A Family Caregiver and Patient Safety Advocate Says: We Don't Need to Reinvent the Wheel, But We Need to Roll on the Ones We Have... Collaboratively

Nov 16, 2011, 4:22 PM, Posted by Carol Compas

My broken health care journey begins with a call from my sister on August 18 at 5:15 p.m. I am beginning to wrap up my busy workday when I take a call and hear a tearful plea along the lines of: “Mother has been in a wreck and they are asking for the next of kin.” I leave work, agreeing upon a designated meeting point so we can ride together to reach our mother in the most timely fashion. Our “normal” routine would have safely delivered us home for dinner with family, but this evening our routine will be at the mercy of the health care system, starting in the emergency room.

As we struggle to safely navigate rush-hour traffic, we know the normal one-hour drive is looking more like a two-hour journey to reach our mother—not so timely in light of the situation. As we drive, we tag-team our cellphone communication between family, friends and, in this case, care providers. The fortunate thing for my family is, I have a 25-year career in intensive care, emergency medicine and quality improvement. So, as my sister is responsible for family and friend notifications, I am taking on responsibility for a rapid-cycle health care plan for mother. I phone the ER to make sure they are aware of the head injury en route, review her medications, list allergies and highlight the pertinent medical history. The charge nurse assures me she has documented my information and will pass it on once Mother arrives. I’m somewhat assured things will operate accordingly since I feel confident I am on her health care team. My sister and I arrive an hour after Mother does, are quickly escorted to her side, and find her calling out for me.

Our primary nurse is a former acquaintance who recognizes her trauma patient’s daughter and who recognizes that yes, I am on this health care team. Initial assessments complete, we are confirmed for a closed head injury with massive facial lacerations. While we wait on the trauma doctor, trauma surgeon, neurosurgeon and operating team, I ask for a quick review of Mother’s electronic health record (EHR). Amazingly, it does not reflect my rapid-cycle health care plan consultation with the charge nurse. I thought I was on the health care team, but in the crisis at hand, I will happily repeat myself to ensure high-quality care for my mother. The CT results are back and we are now facing a cranial bleed, orbital blowout, sinus fracture and multiple broken ribs. Did I hear something about waiting on the operating room team? Why are we going to surgery? Why is transport here to take Mom to the ICU? Where is the trauma surgeon and team? Where is any doctor?

There is an air of panic since it is has become abundantly clear that I am not on this health care team. All decisions are being made behind the curtain. All of my training for patient safety, quality improvement and person-directed care affirm that I should be on this health care team. I think of Sue Sheridan, a nationally renowned patient safety advocate, saying something along the lines of “Never give up and be relentless” for safety. I put her heartfelt lessons into action and assemble the interdisciplinary team. We confirm that Mother needs rapid-cycle medication reconciliation, since someone just mentioned a drug that is not on her medication list. Mother’s list reveals that, despite the wonderful new innovative tool in our hands, the EHR, we don’t always have time to ensure accurate information or review it in a crisis.

In stable condition, Mother is transferred from the emergency room to the ICU to await surgery to repair her facial lacerations. It is clearly necessary for me to repeat the majority of pertinent information to the admitting nurse, ICU team and new hospitalist to ensure everyone is on the same page. Another thought racing into my mind: Has anyone checked Mother’s blood sugar? She is diabetic, and we desperately need to post another sign—in addition to the alert bracelet—to avoid her left arm due to her mastectomy. I am assertively joining our new health care team in the ICU since I have been asked to leave because it isn’t “visitation time.” Fortunately, our nurse recognizes the value of a holistic approach and appreciates the family’s collaboration with the team. Mother’s pleas for her family help me remain diligently by her side while waiting on the operating team. The ICU team collaboration with her family caregivers brings a sense of calm to the situation.

Our journey ultimately included pretty much every layer of the acute-care setting and home care, with a trial run at assisted living. Every layer of the health care system that propelled my family into an unplanned journey validates the critical need for a well-trained workforce along with a collaborative model to ensure quality of care and life.

Advances in health care toward quality have taken leaps and bounds over the past decades, especially in light of numerous patient safety and quality initiatives. Diligent attempts at patient education still fall short of a true patient-directed care (PDC) model. PDC is referred to under many other names, but the concept has deep roots in a holistic model of care, which puts the patient at the center of the team to ensure not just physical care but mind, body and spirit care. Consumers expect a higher degree of care but often do not know how to compile resources to ensure care coordination across the continuum to achieve an individualized, higher degree of care. Care coordination begins with a well-trained workforce—not just on disease management for physical care, but also on care coordination through diligent collaboration.

During times of crisis or rehabilitation, who should be in charge of Mom’s care? The answer seems so simple, we would all agree: She should be in charge of care of her care. However, the reality is, she was generally the last person in charge of her care. Despite her traumatic brain injury, she was still able to express the basic need for mind, body and spirit care. If not for my relentless pursuit to stay on the health care team, our outcomes could have been different. Not everyone has a health care provider in the family to tackle the complexities of the health care system. EHR appeared to be one answer to streamline communication failures that lead to health care errors; however, time still challenges our ability to decipher the EHR. Face-to-face communication and collaboration are vital.

What is the solution? The best approach is based on ongoing collaboration between providers, patient and family. Open and transparent communication is essential. In absence of the patient’s ability to speak for themselves, a designated advocate assumes the role. There are many innovative solutions emerging as best practices to ensure the highest degree of quality. The answer simply remains with collaboration among the patient, family and all provider levels. Providers, patients and families can collaboratively design an individualized plan of care, serve as advocates for one another and maintain active quality surveillance. I want to share the leading resources that helped me mold my experiences and training as a registered nurse and patient advocate.

As my mother’s rehabilitation journey continues, I feel that she received quality care because I learned from those before me how to be a diligent family caregiver and advocate for patient safety. We don’t necessarily need to always reinvent the wheel, maybe we just need to roll on the ones we have...collaboratively.

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This commentary originally appeared on the RWJF Human Capital Blog. The views and opinions expressed here are those of the authors.