Helping Your Loved One During Advanced Cancer
Making Decisions Together
Understanding Your Loved One's Wishes
Palliative Care
Palliative Radiation, Chemotherapy, or Surgery
Hospice Care
What to Expect with Hospice Care
Home Care
"My husband has been
fighting cancer for a long
time. Now that the cancer
is progressing, I'm learning
that his needs are changing,
and so are mine. We're
facing new issues, and it's
hard."
- Vera
Your loved one may be struggling with advanced
cancer or with a cancer recurrence. Doctors may be
saying that the cancer is not responding to treatment.
You may have been told that long-term remission is
not likely. Or your loved one may have decided to
discontinue treatment and live out his or her days to
the fullest.
This may be a time when new decisions need to be
made. Shifts in care may be needed or may already be
taking place. The burden of helping make these
decisions may seem much heavier than it used to be.
These choices often come with many emotions, such as
sadness, anger, and the fear of the unknown. They may
also come with questions about how much longer he or
she will live.
Thinking or talking about these issues may feel like
you are giving up. But you aren't. It doesn't mean giving up hope. People usually cope better when
they have different options. Having information about how to deal with tough situations will help.
Your friend or family member still deserves good medical care and support from the health care
team even if the treatment changes.
"I guess some people don't
want a lot of information
because they feel they can't
handle what the possibilities
are. But I don't think you
can really make a good
decision without knowing
everything. We had to ask a
lot of questions, though,
because we didn't know all
our options."
- Beth
You may have been caring for the cancer patient for
a short or a long time. Most likely, you will be very
involved in helping make choices about next steps
for care. Some of these choices may include:
- Treatment goals
- When to use hospice care
- Financial decisions
- How to get support from family members
When dealing with advanced cancer, people have different goals for their care. Some want to keep
following more aggressive treatments. Others decide to choose alternative paths for care or let
nature take its course. You may wonder: "Have we done everything possible to treat the cancer, or
should we try another treatment?" It's natural to want to do all you can, but you should weigh
these feelings against the positives and negatives for your loved one.
"You really want to know if
the cure is worse than the
illness. We've come to ask
the question, what's the
quality of life after this?
Is it worth being sick for
2 months if he's only got
6 months to live?"
- Dan
Questions to ask:
- What's the best we can hope for by trying
another treatment?
- Is this treatment meant to ease side effects,
slow the spread of cancer, or both?
- Is there a chance that a new treatment will
be found while we try the old one?
- What are the possible side effects and
other downsides of the treatment? How
likely are they?
- Are the possible rewards bigger than the
possible drawbacks?
Asking these questions may help the patient decide
whether to continue or begin more treatment. It's best to work together on this process. It will
help you figure out both of your needs and the needs of others close to you.
It is important to ask your health care team what to expect in the future. And it's important to be
clear with them about how much information you and the patient want from them.
"I think some people,
like me, want to know
everything. I want no
surprises. My husband
doesn't want to know
anything. We struggle with
this issue."
- Shirelle
For many families, it is important that your loved one be in charge of making decisions. But in
some families and cultures, it's common for the caregiver to make many of the decisions. And they
may make them with or without the patient knowing. Or sometimes the patient wants the caregiver
to make all the decisions. This may be hard for many reasons:
- Your own stress may make it hard to decide.
- Your ideas about how to move forward may differ from the ideas of others.
- The patient may be less able to take in new facts.
- Other family members' beliefs may differ from the patient's.
- The opinions of your health care team may differ from your loved one's or yours.
There may also come a time when you have to make
decisions for your loved one because he can't
anymore. It's important to get a sense of how he feels
about this before it happens. How would he like to
deal with it? This may mean letting go of some
opinions that you have about treatment. (For
example, you may want to keep your loved one alive,
whatever it takes. But he may wish to stop receiving
life-sustaining measures at a certain point.) Try to
keep things in perspective by looking at the facts.
All patients have a right to comfort and quality of life throughout their care. This kind of care is
often called
palliative care.
It includes treating or preventing cancer symptoms and side effects
caused by treatment. Comfort care can also mean getting help with emotional and spiritual
problems during and after cancer treatment. Sometimes patients don't want to tell the doctor
about their symptoms. They only want to focus on the cancer. Yet they can improve their quality of
life with palliative care.
People once thought of palliative care as a way to comfort
those dying of cancer. Doctors now offer this care to all
cancer patients, beginning when the cancer is diagnosed.
Palliative care can go on through treatment, survival,
advanced disease, and the time when treatment no longer
controls the cancer. Members of the health care team
may be able to help. But a palliative care specialist may be
the best person to treat some problems. Ask the doctor or
nurse if there is a specialist your loved one can see.
"We have got to let
patients and their family
members truly understand
that if they choose not to
do chemo or some other
aggressive therapy, there
are other options where
they will receive support,
comfort care, and
assistance from the
health care team."
- Joshua, oncologist
There are a number of options for your loved one's care.
These depend on the type of cancer and the patient's
goals for care. These options include:
- Clinical trials (research studies)
- Palliative radiation, chemotherapy, or surgery
- Hospice care
- Home care
Many patients choose more than one option. Your loved one should base her decision on the risks
and benefits of available treatments as well as her own feelings about life and death. You should
both ask all the questions you need to. If she chooses not to get any more active cancer treatment, it
does not necessarily mean a quick decline and death. It also does not mean she will stop receiving
palliative care. The health care team can offer information and advice on treatment options.
Clinical trials are research studies that try to find better ways to treat cancer. Every day, cancer
researchers learn more about treatment options from clinical trials.
The trial your loved one may choose will depend on the type of cancer he has. It will also depend
on what treatments he has already had. Each study has rules about who can take part. These rules
may include the patient's age, health, and type of cancer.
Clinical trials have both benefits and risks. Your doctor and the study doctors should fully explain
these before any decisions are made.
Taking part in a clinical trial could help your loved one, and also help others who get cancer in
the future. But insurance and managed care plans do not always cover costs. What they cover
varies by plan and by study. Talk with the health care team to learn more about coverage for
clinical trials.
For more information about clinical trials, see NCI's booklet, If You Have Cancer: What You Should
Know About Clinical Trials.
Some palliative radiation and palliative chemotherapy may help relieve pain and other symptoms.
In this way, they may improve a person's quality of life even if they don't slow the cancer. These
treatments may be given to remove or shrink
a tumor. Or they may be given to slow down a
tumor's spread. Palliative surgery is
sometimes used to relieve pain and other
symptoms. For more information, see the
NCI booklets, Chemotherapy and You and
Radiation Therapy and You (see inside cover).
"I can't say enough about
our hospice nurse. We don't
need her all the time yet,
but she's here if we need
help. She comes by or calls
us to see if there's anything
she can do. She's been a
great source of comfort."
- Gayle
Hospice care is an option if you and your loved one feel
there is no longer a benefit from cancer treatments.
Choosing hospice care doesn't mean that you've given
up. It means that the treatment goals are different now.
It does not mean giving up hope, but rather changing
what you hope for.
The goal of hospice is to help patients live each day to
the fullest by making them comfortable and as symptom free
as possible. Hospice doctors, nurses, chaplains,
social workers, and volunteers are specially trained. They
are dedicated to supporting their patients' and families'
emotional, social, and spiritual needs, as well as dealing
with patients' medical symptoms.
Many people don't realize that hospice can provide
support for more than a few weeks. As a result, many caregivers have said that they didn't look into
hospice as early as they could have. Later, they wished they had gotten hospice involved sooner in
the care process. They were surprised by the expert care and understanding that they got. Often,
control of symptoms not only improves quality of life but also helps people live longer. Check with
the hospice you are thinking of using to learn what treatments and services are covered. Also
check with your loved one's insurance company to see what it will cover.
People usually qualify for hospice services when their doctor signs a statement that says that
patients with their type and stage of disease, on average, aren't likely to survive beyond 6 months.
Patients will be reviewed periodically to see whether hospice care is still right for them. Services
may include:
- Doctor services (The patient may still keep his own doctors, too.)
- Nursing care
- Medical supplies and equipment
- Drugs for managing cancer-related symptoms and pain
- Short-term inpatient care
- Homemaker and home health aide services
- Respite (RES-pit) services to give you a break from caring for your loved one
- Counseling
- Social work services
- Spiritual care
- Bereavement (grief) counseling and support
- Volunteer services
"I wish I'd found
out more about
hospice care. But
you don't know
what you need at
the beginning."
- Bruce
People can get hospice services at home, in special
facilities, in hospitals, and in nursing homes, where there
are specialists to help guide care. They also have visits by
nursing assistants, social workers, and chaplains, as well as
nurses on call 24 hours a
day in case you need advice.
And they have many
volunteers who help families
care for their loved one.
Some hospices will give
palliative chemotherapy at
home as well. Hospice care
doesn't seek to treat cancer.
But it does treat curable
problems with brief hospital
stays if needed. An example
might be pneumonia or a
bladder infection.
Medicare, Medicaid, and most private insurance
companies cover hospice services. For those without
coverage and in financial need, many hospices provide
care for free. To learn more about hospice care, call the
National Hospice and Palliative Care Organization at
1-800-658-8898. Or visit the Web site at
www.nhpco.org
to find a hospice in your community.
Home care services may treat the cancer itself, not just
the symptoms. This is for people who get treated at
home rather than in a hospital. If the patient qualifies
for home care services, they may include:
- Managing symptoms
- Monitoring care
- Physical and other therapies
- Providing medical equipment
Your loved one may have to pay for home care services.
Check with your insurance company. Medicare,
Medicaid, and private insurance companies will
sometimes cover home care services when ordered by
the doctor. But some rules apply. So talk to a social
worker and other members of the health care team to
find out more about home care.
No One Knows the Future |
It's normal for people to want to
know how long their loved one will
have to live. It's also natural to
want to prepare for what lies
ahead. You may want to prepare
emotionally too, as well as make
certain arrangements and plans.
But predicting how long someone
will live is not exact. The doctor
has to take into account the type of
cancer, treatment, past illnesses,
and other factors. Your loved one's
doctor may be able to give you an
estimate. But keep in mind that it's
a guess. Every patient is different.
Some patients live long past the
time the doctor first predicted.
Others live a shorter time. Also,
an infection or other complication
could happen and change things.
Your loved one's doctor may know
the situation best. But even the
doctor can't know the answer for
sure. And doctors don't always
feel comfortable trying to predict
how long someone will live.
In truth, none of us knows when we
are going to die. Unexpected events
happen every day. The best we can
do is try to live fully and for today.
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