We have all been a patient one time or the other in our life. These personal experiences can help to better understand the need for a more patient-centric approach in clinical trials.
Empathy is a powerful communication tool. It is often misunderstood and underused. People often confuse the word empathy with sympathy. The origin of the word dates back to the early 20th century from the Greek word empathea (from em- ‘in’+ pathos ‘feeling’).
In the article, ‘Overthrowing Barriers to Empathy in Healthcare: Empathy in the Age of the Internet,’ J. Howick and S. Rees, say the ‘empathy-based medicine re-establishes relationships as the heart of healthcare.’ They continue to say that practitioners often complain that their capacity to practice empathically is undermined by ‘tyrannical guidelines,’ insufficient time and an ever-increasing burden of paperwork.
The Empathy Deficit
During my time as a nurse, I have met a scope of patients. Though some may think otherwise, it is my belief that patients face similar challenges. Patients mention feeling misunderstood by health professionals, and the health care system. Does the health professional truly understand what I am going through? Am I truly being seen or am I just someone with an illness? Does the health professional really understand what it means to be patient? These are just a few questions patients often ask themselves. I recall a patient saying that he felt as if the health care professional and himself where from “two different planets.”
During a visit to Northwestern University back in 2006, the then Senator Barack Obama said during his speech, “There’s a lot of talk in this country about the federal deficit. But I think we should talk more about our empathy deficit – the ability to put ourselves in someone else’s shoes; to see the world through those who are different from us.” It is time to talk about the empathy deficit among clinical trial professionals. Clinical trial professionals need to be able to put themselves in the shoes of the patient.
Make it Personal
A first step is to ask themselves is “what if I were the patient?” It is time to see the world through the patient’s eyes. Only then can clinical trial professionals truly empathize with the patient. Empathizing with the patient will help them understand the challenges patients encounter when contemplating participation, during and after a clinical trial. By doing this, clinical trial professionals can develop creative ideas to deal with the challenges facing the industry, such as the complexity of trials, regulations, spiraling costs, and patient access.
Empathy has a number of benefits. It has a therapeutic effectiveness on the provider-client relationship. Empathy has also been described as the process of understanding a person’s subjective experience by vicariously sharing that experience while maintaining an observant stance. It honors the patient or client, and nurtures respect.
Make it personal and keep it simple. Frederic Platt¹ outlined key steps to effective empathy:
1) Recognizing presence of strong feeling in the clinical setting (i.e. fear, anger, grief, disappointment)
2) Pausing to imagine how the patient might be feeling
3) Stating our perception of the patient’s feeling (i.e. “I can imagine that must be…” or “It sounds like you’re upset about…”)
4) Legitimizing that feeling
5) Respecting the patient’s effort to cope with the predicament
6) Offering support and partnership (i.e. “I’m committed to work with you to…” or “Let’s see what we can do together to…”)
Recognize the Patient’s Story
A clinical trial is a personal journey for each patient. Each patient has his or her own personal story for wanting to take part in a clinical trial. Are you aware of their personal story? Knowing their personal stories may contribute to them saying ‘yes’ to participate, and also may contribute to them staying in the trial.
Here are a number of revealed misgivings (and misconceptions) about empathetic communication:
1) “There is not enough time during the visit to give empathy”
2) “It is not relevant, and I’m too busy focusing on the acute medical problem”
3) “Giving empathy is emotionally exhausting for me”
4) “I don’t want to open that Pandora’s box”
5) “I’m concerned that if I use up all my empathy at work I won’t have anything left for my family”
Let’s make each clinical trial a personal journey.
3) Zinn W. The empathic physician. Arch Intern Med 1993 Feb 8;153(3):306-12
4) ¹Platt FW. Empathy: can it be taught? Ann Intern Med 1992 Oct 15;117(8):700; author reply 701.