trainees to learn how to have a compassionate conversation and
provide compassionate care to patients is to actually see someone
do it well.  When you watch a clinician have a very
compassionate, sensitive, interested conversation with the patients
and families, I think that's the best way to model your own style.
Also, unfortunately, seeing clinicians do it in a poor way, seeing
clinicians communicate poorly with patients, is also important for
them to learn what not to do when they communicate with
patients.9:23 into mp3 file 
http://yalecancercenter.org/podcast/apr0311-cancer-answers-temel.mp3Lynch             
 What's an example of clinicians both doing it well and clinicians
who are doing it poorly? Think back to your own training, or to
your own experiences of seeing it done well and then not done
well.Temel
 One of the common mistakes that clinicians make when they are
having these conversations with patients is that they do not give
the patients a chance to observe the information and to ask
questions.  I think clinicians get very nervous when they are
having these types of conversations, so they tend to speak
incessantly and not give the patient and family time to process the
information and ask appropriate questions, so I think it is really
important to leave adequate time to have these conversations with
patients and families.  I think the other big mistake that we
make is we provide the information to a patient, but they come back
and say, you know doc, I should live a year right, or ask some sort
of hopeful question, and at that time I will often see clinicians
sort of back down and say you know, sure, that is something to hope
for, so I think it is really important to give a consistent and
compassionate message so that patients and families have time to
observe the information and certainly to have a follow-up with them
to see if they have any questions about the conversation.Lynch
When you have seen it done particularly well, what are some of the
things you have seen in that setting?Temel
 I think one of the most important things is just getting a sense
from patients about what they are hoping for.  I think as
clinicians we often think that the only thing that patients care
about is how long they have to live, but often when you sit down
with the patient and you ask them what they are hoping for, they
are hoping to get to their daughter's wedding, they are hoping to
get to their son's graduation, and I think as a clinician it helps
you make decisions about the patient's care if you have a sense of
what these goals and wishes are.  In addition, if you have a
strong concern that the patient will not be there for this major
event such as a wedding or graduation, it can be helpful, for
example, to have the patient make a video tape or write a letter so
that they can be there in spirit even if they are not there at that
time.Lynch
What I would like to do is talk in detail about your landmark study
which appeared in the New England Journal of Medicine about
treating patients with advanced lung cancer, but before we get to
that, just for the audience, I would like you to frame what it is
like to have metastatic lung cancer so that the audience can get a
sense of how patients experience this disease. So someone gets
diagnosed with metastatic lung cancer, they often go through some
treatment, can you tell us a little bit about what the treatment is
and what the natural course of disease is, so that when we talk
about your study, the audience will have some way of putting that
into perspective.Lynch
One of the most important things to know is that this patient
population is incredibly ill even when they are first diagnosed
with their disease, and they remain ill throughout the course of
their disease. Most patients when they are diagnosed with
metastatic lung cancer have symptoms such as fatigue or pain. 
In this patient population, they also have very high rates of
breathing symptoms12:25 into mp3 file 
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such as shortness of breath or cough.  When we give them
chemotherapy, which often has significant side effects such as
nausea or fatigue, sometimes these symptoms can get better but what
we know is when you are balancing the symptoms of cancer and the
side effects of chemotherapy, overall patients tend to not feel
significantly better when they are on treatment and many of these
symptoms persist throughout the course of their disease and often
in the months before someone actually passes away, the symptoms
actually get much more difficult to manage and that is when we
really need assistance from a specialized provider such as hospice
providers.Lynch
And does chemotherapy really help in advanced lung cancer, that's a
question I think a lot of families and patients ask.Temel
 Chemotherapy definitely helps patients live longer and to some
extent it makes them feel better.  Chemotherapy can certainly
improve symptoms related to cancer, so if someone has a mass that's
causing them pain and that mass shrinks from chemotherapy,
certainly that symptom will get better.  One thing that's
commonly talked about in oncology is something called quality of
life, how a patient feels as they are living with their
disease.  The impact of chemotherapy on quality of life is
actually less clear.  Again, chemotherapy improves symptoms,
but so many components or aspects of one's life contributes to
their quality of life such as their emotional functioning, their
spiritual and religious functioning, that overall chemotherapy does
not significantly improve.Lynch
Dr. Temel, we are going to talk more about that after the break.
 We are going to take a short break for a medical
minute.  Please stay tuned to learn more information about
advanced lung cancer with Dr. Jennifer Temel.Lynch          
 Welcome back to Yale Cancer Center Answers.  This is Dr. Tom
Lynch and I am joined by my guest Dr. Jennifer Temel and we are
discussing advanced lung cancer, particularly the role that
palliative care can play in advanced lung cancer.  Dr. Temel,
you are obviously the expert in the treatment of lung cancer, you
are someone who has been doing this for more than a decade in terms
of treating patients with advanced disease, what got you interested
in the role that palliative care can have in lung cancer?15:27 into mp3 file 
http://yalecancercenter.org/podcast/apr0311-cancer-answers-temel.mp3Temel          
 I think simply, I did not think as oncologists we were doing a
good enough job.  There were clearly areas where we could
improve care to lung cancer patient's both in their symptom
management and providing psychological support for symptoms of
depression and anxiety and also to do a better job educating
patients and families about the illness, the patient's prognosis,
and to help them make better decision about their care.Lynch
What exactly is palliative care?Temel
 Palliative care is multidisciplinary, what that means is, it
consist of doctors, nurses, chaplains, and social workers, so a
multidisciplinary team of clinicians whose goal is really to
improve the patient's quality of life.  These clinicians have
specialized training in symptom management, for example, they have
special training in how to manage pain, not just from cancer but
from any illness.  They also have specialized training and
help deal with distress or anxiety surrounding a serious illness,
and probably most importantly, the training that they have that is
very different from traditional oncology training is that they have
specialized training in talking to patients about their illness,
their prognosis, and helping them make decisions about their care
that are aligned with their goals and wishes for the future.Lynch
You had a landmark study in the New England Journal of Medicine
that was considered one of the most important breakthroughs in all
of medicine in 2010. Tell us a little about what brought you to
design that study and what you were seeking to learn from the
trial?Temel
 Traditionally, palliative care clinicians do not see people until
very close to the end of their life and often in the hospital. For
example, if someone is within days or weeks of dying and they have
issues with pain control or the family is having issues coping with
the patient's death, that is traditionally when palliative care
providers would be called in to see the patient.  My thinking
was a patient with metastatic lung cancer has a short life
expectancy, again in general, of less than a year and have an
incredibly high physical and emotional symptom burden, so my
thinking was why don't we have this team of clinicians, doctors,
and nurses, see patients earlier in the course of their disease, so
they can focus on their symptom management and support beginning at
the time of diagnosis, and hopefully have an impact in their
quality of life throughout the course of disease.Lynch
Was there resistance from your colleagues to having a second set of
doctors involved in the care of the patient?Temel
 There was some resistance, but only in the way that as oncologists
I think we put our heart and souls into our jobs. I think most
oncologists really care about their patients and do the best they
can and I think some oncologists were worried that adding another
clinician would take away from the patient-doctor bond that they
already had.Lynch
Tell us more about the design of your study, how was the study
designed? What questions was it designed to answer?18:33 into mp3 file 
http://yalecancercenter.org/podcast/apr0311-cancer-answers-temel.mp3Temel          
 As I mentioned, palliative care traditionally does not see people
until very close to the end of their life and so what our study was
looking at was asking these palliative care clinicians to start
seeing patients from the time of diagnosis and follow them along
with the oncologist throughout the course of their disease. 
The design of the study was what is called a randomized study, so
the patients were coin flipped into either the palliative care arm
or the standard care arm.  The patients who were randomized to
the early palliative care arm would receive the same standard high
quality oncology care that all the patients of Mass General get and
in addition to that they also saw the palliative care providers
periodically throughout the course of their illness.Lynch
What would they do when they saw the palliative care provider? Who
would they see and what would that palliative care provider do for
them?Temel
 As opposed to many types of intervention studies, the nature of
the palliative care visits were not scripted or prescribed, meaning
they it was not required, for example, in visit one to focus on
pain management, in visit two to discuss illness or prognosis, the
palliative care providers were given the freedom to see the
patients and evaluate them and focus on what seemed most important
to the patient. One of the main palliative care providers in the
study, Vicki Jackson, would say that sometimes she would go in with
an agenda to talk about coping or illness understanding, but the
patient was clearly very uncomfortable and in pain, so the focus of
the visit became pain.  Other times she would walk into the
room and expect to focus, for example, on fatigue because the last
couple of visits they were trying medication to improve the
patient's energy level, but she would open the door and the patient
would say "am I going to die," and clearly then the focus of that
visit was about helping the patient prepare for the end of
life.Lynch
Do you think that the patients talk to the palliative care provider
about different things then they might talk to you about?Temel
 As an oncologist that is a little bit hard for me to admit, but I
do think that is the case.  I think there are many very
companionate and sensitive oncologists, but no matter how wonderful
you are, how companionate you are, I think the patients view the
oncologist as holding the chemotherapy key and to some extent they
are afraid to be truly honest and open about all of the symptoms
that they are having or all of the distress that they are going
through. They want to put on a brave face and receive their cancer
treatment.  I do think that patients are a little bit more
willing and open about speaking more honestly with palliative care
providers.Lynch
In your trial, you had a group of patients that saw palliative care
doctors along with oncologists and a group of patients who just saw
their oncologist, what were the differences between the two groups
in the end?Temel
 We are very excited to see that there were marked differences in
many aspects of care in these patients.  First and foremost,
the patients receiving early palliative care had marked
improvements in their quality of life, meaning they felt better,
they were able to be with their family more, they21:36 into mp3 file 
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were able to be more functional.  We also saw marked
differences in rates of depression.  The patients receiving
early palliative care were significantly less likely to be
depressed compared to the patients receiving standard oncology
care.Lynch
Why do you think that was?Temel
 One thing we know is that it was not from more
antidepressants.  In addition, antidepressants do not seem to
be as useful for depression in cancer as for example in other
illnesses.  So it does seem like again, just having that team
of doctors and nurses available to talk to the patients about their
wishes, their fears, maybe patients felt more prepared for what was
going to happen and their mood was just overall better.Lynch
In addition to the improvement in quality of life and the reduction
in the rate of depression, my understanding is you also showed that
there was a survival benefit, patients actually lived longer who
were seen by a palliative care team?Temel
 Surprisingly, we did see a survival advantage. When we initially
designed the study, we planned to follow patients throughout the
course of their disease and look at the survival rates more because
we thought there might be oncologists or other clinicians out there
who would think that having palliative care involved in patients
would actually lead them to receive less aggressive care throughout
the course of their disease and potentially be worried that the
survival would be lower, but in fact, what we saw was the
opposite.  The patients receiving early palliative care had
about a 2-1/2 month survival advantage compared to the patients
receiving standard care.Lynch
Just for the listeners, can you put that into perspective compared
to what chemotherapy does for patients with advanced lung
cancer?Temel
 In general about a two month survival advantage is what we discuss
with patients when we are giving them chemotherapy, so for example,
if you have a thousand patients who had newly diagnosed metastatic
lung cancer and half of them received no chemotherapy and half of
them received chemotherapy, the patients who received chemotherapy
would live about two months longer, so the survival difference that
we saw in our study is about the same magnitude of benefit that you
would see with chemotherapy.Lynch
Also one of the things I found most interesting about your study is
the idea that talking to patients about death or talking to
patients about end of life did not seem to shorten their survival,
if anything it lengthened their survival, why do you think that
was?Temel
 It is not completely clear at this point what led to the survival
advantage, I think there are many things that could have
contributed to it.  We said a moment ago that patients
receiving early palliative care had better quality of life and
lower rates of depression and we certainly know that in many
advanced cancer populations, if you have a better quality of life,
if you have a better mood,24:24 into mp3 file 
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you also live longer.  One other thing that we showed is that
patients received less aggressive care at the end of life.  So
they were less likely to receive chemotherapy at the very end of
life and were more likely to be on hospice for longer and I also
think that those events contributed to them living longer with
their disease.Lynch
Just recently the Center for Medicare and Medicaid Services was
considering this year's Bill of Services for Medicare recipients
and they initially had wanted to include end of life counseling as
a covered service that a physician could provide to a
patient.  In the end, because of political opposition to that
the decision, it was not included as a covered service, why do you
think there is political opposition to that principal?Temel
 First of all I should say that I think that if that had gone
forward that would have been a wonderful paradigm changing
practice.  As I said earlier, I think conversations about
prognosis and about decisions at the end of life are incredibly
time consuming, and I think it is very hard to do it in less than
an hour in many cases.  So I do think having the healthcare
system support these conversations and allowing reimbursement for
them would have been an important change to our healthcare
system.  I think the nation is afraid of dying.  Often
when we talk about cancer, we are not having conversations like you
and I are today, we are only focusing on finding the cure, finding
the next best treatment and in general people in the United States
do not want to have conversations about the end of life.  I
think it is really a fear of recognizing death and dying that leads
people to not be willing to support these types of initiatives.Lynch
Where do we go next with your work? You have shown that at a single
hospital and in a single disease that early palliative care makes a
difference.  As you consider next options with your research,
where you are planning on going and what questions are you thinking
of asking next?Temel
 You are making a very important point, we were very excited about
the results that we found; however, it was done in just a single
institution at Massachusetts General Hospital and in a single
patient population.  So before we think about, for example,
disseminating this model to other care centers or other hospitals,
we need to do a little bit more work and figure out what are the
key components of palliative care, what can be exported to other
care centers, does it have to be by a palliative care provider, and
can it be done by nurse or nurse practitioners? So the next step is
to try to hone down exactly what the key components of the
intervention were and also to see if the findings will be
reproducible in other cancers, for example, pancreatic cancer and
breast cancer.Lynch
Do you think that the role that the palliative care provider played
at Mass General, in other circumstances, may be played by an
internist or a family practitioner, perhaps in a more rural
environment where advanced palliative care may not be
available? Do you think that there are other caregivers who could
provide that or play that same role that the palliative care team
played in your study?Temel
 I definitely think that is true, I think even in major academic
institutions like at here or MGH, there27:49 into mp3 file 
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 are many primary care physicians and internal medicine clinicians
that want to serve that role to cancer patients.  I think a
big part of this is relationship building.  At Mass General,
the lung cancer team has been working with the palliative care team
on this type of research for over a decade, so we have a
significant amount of experience co-managing patients, sharing the
team, sharing how to manage their experience with their cancer, and
so I think in other care settings if oncologists could team up with
other care providers, develop relationships, figure out how to
navigate these roles, that can also have a big impact on the cancer
patient's experience.Lynch
And do you see nurse practitioners possibly performing this
role?Temel
 Definitely, right now, although palliative care is a growing
specialty, there are still many areas that do not have palliative
care providers.  I also think nurse practitioners in general
do have a different role than, for example, physicians. They are
more focused on symptom management, and often have more time to
have conversations with the patients about their illness and
prognosis.  In our study, we had several nurse practitioners
participate in the palliative care intervention, so again thinking
about nurses and nurse practitioners doing this kind of work is an
incredibly exciting endeavor.Lynch
And the last question, I suspect is on our audience's mind, is you
have accomplished a tremendous amount in the last ten years looking
at this question, but it is also something which I think could
certainly take a big personal toll talking to patients about death
and talking to patients about end of life.  Do you enjoy your
work and how do you find the ability to keep going, despite having
lots of difficult discussions with patients?Temel
 Yes, I love what I do.  I love taking care of lung cancer
patients.  It is sad for me when my patients die.  In
addition, after the patient dies, we also do not see their family
members anymore and I think those of us who take care of patient
populations like lung cancer also become very close to the
families.  I guess how I get through it emotionally is
unfortunately, the patient is going to die whether I take care of
them or not, but I feel like because I am taking care of them, they
have a better experience with their cancer, they get more support
and more care so it makes me more able to get through the day.Dr. Jennifer Temel is Assistant Professor of Medical
Oncology and Hematology at Massachusetts General Hospital. 
Dr. Thomas Lynch is Director of Yale Cancer Center and
Physician-in-Chief of Smilow Cancer Hospital.  If you have
questions or would like to share your comments, visit yalecancercenter.org,
where you can also subscribe to our podcast and find written
transcripts of past programs.  I am Bruce Barber and you are
listening to the WNPR Health Forum on the Connecticut Public
Broadcasting Network.