Patient and Family-Centered Care in
Neurocritical Care – A Patient and
Provider Perspective
By G. Morgan Jones, PharmD, BCPS, BCCCP, and Vanessa Chambers
From the Eyes of the Provider
No patient has left a lasting impact on my
career like Nick Chambers. Nick was a 25-yearold
transferred to our center after developing
sudden onset vomiting, irritability and
tremors. He was found to have an intracerebral
hemorrhage (ICH) with significant vasogenic
edema and underlying ischemic lesions,
although his imaging was very atypical. After a few days of
evaluation and researching of the literature, our team determined
that Nick’s imaging was consistent with case reports of isolated
CNS mucormycosis infection. The infectious diseases team was
consulted, along with a second opinion given our relationship
with Mayo Clinic, resulting in agreement on the diagnosis.
Daily, I watched as Nick’s parents, John and Vanessa, faced
incredibly difficult situations as complications such as
bacteremia, pneumonia, respiratory failure, septic shock and
sympathetic storm occurred. Interacting with them reminded
me quite a bit of my own personal experience with a critically ill
loved one. In 2013, my wife spent 44 days in the hospital after a
car accident, which has forever impacted my approach to patient
care. One of the hardest parts of my own experience was the
lack of information I received about her care, rarely getting more
than a three-minute update where my questions were not clearly
answered and my concerns about pain control were brushed
aside. It was a feeling I wanted to ensure that no patient or family
member in our care ever felt. As I started interacting more with
Nick’s dad, John, I realized that one of John’s biggest stressors
was feeling like he didn’t really understand Nick’s treatment,
even though our team was communicating well with him. From
that day forward, I tried to ensure that John knew detailed
information with regards to medication therapy and our team’s
plans. I also shared my own experiences regarding my wife’s
care — emotional struggles, insurance issues and balancing her
care with my other responsibilities. I saw this as an important
opportunity to use my own experiences to provide care for Nick
that was centered on helping his family cope with and understand
what Nick was going through.
After a long and complicated treatment course, Nick began to
improve beyond our original expectations. When our team told
his parents that it was time to leave our unit, I immediately
recognized the feeling of hesitation wash across his father’s face
and remember feeling the exact same way with my wife. Similar
to Nick’s family, we had become comfortable in our room at the
hospital and used to the consistent group of providers caring for
her, so hearing the word “transfer” brought on unanticipated
anxiety. Our team ultimately decided to manage Nick’s treatment
during rehabilitation since this unit was located on our hospital
campus. Daily, I ventured over to see Nick and continued to
evaluate all of his medications. I also continued to provide
emotional support to his family.
Eventually, Nick was transferred to the Shepherd Center for further
rehabilitation. To help make the transfer process more efficient, I
developed a list to explain why each medication he was prescribed
was being used as well as key medication use parameters. This
list, and my contact information, was shared with the medical
staff there. I spoke with the providers there numerous times and
I also was able to help Nick’s parents understand why they were
making certain treatment decisions that may have differed from
our approach at Methodist.
Since Nick has returned home, I’ve maintained regular
communication with his family. We frequently check in with each
other to see how things are going and to arrange follow-up for
any issues that have arisen. At times, our conversations remind
me of how I felt after my wife plateaued in her recovery. We
reached a point where the doctors discharged us from their care,
meaning that we felt somewhat lost in the system when new issues
arose. I felt that I could potentially play a role in minimizing this
feeling for Nick and his family. In caring for Nick and his family,
this has taught me so much about how to use my own personal
experiences to positively influence others. I truly have learned how
far outside of being a medication expert my role as a pharmacist
can expand. Regardless of a person’s role on the healthcare team, I
believe we all have an opportunity to provide family-centered care.
I will always remember Nick and his family. In fact, my first son
shares a birthday with John, which we both felt remains a fitting
reminder of our relationship.
A Family Perspective
Our nightmare began on a Tuesday in November of 2015. Our
son, Nick, woke up and stumbled to the bathroom, then began
vomiting and complaining of a horrible headache. When he
became incoherent and unsteady on his feet, my husband, John,
and I knew it was time to get him to a hospital fast. A head CT
revealed a small bleed surrounded by swelling, and we were
quickly transferred to the neurocritical care unit (NCCU) at
Methodist Hospital in Memphis.
Over the next six weeks in the NCCU, we lost track of the times
we were told that there was nothing more that could be done for
Nick. He had been diagnosed with mucormycosis, which had
caused his strokes. We learned how deadly this fungus was and
felt helpless knowing that it was eating its way through our son’s
basal ganglia. I spent hours at Nick’s bedside holding his hand,
thinking that if he was going to die, I would at least be there for
his last breath. Many nights I drove home crying hysterically,
praying for a miracle, planning Nick’s funeral and questioning
if I had the strength to lose a child. Deep, soul-wrenching pain
my husband and I experienced day after day as we watched Nick
endure numerous complications and countless procedures. Each
test was accompanied by a stomach-dropping dread of wondering
what devastating news we would face today.
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