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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 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.

(Newest from Huff­in­g­ton Post) 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 recent Cana­di­an study for all provinces except Que­bec report­ed that one in 18 hos­pi­tal­ized patients expe­ri­enced avoid­able med­ical errors in 2014 — 2015. […]

(Pub­lished in The Huff­in­g­ton Post) On a late Sun­day night one recent long week­end, I was con­tact­ed by a fam­i­ly who was dis­tressed over the treat­ment their elder­ly father was receiv­ing in the hos­pi­tal. I oper­ate an online out­reach clin­ic for patients and fam­i­lies through The Cen­ter for Patient Pro­tec­tion. It has helped thou­sands over […]

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It should be no more accept­able to encounter an absence of com­pas­sion, kind­ness and respect in the health­care set­ting than it is to buy a new car and dis­cov­er they for­got to include the brakes.  Yet it hap­pens to patients and fam­i­lies every­day around the world, along with the emo­tion­al harm it unleash­es. (Pub­lished in […]

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