Make DNR Practices Safer and More Transparent (NEW)

DNR Practices Safer and More Transparent (NEW)">

DNR process opaque, confusing and too often abused

DNR: A Start­ing Point for Informed Patients & Fam­i­lies

The Cen­ter for Patient  Pro­tec­tion is a lead­ing voice for patient and fam­i­ly edu­ca­tion and improve­ments relat­ed to do-not–resuscitate (DNR) prac­tices.

We pro­vide out­reach ser­vices to patients and fam­i­lies; help providers design respon­sive pro­to­cols, based on the report­ed expe­ri­ences of patients and fam­i­lies, that reduce the risk of harm; and advo­cate for changes in laws and reg­u­la­tions among gov­ern­ments and health­care pol­i­cy mak­ers.

Our exten­sive research, along with the huge vol­ume of cas­es report­ed to The Cen­ter for Patient  Pro­tec­tion,reveals that there are few areas of patient and fam­i­ly engage­ment that are more open to con­fu­sion, risk of med­ical error and the need for change than hos­pi­tal DNR prac­tices.

Deci­sions that can lead to the end­ing of a life are among the most heart-wrenching any fam­i­ly can be called upon to make. They are all the more trou­bling when they are made in the absence of the right infor­ma­tion. Worse still is when doc­tors refuse to fol­low the wish­es of the patient or fam­i­ly, or when there is a mis­in­ter­pre­ta­tion of those wish­es that leads to harm.  Yet our exten­sive research, along with the huge volumne of cas­es report­ed to  The Cen­ter for Patient Pro­tec­tion, reveals that there are few areas of patient and fam­i­ly engage­ment that are more open to con­fu­sion, risk of med­ical error and the need for change than hos­pi­tal DNR prac­tices.

Com­mon DNR Risks & Per­ils

Even when patients present a liv­ing will or advance direc­tive indi­cat­ing their wish­es, it is not always pos­si­ble to con­tem­plate every even­tu­al­i­ty or com­pli­ca­tion that can occur. Just as sig­nif­i­cant, there is a con­sid­er­able risk that the intend­ed wish­es of the patient will be mis­in­ter­pret­ed to the point of harm. This was among the ground­break­ing find­ings of a series of stud­ies known as TRIAD (The Real­is­tic Inter­pre­ta­tion of Advance Direc­tives), which con­clud­ed that there is “wide­spread mis­un­der­stand­ing” among clin­i­cians about advance direc­tives.

We now know that this area rep­re­sents a nation­wide patient safe­ty issue,” accord­ing to TRIAD’s lead inves­ti­ga­tor, Dr. Fer­di­nan­do Mirar­chi, med­ical direc­tor of the depart­ment of emer­gency med­i­cine at UPMC-Hamot in Erie, Penn­syl­va­nia (part of the Uni­ver­si­ty of Pitts­burgh Med­ical Cen­ter sys­tem).

A Cau­tion­ary DNR Expe­ri­ence

At The Cen­ter for Patient  Protection’s Online Out­reach Clin­ic, we receive more inquiries and mes­sages of urgent con­cern about DNR deci­sions than any oth­er mat­ter. Patients and fam­i­lies know about the wide­ly report­ed sto­ry of Kath­leen Fin­lay, The Center’s founder and CEO, involv­ing her mother’s expe­ri­ences with DNR prac­tices.   They also know that The Cen­ter has long advo­cat­ed sig­nif­i­cant changes in the way DNR issues are han­dled, espe­cial­ly in the hos­pi­tal set­ting, so that the risk of abuse, med­ical error and emo­tion­al harm can be min­i­mized. Over­whelm­ing­ly, the con­cerns report­ed to The Cen­ter relate to patient or fam­i­ly wish­es for full code sta­tus being thwart­ed by the med­ical team, rather than resus­ci­ta­tion occur­ring against the wish­es of the patient or fam­i­ly.

The Gap in Legal Pro­tec­tion

Some juris­dic­tions, such as New York State and Ohio, man­date cer­tain DNR prac­tices by statute. In Cana­da, there are no sim­i­lar leg­is­lat­ed pro­to­cols. Some providers, like the Cleve­land Clin­ic, have cre­at­ed their own more detailed DNR pro­to­cols that go beyond state-mandated require­ments.

But, for the most part, these efforts are inad­e­quate and do not reflect the full com­mit­ment to trans­paren­cy and patient- and family-centered care that is need­ed. Many of the statutes that do exist, like New York’s, do not “require hos­pi­tals to estab­lish mech­a­nisms to enforce the integri­ty of the informed con­sent process and hold attend­ing physi­cians account­able for lead­ing dis­cus­sions. They also do not spec­i­fy sanc­tions for non­com­pli­ant indi­vid­u­als,” accord­ing to not­ed DNR researchers.

These weak­ness­es con­tin­ue to pro­duce con­fu­sion (for patients and fam­i­lies, and even among clin­i­cians), break­downs in com­mu­ni­ca­tions, and unin­tend­ed adverse events in the clin­i­cal set­ting. They con­firm that more needs to be done with­in state and provin­cial juris­dic­tions to set stan­dards regard­ing DNR dis­clo­sure, prac­tices and safe­guards. They also show that more providers need to cre­ate their own detailed poli­cies based on best prac­tices.

Our Online Out­reach Clin­ic receives more inquiries and con­cerns about DNR issues and abus­es than any oth­er top­ic.

Patients and Fam­i­ly Sto­ries:  Snap­shots of DNR Harm

Rec­og­niz­ing the unique role The Cen­ter has played on this sub­ject, over the years world-renowned experts in DNR prac­tices have reached out to Kath­leen to explore ways of improv­ing exist­ing DNR pro­to­cols, from the per­spec­tives of both providers/clinicians as well as those of patients and fam­i­lies. With a data­base of more than 2,000 patient and fam­i­ly inter­ac­tions and per­son­al case expe­ri­ences, The Cen­ter for Patient  Pro­tec­tion offers a unique capa­bil­i­ty that is not found any­where else in the health­care sys­tem.

The best providers and clin­i­cal teams want to know the key infor­ma­tion gaps that cause sig­nif­i­cant bar­ri­ers to safe DNR decision-making or inad­ver­tent­ly lead to med­ical error and harm. Patients and fam­i­lies also need help in mak­ing informed deci­sions about their wish­es, and about what they need to do in order to ensure those wish­es are being car­ried out and not dis­re­gard­ed.

The Five Per­sis­tent Fail­ures in DNR Prac­tices

The Cen­ter for Patient  Pro­tec­tion has exam­ined an exhaus­tive array of cas­es report­ed to it, as well as those con­tained in DNR-related lit­er­a­ture and research. When adverse events, med­ical errors or emo­tion­al harm have arisen in DNR prac­tices involv­ing patients and fam­i­lies, these fail­ures can typ­i­cal­ly be traced to the fol­low­ing break­downs.

1  Inex­pe­ri­enced Physi­cians.   Fre­quent­ly, when a hos­pi­tal seeks con­sent from a patient or fam­i­ly mem­ber for a DNR order, a doc­tor with lim­it­ed expe­ri­ence in the ear­ly stage of his or her res­i­den­cy is dis­patched to obtain the con­sent. Many have not even exam­ined the patient or know much about their con­di­tion.  Often these dis­cus­sions are ini­ti­at­ed when fam­i­lies are under extreme stress and strug­gling to nav­i­gate their way in unfa­mil­iar sur­round­ings.

Many patients and fam­i­lies report that efforts to obtain con­sent to a DNR order are con­duct­ed in a clum­sy and insen­si­tive man­ner where the patient seems to be regard­ed as more of a sta­tis­tic than a loved one with unique human qual­i­ties. Fam­i­lies also report what to them appears to be an unseem­ly rush to obtain such con­sent and feel over­ly pres­sured to agree. For many patients and fam­i­lies, this is often their first expe­ri­ence with the con­cept of DNR/end of life deci­sions. Yet this is also where the fewest and least expe­ri­enced hos­pi­tal resources are focused, which can eas­i­ly con­tribute to a lack of under­stand­ing and trust.

2  Inad­e­quate Infor­ma­tion. Research shows that “many physi­cians fail to pro­vide ade­quate infor­ma­tion to allow patients or sur­ro­gates to make informed deci­sions and inap­pro­pri­ate­ly extrap­o­late DNR orders to lim­it oth­er treat­ments.”

Doc­tors often seek the con­sent of patients or fam­i­ly sub­sti­tute decision-makers to a DNR order with­out pro­vid­ing the full range of infor­ma­tion required. For exam­ple, it is wide­ly held that there is vir­tu­al­ly no suc­cess in resus­ci­tat­ing a patient who is over the age of 80. Yet those asser­tions fail to take account of cas­es where elder­ly patients have have sur­vived, such as Kathleen’s then 88-year-old moth­er, who was resus­ci­tat­ed after a cardiac/respiratory arrest (her con­di­tion was flat­lined and chart­ed as asys­tole at the time).

She con­tin­ued to improve over suc­ceed­ing years and today is on the eve of cel­e­brat­ing her 95th birth­day, in her home. This sto­ry has drawn wide­spread inter­est since it was made pub­lic in The Huff­in­g­ton Post and, more recent­ly, in Med­scape, the online med­ical jour­nal. What remains aston­ish­ing is that there was so lit­tle inter­est in the med­ical com­mu­ni­ty in under­stand­ing the facts and cir­cum­stances that would have allowed this elder­ly patient, who had already suf­fered from a brain hem­or­rhage and ventilator-associated pneu­mo­nia, to have sur­vived the arrest, recov­er­ing to the remark­able extent she did and with sig­nif­i­cant­ly enhanced longevi­ty.

Some skep­ti­cism is, there­fore, appro­pri­ate when clin­i­cal pro­fes­sion­als begin to cite sta­tis­tics, the verac­i­ty and accu­ra­cy of which can­not be ascer­tained by the patient (or sub­sti­tute decision-maker) and often are not even known by the physi­cian.

3  The Risk of Do-Not-Treat. One of the biggest fears among patients and fam­i­lies is that DNR orders will be inter­pret­ed as do-not-treat deci­sions. This is rec­og­nized in the research con­duct­ed by Dr. Mirarchi’s team, not­ed ear­li­er above. research  He warns that advance direc­tives and liv­ing wills can also pro­duce such unin­tend­ed results. “The risk is that you don’t receive the nec­es­sary and standard-of-care treat­ment for a crit­i­cal ill­ness such as a heart attack, which could lead to death or per­ma­nent dis­abil­i­ty, where­as the standard-of-care treat­ment could save your life.”

This view is dra­mat­i­cal­ly sup­port­ed by addi­tion­al research con­duct­ed by Drs. Yuen, Reid et al., who cau­tion: “…many providers inap­pro­pri­ate­ly alter treat­ment plans for patients with a DNR order with­out dis­cus­sion with the patient or sur­ro­gate. In one sur­vey of 155 med­i­cine and surgery res­i­dents, 43% would with­hold blood prod­ucts and 32% would not give antibi­otics to a patient with a DNR order. Some believe that diag­nos­tic tests should not be ordered when a patient is DNR.”

In anoth­er study, it was shown that nurs­es would be sig­nif­i­cant­ly less like­ly to per­form a vari­ety of mon­i­tor­ing and inter­ven­tions for DNR patients than for non-DNR patients. More­over, research of physi­cian pref­er­ences and deci­sions showed that DNR patients were sig­nif­i­cant­ly less like­ly to be trans­ferred to an inten­sive care unit, to be intu­bat­ed or to receive inter­ven­tions (like the place­ment of cen­tral lines) than were non-DNR patients.

In light of the fore­go­ing, it can­not be sur­pris­ing that one study con­clud­ed that patients with DNR orders were 34 times more like­ly to die in hos­pi­tal, even adjust­ing for propen­si­ty scores and oth­er covari­ates.

In a study of ICU deaths involv­ing patients with acute res­pi­ra­to­ry dis­tress, nine per­cent of the patients who were full code died, com­pared with 97 per­cent of DNR patients.

Research shows a major risk that a DNR order will be inter­pret­ed as do-not-treat and that reduc­tions in care will occur.

To address the con­cerns relat­ed to a poten­tial do-not-treat bias for DNR patients, in 1998 Ohio enact­ed two class­es of DNR pro­to­cols.

These are set out in Ohio’s law, which is sum­ma­rized below:

1) DNR Comfort Care

DNR Com­fort Care orders (DNRCC) require that only com­fort care be admin­is­tered before, dur­ing, or after the time a person’s heart or breath­ing stops. This type of order is gen­er­al­ly regard­ed as appro­pri­ate for a patient with a ter­mi­nal ill­ness, short life expectan­cy, or lit­tle chance of sur­viv­ing CPR.

2) DNR Comfort Care-Arrest

DNR Com­fort Care-Arrest orders (DNRCC-Arrest) per­mit the use of life-saving mea­sures (such as pow­er­ful heart or blood pres­sure med­ica­tions) before a person’s heart or breath­ing stops. How­ev­er, only com­fort care may be pro­vid­ed after a person’s heart or breath­ing stops.

screen-shot-2016-11-16-at-11-16-40-amUnder this code, the patient’s air­ways will be suc­tioned and oxy­gen can be giv­en.

These options focus on what will be done for the patient, where­as the con­ven­tion­al, one-size-fits-all, approach to DNR orders cen­ters only on what will not be done (i.e., resus­ci­ta­tive effort). Some see this as more empow­er­ing to the patient and more con­sis­tent with mod­ern prin­ci­ples of indi­vid­ual auton­o­my and patient-centered care.

Impor­tant­ly, ear­ly research pro­vides evi­dence that these two choic­es ensure a con­tin­u­um of the most appro­pri­ate care and “may help alle­vi­ate con­cern that DNR patients will receive either too much or too lit­tle med­ical care.”

The study apt­ly con­cludes that “the sim­ple and vague DNR order should become a thing of the past. Inter­pre­ta­tion of DNR orders should not be left to the imag­i­na­tion.”

The sim­ple and vague DNR order should become a thing of the past. Inter­pre­ta­tion of DNR orders should not be left to the imag­i­na­tion.

4  Improp­er­ly Obtained DNR Orders | Over­rid­ing Fam­i­ly Wish­es. There are well-documented cas­es when doc­tors have over­rid­den the expressed wish­es of the patient or sub­sti­tute decision-maker and have failed to order resus­ci­ta­tion inter­ven­tion even in the absence of a DNR order. This prac­tice is a fre­quent sub­ject of com­plaint to The Center’s Online Out­reach Clin­ic.  Here are two high-profile cas­es that have been cov­ered in the media. Star arti­cle.  Guardian arti­cle.

Sim­i­lar­ly, efforts have been made to obtain DNR con­sent from patients who clear­ly have no capac­i­ty to give informed con­sent. In a much pub­lished case, Kath­leen Fin­lay, The Center’s founder, tells of the ear­li­er hos­pi­tal­iza­tion of her moth­er, who was suf­fer­ing from a seri­ous infec­tion at the time. She had a high fever and was deliri­ous. The fam­i­ly had declined the doctor’s request for a DNR order. He then turned to the patient who had been asleep. “Mrs. Fin­lay,” he said sev­er­al times until she awoke, “if your heart stopped beat­ing you wouldn’t want us to hurt you, would you?” Look­ing per­plexed and con­fused, she said “no” and fell back to sleep. “That’s good enough for me,” the doc­tor said and signed the DNR order. When the fam­i­ly object­ed to the man­ner in which the con­sent had been obtained, the hos­pi­tal told them to hire a lawyer if they didn’t like it. It was Christ­mas Day.

As an aside, this expe­ri­ence also serves as a reminder of how, through their insen­si­tiv­i­ty and lack of com­pas­sion, health­care providers and med­ical pro­fes­sion­als can inflict avoid­able emo­tion­al harm on fam­i­lies who are only seek­ing the best care for a loved one.

Once again, this expe­ri­ence and sim­i­lar ones report­ed to The Cen­ter empha­size the need for laws that impose tough no-nonsense pro­to­cols on hos­pi­tals and physi­cians that spec­i­fy the man­ner in which DNR con­sents can be obtained, the con­di­tion of the patient before he or she can pro­vide con­sent, and the kind of infor­ma­tion that must be dis­closed in order to pre­serve the prin­ci­ple of informed con­sent.

5  Slow Codes. On some report­ed occa­sions, a “slow code” has been adopt­ed because the med­ical team believes resus­ci­ta­tion should not occur, despite the expressed wish­es of the patient or fam­i­ly to the con­trary. In a slow code response, the expec­ta­tion of the physi­cians and nurs­es involved is that the patient will expire before they arrive to per­form resus­ci­ta­tion mea­sures. As a result, they respond slow­ly to code calls for that patient. Very slow­ly. In an illu­mi­nat­ing arti­cle, a nurse of 40 years’ expe­ri­ence reen­acts the “slow code daw­dle.”

Accord­ing to the Uni­ver­si­ty of Wash­ing­ton School of Med­i­cine “The Slow and show codes are eth­i­cal­ly prob­lem­at­ic. In gen­er­al, per­form­ing slow and show codes under­mines the rights of patients to be involved in clin­i­cal deci­sions, is decep­tive, and vio­lates the trust that patients have in health care providers.”

It’s hard to find a doc­tor who hasn’t seen or heard of a slow code being done, if not par­tic­i­pate in one.

As Dr. Micheal Evans, an emergency-room physi­cian, put it in an inter­view: “It is mal­prac­tice. If you’re called to a code, you go. You do it as if it’s a 2-year-old, a 20-year-old or a 100-year-old. It doesn’t mat­ter the age of the per­son that has an urgent med­ical need.”   Dr. Bri­an Gold­man, a Toron­to emer­gency room physi­cian, calls slow codes decep­tive and uneth­i­cal, not­ing “it’s hard to find a doc­tor who hasn’t seen or heard of a slow code being done, if not par­tic­i­pate in one.”

Few laws are in place in the Unit­ed States or Cana­da to pre­vent this abuse. Over the years, many fam­i­lies have report­ed their fear that a loved one was the vic­tim of a slow code pro­ce­dure.

 A Call for Action

All these issues and con­cerns are just the tip of the ice­berg when it comes to com­pli­ca­tions involv­ing DNR prac­tices. These obser­va­tions are not intend­ed to sug­gest that there is no appro­pri­ate use for prop­er­ly informed and con­sent­ed DNR orders in the hos­pi­tal set­ting. But it is to strong­ly give voice to the prin­ci­ple that trans­paren­cy, com­pas­sion, and oth­er hall­marks of patient- and family-centered care must always be present at every stage of the DNR process.  As The Center’s research and case  reports from patients and fam­i­lies reveal, they are absent in far too many instances.

We call on gov­ern­ments and health­care reg­u­la­tors to ensure that cur­rent hos­pi­tal DNR prac­tices actu­al­ly pro­tect patients and pre­serve their rights to give informed con­sent.

The Cen­ter for Patient  Pro­tec­tion believes that, in addi­tion to steps gov­ern­ments through­out the Unit­ed States, Cana­da and else­where need to take to set out safer DNR stan­dards, the health­care sec­tor needs to seri­ous­ly review the extent to which cur­rent prac­tices fail to pro­tect patients in the con­text of these often irrev­o­ca­ble deci­sions, which can be life-and-death deter­mi­na­tive. We call upon the Joint Com­mis­sion, which accred­its hos­pi­tals in the Unit­ed States, and has set a num­ber of stan­dards for hos­pi­tals achiev­ing that sta­tus, and the Insti­tute of Med­i­cine, which has a dis­tin­guished his­to­ry of address­ing ground­break­ing issues, such as med­ical errors in the hos­pi­tal set­ting and, more recent­ly, the risks of diag­nos­tic errors, to con­duct a thor­ough review of cur­rent end of life/DNR prac­tices and to devel­op stan­dards, based on best evi­dence, to ensure the safe and trans­par­ent approach to end of life decision-making, includ­ing DNR orders.

 A 21st Cen­tu­ry Patient and Fam­i­ly DNR Approach

For indi­vid­ual health­care providers, The Cen­ter for Patient  Pro­tec­tion has devel­oped a new 21st cen­tu­ry patient and fam­i­ly DNR mod­ule. With it, we can assist providers in review­ing their cur­rent DNR prac­tices with a view to ensur­ing that they are con­sis­tent with the needs of patients and fam­i­lies that are reg­u­lar­ly report­ed to The Cen­ter and with the best stan­dards of patient-centered care. We believe this is a prac­ti­cal approach to reduc­ing unin­tend­ed out­comes and the emo­tion­al harm that so often accom­pa­nies them.

 The Center’s Online Out­reach Clin­ic

The Online Out­reach Clin­ic of The Cen­ter for Patient  Pro­tec­tion con­tin­ues to be avail­able through our advo­ca­cy ser­vices. We also wel­come sto­ries from patients and fam­i­lies who wish to con­tribute to an improved aware­ness by clin­i­cal pro­fes­sion­als and oth­ers about real-life DNR expe­ri­ences.

For patients and fam­i­lies who are finan­cial­ly dis­ad­van­taged and are look­ing for guid­ance on this mat­ter, our pro bono (free) ser­vice is occa­sion­al­ly avail­able on a lim­it­ed basis.

If you are a patient or fam­i­ly mem­ber who have had a hos­pi­tal DNR expe­ri­ence you wish to share, or a provider seek­ing to improve your han­dling of DNR prac­tices, con­tact Kath­leen Fin­lay, founder and CEO of The Cen­ter for Patient  Pro­tec­tion.

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