NCCN Guidelines for Patients® | Multiple Myeloma - page 64

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NCCN Guidelines for Patients
®
Multiple Myeloma, Version 1.2014
5
Deciding on a treatment plan Your role in planning
Survivorship care
Cancer survivorship begins on the day you learn
of having myeloma. For many survivors, the end of
active treatment signals a time of celebration but also
of great anxiety. This is a very normal response. You
may need support to address issues that arise from
not having regular visits with your cancer care team.
In addition, your treatment plan should include a
schedule of cancer follow-up tests, treatment of long-
term side effects, and care of your general health.
Advance care planning
Talking with your doctor about your prognosis can
help with treatment planning. If the cancer can’t be
controlled or cured, a care plan for the end of life can
be made. However, such talks often happen too late
or not at all. Your doctor may delay these talks for
fear that you may lose hope, become depressed, or
have a shorter survival. Studies suggest that these
fears are wrong. Instead, there are many benefits to
advance care planning. It is useful for:
• Knowing what to expect,
• Making the most of your time,
• Lowering the stress of caregivers,
• Having your wishes followed,
• Having a better quality of life, and
• Getting good care.
Advance care planning starts with an honest talk
between you and your doctors. You don’t have to
know the exact details of your prognosis. Just having
a general idea will help with planning. With this
information, you can decide at what point you’d want
to stop chemotherapy or other treatments, if at all.
You can also decide what treatments you’d want for
symptom relief, such as radiation therapy, surgery, or
medicine.
Another part of the planning involves hospice care.
Hospice care doesn’t include treatment to fight the
cancer but rather to reduce symptoms caused by
cancer. Hospice care may be started because you
aren’t interested in more cancer treatment, no other
cancer treatment is available, or because you may be
too sick for cancer treatment.
Hospice care allows you to have the best quality of
life possible. Care is given all day, every day of the
week. You can choose to have hospice care at home
or at a hospice center. One study found that patients
and caregivers had a better quality of life when
hospice care was started early.
An advance directive describes the treatment you’d
want if you weren’t able to make your wishes known.
It also can name a person whom you’d want to make
decisions for you. It is a legal paper that your doctors
have to follow. It can reveal your wishes about life-
sustaining machines, such as feeding tubes. It can
also include your treatment wishes if your heart or
lungs were to stop working. If you already have an
advance directive, it may need to be updated to be
legally valid.
Your role in planning
The role patients want in treatment planning
differs. Some patients want to be involved as little
as possible. Others want to know everything and
share decision-making with their doctors. These two
roles are described as passive and active. Tell your
treatment team which role you want or if you want a
role somewhere in the middle.
Passive role
In a passive role, a person often doesn’t seek out
information, speak up for himself or herself, or think
through treatment options. This may be due to a
high level of stress. It may be hard to hear or know
what others are saying. Stress, pain, and drugs can
limit your ability to make good decisions. You may
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