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What it takes to navigate healthcare: Engagement, compassion

May 8th, 2014

by Sherri Loeb

Patient engagement, patient-centered care, shared decision-making, patient experience and centers of excellence--all the latest buzzwords in healthcare. But do our industry leaders really understand what they mean or how to implement them, and how critical they are not only to the patient and family, but also to the ultimate goal of patient safety? From my recent experience I would say it's rare.

I'm a nurse of 30-plus years who has worked in various healthcare settings. I have always been patient-centered and treated each patient as if they were family. Then, on Aug. 4, 2011, my life changed dramatically when Jerod, my husband of 25 years, as well as an internationally known patient safety and quality expert, was diagnosed with stage IV metastatic prostate cancer. Life as we knew it ceased to exist.

Overnight we went from being on the giving side of the healthcare equation to the patient side. We needed all the patient engagement, patient-centered, compassionate care and shared decision-making we heard about--not to mention patient safety and quality. After all, that's the goal of all healthcare institutions, isn't it?

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Our patient-care odyssey began abruptly--to say we were shocked and disappointed at our fractured healthcare system was an understatement. We sat by the phone for hours waiting to get an appointment with a specialist, tried to schedule diagnostic imaging to look for metastasis, waited for the results when they were often ready within hours, wandered through the maze of informed decision-making when it came to treatment, and then only heard options that insurance covered.

We were informed, educated healthcare consumers. We thought we knew how to navigate the system; but does anyone really know how to navigate a system that can't be navigated? Does healthcare leadership really care about patients or are they more focused on their financial bottom line? Do the insurance companies really care?

Why cover a $78,000 per dose chemo agent, but not the dressings for a peripherally inserted central catheter line needed for the chemo administration? Many things could be done at home for less, but aren't covered. Patients spend hours on the phone trying to get coverage for critical therapy only to be told no, instead of spending quality time with their family.

Then there was the almost constant lack of attentiveness to safety. Staff who didn't pay attention to systems and processes in place to prevent errors--no consistent hand washing and poor communication between healthcare team members and the patients, the people who needed the most communication. Weren't we there for treatment and help? Or were we a hindrance to their day ... outsiders who had entered a private, closed society? What about the doctors who rounded while standing outside the room and then sent in a resident to deliver the bad news because the attending has a meeting to get to?

Don't get me wrong. There were some very positive experiences:

  • Nurses who loved their profession and enjoyed caring for patients and their family members
  • A cancer center that offered a multitude of choices and clinical trials
  • An oncologist who was usually just a text away with honest answers, even if they weren't the ones we wanted to hear
  • The hospice doctor's and home care nurse's amazing kindness and tenderness, treating us like individuals and not just a disease as the end drew nearer

We have to change how we deliver healthcare. Will the Affordable Care Act change this? I worry it won't. What needs to change is for every individual involved in healthcare to realize this is a team sport that we're all a part of. We need patient and family engagement, shared decision-making and patient-centered, compassionate care--all of which will enhance patient safety and quality. If only we could convince leadership of that notion.

Losing my husband in October 2013 was the worst thing to happen to me, but out of that tragedy comes a passion to change healthcare and make a difference. If two highly educated healthcare professionals felt as lost as we did, imagine how the general public feels.

As Margaret Mead said, "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." We need to change the world, and my promise to Jerod was to continue where he left off.

Sherri Loeb, R.N., is patient engagement strategist at Emmi Solutions. She is a member of the Patient and Family Advisory Council for Quality and Safety for MedStar in Baltimore, Maryland, as well as a member of the National Quality Forum.

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