Part One: Compassion Fatigue in Healthcare
JESSICA DALE IS A REGISTERED NURSE AND COMPASSION FATIGUE PROFESSIONAL. SHE ALSO IS MOM TO ZOE, 21, A TWO TIME BRAIN TUMOR SURVIVOR.
Have you run into a doctor that just seemed to not care? Maybe you felt rushed, received difficult news in a less than empathetic manner or felt like you just aren’t being heard. What you could be experiencing is healthcare compassion fatigue. It is a mental health situation that occurs in healthcare providers in clinical settings to caregivers of loved ones with chronic conditions or special needs. It is a subject worth exploring both in how to manage it in a caregiver role and how to handle a situation where a healthcare professional just seems to lack interest while we are desperate for solutions.
We spoke with a compassion fatigue expert, Jessica Dale on this issue. Jessica is a registered nurse, TEDMED Research Scholar & grant recipient. Certified Compassion Fatigue Professional, Certified Trauma Professional, Certified Grief Counseling Specialist, & REBT Coach. She is also a parent of Zoe, a 21-year-old two time craniopharyngioma brain tumor survivor. Jessica focuses her work on compassion and its role in healthcare. We spoke with her about the concept of “compassion fatigue,” both among healthcare professionals and caregivers to loved ones faced with the ongoing issues that come from brain tumors and treatments.
Jessica started her career in the healthcare industry, specifically in nephrology, but after her daughter’s diagnosis and starting this personal healthcare journey, she started being involved in things like trauma informed care and shifted gears clinically to focus on issues that she identified through the experience of her daughter’s diagnosis.
This post is part of a two-part series on compassion fatigue from the standpoint of the healthcare industry and from the perspective of being a caregiver of a child with medical conditions and special needs as a result of a brain tumor. In today’s Medical Monday post, we explore compassion fatigue in healthcare.
What is the definition of compassion fatigue?
People often use compassion fatigue or the word “burnout” interchangeably, but they are very different. Burnout is related to your environmental factors. Compassion fatigue is depletion of that caregiving capacity from being exposed to continuous emotional trauma or other suffering. Veterinarians suffer from compassion fatigue from their caring for and connection with animals, full-time caregivers at home, doctors, nurses, anyone in a caregiving role can experience it. You care so much for so long, that as a self-protection mechanism, your brain says you can’t respond empathetically anymore because it is taking too much and then you become somewhat detached. You don’t have the emotional connection to the people you are caring for. You start to exhibit symptoms similar to burnout where you are detached and easily overwhelmed. You find it really hard to care about the things you are used to caring about.
There seems to be two types of compassion fatigue that we may deal with at some point — our own as parent-caregivers and that of coming across a medical professional that is experiencing it. Can you speak to both sides of that?
As parents, it’s natural particularly when you are dealing with a child that has a medical condition or significant needs, its very common but there is a lot of guilt associated with it. Parents will come to times where they just feel like they can’t fix any more problems. You’ve given so much and you can’t get blood from a turnip and there is so much guilt that is associated with that. You are the parent how can you not care? How can you be so frustrated? Many times I would become very frustrated with my daughter for something that is totally normal for her age, something that all parents and children experience but then think how could I be frustrated with someone who has gone through so much? It’s a really hard balance for parents and you are constantly on this tightrope.
For healthcare professionals [from a parent or caregiver’s perspective], I think it’s hard for us to step back to empathize with them or understand because we are in that moment and we are as the parent and what we care about is the wellbeing of our child. We may not realize that Healthcare professionals endure a lot of vicarious trauma. Zoe’s neurosurgeon is a good example which I use in some of my teaching. When we first found out [about the tumor], he walked in the room and he said, “I mapped this tumor, we will take it out on Thursday, we will make an incision from ear to ear, peel back your forehead and take it out.” And it was like all of the oxygen had been sucked out of the room. I thought, “how can you just come in and say that?” But looking back, I didn’t know where he came from — if he came back from losing a patient or telling somebody that they were going to die. He was just presenting the facts, because that is the nuts and bolts of what he does.
As they begin to experience compassion fatigue, doctors and other health care professionals may have the inability to form that emotional bond. This is a subconscious change in their brain that is a way protect their own mental health. You think particularly of physicians, we don’t really expect them to be human, we expect them to exhibit a lot of humanity but not have their own human responses. They are dealing with life and death, they are telling people that their loved one is going to die, they are watching patients that they cared for die, delivering awful diagnoses all day long and we expect them to be able to wrap up and move on to the next patient. Physicians have the highest suicide rates in the country because of the mental health burden that they carry.
Health care professionals, in particular physicians must perform at 100%, one hundred percent of the time, they must exhibit the best of humanity without expressing their own human emotions, and they are discouraged from seeking support to deal with the stress and strain of their profession.
As a parents, or even as a nurse, I can say, “I’m so overwhelmed, I can’t do this.” I can post that on Facebook and people can rally around me. Physicians can’t do that. The profession is notorious for not supporting or providing mental health resources When physicians renew their licenses, they are asked if they have been treated for any mental health conditions. So they must make a choice — do I treat my anxiety or depression and potentially not be able to continue my work as a physician or do I just deal with it and bury it down so I can continue my work? So we have created this perfect storm in our healthcare system.
From a standpoint of being a patient or patient advocate, if we encounter a medical professional that seems to be uncaring or shows a lack of compassion, how do we handle it?
It really depends on your comfort level. Not everybody is comfortable being in the moment to say “how you are talking to me is upsetting or it feels like you’re callous,” If you are comfortable saying it, i encourage you to say it. If not, every facility has a patient advocate, so, if you’ve experienced this from a physician or anyone else you encounter while receiving care, I encourage you to call the patient advocate. It’s as easy as calling the facility operator and asking to be connected to a patient advocate; their job is to be your voice. They will share your experience internally with the proper channels; assuring your voice is heard. W
e may be unaware as healthcare professionals on how we sound to patients. We may have the best intentions. So calling the patient advocate is going to bring that to the provider’s attention to help them reflect on their patient interactions. It’s not that they are going to get in trouble, so don’t be afraid to say something because of that, but we can’t improve on things we don’t know we need to improve on.
If you went to see a doctor and they made me feel like they didn’t care, that patient advocate is going to bring it to the attention of the facility and of the provider. Maybe that is what that facility needs to be able to give the support that the healthcare professionals need. Sometimes you will encounter healthcare professionals that just don’t have a good bedside manner, but you still need to call the facility and you still need to have your voice heard. Don’t be discouraged, most people went into health care because they care and want to make a difference and you speaking up can help remind them of their “why.”
