Lisa and Rory’s Story

On October 31, 1991, Lisa Freeman kissed her husband Rory and waved goodbye as the gurney rolled him into the operating room for a routine back procedure.  The healthy 37-year old businessman and father of an 8- and 3-year-old was expecting a quick recovery.  But things didn’t go as planned.  A medical error left Rory paralyzed from the waist down, with brain damage, and with a surgical site infection that required multiple surgeries.

This is how it began.  For the next 18 years, Lisa became an advocate for Rory while caring for him and their children.

“Our children were not able to play catch with him anymore,” she said.  “My son would throw the ball and if Rory missed, my son would get it and hand it to him so Rory could return the throw.”

Rory endured worsening pain, surgeries, and countless hours of physical and brain therapy.  He developed many chronic conditions as a secondary consequence of the initial injury.  Lisa and Rory had a lot of time to talk.

“We always talked about death with great bravado,” Lisa said.  “He told me, ’Don’t keep me alive if it’s not going to be a good quality of life.’  He didn’t want to be kept alive using exceptional means, but we also didn’t do anything about it besides tell each other.”

One day, Rory was rushed to the hospital with serious pneumonia.  It wasn’t looking good.  But Rory had no advance directive, so during this time of crisis, the couple called an attorney to the room to create one at the bedside.  Looking back, Lisa wished she hadn’t needed to think about Rory’s end-of-life wishes during an emergency.

“At a time of crisis, our heads aren’t clear,” Lisa said.  “It’s important that we have ways for people to talk about our end-of-life wishes more comfortably, and we should create advance directives, but a time of crisis is never the time to make a decision.”

Rory recovered from the pneumonia but became sicker and sicker over time.  He experienced scarring in his lungs and needed a respiratory machine.  One night during dinner, Rory’s breathing became so weak that it wasn’t triggering the machine to work, and Lisa called 911.  EMTs began giving Rory CPR as Lisa searched the house for the papers that confirmed he didn’t want that kind of extraordinary effort.  The medical team didn’t stop until she found the paperwork.  So, in a flurry of medical activity, Rory died in the home they shared for so many years.

“It’s never what you expect.  And yet it was what can be expected,” she said.

Lisa continued her advocacy after Rory’s death in 2010.  She became the Executive Director of the Connecticut Center for Patient Safety, and her primary mission is empowering patients and the patient voice in healthcare. 

Now that her children are grown, she has encouraged them to create advance directives.

“When my son turned 18, we had a conversation.  It’s so important to make end-of-life decisions when you’re well and thinking clearly, and calm.  I knew how fragile life could be.  There’s nothing to guarantee what’s going to happen tomorrow or what won’t happen tomorrow.  Signing an advance directive should be as routine as getting a driver’s license.  It shouldn’t be any more complicated than that.”