You have heard about compassion fatigue and burnout happening to oncology professionals such as ourselves. Well, it can happen to family caregivers too, especially those caring for a loved one with advanced cancer.
Family caregivers are drafted suddenly—usually just a few hours after a person learns they have been diagnosed with a serious cancer. Everyone is in a tailspin, and despite this chaos, the newly appointed family caregiver must pull it together—and fast.
In many cases, the designated caregiver works outside of the home and already has their fair share of duties in addition to their daily job. Now they must orchestrate a new flexible schedule to accommodate consultations, appointments with other healthcare providers, and become an expert in the disease and its treatment. It’s a lot. And it may go on for months or even years.
Often, the doctors are focusing on the patient, talking with the patient, discussing treatment options with the patient—even though the patient’s loved one is there taking notes rapidly and trying to understand everything. As oncology navigators, we need to devote extra time to the family caregiver. They need to be educated just as the patient does, and not only about the diagnosis and treatments, but also which visits she needs to attend and which ones might not require her to take half of a day from work. You can help the caregiver create a calendar of tasks and teach her how to solicit help from other family and friends. Although people frequently feel guilty asking for help, there are likely already individuals who have asked “how can I help?” and were told that they are doing “ok” right now. Really? Ok? Very doubtful. And remind the caregiver that whoever is offering to help, whether a neighbor or best friend, may have their own major life crisis of some kind in the future and the caregiver will be there for him or her.
When a family caregiver doesn’t get a break, there is high risk of compassion fatigue. And if it continues for a long time, then burnout is inevitable. There will even be times when their loved one may appear to be at death’s door, is rushed to the ER, and the family caregiver is truly ready to have their loved one pass away, only to have him receive blood transfusions and hydration and bounce back 8 hours later, ready to return home again and resume the stress and strain. Caregivers have discussed how guilty they felt because they were ready for things to come to an end.
One of the things that you can do to help the family caregiver is take a few minutes, privately without the patient in the room, and ask genuinely, “how are YOU doing. This is tough. I am here for you too. Tell me who is helping you with tasks like meal preparation, picking up kids from school, running to the grocery store or pharmacy, and such.” If the answer is, “I can’t handle it,” then the time has come to have a lengthier discussion about the risk of compassion fatigue and burnout.
We need to make sure that the family caregiver is getting respite in some form—still going to the gym or running, eating a well-balanced diet, not skipping meals or choosing a bag of potato chips over a granola bar, and getting adequate sleep.
The caregiver also needs to express emotion: tears about what lies ahead; anger that a good person has been diagnosed with a fatal form of cancer; worry that they may not be financially stable after he is gone. Take any clues from this discussion and help to provide resources for the caregiver—counselors, financial resources, advocacy organizations to deliver food/meals, and arrange to call the caregiver at specific dates and times to see how things are going.
Once the patient is in hospice, make sure the caregiver utilizes all of the resources available for family members, including grief counseling after their loved one has passed.
The patient has cancer, but the family caregiver does in a way too. No one is meant to try to do all of this alone.