Dying to Help: What Caregivers' Dilemmas Can Teach Us
Ebola caretakers are putting their own lives and their family members' at risk.
Posted Sep 22, 2014
Many thanks to emergency room physician Marion Sills, MD who co-authored this article with me.
Americans have recently have been exposed to heart-wrenching stories from the frontlines of the Ebola outbreak in West Africa, and most recently here in Texas as well. Images of suffering victims and of the healthcare providers who have given their lives serving them highlight a critical issue:
How much giving is enough giving?
The deaths in Africa of frontline Ebola healthcare providers dramatize the extreme of what happens to a lesser, and yet still harmful, degree to many in compassionate, service-oriented roles--including teachers, mental health professionals, spouses, parents and others who give their energies to care for others at home and at work.
Compassion is intrinsic to these roles. Yet too much compassionate care-taking can lead to burnout, an experience of emotional exhaustion, depersonalization and reduced accomplishment. Similarly, care-takers trying to help those who are traumatized or suffering can experience stress known as compassion fatigue. workers in settings where compassion can motivate over-giving. Those who experience burnout or compassion fatigue through providing care to others may feel like they are figuratively and sometimes literally “giving their lives” to the care of others.
Large headlines about the Ebola outbreak in West Africa ensured our awareness of this dangerous epidemic which, while no longer appearing to pose a danger in the US, still rages in parts of Africa. Meanwhile, juxtaposed smaller headlines were for some time informing readers of another epidemic that had been spreading in the United States: enterovirus-D68, a serious respiratory virus that primarily strikes children. Though not deadly like Ebola, enterovirus was similarly challenging frontline healthcare providers, putting them at risk for burnout and compassion fatigue,
Differences between the challenges presented by Ebola and by enterovirus may seem to be stark, starting with the comparative severity of the two illnesses. In addaition, most ebola-stricken regions have grossly inadequate infrastructure and personnel to care for their ill, whereas most of the patients here in the US with enterovirus-D68 do have access to the necessary supportive and often highly intensive care that they need to recover.
Yet in confronting pervasive dangerous and contagious illnesses, a similar major psycho-ethical dilemma faces healthcare providers on both sides of the globe.
All epidemics bring more patients to healthcare providers than they can comfortably handle while still maintaining a professionally compassionate and responsive patient-provider relationship.
By tradition and professional oath, most healthcare providers take seriously their moral obligation to care for the ill in a manner that is kind, effective, equitable and patient-centered. They and their families know that this obligation sometimes extends time away from home to unplanned hours. This ethical obligation, plus their own internal feelings of compassion, motivates them when necessary to extend their efforts far beyond routine or billable care.
The provider’s dilemma: how do I balance my own well-being and my family’s against the extraordinary needs of my patients?
Preparedness protocols and extensive practice drills train healthcare workers well for what to do for patients in response to sudden mass casualty incidents such as epidemics, earthquakes and school shootings. They encourage healthcare staff in these extreme times, for example, to triage as many less-sick patients as possible out the door to head back home with less treatment than usual as long as they are stable.
Disaster protocols, however, give less guidance about balancing help for others with care for themselves, and especially in response to an extended crisis. Examples of balancing choices frontline providers face at such times include:
• Are they upholding their moral obligation as a provider when they seek efficiency, for instance by interrupting patients' narratives after receiving the medically necessary information?
• How do they fulfill their professional obligations without “giving their lives” metaphorically if not literally?
Local disasters such as major car accidents, fires, floods and earthquakes generally are time-limited. For a brief time period, an overdose of giving can actually stimulate adrenaline and enhance feelings of self-worth.
An epidemic like Ebola, by contrast, may draw out over weeks or months.
For these kinds of longer term period of intense need, ethics of care for others must be balanced by self-care ethics. Otherwise, frontline providers for the African Ebola and US enterovirus epidemics, or caregivers in any overloaded extended-need situations, become at-risk for burn out, bringing with it the apathy that signifies depletion of zeal and compassion.
As a tribute to those giving their lives to fight Ebola, let their compassion be a reminder to all of us to learn how best to balance caring for others with caring for themselves.
Exhaustion, and eventually apathy and resentment can, sadly, erode the positive emotion of goodwill. Emotional burn out and physical fatigue can deplete the eagerness to make a difference in others’ lives that make an altruistic life feel worth living.
What can compassionate providers do to maintain their caregiving ideals and at the same time keep themselves cared for sufficiently so that they will be able to keep working with dedication and enthusiasm?
Remember what they tell you at the outset of every airplane flight. Put the oxygen mask first on yourself before attempting to put one on children or other dependents.
Some techniques to mitigate burnout are familiar stress-reduction self-care methods. Take a nap. Take in appreciation. Take time to focus on your own life pleasures, needs and desires. Take whatever would rejuvenate you. Rebalance your giving and your getting now if you want to be able to complete with enthusiasm the marathon ahead.
Other techniques are more tailored to burnout mitigation in mental and physical healthcare providers. Burnout mitigation programs--such as this online one with mindfulness-based stress reduction options—have been found to reduce burnout among providers.
Interestingly, apathy, referred to by the social theorist Emile Durkheim as anomie, can set in from the opposite side of the give-get continuum.
A reader of one of my earlier blogposts recently wrote to me that she suffers from apathy. Her apathy, she acknowledged insightfully, comes from not having a place to give. Her life energies suffer from a life that feels too self-centered. With no children, a job that feels meaningless, and insufficient activities that give her a feeling that her life makes a difference to others produces within her a chronic sense of apathy about living.
In sum, both excessive altruism and insufficient altruism opportunities can invite exhaustion to replace enthusiasm.
How are you doing in balancing these dimensions?
Balance needn’t mean equal. It does require though at least some responsiveness to the needs on each side in a ratio that genuinely works for you.
What we learn in times of extended giving can help better equip us for our normal day-to-day challenges of providing care to others and at the same time caring for ourselves.
The ancient sage Hillel once offered a recipe for countering the apathy that arises from an unbalanced life. It’s a recipe that fits well for today’s times:
“If I am not for myself, who will be? And if I am for myself alone, what good am I? And if not now, when?”
(c) Susan Heitler
For an indexed listing of blogposts by clinical psychologist Susan Heitler, PhD's, please click here.