The Problem With Pain

Attribution: Ferris, FD. The Problem with Pain. 2022. ISBN: 978-1-945872-07-5. In Ferris FD, Gustin J, Humphrey L (eds). Palliative
Care Interdisciplinary Curriculum. Copyright © 2022 Frank D Ferris. PCIC ISBN: 978-0-9884318-1-2.
Permission to Use, Reproduce or Adapt any presentations and other content within the Palliative Care Interdisciplinary Curriculum
(PCIC) is granted for non-commercial educational purposes only, provided that the above attribution statement and copyright are
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programs using any part of the PCIC Curriculum, must only do so with written permission from Drs. Frank D. Ferris, Jillian Gustin or
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Acknowledgements: The Principals of the Palliative Care Interdisciplinary Curriculum gratefully acknowledge the support of Award
Number R25CA134309 from the National Cancer Institute, the Host Institutions and Private Donors. The content is solely the
responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute, the National
Institutes of Health, the Host Institutions, or the Donors. Acknowledgment and appreciation are extended to faculty and staff of
OhioHealth, The Ohio State University Wexner Medical Center, Nationwide Children’s Hospital, the OhioHealth Research &
Innovation Institute, the Institute for Palliative Medicine at San Diego Hospice and the consultants who provided the inspiration and
assisted in the development of this curriculum.

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 The Problem With Pain
Hi, I'm Frank Ferris and I want to talk about the problem with pain. Have you ever had pain?
Do you have a sense of what it feels like to have acute or maybe chronic ongoing pain?

I suspect most of us are in fact healthy.

We have the capacity to do the things
we would like to be able to do, things
that give us meaning, value, and quality
in our lives. I certainly enjoy that from
day to day. I bet you do as well. We rely
on our health but what happens if we
get an advancing illness, what happens
if we have ongoing pain? Are we now
incapacitated? It can be a real problem.

You and I as healthcare workers, our

responsibility is to help people living with
advanced disease processes to not only
live longer and diminish the disease but
also to manage the experience. How can
we help people have the capacity to do
the things they want to do even when
their illness is advancing. That's our job.
Eloquently, Moonshine Movies captures
the real issues around the problem with pain. Let's watch.
(Dr. Liz Gwyther) The real problem with
pain is how it diminishes a person's life,
that your focus is just on the pain. It
impacts on a person's autonomy. You
actually cannot be a thinking, decision-
making human being if you are just in
pain and patients have described that
they would do anything at all to be
relieved of pain.
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What is Pain?
(Pain Specialist Professor Michael Cousins) Pain is an unpleasant sensory and emotional
experience associated with actual or potential tissue damage or described in terms of such
damage. Now that's a very complex definition.
(Pain Specialist Dr. Kathleen Foley) The language of pain is very complicated.
(Pain Specialist Professor Michael Cousins) You'll note that it's a sensory and emotional
experience.
(Pain Specialist Dr. Kathleen Foley) When we're talking with a patient and particularly when
we're talking with a patient whom we're trying to treat, we need to have some common
language.
(Doctor Interviewing Patient) Has the pain mainly been the headaches and the head pain or
has it been elsewhere? Is it there all the time?
(Cancer Patient Bob) Yeah, you wake up sometimes and think, "Ah, it's gone." You turn around
twice and it's not gone.
(Professor Michael Cousins) Many patients are now treated as if the problem is either a
sensory one, in other words, it's either physical or it's all in your brain. When they get the
message that it's all in your brain or all in your mind, they know they're being dismissed. Well,
all pain is in the brain and in the mind, so that's a very silly way to approach people and yet it's
still going on very much.
(Cancer Patient Bernard) You just imagine, when you open your eyes in the morning, there's
nothing but pain. When you sleep, there's nothing but pain. What kind of quality of life?
There are two types of pain, one is physical pain, the other one is emotional pain. Now
physical pain, whether it's a result of accident, illness, it's something that you cannot deal with
yourself. I tried to deal with it myself but the more I struggled, the deeper I went down.
(Sickle Cell Patient Teena) I have pain every day in my knees and my legs. My knees and in my
lower back, I have pain every day just from the sickle cell. But then there's a level that when
you get to a crisis, that's when it's just with your heartbeat just a throbbing, searing bad pain.
(Pain Specialist Dr. Jay Thomas) We typically ask patients what level of pain they're having on a
zero to ten scale, where zero is no pain and ten is the worst kind of pain that they could ever
have. And of course, different people will say different levels of pain for the exact same
noxious or unpleasant stimulus. But typically, people say the same numbers for themselves,
and so we look to see whether the numbers are worsening or improving.
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(Sickle Cell Patient Teena) Right now, my pain is at four. But when it gets to about an eight or a
nine, then that's a level that I can't control anymore even with my medicines here or the
medicines that the doctors give me. That's a pain level that I can't control anymore.
(Palliative Care Activist Mary Callaway) I think one of the most important concepts that we can
teach young doctors and nurses is to believe what the patient says. If the patient says he's in
pain, the patient is in pain and then you have to figure out a way to measure it ̶ and we know
how to measure it ̶ and track it over time.
(Pain Specialist Dr. Jim Cleary) It's one of the real problems we have with pain that you can't
tell me how much pain I have today because it's “my” experience of the sensation.
(Palliative Care Activist Liliana De Lima) Pain is whatever the patient says.
(Pain Specialist Dr. Jay Thomas) Pain is subjective. It's whatever they believe it to be.
(Pain Specialist Dr. Kathleen Foley ) It is very much what the patient says it is.

Now we've heard about how pain can

really diminish a person's life.
The International Association for the
Study of Pain, IASP, has developed this
simple definition, pain is "an unpleasant
sensory and emotional experience
associated with actual or potential tissue
damage."

Margo McCaffery, one of the pioneers in

oncology nursing said very simply, "Pain
is whatever the experiencing person says
it is, existing whenever the experiencing
person says it does."

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We can think about pain as acute and
chronic. We also think about it and we'll
be talking in more detail in our
Pathophysiology presentation about
different types of pain whether it's
nociceptive, mediated by inflammation,
neuropathic, or even mixed pain.

What's important is to recognize, yes,

there's acute pain, pain that starts
suddenly, usually with an identifiable
cause, typically is relatively shorter in
duration; if it's movement, it's probably
seconds to minutes; if it's trauma, such
as we hit our finger or we touch the
stove, it's probably minutes to hours; if
we break a bone, it's hours to days to
weeks; and of course, there's the post-operative situation where hopefully it resolves quickly.
Typically with acute pain we see a sympathetic response.

Contrast that with what we're going to

spend a lot of time talking about in this
series, chronic pain, pain that by
definition persists for more than three
months and creates real functional
impairment. It could be from cancer,
could be the result of surgery or trauma,
could be the result of damage to the
nerves themselves, peripherally or
centrally-- what we call neuropathy. Of
course, there's persistent headaches or a facial pain, visceral pain, and musculoskeletal pain.

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Typically, we don't necessarily find an identifiable cause and typically, there's no sympathetic
response. Many times when you look at the patient you're not sure they have pain but it has a
huge impact, it's a real problem for these folks.

When we start to look at chronic pain

and its impact, and I think this is very
important for you and I, as providers, to
think about and assess, it decreases
movement; it changes people's ability to
concentrate and think, they're focused
on their pain; they don't have as much
appetite, they sometimes even have
marked anorexia; they're not sleeping
well, they may have significant insomnia; and their mood may be decreased, they're kind of
flat, even depressed, and some are withdrawn. Those are the direct effects, what does that do
to their life?
What we get to see as patients with chronic pain often aren't able to work, they certainly
aren't experiencing pleasure, their emotions go up and down and they're associated with lots
of tensions, tensions can occur in their relationships, they often become dependent, needing
care, whether it's short or long-term, and pain with all these sequelae may actually shorten
their lives.
Imagine that's you. Is that what you would want for yourself?

Now, you might say, "Oh, well that hasn't

happened to me." Well, what's
interesting is it's happening today based
on a study reviewing the situation in
2016, it's happening today in the United
States to 20% of our population. About 50
million people live with chronic pain. And
what's called "high-impact chronic pain,"
pain that actually limits life or work
activities most or every day over the past six months is occurring for almost 10% of people in
America, some 20 million people. Wow, this is huge.

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 As we start to look at the older
population, we see 52% of adults over
the age 65 have chronic pain and as they
age, the prevalence increases. That's
18.7 million older adults in the United
States as of 2011 and it's probably
greater today, as more people are aging,
have chronic pain of real significance.
Aren't you looking forward to aging?
Well, now let's focus on individual illnesses.

We know that pain in cancer is

significant. Again, another study
reviewing the situation recently in 2016
showed that even during treatment, 55%
of people have pain from their primary
disease. After curative treatment, 39% of
people continued to have pain and as the
disease advances and becomes
metastatic or terminal, as many as 66% of
people have pain, and of the whole group, 38% of patients had moderate to severe pain
described as pain with a severity score of five or more on a ten-point scale.
This is huge. Imagine we've said that the treatment is going to cure the cancer but afterwards
almost 40% of survivors still have pain ̶ didn't do a good job did it, of getting rid of the pain?

Now, if we look at other diseases, in fact,

liver disease is the smallest, as you can
see. Surprised? More than 40% of
patients, almost 50% with dementia have
pain; congestive heart failure, 50% and
some studies suggest as high as 85% of
patients have pain; end-stage renal
disease on hemodialysis, 90% of
patients; and rheumatoid arthritis, 90%
of patients said it was the most important issue for them impacting their lives.

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Goodness, how many of us are going to die with these conditions as part of our advancing age
experience? We need to really pay attention and we need people with all specialties who
know how to manage pain.

And, we can start to look at cost and the

impact in America, we see that actually
more than 20% of healthcare encounters
are for pain-related problems. It's costing
Americans ̶ and the latest data was 2010 ̶
anywhere up to 635 billion dollars to
provide healthcare related to pain
management, greater than the cost of
caring for patients with heart disease,
cancer, and diabetes. This is huge.
As we look at individuals with pain, we
see that they cost more per annum up to
300 dollars more because we're
managing their pain compared to
patients without pain. As we look at lost
productivity, simply an estimate that
we're losing as productivity measures, up
to 335 billion dollars because of lost
opportunity. It's huge. Pain is a major
problem in our society.

People all around us have bad pain

experiences and someday, it's probably
going to be your turn. How would you like
your pain to go untreated, under-treated
so that you lose capacity, you become
dependent?
I suspect each one of us needs to become
an advocate because this isn't what we
want and the people we train, guess what,
they're going to look after you when it's your turn. Let's do a great job of today incorporating

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effective strategies to manage pain into our global healthcare system. I look forward to
walking with you.

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