January 13, 2011 | | Comments 0
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“No decisions about me without me!”

By Wendy Leebov, Ed.D.

Harvey Picker, founder of the Picker Institute, coined this phrase many years ago.  In my view, it articulates so simply and powerfully the key principle driving patient and family-centered care.

It’s exciting to see the epidemic of commitment to patient and family-centered care! The words ‘patient-centered,’ ‘engagement,’ and ‘partnership’ are everywhere, as are bulleted lists of key principles, factors, and dimensions.

Since I’m very concrete, to better understand and embrace these concepts I’ve been reflecting on personal experiences that make these concepts come alive.  In some of these experiences, these concepts were glaringly missing and the impact was profound and disturbing. In other instances, these principles were in full bloom and the impact was profound and gratifying.

About Linda: My sister was deathly ill and in a coma in an ICU for several months. My mother and I did a vigil by her bedside. It was hard to hear the caregivers talk around Linda, as if she weren’t there. To caregivers, Linda was a bedridden body with wires connected to every orifice. It hit me that caregivers didn’t talk to her much. And when they referred to her, they called her “she”, not “Linda.” It pained me that they couldn’t see the person within the patient. It was upsetting.

That night, I made a big poster called “About Linda.” I listed her passions, her legal specialties, her favorite charities, her fabulous cooking, the fact that she was a Marvin Hamlisch groupie, and her excitement about soon becoming a grandmother for the first time. And I taped on some photos of Linda dressed to the teeth. The next day, I hung this poster on the wall near her bed. Lo and behold, as caregivers entered the room, they couldn’t help but notice the poster and read it. Then, they immediately started talking to Linda and calling her by her name. They related to her in a personal way. It was such a relief for my mother and me.

Personalized care and engagement? Why don’t caregivers routinely interview the patient (and if not the patient, then their family) to find out about the patient as a person? The care will be better; patient-centered.  The family will feel less anxious and more trusting. How can we provide “patient-centered” care if we know nothing about the patient?

About Eddie: My brother-in-law Eddie is in the hospital as we speak—plagued by a recurrence of a severe leg infection.  The pain is debilitating and his biggest concern. Eddie is also intent on going home ASAP and asks every doctor and nurse, “When?” Doctors come and go at unpredictable times, and Eddie (like many heavily medicated people) isn’t so great at remembering the details of what the doctors say. My sister, central in decisions that Eddie faces, never knows when the physician will show up. And unless she is sitting there, she has no idea what’s going on. So, my sister has to chase down the doctor for a cursory report about Eddie while the doctor is on the run.

Patient-centered care, partnership, and engagement? Why don’t caregivers post on the whiteboard the main ongoing concerns preoccupying Eddie and Linda?  They could post something like this:


  • Pain
  • Going home
  • Keeping Linda informed

Then, doctors and nurses can proactively ask Eddie about his pain, acknowledge and address his desire to go home, and check to make sure Linda has up-to-date information about Eddie’s condition and options. They could say things like:

  • “Hi Eddie, how’s the pain this morning?”
  • “I realize you’re really eager to go home. There are options for how you can receive your IV medication.  Let’s talk about the pros and cons and see what you think. OK?”
  • “I’m sorry I missed your wife this morning, and I know you want to be sure she’s in the loop about your condition and options. I’ll be back at around 4 this afternoon in case she wants to be here. Or, I’ll ask my assistant to set a time for a short phone call with her. Will that work?”

The concerns of the patient and family would be addressed repeatedly and proactively by the care team. How can we provide patient-centered care if we don’t solicit and proactively address the patient and family’s main concerns?

About my dad: My dad, may he rest in peace, was in a nursing home with 24-hour care for six long months before he died. He had brain atrophy and was highly agitated and miserable; aware but completely unable to control his behavior. Needless to say, my mother, sister, and I were distraught beyond words when various medications failed to comfort my dad. We were a very upset family for weeks and months. The nursing staff largely ignored us because of my dad’s 24-hour care (which they required). Then one day, the head of nursing stopped in and asked to meet with me. When I went to her office at the appointed time, I thought maybe she would acknowledge what we were going through and provide some understanding or wise counsel about coping. Instead, she said, “I know your family is having a very hard time watching your father. I just want you to know that if any of you do anything to end his life prematurely, it will be treated as a criminal act.” I sat there stunned, dizzy, and speechless. And then I walked out.

Two days later, my dad’s swallowing reflex failed and we were told that the doctor would be inserting a feeding tube. My mother was distraught. My parents had discussed end-of-life options and my dad had been vehement that he did not want to live on when he no longer had quality of life. After a family meeting and long talk with our rabbi, my mother decided that she did not want the feeding tube inserted. I told the appropriate people. And the head of nursing came in (only the second time in six months) to say that she thought we should realize that without the feeding tube, my father would “starve.” My mother collapsed. “Am I doing the right thing?  Am I starving your father?”

Patient and family-centered care, supportive communication, respect for family wishes, partnership with patients and families? Good grief, no.

One last story: I’m a 12-year, 11-month, and 6-day breast cancer survivor. When I was first diagnosed, I read everything you can imagine about breast cancer and options. I was glued to the Internet. I read about herbs and juicers and exotic miracle remedies in Mexico. I was drowning in information. I wanted to be sure I was doing everything possible to improve my life chances. Everything. One day, after patiently inviting my questions and addressing them, my surgeon said, “Wendy, I know you want to do everything you can to survive this. And I personally aim to make a toast at your hundredth birthday party. I respect your aggressive search for everything that can help you, and in fact, I’ve learned a lot by looking into your questions. At this point, I’m concerned that you may be overwhelming yourself with options and information and becoming even more anxious. I’m wondering, at this point, would you consider trusting me and the others on your care team to look out for your best interests and guide you, so you can turn your attention to taking the best possible care of yourself? I sighed with relief and this ended my frantic searching and enabled me to shift my attention to making the most of my get-well plan.

Respect, caring communication, partnership? Yes.

Patient and family-centered care. As we study it and try to make it happen, reflect on your own experiences with yourself and your family and concretely connect to the lofty words that describe a commitment whose time has come.

Click here for an activity for generating personal stories that make the concepts inherent in patient-centered care come alive.

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Filed Under: Healthcare communicationHot topics


Wendy Leebov About the Author: Wendy Leebov is a passionate advocate for creating healing environments for patients, families and the entire healthcare team. A mission-driven expert, Leebov provides outcomes-based consulting services, culture change strategies with healthcare organizations, training and tools for enhancing the patient and employee experience. With more than 30 years of experience and skills in communication, training design and delivery, she is known for making hard skills accessible and motivating people to stretch and apply skills which set them apart. Author of 12 books for healthcare, Wendy has produced two groundbreaking video-based skill building systems that educate and empower all staff to deliver the exceptional patient experience consistently by excelling at caring communication. Wendy writes a free monthly e-newsletter - HeartBeat on the Quality Patient Experience - packed with concrete tips and tools for managers who champion the great patient and employee experience. Visit Wendy’s website for more great tips and tools.

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