Breaking the Rules Compassionately

The following is the first in a series of interviews with participants in the Schwartz Center’s National Consensus Project (NCP) on Compassionate Healthcare. The NCP is a multi-pronged effort to make compassionate care a national healthcare priority. Our first interview is with Sandy Clancy, a mother who now works in healthcare as a result of her family’s experience during her son’s illness. Sandy participated in our two-day working group meeting in November. Here's her story.

After many months of doctors not knowing what was wrong with their very sick 5-year-old son Jack, he was finally diagnosed with a rare and serious blood disease in 2004. After Jack died, Sandy and her husband Lou were determined that other families would have a better healthcare experience.

Jack

“The care was fragmented. It was hard to navigate the system. I wanted to see mechanisms in place to help families like mine,” says Sandy, a former political science professor who is now the manager of Mass General Hospital’s Pediatric Coordinated Care Clinic in Boston. The clinic, which she and MGH leadership created together, provides collaborative medical care, troubleshooting, advocacy and other services to children with complex medical needs and their families.

How do you define compassionate care?

There are many dimensions to compassionate care and certainly the systems providers work in facilitate or impede their ability to deliver it. One component is care in which the provider is fully present and able to see things from the patient’s perspective. The provider listens and tries to address the patient’s needs, as articulated by the patient.

Can you give an example from your own life?

One month before Jack died, we still didn’t have a diagnosis. He was admitted to the hospital so that his doctors could get a handle on his pain. He would undergo a procedure that would allow a dermatologist, a gastroenterologist and a neurosurgeon to get tissue samples that would lead to a diagnosis. It was very difficult logistically to book an operating room on short notice for three sub-specialists.

At this point, Jack was petrified of the hospital and dreaded needles, so my husband Lou told him he could fall asleep in his arms as they delivered the anesthesia in the OR. Jack was scheduled to go into the OR at 9 am, but two hours later, the orderly still hadn’t come. So Lou ran to the cafeteria to get some coffee and after he left, the orderly arrived. We waited for a few minutes, and then the residents and nurses started getting nervous. I asked if they could page Lou. There was some grumbling about how that was against protocol. Someone left the room to call the operator, but no page. More waiting, another alleged call, but no page. I think anyone who has spent time in a hospital will understand how stressful it is to convey to very busy medical staff just how important something they perceive as a little thing is to a patient’s care.

Finally the anesthesiologist who was going to administer sedation to Jack came in. We had met him several times before. He had always sat down with us and listened. He never seemed to be in a rush. He saw Jack, me and my family as people who were trying to do the best we could in a challenging situation. I told him I didn’t understand why no one was paging Lou, and he said, “I’ll do it. If  this were my son, I would want somebody to do the same.” He called the page operator and suddenly my husband was being paged. Lou quickly returned to the room and was able to keep his promise to Jack.

I realized afterwards that the paging system was never supposed to be used to call patients or visitors but the anesthesiologist was willing to break the rules. He could see the situation from our point of view and this seemingly little thing was incredibly meaningful to us. That’s compassion. At the time, we didn’t know that Jack would be dead in one short month, and it was a huge relief to my husband that he was able to comfort our son this way.

If you could make the healthcare system more compassionate, what's the first thing you would do?

All healthcare providers would be trained in how to have that first critical conversation with a new patient and learn how to focus on what patients feel they need. There are teaching modules available in this area. The value of these conversations should be recognized, and caregivers who take the time to have these conversations would be compensated appropriately for their attentiveness to patients and their families.