1. Fahlberg, Beth PhD, RN

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Drip, drip, drip...


Sarah* thought she heard rain. But it seemed too close. Inside, right next to her. Something wasn't right.


Her husband Hadid got out of bed and the dripping got faster. "I'm all wet," he said.


She fumbled for the light and gasped when she saw Hadid covered with blood. It was pouring out of the hemodialysis arteriovenous (AV) fistula in his arm. She jumped out of bed, grabbed a towel, and tried to stop the bleeding with one hand while reaching for the phone and dialing 911 with the other.


The 911 operator had trouble understanding Sarah because of her accent and her shaking voice. But the word "blood" came through loud and clear. Sarah tried to manage until help arrived, talking to him constantly and trying to get him to talk to her. It was the longest 10 minutes of her life. Fortunately, emergency responders arrived in time and Hadid recovered.


Sarah had never been told that this might happen. She felt so unprepared. She wished she'd been taught about this kind of emergency and what she as his initial emergency responder should do.


Sarah and Hadid were both well-educated scientists who were highly engaged in learning all they could about his healthcare. Working together to manage his chronic kidney disease, heart failure, diabetes, and other health issues, they made a great team, each with specific strengths and responsibilities. She was an expert on keeping track of his appointments and noticing even subtle changes in his signs and symptoms. He was an expert on his medications.


Managing this patient's complex healthcare was a true team effort. So why was Sarah in the dark about something as serious as the risk of hemorrhage from the AV fistula? A review of Hadid's discharge teaching experience offers some answers.


"TMI" and other pitfalls

The nurse who taught Hadid about his medications at discharge had started from scratch as if he knew nothing, when all he needed to know was what had changed from his normal routine. All the other details were "TMI"-too much information. Frustrated, he stopped paying attention to her, feeling that she was treating him like a child. The nurse didn't recognize that he was an expert on his healthcare. He could have taught the nurse a thing or two!


The nurse went on to tell Hadid about the signs and symptoms to watch out for and what to do if he had any problems with bleeding. But she didn't think to include his wife, his first responder in a crisis.


The nurse finished by telling him when his follow-up appointment would be. He said he understood. Believing she'd done her job of educating this patient, the nurse documented her teaching and sent him home-even though very little actual learning had taken place. And the time spent arranging his follow-up appointment was wasted because Sarah hadn't been consulted about their schedule.


A better way

Patient- and family-centered care helps to avoid the type of problems Sarah and Hadid experienced. It's been defined as "an approach to the planning, delivery, and evaluation of healthcare that is grounded in mutually beneficial partnerships among healthcare providers, patients, and families."1 Practitioners of patient- and family-centered care, recognizing the vital role that families play in ensuring a patient's health and well-being, include family members of all ages (with the patient's consent) in care planning and interventions.


Two years after her husband's hemorrhage, this episode continues to weigh heavily on Sarah's mind as one of the most traumatic events of her husband's last year of life. She wishes she'd known more about the possibility that this might happen and what to do if it did. Sarah has told me that a patient- and family-centered approach to teaching would have meant less anxiety for them both and left her with better memories of his last year of life.


Practice tips

Do you consistently include family members in patient education and recognize the specific expertise and roles of each member of the family care team? Here are some ideas for incorporating patient- and family-centered education into your practice:


* With the patient's permission, include family members, caregivers, and/or others who live with or help the patient in patient teaching.


* Schedule the patient education session a day or two before discharge so family members can plan to be there. This also lets them get everything ready at home ahead of time rather than scrambling when the patient is discharged.


* Be prepared to learn from the patient and family. Start by assessing what they know and do now. Then problem-solve together to find solutions that will have the greatest impact on the patient's health, yet will fit in well with what the patient and family are already doing.


* Ask about patient and family priorities. What's important to them? What do they want to learn about? A patient who can link recommended interventions to a valued outcome will be more motivated to stick to the treatment plan.


* Explore the patient's and family member's healthcare experiences and current concerns. What led up to the hospitalization? How did they feel when the patient was admitted? What made them feel better-or worse? What are they most worried about now? When patients and family members can relate their previous experiences to their immediate concerns, they're more likely to understand, remember, and apply the information.


* Find creative ways to include all who should be involved. Consider using technological communication options such as the electronic patient portal, e-mail, and speakerphones.


* If permitted by facility policy, consider ways to record education sessions so patients and family can review the information later; this is also a good way to document the teaching and the patient and family response. Although this will require a lot of work from organizational, technology, and legal perspectives, it needs to become the standard of the future.



In my next column, I'll challenge you to think differently about the goal of patient teaching-not simply patient adherence to the plan of care, but rather the collaboration of patient, family, and caregivers to create realistic strategies to achieve mutually valued goals.




1. Institute for Patient- and Family-Centered Care. 2010. [Context Link]


* Patient and family names have been changed. [Context Link]