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Working with the Health Care Team
Asking About Pain
Asking About Other Changes
General Tips for Meeting with the Health Care Team
Your situation may be changing a lot now. It's very important to keep asking questions. Some
caregivers feel that they were given a lot of information early on, but not as much later. And all the
unknowns of the different care and treatment options can be stressful.
It's important for you and your loved one to sit down with the health care team. You need to talk
about future steps and what to expect. You may be afraid of what you might hear. But other
caregivers have said that they felt reassured after learning their options. It made them able to
plan ahead.
Some people with cancer want to know everything. Others let their caregivers make the decisions.
Sometimes these differences are cultural. Other times they are personal. The patient, your family,
and you should decide who will be the primary contact for the health care team.
"It can be hard for me as a
doctor, because many times
I see patients who want to
know everything. And then I
have caregivers who don't
want me to tell the patient
everything. Yet the reality is
that the patients know their
bodies--they know what's
going on. So sometimes I get
a situation where everyone
knows the truth but tries to
keep it from the other person
to protect them."
- Nicole, oncologist
Caregivers often worry about their loved one being
in pain. People who have their pain managed are
able to focus on enjoying life. If they are
preoccupied by pain, you may notice changes in
their personality, such as being distant, not being
able to sleep, or not being able to focus on daily
activities they once enjoyed.
Your loved one does not have to be in pain or in
any discomfort. Some people assume that there will
always be severe pain with cancer treatment. This
is not true. Pain can be managed throughout
treatment. The key is to talk regularly with the health
care team about pain and other symptoms. You may
want to ask if there is a pain specialist on staff as well.
The medical team should ask about pain levels, but
it's up to you and the patient to be open about any
pain she is having. Sometimes people with cancer
don't want to talk to the health care team about their
pain. They worry that others will think that they are
complaining or that pain means the cancer is getting
worse. Or they think that pain is just something they
have to accept. Sometimes people get so used to
pain, they forget what it's like to live without it.
This is when it is important for you to encourage her to
speak up. Or you can speak up for her. Be honest with
the doctor about pain and how it is affecting her routine.
It may take more than one talk to feel comfortable about
the pain medicines given. Some caregivers worry that
they will give their loved one too much medicine. This
rarely happens, but it's important for you to talk to the
doctor about your fears and concerns.
Talk with the health care team about how to keep your
loved one as comfortable as possible. Make sure to
include any hospice staff you may have. There are
drugs that can help treat pain. These drugs can also be
adjusted or changed if they aren't working or have
unpleasant side effects.
Don't be afraid to ask for stronger pain relievers or
larger doses if the patient needs them. Addiction is not
an issue in people with cancer. Instead, they will help
your loved one stay as comfortable as possible.
| Your Loved One's Eating |
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It's okay to offer your loved one
food, but try not to pressure them
to eat. We often think of eating
well as bringing good health. But
when people have advanced
cancer, they may not have an
appetite. Also, their bodies may
need less food than in the past.
Or, some people find it easier to
eat smaller portions more often,
rather than three meals a day.
Although giving food may be a
way you feel you can nurture
your loved one, it's important for
you to try not to force him to eat.
There are a lot of changes going
on in the body, and he needs to
decide when he is hungry. Trust
that he knows what is best for his
body. If you are worried that your
loved one is not eating enough or
eating properly, ask the doctor or
nurse for an opinion.
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"No one told us what
steroids would do. My
partner started to have
mood swings all of a
sudden. She'd get really
angry at me for no reason.
Her nurse told me this was
common when taking these
drugs, but how was I
supposed to know that?"
- Pat
Sometimes, as treatment continues, changes may take place in the person with cancer. They may
be due to the side effects of treatment or the cancer itself. Or they may be caused by other drugs.
Some caregivers have said that they wished they had known about these changes sooner. They
wished they had known what to expect.
Changes may occur in:
- Looks
- Personality or mood
- Memory
- Sleep
- Appetite or nutrition needs
The person you are caring for may or may not go
through any of these changes. But you should ask the
doctor whether you need to be aware of them. At the
same time, ask what you can do about them if they
happen. This way you will know that these changes
are normal, and you can be prepared.
Some caregivers who have lost their loved one say
they wished they had known the signs that death is
near. They say this would have helped them be less
afraid or worried. A list of the most common signs is
provided in "Signs That Death Is Near".
"I remember in the early
days my mom had a lot of
depression, and I thought it
was her illness. But it
wasn't--it was the drugs.
If I had known about that
earlier, I could have dealt
with it a lot better."
- Tia
If you are going with the patient to medical visits, here are
some general tips for meeting with the health care team:
- Make a list of questions before each appointment.
- Take notes. Or ask the doctor if it's okay to use a
tape recorder.
- Get a phone number of someone to call with
follow-up questions.
- Keep a file or notebook of all the papers and test
results. Make sure it's taken to medical visits.
- Keep records or a diary of all the visits. List the
drugs and tests your loved one has taken.
- Keep a record of any upsetting symptoms or side
effects. Note when and where they occur.
- Find out what to do in an emergency. This includes
who to call, how to reach them, and where to go.
| Know Your Rights |
| People can refuse treatment
at any time. In some states,
doctors also have the right to
stop aggressive treatment
that they don't think is
working. If your loved one
will be in the hospital, make
sure that her wishes are
clear to you and to hospital
staff. You want the staff to
know any measures she
wants or doesn't want taken
if her condition changes.
Sometimes this information
is not in a patient's chart.
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