Compassion Fatigue and Burnout in Cancer Caregivers

How Secondary Traumatic Stress Affects Family Caregivers and Oncology Staff

Exhausted woman caring for her husband with cancer

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©KatarzynaBialasiewicz

 

 

Compassion fatigue, also referred to as secondary traumatic stress or vicarious traumatization, is a condition that can affect both family caregivers and health care providers who care for cancer patients. When burnout progresses to compassion fatigue, people may experience not only a state of exhaustion, but a reduction in empathy, loss of joy, a loss of interest in being a caregiver, and even apathy.

Fortunately there are a number of warning signs that can alert people it is occurring. Management includes excellent self-care, support from others, and taking a break (respite) as soon as possible.

Understanding Compassion Fatigue

Both compassion, a word that means "to suffer with," and empathy, or the ability to put yourself in another person's shoes, are extremely important when caring for a loved one with cancer. Cancer is considered a form of trauma, and in recent years the concept of post-traumatic stress in cancer survivors has been brought to the attention of oncologists.

While it is people with cancer who directly experience this stress, the effects of the stress can extend to both family caregivers and healthcare caregivers such as oncologists, oncology nurses, oncology social workers, and other people who have direct contact with the person suffering.

It's important to stress that it is the people that care the most who are at risk of compassion fatigue. Secondary stress is the byproduct of being empathetic and caring.

Because of the ability to empathize with a loved one or patient with cancer, caregivers may take on this stress as if it was his or her own. Secondary stress, vicarious traumatic stress, or compassion fatigue occurs when this stress of caring for others becomes severe enough that it affects the caregivers quality of life. The caregiver becomes exhausted not only emotionally, but physically, spiritually, and socially.

Compassion Fatigue Versus Burnout

Many people are more familiar with caregiver "burnout" than compassion fatigue, but there are some important differences. Burnout tends to develop gradually over time and, though a caregiver may feel exhausted, he or she continues to feel empathy and a desire to care for their loved one.

In contrast, compassion fatigue often develops suddenly, though most often after a period of burnout. A caregiver who was previously very empathic and caring may feel a lack of empathy or even indifference when it comes to caring for their loved one or patient with cancer.

Until a person has experienced compassion fatigue, it may be hard to imagine developing a lack of empathy or disinterest in your loved one. Since it occurs most commonly in people who have a high degree of empathy, the development of compassion fatigue is often marked by a significant change in how a person feels and generates considerable distress.

Compassion fatigue is caused by having empathy, but can result in a reduction or loss of empathy.

Fortunately, if compassion fatigue is recognized and managed as early as possible, caregivers often recover much more quickly than those who have been suffering from prolonged burnout.

A person may experience burnout but not compassion fatigue, but those who experience compassion fatigue have often been experiencing burnout. In contrast to burnout, compassion fatigue is more related to being directly exposed to suffering than being overwhelmed by caregiving responsibilities, and occurs in people who are closely involved with the care of a loved one or patient.

Who is Affected?

Caregivers of people with cancer (as well as many other conditions both physical and emotional) are at risk of compassion fatigue, whether as a family member, friend, or a health care professional.

Family Caregivers and Friend Caregivers: Most commonly, the risk of burnout and/or compassion fatigue is highest in the person who is the primary caregiver. This may be a spouse, parent, child, or a non-family loved one.

Health Care Professionals: Compassion fatigue has been studied most extensively in nurses, but may occur in any health professional who directly cares for people with cancer. In this setting, compassion fatigue is now known to be a common reason why health professionals leave their job or choose to leave medicine completely. Due to knowledge about this risk in recent years, there are now a number of seminars, workshops, and other resources to help health care professionals manage or prevent the development of compassion fatigue.

Caregiving: Family vs. Health Care Providers

While compassion fatigue has only recently been studied in family caregivers, loved ones who care for someone with cancer may be at greatest risk in a few ways. Unlike health care professionals, family members can't call in sick, request a mental health day, or take a vacation from caring.

The family setting is also more isolating, with fewer opportunities to "vent" the frustrations with colleagues than in the health care setting. Family caregivers also lack the professional resources available for health care providers experiencing burnout or compassion fatigue. And, when compassion fatigue occurs, it's less likely to be recognized.

How Common Is It?

Since compassion fatigue was given a name only a few decades ago, and since most studies have looked at healthcare professionals caring for cancer patients, it's hard to know the true incidence of compassion fatigue in family caregivers of people with cancer. That said, advances in medicine though wonderful, are likely to increase this incidence substantially.

For some cancers, such as non-small cell lung cancers that have treatable mutations, people are expected to live much longer with advanced cancer than in the past. The ongoing exposure to suffering and stress in caregivers will make it even more important for family cancer caregivers to practice healthy measures such as self-care that lower the risk of burnout and compassion fatigue.

Symptoms and Warning Signs

There are a number of symptoms to keep in mind so that you can recognize the warning signs of compassion fatigue early. That said, the overall picture is most important. It's common to have a few of these is symptoms without compassion fatigue, and most people will have days that are better and days that are worse.

Early on in caregiving, you may feel as though you could handle anything. If you reach a point in which every day is a challenge, it's likely time to reach out for help.

Symptoms of compassion fatigue may include:

  • Feeling completely overwhelmed: Many people note that they reach a point in which they are working harder, but accomplishing less
  • A feeling of hopelessness
  • Disinterest or loss of interest in caring for your loved one
  • Feeling indifferent about your loved ones care
  • Reduced empathy
  • Pessimism and cynicism that was not currently part of your personality
  • Sleep disturbances
  • Feeling resentful of the time spent caring for the family member or patient, and intolerant of her requests
  • Irritability and loss of patience
  • Frequent illness
  • Loss of joy and meaning
  • Avoidance, wishing the caregiving situation or job would end
  • Withdrawal from family and friends
  • Poor ability to make decisions

Many people who have reached the point of compassion fatigue withdraw socially, and find themselves simply going through the motions of life, and not really living or experiencing any joy.

Unfortunately, these symptoms may be dismissed as depression, and depression given the situation may appear to be justified. Yet depression is not a normal byproduct of healthy caregiving.

Risk Factors and Causes

Nearly anyone caring for someone with cancer may develop compassion fatigue, whether a loved one, oncologist, oncology nurse, social worker, or another caregiver. That said, there are situations that make the development more likely.

  • Unrealistic family expectations are one risk factor, especially when accompanied by a sense of powerlessness to change the situation.
  • People who become completely absorbed and preoccupied with their loved ones (or patients) health to the exclusion of their own needs and health are also at risk.
  • People who have inadequate support in their caregiving, whether physical, financial, or emotional.
  • People who have a history of physical, sexual, or emotional abuse or neglect may be more susceptible to compassion fatigue, and the feelings that arise when it occurs can reactivate painful memories from the past.
  • People who are doing double duty, such as family caregivers who are also nurses, doctors, or social workers.

Recognizing Burnout and Compassion Fatigue

It's not always possible to prevent compassion fatigue, but it's important for all caregivers to be aware of the signs and to look into ways to manage these feelings should they occur. Unfortunately, family caregivers in particular often find it hard to admit they are feeling awful.

The development of burnout and compassion fatigue is not a character deficit or a lack of caring. In contrast, compassion fatigue is a consequence of empathy and caring.

Coping and Management

If you believe you may be experiencing compassion fatigue, or if you are concerned that you may get there if you continue on your current course, it's important to take stock immediately.

Seek Respite ASAP

If you have developed compassion fatigue, it's important to take a break immediately. Many people reach the point of compassionate fatigue because they can't imagine how they can get time for themselves, but doing so is critical.

In order to continue to care for your loved one or your patients, you need to take care of yourself first. At the beginning of every flight when the flight attendant goes through safety instructions, this point is repeated: You need to put on your own oxygen mask before you can help others.

Practice Self-Care

Practicing good self-care is not only recommended, it is essential. Eating good foods, getting restful sleep, and adequate physical activity is the fuel you need to keep going. Many of us would hesitate to put low-octane gas in our performance cars. Yet when caregiving you are being called to perform like a luxury car, and not only gas but high-octane gas is needed to sustain you.

Good self-care also includes caring for your intellectual, creative, and spiritual needs. Whether that means time for prayer, meditation, painting, music, dancing, running, or something else, fulfilling these basic needs can help you recapture the person you were who was caring enough to become a caregiver in the first place.

Remember Who You Are

It's easy to lose your sense of identity as a caregiver. You are someone's daughter or someone's nurse. Take a moment to try to remember who you were BC (before cancer). Those other labels, whether you are a gardener, a musician, etc., are key to your identity that can keep life in perspective.

Get Support

Support in caring for your loved one (or patients) is important, but emotional support in the form of a support network is equally important. Support groups and support communities are becoming more prevalent.

In health care, there are now many resources in place. Efforts to address compassion fatigue and resiliency among medical professionals is now trickling down to family caregivers, with some cancer centers now offering resiliency programs for survivors and loved ones.

You may also wish to seek out help from a counselor or therapist.

Working through your feelings and finding your way out of compassion fatigue with someone knowledgeable may help you develop tools to lower the chance you will end up there again.

Whomever you talk to, however, make sure that "victim blaming" does not occur. It is not your fault that you have experienced burnout or compassion fatigue. You need support, not more baggage tossed on your back.

You also have permission to plug your ears when people tell you that you must take care of yourself. Unless that person offers to lighten your load, those words are worse than worthless.

Prevention

Preventing burnout and compassion fatigue means addressing the things just mentioned before you reach the point of being overwhelmed.

A Word From Verywell

Putting your own oxygen mask on first basically sums up the strategies used to climb out of or prevent burnout and compassion fatigue. While we've discussed a downside of caregiving, it's important to point out there are positive aspects of caring for a loved one or patient with cancer, and the term compassion satisfaction has been coined to describe these positive feelings.

Just as cancer survivors have been found to often experience post-traumatic growth, caregivers often experience these silver linings of an increased appreciation of life, increase in personal strength, greater connections, and compassion, and more.

Focusing on good self-care and getting the support you need can help you not only survive your caregiving experience, but grow as an individual in the process.

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