Which are the many roles of a cancer family caregiver?

A caregiver is not just a caregiver – first and foremost, he or she is a husband, a wife, a son, a daughter, or a friend. And when it comes to caring for someone with cancer, the role of the caregiver goes through many a change at several different points in the course of the disease. For example, a caregiver should play a major role as a member of the medical care team right from the beginning. As treatment approaches become more advanced, patients live longer and better and have an increased chance to be cared for at home. As a result, many duties that were formerly performed by doctors and nurses can be done at home by a caregiver – such as organizing and administering medications.

In addition to the hands-on care that caregivers provide for the cancer patient, there are three clear-cut roles that must be assumed; decision-maker, advocate, and communicator.

Caregiver roles in cancer care


Doctors, caregivers, and patients make decisions together. Legitimate information is essential to making the right decisions. However, the doctor may provide information in too technical a manner that may not be easily understood by patient or caregiver. Thus, they may want to look for further information, for instance:

·         Searching the internet for authoritative websites.

·         Reading articles about cancer in medical journals and cancer information written for patients and the public available at libraries.

·         Asking friends and relatives for advice.

·         Resorting to other sources such as government agencies, cancer centers, and cancer organizations.

While there is nothing wrong with conducting personal research, the caregiver should discuss what he or she learns with the doctor, as well as not hesitate to ask follow-up questions to clarify complex matters.


The caregiver becomes an advocate by conveying what he or she knows and understands – usually better than anyone else – about the needs and wishes of the patient. An advocate may do one or more of the following as well:

·         Get information which may be hard to find.

·         Find doctors and specialists needed.

·         Monitor the patient for changes and problems.

·         Help the patient adhere to treatments.

·         Tell the medical care team about any new symptoms or side effects and ask for help in treating them.

·         Help the patient make healthy lifestyle changes and follow healthy behaviors.

·         Pay the patient's bills and take care of insurance claims.


Even though the patient should remain involved in the decision-making process, the caregiver more often than not becomes the mouthpiece that tells doctors about the patient’s concerns. Poor communications creates confusion; good communication improves the quality of life of the patient.


We just said how the caregiver knows the needs of the patient probably better than anyone else. However, those needs may change over the course of cancer treatment – at which points the role of the caregiver may change as well – especially during these milestones:

·         When the patient is diagnosed.

·         When the patient is being treated in the hospital.

·         When home care starts.

·         When treatment ends.

·         When new treatments start.

·         When/if cancer recurs.

·         When end-of-life care starts.

Development of caregiver roles during cancer care

At diagnosis

At this point the caregiver assumes an active role, learning as much as possible about the type of cancer, accompanying the patient to new treatment places, and helping the patient make decisions.

During hospital treatment

The caregiver may tacitly or explicitly become the intermediary between patient and medical team. Therefore, the caregiver needs to be able to communicate well with both parties to avoid misunderstandings. Additionally, while the patient is in the hospital, the caregiver may have to:

·         Take on the patient’s household duties.

·         Schedule and plan travel to and from hospital visits.

·         Navigate the healthcare system for the patient.

·         Arrange for home care.

·         Handle insurance matters.

During home care

The transition from hospital to home care typically entails more work for the caregiver, such as:

·         Being a companion to the patient.

·         Continuing to do many of the patient’s household duties.

·         Taking care of medicines and meals.

·         Scheduling doctor’s appointments, planning travel to and from the visits, and going with the patient to them.

·         Arranging for home visits by therapists or other professionals.

·         Dealing with medical emergencies.

·         Taking care of insurance matters.

·         Working through the healthcare system.

When treatment ends

Many caregivers and care receivers have trouble adjusting during the first year after treatment ends, especially if they are husband and wife. Moreover, concerns that the cancer might come back always loom in the horizon.


The caregiver faces a slew of new challenges during end-of-life care, including:

·         The patient becoming more and more dependent on the caregiver for physical and emotional support.

·         Increasingly difficult to manage symptoms.

·         Distress caused by the caregiver’s inability to take part in activities and interests that are important to him/her. 

·         Lower quality of life.

·         Poor health.


In addition to all of the above, someone caring for a loved one with cancer may be expected to learn and apply many new skills, including but not limited to:

·         How to move the patient.

·         How to help the patient walk.

·         How to place pillows to make the patient comfortable.

·         How to give medicines and treatments.

·         What to do in medical emergencies.

·         How to solve problems.

·         How to take care of themselves.

·         How to manage symptoms and side effects.

·         What medicines to use and how and when to give them.

·         How to tell if a medicine is working.

·         How to know when the medicine is causing side effects.

·         Ways to manage symptoms without medicine such as massage, hot or cold compresses, rest and relaxation, distraction.

It’s not surprising, then, that caregiving takes a physical, psychological, social, and financial toll on an untrained caregiver.

Caregiver quality of life issues


Helping the patient use the toilet, eat, change position in bed, move from bed to toilet, and use home medical equipment can be put both caregiver and care receiver at risk of injury.


The physical demands of caregiving, as well as emotional distress resulting from watching a loved one suffer from cancer can manifest as caregiver stress or caregiver burnout.


Caregiving duties may isolate a person from his or her family and friends. Furthermore, the relationship between caregiver and care receiver may crack under the pressure, leading to the former to feel even more disconnected.


insurance deductibles, copayments, and out-of-pocket costs are some of the expenses caregivers have to incur which, combined with less income if they have to quit their jobs to become full-time caregivers, put a financial strain on a person caring for someone with cancer.


Ironically, the caregiver may refuse to involve others in family matters and thus refuse to accept help or even ask for it. The fact is, caregivers should ask and receive help from friends and relatives, as well as from other resources in several areas.

Caregiver help

Education and information

  • Calling a cancer information specialist at 1-800-4-CANCER (1-800-422-6237).
  • Searching the Internet.
  • Asking questions.
  • Reading booklets, pamphlets, fact sheets, and information cards.
  • Using touch-screen and other computer information systems at hospitals and doctor offices.
  • Learning from DVDs that teach caregiving skills.

Coping skills

·         Creativity, Optimism, Planning, and Expert information (COPE).


·         Support groups.

·         Mental health professionals.

Family meetings

Family meetings help the healthcare team and the caregivers connect and collaborate. Although everyone may be working toward the same end – the wellbeing of the patient – not everyone may agree on the means to achieve that end. Family meetings may help:

  • Identify caregivers' concerns.
  • Provide clear information about treatment.
  • Enable the making of decisions about treatment choices and end-of-life care.
  • Ensure the caregivers know that symptoms and side effects will be controlled.
  • Ensure that caregivers know that the wishes of the patient are being taken into consideration.

Home care services

  • Visits from nurses, aides, therapists, and social workers.
  • Help with errands, meals, and bathing.
  • Delivery of medicine.
  • Use of home medical equipment.

Hospice care

This is given when the goal of care is not curative but palliative – in particular during the latter stages of cancer and as a part of end-of-life care. A hospice care team helps with the emotional, social, and spiritual needs of patients, caregivers, and families.


Related: Caring for someone with cancer all day, everyday