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Family Caregivers in Cancer (PDQ®)

Patient Version
Last Modified: 08/01/2013

Roles for the Family Caregiver



The family caregiver has many roles besides giving the patient hands-on care.

Most people think first of the physical care given by a family caregiver, but a caregiver fills many other roles during the patient's cancer experience. In addition to hands-on care, the caregiver may also do the following:

  • Manage the patient's medical care, insurance claims, and bill payments.
  • Be a companion to the patient.
  • Go with the patient to doctor appointments, run personal errands, cook, clean, and do other housekeeping chores.
  • Find doctors and specialists needed and get information that may be hard to find.
  • Help the patient connect with family, friends, neighbors, and community members.

A family caregiver faces the tough job of taking on new roles and challenges as the patient's needs change over time.

The caregiver takes on different roles so that the patient gets all the information, support, and treatment he or she needs.

Caregivers may take on the roles of decision maker, patient advocate, and communicator.

Decision Maker

Doctors, caregivers, and patients are partners in making decisions. Making a decision involves getting the right information in a way that it can be understood. Cancer patients have many information needs. They want to know about staying healthy, tests and treatments, side effects and symptoms, and emotional issues.

In order to make treatment decisions, caregivers and patients often want more information and they may look for help and information from sources other than the doctor. It's common for patients and their families to do the following:

  • Use the Internet to search for more information on the patient’s cancer and its treatment.
  • Check on the information given by the doctor.
  • Look into other treatments or complementary or alternative medicine.
  • Ask for advice from family and friends.

Information from outside sources is sometimes wrong or may be different from what the doctor said. It's important to get information that can be trusted and to talk to the doctor about it. Most libraries can help people find articles about cancer in medical journals and cancer information written for patients and the public. Good places to get information include government agencies, cancer centers, and cancer organizations.

Advocate

The family caregiver knows and understands the needs of the patient. The caregiver becomes an advocate for the patient by giving this information to the health care team. Although a caregiver may not have a medical background, daily contact with the patient gives the caregiver important information that helps the health care team help the patient. Information about the patient's symptoms and problems can help the doctor make better treatment plans and improve the patient's chance of getting better.

As the patient's advocate, the family caregiver may do the following:

  • Talk with the health care team about the patient's needs and wishes for the patient.
  • Get information that may be hard to find.
  • Find doctors and specialists needed.
  • Watch the patient for changes and problems.
  • Help the patient follow treatments.
  • Tell the health care team about any new symptoms or side effects and ask for help to treat them.
  • Help the patient make healthy changes and follow healthy behaviors.
  • Pay the patient's bills and take care of insurance claims.

Communicator

Good communication between the doctor, patient, and caregiver can improve the patient’s health and medical care. The family caregiver will often take on the role of speaking for the patient while keeping the patient included in decision making. Good communication helps both the doctor and the caregiver get the information they need to support the patient. Doctors need to hear about patients' concerns and caregivers need to understand the disease and treatment options. Poor communication may cause confusion about treatment. This can affect choices made about treatment and the patient's chance of getting better.

Cultural differences between the doctors and the caregiver or patient can affect communication. In some cultures, it is the custom to keep a life-threatening diagnosis a secret from the patient and avoid talking about the disease. Sometimes it is left to the caregiver to tell the patient the truth about a serious or terminal illness. This can be stressful for caregivers and increase their feelings of loneliness and responsibility. Caregivers should tell the health care team if they think cultural beliefs may affect how they talk about the cancer and making treatment decisions.