It had been such a great day; one of those rare times between treatment courses when our son was well enough to be home for a few days. We knew the conditions: If he developed a fever, even a slight one, we would have to return to the hospital immediately. We all kept our fingers crossed and enjoyed our time together, hoping for the best.
By bedtime, I could tell his energy was depleted. He curled up in bed beside me and we watched a few of his favorite programs. I knew he was tired and would probably fall asleep quickly, but he didn't. As the night wore on, I tried most everything to help him settle down. Nothing seemed to work. I could sense it coming and predicted that by morning, we would need to be back on our way to the hospital. Unfortunately, the only thing predictable in the world of childhood illness is unpredictability. Soon after midnight, I gathered our "go bag," and we were off to the hospital with a spiked fever.
With a plan of action already in place, we entered through the emergency department and within a couple of hours, were admitted to a room.
We settled into what had become our home away from home for the past several months. We knew the faces, sounds and smells. It was all too familiar: 5C. Pediatric Cancer Unit.
I pulled his favorite blanket out of his bag and wrapped it around him as he fell asleep on my chest without the slightest hesitation. I was exhausted from the lack of sleep and stress from the urgency of the situation. Within minutes, the nurse walked in and asked me to get him up, that he needed to be weighed. Even with my account of the preceding events, she insisted that I wake him: Treatment would begin first thing in the morning as soon as the doctor arrived, and his current weight would be needed to determine medications. I was too tired to fight but my objections were very obvious. "It's protocol," was the only reason offered to me for why I must disturb this child, in the middle of the night, who clearly needed his rest. I reluctantly did as instructed, although the mother in me knew that at this point, he needed sleep above anything else. I felt the hours of crying and fussiness afterwards could have been avoided simply by weighing him a little later.
Let me be clear here: I believed in our medical team. I respected our doctors, nurses and the support staff. I trusted them completely. My son received the best medical care available and I wouldn't trade my choices for anything. However, I do believe that sometimes, "protocol" gets in the way of real, quality care.
Operating a hospital where family and patient-centered care (PFCC) is the focus, is crucial for the overall well-being of the family, especially those in long-term or critical situations. However, just as I can tell story after story of times when protocol unnecessarily superseded patient comfort or needs, I can equally recall instances when my son's life was saved by the hands of the very professionals who determined those protocols. The key is to ensure flexibility in policies, procedures and practices to meet patient needs. When clinicians, patients and families collaborate, everyone benefits and the patient receives the best possible outcomes.
This type of collaborative approach goes much further than just comfort. Parents already feel helpless when our children are critically ill. So much is beyond our control. Having direct involvement in our child's care gives us a voice that the traditional model tends to silence. Through PFCC, mutual respect develops between parents and providers that breaks down barriers, builds trust, and opens the door for honest conversations.
The Institute of Patient- and Family-Centered Care, (ipfcc.org), defines PFCC as "an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, & providers that recognizes the importance of the family in the patient's life ('family' being broadly defined)." The approach brings the patient/family members into the care process, collaborating with them and honoring their voice/perspective as significant. It is health care that transcends mere treatment of patients; it cares for families. The Institute of Medicine and other national medical community leaders have made significant contributions to the effort.
The PFCC promotes four core principals: 1) respect and dignity, 2) information sharing 3) participation and 4) collaboration. The commitment to dignity and respect recognizes the strengths and abilities that each family brings to the table. It entails listening to the patient's definition of who and what is important to them in their hospital care. The sharing of information provides greater transparency and opportunities which can be better realized by MDs, nurses and others participating in bedside rounds and actively engaging the patient and families in their care. PFCC requires a shared role for patients and families in joint participation of their own care. This means increasing the family's access to the patient and professional caregivers by eliminating "visiting" hours and giving the family access to the patient around the clock.
A parent of a child immersed in PFCC capsulizes the method best -- "We were given the gift of confidence knowing every avenue had been explored, every concern heeded, every question answered, every element of information shared. PFCC is not merely a method; it is health care in its truest form: people caring for people and providing healing along the way."
Health care guided by the human condition. Is there any other way?
Visit http://ipfcc.org/ for more detailed information on family- and patient-centered care.