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Making Choices About Care
Comfort Care
Your Choices
Clinical Trials
Palliative Radiation, Chemotherapy, or Surgery
Hospice
Home Care
"There's a part of me that wants to
keep fighting and try a clinical trial;
the other part wants to stop
fighting. I'm just so tired of it all.
Yet I can't help wondering if there
are other options."
- John
People have different goals for care when dealing with
advanced cancer. And your goals for care may be changing.
Perhaps you had been hoping for a remission. Yet now you
need to think more about controlling the spread or growth
of the cancer. Your decisions about treatment will be very
personal. You will want to seek the help of your loved ones
and health care providers. But only you can decide what to
do. Your desire to avoid future regrets should be measured
against the positives and negatives of treatment.
Questions you may want to ask:
- What's the best we can hope for by trying another
treatment? What is the goal?
- Is this treatment plan meant to help 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's the most likely result of trying this treatment?
- 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?
It is important to ask your health care team what to expect in
the future. It's also important to be clear with them about
how much information you want to receive from them.
You have a right to comfort care both during and after
treatment. This kind of care is often called
palliative care.
It includes treating or preventing cancer symptoms and the
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 you can improve your quality of life
with comfort 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.
You should receive palliative care through treatment,
survival, and advanced disease. Your
oncologist
may be able
to help you. But a palliative care specialist may be the best
person to treat some problems. Ask your doctor or nurse if
there is a specialist you can go to.
"I know that just because
I have stage-4 cancer doesn't
mean I'm going to die
tomorrow. My friend has
lived a long time with her
advanced cancer."
- Li
You have a number of options for your care. These depend
on the type of cancer you have and the goals you have for
your care. Your health care team should tell you about any
procedures and treatments available, as well as the benefits
and risks of those treatments. Options include:
- Clinical trials
- Palliative radiation, chemotherapy, or surgery
- Hospice care
- Home care
Many patients choose more than one option. Ask all the
questions you need to.
Try to base your decision on your own feelings about life and
death, and the pros and cons of cancer treatment. If you
choose not to receive any more active cancer treatment, it
does not necessarily mean a quick decline and death. It also
does not mean you will stop being given palliative care. Your
health care team can offer information and advice on
options. You also may want to talk about these options with
family members and others who are close to you.
Treatment
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
different types of clinical trials are:
- Phase 1 trials test how to give a drug, how often it
should be given, and what dose is safe. Usually, only a
small number of patients take part.
- Phase 2 trials discover how cancer responds to a new
drug treatment. More patients take part.
- Phase 3 trials compare an accepted cancer treatment
(standard treatment) with a new treatment that
researchers hope is better. More treatment centers
and patients take part.
If you decide to try a clinical trial, the trial you choose will
depend on the type of cancer you have. It will also depend
on the treatments you have already received. 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 tell you about these before you make any decisions.
Taking part in a clinical trial could help you and 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 your health care team to learn
more about coverage for clinical trials for your type of cancer.
For more information about clinical trials, see NCI's booklet,
Taking Part in Clinical Trials: What Cancer Patients Need to
Know. Or talk to the NCI's Cancer Information Service at
1-800-422-6237 (1-800-4-CANCER).
Some palliative chemotherapy
and
palliative radiation
may
help relieve pain and other symptoms. In this way, they may
improve your quality of life even if they don't stop your
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 or other problems.
For more information, see the NCI booklets
Chemotherapy
and You and
Radiation Therapy and You.
Hospice care
is an option if you feel you are no longer
benefiting from cancer treatments. Choosing hospice care
doesn't mean that you've given up. It just means the
treatment goals are different at this point. It does not mean
giving up hope, but rather changing what you hope for. But
be sure to check with the hospice you use to learn what
treatments and services are covered. Check with your
insurance company also.
The goal of hospice is to help patients live each day to
the fullest by making them comfortable and lessen their
symptoms. Hospice doctors, nurses, spiritual leaders, 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.
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. Many people don't realize that they can use hospice
services for a number of months, not just a few weeks. In
fact, many say they wish they had gotten hospice care much
sooner than they did. 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. You will be reviewed periodically to see if hospice
care is still right for you. Services may include:
- Doctor services (You may still keep your own
doctors, too.)
- Nursing care
- Medical supplies and equipment
- Drugs to manage cancer-related symptoms and pain
- Short-term in-patient care
- Homemaker and home health aide services
- Respite (relief) services for caregivers. This means
someone else helps with care for awhile, so the
caregiver can take a break
- Counseling
- Social work services
- Spiritual care
- Bereavement (grief) counseling and support
- Volunteer services
| What to Expect With Hospice Care |
| You can get hospice services at home, in special facilities, in
hospitals, and in nursing homes. They have specialists to
help guide care. They also have 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 reversible problems with brief hospital stays if needed.
An example might be pneumonia or a bladder infection.
Medicare, Medicaid, and most private insurers 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 their Web site at
http://www.nhpco.org. The Web
site can also help you find a hospice in your community. |
| Benefits of Hospice and Home Care |
|
Hospice and home care professionals can help you and
your family work through some tough emotional issues.
A social worker can offer emotional support, help in
planning hospice or home care, and ease the move
between types of care. Many people prefer the comfort
of their own home, familiar surroundings, and having
friends and family members nearby. Getting health care
at home gives family members, friends, and neighbors the
chance to spend time with you and help with your care.
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Home care services are for people who are at home rather
than in a hospital. Home care services may include:
- Monitoring care
- Managing symptoms
- Providing medical equipment
- Physical and other therapies
You may have to pay for home care services yourself. Check
with your insurance company. Medicare, Medicaid, and
private insurance will sometimes cover home care services
when ordered by your doctor. But some rules apply. So talk
to your social worker and other members of your health care
team to find out more.
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