Doctors need to partner with families to save lives

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“Hey, doc, you’re killing me.” Or, more specifically, us.

A recent report from researchers at the Johns Hopkins University School of Medicine points to medical errors as the third leading cause of death in this country. Despite the many safeguards put in place by the government, hospitals, and doctors, themselves, more than 250,000 people a year in the U.S. die from hospital-acquired infections, wrong-site surgeries, medication mistakes and a host of other missteps with deadly consequences.

What’s a patient to do? Flat on their backs and often disoriented, they are literally in no position to speak up on their own behalf.  That’s where family or close friends come in. Every hospital patient needs an advocate — someone who knows the patient’s medical history and can interact effectively with doctors and nurses when they observe or suspect a problem.

The need for an advocate is underscored by the fact that most hospital patients are not seen by their primary care physicians. Hospitalists frequently manage care. They may be excellent doctors, but they have no history with their patients.

On top of that, we see a proliferation of specialists and sub-specialists that can lead to an impersonal, fragmented medical system driven by metrics and policies that hardly seem patient friendly.

And while medical care may be more personalized in areas such as cancer treatment, it is more impersonal when it comes to corporate medicine and Medicare or other insurance rules. Technological changes bring remarkable advancement but force medical professionals to spend more time in front of computers and less time with their patients.

The yin and yang will undoubtedly be with us for many years to come. In Chinese philosophy and medicine, these polar opposites are interdependent; they can’t exist without each other. In hospital care, I would argue, the professional medical team, the patient, and the advocate are interdependent, too. To be successful, they must work together towards a common goal.

One thing I learned as my husband’s advocate is that my role is as important as the doctors and the nurses; it’s just different.

I have been advocating for my husband for more than 24 years through 14 separate hospitalizations of varying lengths and severity. Some of have been truly life-and-death situations.

Once I stopped a technician from performing an MRI. My husband has a pacemaker which could have stopped working because of the magnetic resonance. Another time I called in an intensivist to consult when I believed my husband was dying, and everyone else was focused on organs and systems they thought were improving. He made changes that really did save my husband’s life. On several occasions I have inserted myself into medical rounds, providing essential background information missing from the files. At least once I insisted on more tests when I knew something significant was being overlooked.

I don’t have medical training. What I do have is a big-picture understanding of how to work with doctors and nurses within the hospital environment to get the best care for my husband. I also have an appreciation for diplomacy mixed with a healthy dose of chutzpah — that wonderful Yiddish word meaning personal guts and gumption.

All hospital patients need a family member or close friend to speak up and connect the dots when doctors don’t communicate well with one another; to become an integral member of the health care team, participating with doctors and nurses in decision-making; and to trust her instincts when something is wrong. Knowing the patient better than anyone else in the hospital counts for a lot in getting the best care.

On the other side of the equation, medical professionals need to respect and make time for advocates, answering questions, providing jargon-free information and creating space for decision-making and discussion. Families must have education and understanding in order to be truly effective partners in the process. That includes a full grasp of discharge plans and instructions.  Misunderstanding and miscommunication too often lead to readmission—an outcome no one wants to see, least of all the patient.

The Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services, developed a guide to promote stronger engagement among medical professionals, patients and families to improve outcomes in hospital safety and quality.

“Working with patients and families as advisors at the organizational level is a critical part of patient and family engagement and patient- and family-centered approaches to improving quality and safety,” the guide counsels. “Patient and family advisors are valuable partners in efforts to reduce medical errors and improve the safety and quality of health care.”

Our health care system may be far from perfect. At times, it seems complex, opaque and frustrating. Collaboration between medical professionals and families can make a qualitative and quantitative difference for patients. They, after all, are the ones with real skin in the game.

Bonnie Friedman is the author of Hospital Warrior: How to Get the Best Care for Your Loved One.

Image credit: Shutterstock.com

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