A Dangerous Communication Gap: Why Collaborative Health Care Needs to Become a Reality

With medical errors reported to be the third leading cause of death in the U.S., the founder of Excitant Health is on a mission to help caregivers, patients, and care partners trust in the wisdom all parties have to offer in every health care setting.

Patient-centered care. This has been a buzz phrase in health care for years — but what does it mean? And is it really taking place? According to one expert who has been through the wringer when it comes to patient and care partner-inclusive care over the years, the answer is no. Or at least — not quite yet. 

Karen Golding Smith is the founder of Excitant Health, an organization that is addressing the difficult issues around collaboration amongst caregivers, patients, and care partners. To Karen, an occupational therapist by training, lack of communication between all parties is one of the great — and dangerous —  divides in such an important arena of life. 

According to a 2016 study from patient safety experts at Johns Hopkins University, more than 250,000 people in the U.S. die each year from medical errors, making it the third leading cause of death in the U.S. behind heart disease and cancer (chronic respiratory disease is the fourth, according to the CDC). And a 2018 study from the Integrated Benefits Institute found that lost productivity due to illness or injury is costing U.S. employers $530 billion per year. 

Through Excitant Health, Karen and her team provide tools to professionals in health care, patients, and care partners to bridge the communication gap in order to see these stats decline. Their mission is to create an inclusive, mutually respectful health care relationship that taps into everyone’s expertise toward the best possible outcomes. Karen’s team refers to this as a “culture of collaborative care.”

“To build trust, we must create an environment where everyone feels empowered to speak up, knowing that their concerns will be heard, acknowledged and acted upon,” Karen says.  

As it stands today, lots of things can go wrong in any health care encounter due to lack of information, lack of clarity, disagreeing with an action from a doctor who you felt like you couldn’t express yourself to because you felt intimidated, etc. Karen knows this from several painful personal experiences. She lost her first two children, Rachel and Jaclyn — twins who were born prematurely in late 1987 surrounded by two neonatal teams. Jaclyn died the day after she was born, and Rachel died four months later from an infection she contracted in the neonatal intensive care unit. It was during these four and a half months in the NICU that the seed was planted for the work she is doing now at Excitant Health. 

“You can imagine the lack of control I felt, the dependence on people I didn’t know, and the powerlessness to help my daughters,” Karen says. “There is a natural divide between the staff and patient experience that contributes to a sense of aloneness, even in the presence of great compassion.”

Years later, when her son was in the ICU following emergency surgery to save his life, she asked that alternate pain management options be explored because he had a collapsed lung, was very weak and was having apnea spells. He was also in a lot of pain. When the nurse came back and said the surgeon approved an increase in his morphine, Karen stopped her and asked if she had mentioned the trouble he was already having breathing. She had missed that part — but not intentionally. It was one of many tasks, the surgeon was a bit intimidating and the point got lost. 

“That was a communication gap that I was able to fill, keeping my son safe,” Karen says. 

Here are three lessons Karen is teaching others to bridge this often life-threatening communication gap.

1. Sharing expertise: A hospital room is a shared workspace.

Imagine five people sitting around a table working on a design for a shared workspace that they all will be using. There is a graphic designer, a CPA, an attorney, a musician, and an architect. Each clearly has expertise in something.  The graphic designer knows what space her team will need for their work, the accountant understands the finances required, the attorney the legalities, the architect how to design the space to meet everyone’s criteria. The musician? The space will house a state-of-the-art recording studio, so her input will be as vital and specific as everyone else’s. 

They all have the need for bathrooms, conference rooms, office equipment, heat and AC and maybe a kitchen and they share the vision of an awesome result. Could one of them design the workspace well without input from all?  

Now put a health care team at the same table. Each has an area of expertise and some of their knowledge overlaps. The patient is at the table along with a trusted care partner. Without the information that they share, the rest of the team has an incomplete picture. The physician’s credentials don’t give insight into the patient’s experience but do provide essential knowledge and skills. The nurse’s credentials show what she’s trained to do, but she might have a perspective the doctor doesn’t that could shift the plan. The neurologist and surgeon have specific areas of expertise that will be important in forming and carrying out the plan, but it’s the patient’s story and life experience that puts into context what everyone else has to offer. And that could be the vital piece of the puzzle.

2. Leveling perception of authority: Sit at the same round table.

Everyone in this shared workspace should all be on the same physical level — nobody standing over another, no captain’s chair. Even if the conversation is around a hospital bed, the approach should be as if everyone is at a round table, acknowledging equal importance among the participants and downplaying any educational or positional variances. Leveling the perception of authority and power opens the door to a mutually respectful exchange of information that contributes to that shared vision of the best possible outcome. 

3. Building trust: Erase the fear that keeps staff and patients silent. 

Errors can’t be averted or corrected when someone in a subordinate position is reluctant to speak up. A highly respected surgeon might make a call that a scrub nurse knows could jeopardize the safety of the patient but doesn’t speak up for fear of reprisal by the surgeon. A specialist jumps to a wrong diagnostic conclusion out of habit, missing a critical detail that the patient had shared, but the patient doesn’t question it because the specialist is the “expert.” Both the scrub nurse and the patient stayed silent because of fear or lack of trust.

This scenario is often referred to as Hostage Bargaining Syndrome, where patients, as described in this Mayo Clinic study, “negotiate for their health from a position of fear and confusion. It may manifest as understating a concern, asking for less than what is desired or needed, or even remaining silent against one’s better judgment… To subvert HBS and prevent learned helplessness, clinicians must aim to be sensitive to the power imbalance inherent in the clinician-patient relationship.”

To Karen, this ultimately means that patients be “not demanding but respectfully bold” with their own input about their own health, setting the expectation of inclusion and partnership. 

“You’re not taking up more of the doctor’s time but helping them narrow down the issue and accelerate the process,” she says. “If we’re going to bridge the gap, we all must be in the conversation, to not just talk or listen, but to hear and strive to understand each other. We all need to share our expertise in a way that is respectful and clear.”