Tips for Bringing Trauma-Informed Care into Practice

According to L. Elizabeth Lincoln, MD, a Mass General Beacon Hill Primary Care physician quoted in a Harvard Health blog post, trauma-informed care can be defined as “practices that promote a culture of safety, empowerment, and healing.” Lincoln added, “A medical office or hospital can be a terrifying experience for someone who has experienced trauma, particularly for childhood sexual abuse survivors.”

While this explanation is helpful, the need for trauma-informed care spans beyond patients who live with PTSD. Its necessity is vast when taking a broader range of experiences into account:

• 57.8 million adults in the US live with a mental illness, and 5 percent of Americans have PTSD at any given time.
• 50 million live with chronic pain, and 24.4 million suffer high-impact chronic pain that limits their ability to work, socialize, or attend to self-care.
• An estimated 54 million people live with a disability.
• Up to 30 million people live with a rare disease.
• An estimated 5.4 million adults in the US live with autism.
• According to the CDC, 129 million Americans live with a chronic illness.

In addition, while we do not have specific numbers for medical trauma, the National Child Traumatic Stress Network reports that up to 80 percent of ill or injured children and their families experience traumatic stress reactions following a life-threatening illness, injury, or painful medical procedure.

The very act of struggling with a medical condition can lead to trauma, as well as getting a dreaded diagnosis of a chronic or life-threatening illness. Seeking diagnosis is also a factor because it takes an average of 8 to 10 years to be diagnosed with a rare disease, and it takes about the same amount of time to be diagnosed with endometriosis, a relatively common condition. The process takes its toll mentally, physically, and financially.

I spend a lot of time in online patient communities. Many people seeking support there discuss stress over denials of tests or treatment because of the need for prior authorization, the high cost of health care, difficulty getting appointments, and the dismissive attitudes they experience during appointments or in the emergency department. From what I have observed, the number of stories is especially high among people of color and those who identify as women.

First-Hand Experience

I live with complex PTSD (CPTSD) and have endured a long history of medical problems. I have experienced medical trauma first-hand. If the clinicians seeing me had received trauma-informed care training, I might have gotten the appropriate treatment sooner and received care that was more compassionate. Instead, over and over, clinicians told me pelvic pain was a woman’s lot in life and that I was letting anxiety get the better of me. It took more than 20 years for a clinician to diagnose me with endometriosis. By then, the damage was extensive. I believe trauma-informed clinicians would have been more likely to know that approximately 79 percent of women who experienced severe physical abuse as children develop endometriosis in adulthood.

A few years ago, as the chronic pain from endometriosis and fibroid tumors intensified and left me bedridden, I made numerous trips to the hospital. One visit resulted from a near-fatal adverse event with a newly prescribed pain medication that was meant to hold me over until surgery. When the team in the ED learned I had CPTSD, all sense of urgency stopped. One clinician said the toxic reaction to the medication was “all in my head” and that I needed to go home and calm down. Clinicians at another hospital correctly diagnosed and treated the problem, but by then, a new layer of trauma set in that I am still processing.

Learning from Patients

After writing about my experience of medical trauma, a professor invited me to give a keynote speech at a medical school symposium on what trauma-informed care looks like from the patient perspective. Some of the participating students worked with incarcerated victims of human trafficking, and my talk was the first they heard about the neurobiology of complex trauma. Later, we worked together to create a curriculum for medical students to use with patients who have CPTSD.

I hope clinicians of all disciplines keep the following points in mind to support trauma-informed care:

• Provide an atmosphere of safety. This is the essence of trauma-informed care.
• Try to understand why a patient may not automatically trust you. Keep in mind that many people who have experienced trauma were harmed by people they should have been able to trust.
• Remember that transparency is key. Use thorough descriptions about the decision-making process and each procedure.
• Make room for co-creation and collaboration. Trauma-informed care addresses power dynamics and should help patients establish a sense of empowerment and agency when considering options.
• Respect collective trauma. Trauma-informed care seeks to understand how identity, culture, history, economic circumstances, gender, and race influence the experience of people in communities and from marginalized groups.

I am incredibly fortunate to be a patient advocate in a place where quality improvement, health equity, and patient safety are at the core of the organizational mission. An important part of recovery for me has been to use my experience to improve care for others who may be struggling to get the help they need, and to help health care professionals understand why patient experience should be an integral part of practicing medicine.

Lee Frost is an IHI Marketing Operations Manager and patient advocate.

You may also be interested in:

The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk

Managing the Psychological Impact of Medical Trauma: A Guide for Mental Health and Health Care Professionals

How Trauma-Informed Care Can Help During Behavioral Health Emergencies