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What Patients And Families Can Teach Hospitals About Avoiding Harm

02/27/2017 02:29 EST | Updated 02/27/2017 02:29 EST
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a hospital visitor's hand holds a patient's hand in bed of a hospital ward. In the blurred background a young nurse is chatting to the ward sister about the patient's care.

A recent Canadian study for all provinces except Quebec reported that one in 18 hospitalized patients experienced avoidable medical errors in 2014 - 2015. In the U.S., it is estimated that 15 million incidents of hospital harm occur every year.

But what these figures cannot begin to capture is the emotional harm that is inflicted on both patients and families when preventable injuries occur. As I know from personal experience and from the work I am doing with The Center for Patient Protection, a patient and family advocacy I founded six years ago, this harm often comes in a succession of destabilizing waves.

The first wave is the emotional stress that accompanies the physical impact and pain of a medical error, whether it is a preventable fall, hospital-acquired infection, medication mix-up, misdiagnosis or surgery mishap.

These kinds of errors in the hospital setting can often be preceded by difficulties experienced by the patient or their family members in getting attention when they see a deterioration in condition. "No one would listen to me" is a frustration I hear recounted time and again by patients and families who were unsuccessful in getting earlier interventions.

And for their efforts to ensure the best care possible, many patients and families wind up being branded as "difficult" if they push their concerns too far. That can quickly give rise to further waves of emotional damage, such as being made to feel isolated or abandoned.

Another wave of emotional harm often occurs when explanations are sought from providers and clinicians after the error. Sadly, it is not uncommon for hospitals to

resort to what is known as a deny and defend position in order to thwart meaningful accountability and to keep patients and families in the dark. That approach rarely ends well and is a common trigger for litigation.

Finally, when there is no apology, and no evidence is demonstrated that the hospital has learned from its mistake, patients and family members can find it difficult to cope with the lack of resolution or closure for the incident. They can be haunted by unanswered questions and self-recriminations about whether they could have done more to protect themselves or a loved one or might have been more assertive in asking questions and demanding better care. This "if only" stage can last a life time.

I know these waves of emotional harm all too well, not just because I lived them myself following a horrific ordeal of medical errors inflicted on my elderly mother, but because I see them every day. Through our online outreach clinic at The Center for Patient Protection, patients and families around the world have been sharing their stories with me and seeking help in coping with the damage of medical errors and, especially, the emotional injury that accompanies them. It is truly patient and family engagement in action.

These experiences show that there is a huge gap between how many providers say they deliver patient- and family-centred care and how they actually deliver it from the perspective of those who have been harmed.

Each morning, I am greeted by an inbox full of the most heart-wrenching stories from patients, but more often from surviving family members, who recount incident after incident of medical errors that could have been prevented and emotional harm that should have been avoided.

Sometimes all people want is to be able to communicate what occurred and put that information into the hands of an advocate for better patient safety. A sympathetic ear can make a big difference when one has encountered a wall of silence and indifference from health-care providers, as so many injured patients and families report. In more complicated cases, I have spent weeks trying to help families get the information they need so they can navigate closer to a more satisfactory outcome.

It is difficult to adequately describe the level of emotional pain that grips so many families in the aftermath of medical errors. By the time they reach me with their desperate pleas for help and advice, which I have been providing free for the past half-decade, they have already been drifting in an ocean of unanswered questions, overwhelmed by the cold swells of disrespect and unfeeling responses from providers.

The personal toll is often staggering. I see many stories about grieving family members turning to drugs and alcohol because of their inability to cope with the aftermath of a medical error, or what they might have done to prevent it. Lost jobs, financial turmoil and marriage breakdowns are frequent. Threats of self-harm, and even suicide, can occur.

What is so alarming about all of this is not just that medical errors happen. All human organizations are fallible. It is that so many of our great healing institutions, rather than treating those who have been emotionally harmed, are adding needlessly to their pain and suffering.

Capturing patient and family experiences offers valuable teachable lessons that can help providers deliver safer care, reduce emotional harm and even saves lives. True, not every health-care organization is a teaching hospital. But every one can and should be a learning institution.

Yet in so many situations that are reported to me, there is a troubling lack of interest on the part of the providers involved in learning from their mistakes. This just adds a further layer of disrespect and insult on top of the emotional harm patients and grieving families struggle with.

As the world renowned patient safety advocate Sir Liam Donaldson, M.D. writes "Indeed, it is striking how a catastrophic event such as an avoidable death within a healthcare organization infrequently leads to transformational change in the approach to safety...."

From improving clinical listening skills that can help detect early indicators of adverse events to turning hospital complaint departments into genuine tools of healing and compassion and making DNR practices safer and more patient- and family-friendly, each story I see carries with it potentially transformational lessons for every provider and clinical team.

Our health-care systems and professionals are true miracle workers. Their heroic efforts to sustain and improve life occur ever day. Delivering healing care to patients and families in the aftermath of medical errors, and their emotional impacts, ought to be a core function of every provider, too.

A good beginning is to heed the lessons that patients and families are eager to share for building true 21st century patient- and family-centred care.

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