Rory’s Story: Person-Centered Care Must be our Goal

By Lisa Freeman


In 1991, my 37-year-old husband, Rory, went into the hospital following a back injury.  We had two young children and surgery was recommended to prevent paralysis, which we were told was otherwise inevitable.

What should have been a six- to seven-hour operation to relieve thoracic spinal compression lasted almost 19 hours.  Over the next weeks, we realized that Rory was paralyzed from the waist down, he had hypoxic brain damage and a MRSA infection in the spinal canal requiring a number of subsequent surgeries.

But right after surgery, we were not told anything.  In fact, the very short operative report essentially said that everything had gone fine, the operation was completed, the instruments were counted three times and Rory was closed up.  We were stunned by the outcome and our lives were turned upside down.

Patient-centered care

Over the next 18 years, until he died in 2010 from numerous complications of that surgery, we experienced many hospital stays because of infections that came and went and related injuries and illnesses that he incurred.

We saw the good and bad, and from it, we also learned first-hand what is important to the patient in terms of their experience.  We learned that person-centered care is not an option, but the only kind of care that makes sense – from everyone’s perspective.

The IOM (Institute of Medicine) defines patient-centered care as, “Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”

I would take that a step further because I believe that often what is being provided, with the best intentions, is patient-focused care – care that is to or for the patient, but not always with the patient.

And it is the “with” that makes care patient-centered.  It is an individual mindset and a system culture that causes each person involved in health care to make sure that the patients’ voice is heard and considered in their own care plans, in facility design plans, in the hospital board rooms, and everywhere where services are provided to, for and with patients.

When the patient/family is not part of the care team, critical information can be missed, outcomes that are not expected can occur and lives can be forever changed.

When the patient is not heard

During one hospital stay, Rory’s nurse would not take the time to go over how they would transfer Rory into an ICU bed.  Even though we had years of experience doing transfers and dealing with the unexpected, she did not see the importance of communicating with us.  The nurse firmly told my daughter and me to go to the waiting room – she knew her job and did this all the time.

About thirty minutes later, an ICU doctor and a medical student came into the waiting room.  The doctor introduced himself and he introduced the person with him – the hospital chaplain.  It seems that they had taken Rory’s oxygen off for just the moment that it would take to transfer him, he had spasmed and caused the nurse’s hold of him to give. She sprained her arm and he was without oxygen for longer than he could tolerate!

He had coded and was now intubated.  Had that extra moment been taken before the transfer, to go over the plan with the patient and the family, this may have been avoided.

The value of patients and families as equal care team members

The patient is the only member of the team who has been there the whole time and has the whole story. When patients are partners in health care, there is a lot to be gained.  It makes sense that care choices and treatment decisions should be made with the patient.  It is vital to improving patients’ health outcomes.

In fact, the Joint Commission, a nonprofit organization that accredits health care organizations and programs in the United States, has found that each year, communication is one of the leading causes of sentinel events – unexpected occurrences involving death or serious physical or psychological injury.

When the patient’s voice is heard

During another hospitalization, we had a very different experience upon admission to a local, regional hospital that had a very patient-centered culture firmly in place.  We thought that his original spine infection was recurring.  The floor nurse greeted us and asked how often I thought I would be there.  I told her that I would be “moving in” with him.

Imagine how surprised I was when she said, “Then we will put him in a double room so that you will have your own bed and can get sleep at night also.”

I was accustomed to sleeping on straight back chairs in other hospitals.  Next, she let us know that his medical chart was available to us at the nursing station and we were free to take it to his room to review it.  Furthermore, she would answer any questions, and make any notations or any additions that we had.   We were equal members of his health care team!

Then came the big challenge:  Rory needed an MRI.  He was claustrophobic, he couldn’t breathe well on his back and that position caused his pain levels to elevate, and already had hypoxic brain damage.  How were we going to do this?

A team meeting was called with Rory, me, his nurse, an anesthetist, and a person from the patient relations department.  We devised a plan.  I would sit with the anesthetist and “monitor” what was going on.  Rory was put into twilight and when I noticed his body twitching, I told the anesthetist that he was starting to feel things, and she increased the anesthesia.  When his oxygen levels were going down, she would tell me that she was going to reduce the anesthesia.  I was able to see that he was doing OK.

The MRI went well, there was no infection and Rory avoided an unnecessary course of IV antibiotics, which is what would have been done without the MRI.  Teamwork with the patient and family allowed this to happen.

What happens to the patient experience when patients are actively engaged in their care?   We see that critical information that only the patient knows is communicated.  There are better health outcomes since the patient has a vested interest in their health because they are part of the care. There is higher patient satisfaction because we like to be respected as people first and patients second. And there are lower health care costs as a result of less unnecessary procedures, better follow-up, and less readmissions.  This sounds like the objectives of the triple aim are being reached.

What can YOU do to change the status quo and make patient care more person-centered?

We need to support and educate patients, thereby empowering them, and then, they need to be included.  We should use communication tools such as National Quality Forum’s Patient Preference Passport and the American Board of Internal Medicine, and Consumer Report’s Choosing Wisely Initiative materials, amongst others, which are available and can be used by providers so that informed health care treatment decisions can be made in full concert with the patient.

What can be done to engage patients at all levels and in all aspects of health care? 

We must all begin thinking outside of the box, we have to push the envelope.  This type of culture change, however, will only happen if there is buy-in at the top levels of our hospital systems.

Everyone can do something to change the culture of health care, one person, one action at a time.  This paradigm shift will only be successful if patients and their families are engaged at every level, and in every aspect of health care, not only in our own personal health care.

Lisa Freeman is the executive director of The Connecticut Center for Patient Safety, a non-profit that works in communities, within our healthcare systems, and with elected officials to improve the quality of health care and to protect the rights of injured patients through education, accountability, and advocacy.


As presented by Lisa Freeman at the Hartford Business Journal: Healthcare Heroes Award Luncheon


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2 Responses to Rory’s Story: Person-Centered Care Must be our Goal

  1. Pingback: Connecticut Center for Patient Safety, LLC | A Voice for the Health Care Consumer

  2. Pat Mastors says:

    Such a well-written, informative and inspiring story. Thank you for all you do for patients and families, Lisa!

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