Caring neglect: behaviours that lead us to believe our healthcare professionals don’t care

by Carolyn Thomas     ♥    Heart Sisters (on Blue Sky) 

A few years after I survived a misdiagnosed heart attack in 2008, I read a U.K. study focused on what researchers at the Institute of Social Psychology at the London School of Economics call Patient Neglect.(1)  This healthcare phenomenon includes both Procedural Neglect (“failing to achieve the objective standards of patient care”) and Caring Neglect (“behaviours that lead patients and observers to believe that staff have uncaring attitudes.”)

Patient Neglect, as the study’s authors explain, is “an issue of increasing public concern in Europe and North America, yet it remains poorly understood.”  In mid-heart attack, I had already experienced examples of both Procedural and Caring Neglect from two individual staff members at my local hospital’s Emergency Department – during the same shift: 

◊  Procedural Neglect:  The Emergency Physician: My cardiac symptoms (central chest pain, nausea, sweating and pain down my left arm) were confidently misdiagnosed as acid reflux by an over-confident Emerg Doc before I was sent home. No cardiologist was called in at that time. You would be correct if you’ve already guessed that, had I been a male patient presenting to that Emergency Department with those textbook cardiac symptoms that morning, I would have almost certainly been  swiftly admitted (the objective standard of patient care). And I did not have acid reflux, according to the cardiologist who was finally called in (by a different Emerg Doc , thank goodness). That cardiologist sat at my bedside, reached over to hold my right hand with both of his hands, and kindly told me: “Mrs. Thomas, I can tell by your T-waves and your other cardiac tests that you have significant heart disease.”  I was immediately moved up to the cath lab, where an interventional cardiologist implanted a stent inside my blocked left anterior coronary artery  (the so-called “widow-maker” heart attack.)  

◊   Caring Neglect:  The Emergency Department Nurse:   That dismissive Emerg Doc must have mentioned me (his pain-in-the-neck acid reflux patient) to one of his nurse colleagues after he left my bedside. Seconds later, the nurse marched up to my gurney to remove my I.V. before sending me home – while loudly scolding me as I lay there, helpless, humiliated and in pain. Her stern warning to me:    

“You’ll have to STOP asking questions of the doctor. He is a very good doctor and he does NOT like to be questioned!” 

Ironically, I’d asked only one question of that Emerg Doc – which was this:  “But Doctor, what about this pain down my arm?” 

I’m not a physician, but even I knew that left arm pain is not a sign of indigestion. That nurse’s hostile warning to me in defense of her colleague was clearly an example of “behaviour that leads patients and observers to believe that staff have uncaring attitudes.”  

The U.K. researchers explained that apologists for Patient Neglect frequently blame organizational factors (e.g. high workloads, staff burnout, the relationship between staff and patients, etc.) 

I might be more inclined to buy those excuses if I hadn’t met so many remarkably kind and compassionate healthcare staff whose workloads are just as onerous (if not worse!) than those of the Emergency staff whose behaviour was so profoundly uncaring.  

Patients are sick, not stupid – so we can usually tell the difference between Caring Neglect and genuine kindness. 

The U.K. study found that (to nobody’s surprise) patients and their family members are more likely to report Caring Neglect than healthcare staff are.  Patient and family complaints about care tend to focus on issues relating to staff attitudes, communication, and patient dignity.

Yet as much as many thinking persons truly hope to solve issues of Patient Neglect, potential solutions so far have remained problematic, according to the U.K. research team:

“Some suggestions reflect a belief that healthcare staff are responsible for incidents of Patient Neglect, but suggestions are also contradictory (e.g. reducing bureaucracy to free staff from filling out forms, while simultaneously increasing bureaucracy to ensure that staff care for patients properly).

“Addressing the problem of Patient Neglect also involves regulating aspects of behaviour that are difficult to measure and assumed to be lacking (e.g. compassion). Even conducting research on this problem can be challenging due to the toxicity of the subject (e.g. questioning the abilities, motivation and ethics of healthcare professionals). 

Patient Neglect and medical error can also become confused. For example, a lack of adequate pain relief is frequently cited by patients and family members – who may believe neglect has occurred due to healthcare staff not caring about them. Meanwhile, the healthcare staff may believe poor care has occurred due to staffing workloads beyond their control.

Here’s another finding of this U.K. research I was able to readily believe:

“Patient Neglect can refer to failures in managing the psychological well-being of patients (e.g. not showing compassion or maintaining the dignity of patients), with no immediate physical harm. Healthcare staff and patients may also have different perspectives on whether and why such events have occurred, what concepts such as ‘dignity’ and ‘compassion’ mean, and their impact upon patient well-being.

Yet despite their subjectivity, the interactions between healthcare staff and patients are consistently cited by patients as fundamental to good care.  

In other words, being physically harmed by healthcare professionals isn’t the only way Patient Neglect can show up when you’re the one wearing that drafty hospital gown. While the supervisor of one of our hospital clinics tried to explain away the shocking rudeness of one of her clinic staff by wondering aloud if “he was just having a bad day?!”  I interrupted her to ask:

“You know who’s having a worse day?  HIS PATIENTS!”   

Finally, we know that Patient Neglect is not something that senior healthcare executives boast about during their hospital fundraising campaigns. Instead, you’ll hear only about the brilliant superiority of their own uniquely “patient-centred” care compared to other hospitals – as if they are unaware of Patient Neglect. I’ve witnessed this in person when I was asked to speak at a fundraising Gala in support of a $3 million campaign to fund an important piece of cardiac equipment for our hospital’s cath lab. But while preparing my speech notes with the hospital fundraising staff before this Gala event, I was specifically told to NOT mention the fact that I’d been misdiagnosed by Emergency staff who had sent me home from this hospital in mid-heart attack.Their instructions to me were: 

“Just stick to how great your care was AFTER you’d been taken upstairs to the cath lab!”   

My sincere question to them at the time was:

“What good is a $3 million piece of equipment if heart patients like me cannot get past the Emergency Department gatekeepers in this hospital?”  

See also:    Are You One of the ‘Top Grateful Patients’ At Your Hospital? 

Or, in the words of the late Swiss psychotherapist Dr. Carl Jung: 

“You are what you do, not what you say you’ll do.” 

♥

1. Reader TW, Gillespie A. “Patient neglect in healthcare institutions: a systematic review and conceptual model.” BMC Health Serv Res. 2013 Apr 30;13:156.

NOTE FROM CAROLYN:   I wrote much more about becoming a patient – no matter the diagnosis – in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon –  or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

Q:  Have you experienced specific incidents of Patient Neglect?