When Faced With Death, People Often Change Their Minds

 

"My patient had done everything possible to avoid being intubated. After a traumatic hospitalization when she was young, she had consistently told her loved ones that she would never again agree to a breathing tube. She had even filled out an advance directive years ago to formalize that decision.

But when she arrived in the emergency department one night this past spring with severe pneumonia, struggling to breathe, the doctors called her husband with a question. Should they intubate? If they didn’t, she would likely die.

He hesitated. Was this really the scenario that his wife, now in her late 60s, was imagining when she told him that she didn’t want a breathing tube? He could not ask her now, and faced with this impossible choice, he gave the team the OK. She was intubated and sedated and transferred to our intensive care unit later that night.

I believed this to be a failure of our health care system: A patient was in exactly the scenario she had long wished to avoid. When I stood at her bedside, I murmured an apology.

After several days, the medical team gathered her family to make a plan. We would continue to treat her pneumonia and try to take her off the breathing tube. Based on our understanding of her prior wishes, we would not put the tube back in once we had taken it out. We would also not consider a tracheotomy, a procedure in which doctors cut a hole in the windpipe to help with breathing for patients who need a longer-term connection to a ventilator. Instead, if she could not breathe on her own, we would focus on her comfort, knowing that she would die. This was what she would have chosen. Or so I thought.

When she was finally awake and off the breathing tube, the team told her what had happened. I assumed that she might feel betrayed by the decisions that had been made for her. But she surprised me. She said she would choose to be intubated again, and even undergo a tracheotomy, if it meant more time with her family.

She had changed her mind. And if the doctors and nurses treating her had made decisions based only on the preferences that she had articulated years ago, we never would have known.

I want advance care planning to work. I want to believe that advance directives — written statements of a person’s wishes about medical treatment — can be completed when someone is relatively healthy and offer doctors and family members a clear road map in the event of serious illness.

But experiences like this one, along with a growing body of academic research, are leading me to rethink that belief. Some palliative care experts have begun to ask a controversial question: What if the present model of advance care planning does not actually deliver better end-of-life care?

This would be a major change in thinking for doctors and policymakers. Since the Patient Self-Determination Act of 1990 went into effect, advance care planning — which encourages all adults, even those in good health, to choose a surrogate to make medical decisions and to draw up an advance directive — has been promoted as the way to make sure that people receive the care they want at the end of their life.

But this well-intentioned effort has not worked as promised. In a recent commentary published in The Journal of the American Medical Association, Dr. R. Sean Morrison, a palliative care specialist, and colleagues wrote that despite decades of research on advance care planning, there are scant data to show that it accomplishes its goals. A 2020 review of more than 60 high-quality recent studies on advance care planning found no impact on whether patients received the care they wanted, or how they rated the quality of their lives afterward.

When doctors talk to patients about advance directives, they implicitly promise that the directives will help patients get the care they want and unburden their loved ones, Dr. Morrison told me. “And the reality is that we’ve been pushing a myth,” he said.

I once thought that the only barriers to effective advance care planning were practical. Not all people are aware of how to write such a directive, and even if they are, the document is not always uploaded into patients’ medical records or is easily retrievable.

But the bigger obstacle, and what has increasingly troubled me working in the intensive care unit, is the difficulty of asking people to make decisions about future scenarios.

Humans have an amazing capacity to adapt to illness or disease. From the vantage point of youth or good health, it is easy for people to say that they would rather die than live with significant limitations, pain or dependence on others.

But people evolve in ways they cannot expect. This is why some survivors of catastrophic accidents, such as spinal cord injuries leading to complete paralysis, nevertheless come to rate their quality of life as good — even if they never would have imagined being able to do so before the accident. As a result, what people are willing to go through to extend their life might change depending on the context. Advance directives written at one point in time about hypothetical scenarios cannot capture what someone actually wants at every point in the future.

A key goal of advance care planning is to free family members from the burdens of making decisions, yet these conversations can paradoxically leave relatives with even more conflict. A loved one may have said years ago that she would want “everything” done. Was she imagining weeks on a ventilator and continuous dialysis without a reasonable hope for recovery?

This does not mean that planning is useless. But there is a better way.

We all should choose a health care proxy, someone who knows us well and whom we would trust to make hard decisions on our behalf, and document that choice in writing. And there is likely some unmeasurable benefit for adults in good health to talk with the people they love about sickness and death. This should not be done in order to make statements about medical treatments that are in any way binding, but to practice what it is like to say those words and experience the complicated feelings that arise when these topics are at hand.

Most important, we need to shift the focus from talking to healthy people about what would happen should they stop breathing during a routine procedure, and toward improving conversations with people who are already seriously ill. All patients for whom these decisions are no longer hypothetical should have a documented conversation with their doctor that focuses less on their thoughts about specific medical interventions and more on their understanding of their prognosis, what is important to them and what gives their lives meaning.

When I am standing at a bedside in the intensive care unit, I want to be able to lean on that conversation. Is my patient someone who would be willing to go through aggressive medical treatments for the possibility of prolonging his life? Or is this someone who would prioritize comfort given the current medical realities?

It’s this kind of information that helps medical teams make recommendations about interventions in real time, as we ultimately did for my patient.

After she was taken off the breathing tube, she did well for a few days. But when her breathing grew ragged, she was intubated once again and then had a tracheotomy. She spent a month in the hospital, and when I last saw her there, she was breathing on her own. The tracheostomy tube had just been removed, and a small piece of gauze was put in its place. She would make it home after all."

Skeptikai sako: „Atlikite tyrimus patys“. Tai nėra taip paprasta

„Kultūroje atsirado naujas šūkis: „Atlik savo tyrimus“. Interneto forumuose ir socialinės žiniasklaidos platformose žmonės, besiginčijantys karštomis temomis, tokiomis kaip vakcinos, klimato kaita ir rinkėjų sukčiavimas, kartais sustiprina savo teiginį arba meta iššūkį savo pašnekovams, parašydami akronimą „D.Y.O.R.", kuris yra nuo angliško posakio:  „Atlik savo tyrimus“.

 

„Praėjus dviem dienoms po skiepo, mano draugo draugas patyrė širdies smūgį“, – neseniai diskusijoje apie vakcinas nuo COVID-19 rašė „Reddit“ vartotojas. „Aš nesakau, kad jie yra susiję, bet D.Y.O.R.

 

Dešimtajame dešimtmetyje sąmokslo teorijų sluoksniuose pasirodęs šūkis išpopuliarėjo per pastarąjį dešimtmetį, nes vis ryškėjo konfliktai dėl ekspertų sprendimų patikimumo. 

 

Tai skatina individualistinį, laisvai mąstantį požiūrį į pasaulio supratimą: nebūkite patiklūs – eikite ir patys išsiaiškinkite, kas yra tiesa.

 

Tai gali atrodyti kaip geras patarimas. Ar ne visada gera mintis surinkti daugiau informacijos prieš apsisprendžiant sudėtinga tema?

 

Teoriškai, galbūt. Tačiau praktikoje mintis, kad žmonės turėtų savarankiškai tirti temas, instinktyviai skeptiškai vertindami ekspertų nuomonę, dažnai yra klaidinga. Psichologiniai tyrimai ne kartą parodė, kad kalbant apie technines ir sudėtingas problemas, tokias, kaip klimato kaita ir vakcinų veiksmingumas, naujokai, atliekantys tyrimus patys, dažnai tampa labiau suklaidinti, nei informuoti – visiškai priešingai nei D.Y.O.R. manoma, kad tai pavyks.

 

Apsvarstykite, kas gali nutikti, kai žmonės pradeda mokytis tam tikra tema. Jie gali pradėti, būdami pakankamai nuolankūs, tačiau gali greitai tapti nepagrįstai pasitikintys, tik šiek tiek patyrę objektą. Tyrėjai šį reiškinį pavadino pradedančiųjų burbulu.

 

Pavyzdžiui, 2018 m. tyrime vienas iš mūsų (profesorius Dunning) ir psichologė Carmen Sanchez paprašė žmonių išbandyti savo jėgas, diagnozuojant tam tikras ligas. (Visos aptariamos ligos buvo fiktyvios, todėl niekas neturėjo patirties jas diagnozuoti.) Dalyviai bandė nustatyti, ar hipotetiniai pacientai yra sveiki, ar serga, naudodamiesi simptomų informacija, kuri buvo naudinga, bet netobula, ir po kiekvieno atvejo gaudavo atsiliepimų apie tai, ar jie buvo teisūs ar neteisūs. Atsižvelgiant į ribotą pateiktos informacijos apie simptomus pobūdį, dalyvių sprendimai turėjo būti priimti su tam tikru neapibrėžtumu.

 

Kaip sekėsi šiems "būsimiems gydytojams"? Iš pradžių jie buvo pakankamai atsargūs, siūlydami diagnozes nelabai pasitikėdami savo sprendimais. Tačiau po kelių teisingų diagnozių jų pasitikėjimas drastiškai išaugo – daug daugiau, nei pateisino faktiniai jų tikslumo rodikliai. Tik vėliau, kai jie darydavo daugiau klaidų, pasitikėjimas savimi šiek tiek labiau atitiko jų įgūdžius.

 

Tyrimas parodė, kad žmonės per daug pasitiki pradinėmis informacijos dalimis, su kuriomis susiduria,  ką nors mokydamiesi. „Šiek tiek mokytis“, - kaip rašė poetas Aleksandras Pope, - „yra pavojingas dalykas“.

 

Anekdotiškai tariant, pradedančiojo burbulą galite pamatyti ir už laboratorijos ribų. Apsvarstykite, kada „pasidaryk pats“ projektai nepavyko. Elektrinius įrankius, kopėčias ir vejapjoves nesunkiai tvarko neapmokyti naudotojai, žinantys tiek, kad jiems kiltų pavojus. Tyrimas parodė, kad JAV vartotojų sužeidimai dėl pneumatinių vinių pistoletų nuo 1991 m. iki 2005 m. išaugo maždaug 200 procentų, matyt, dėl padidėjusio vinių pistoletų, kurie buvo įperkami neprofesionalams, prieinamumo.

 

Tyrimai taip pat rodo, kad žmonės, besimokantys temomis, yra pažeidžiami išdidumo. Apsvarstykite vieno iš mūsų (profesoriaus Dunningo) ir psichologų Stavo Atiro ir Emily Rosenzweig 2015 m. tyrimą. Nustatyta, kad kai naujokai suvokia, kad yra įgiję patirties tokiomis temomis, kaip finansai ir geografija, jie dažnai tvirtins, kad žino apie neegzistuojančias finansines priemones (pvz., „išpirktas akcijas“) ir išgalvotas vietas (pvz., Cashmere, Ore.), jei klausinėjami apie tokius dalykus.

 

Be to, 2018 m. atliktas požiūrio į vakcinų politiką tyrimas parodė, kad kai žmonės priskiria sau žinias apie vakcinas, jie linkę laikyti savo idėjas geresnėmis, nei konkuruojančių šaltinių idėjas ir lygiavertes gydytojų bei mokslininkų, kurie daug dėmesio skyrė šiai problemai.  Dėl savo patirties jie mažiau nori klausytis gerai informuotų patarėjų, nei būtų buvę kitu atveju.

 

Neturėtų būti gėda nustatyti nepriklausomų ekspertų sutarimą ir priimti jų bendrus pranešimus. Mūsų, kaip asmenų, įgūdžiai tinkamai tikrinti informaciją yra dėmėti. Galite puikiai atskirti patikimus kardiologus nuo blogų, nežinodami, kaip atskirti rimtus autoritetus nuo apsimetėlių dėl ekonominės politikos.

 

Dėl D.Y.O.R. entuziastų nuomonės, viena pamoka iš viso to gali būti tokia: nedarykite savo tyrimų, nes tikriausiai nesate kompetentingi tai daryti.

 

Ar tai mūsų žinutė? Nebūtinai. Viena vertus, tai yra būtent tokia patarimai, kuriuos, palaikantys D.Y.O.R., yra pasiruošę atmesti. 

 

Visuomenėje, kurioje taip ryškūs konfliktai tarp vadinamojo elito ir jo kritikų, apeliavimas į ekspertų pranašumą gali sukelti nepasitikėjimą.

 

Problemą apsunkina tai, kad pašaliniai kritikai dažnai turi pagrįstų skundų dėl viešai neatskleistų institucijų patarimų. Vienas iš pavyzdžių galėtų būti pradinis valstybės pareigūnų nurodymas Covid-19 pandemijos pradžioje, kad žmonėms nereikia dėvėti kaukių.

 

Vietoj to, mūsų žinutė iš dalies yra ta, kad ekspertams neužtenka turėti įgaliojimų, žinių ir daug faktų. Jie turi parodyti, kad yra patikimi, ir rimtai įsiklausyti į prieštaravimus iš alternatyvių perspektyvų.

 

Stengiamės pasiūlyti kruopščius patarimus, kai kalbame apie mūsų kompetencijos sritis. Nepaisant to, kai kurie D.Y.O.R. entuziastai gali atmesti mūsų įspėjimus. Jei jie tai padarys, tikimės, kad jie vis tiek atsižvelgs į bent vieną patarimą: jei ketinate atlikti savo tyrimą, pirmiausia turėtumėte išsiaiškinti, kaip geriausia atlikti savo tyrimą."

 

Skeptics Say, ‘Do Your Own Research.’ It’s Not That Simple.

"A new slogan has emerged in the culture: “Do your own research.” On internet forums and social media platforms, people arguing about hotly contested topics like vaccines, climate change and voter fraud sometimes bolster their point or challenge their interlocutors by slipping in the acronym “D.Y.O.R.”

“Two days after getting the jab, a friend of mine’s friend had a heart attack,” a Reddit user wrote recently in a discussion about Covid-19 vaccines. “I’m not saying they’re connected, but D.Y.O.R.”

The slogan, which appeared in conspiracy theory circles in the 1990s, has grown in popularity over the past decade as conflicts over the reliability of expert judgment have become more pronounced. It promotes an individualistic, freethinking approach to understanding the world: Don’t be gullible — go and find out for yourself what the truth is.

That may seem to be sound advice. Isn’t it always a good idea to gather more information before making up your mind about a complex topic?

In theory, perhaps. But in practice the idea that people should investigate topics on their own, instinctively skeptical of expert opinion, is often misguided. As psychological studies have repeatedly shown, when it comes to technical and complex issues like climate change and vaccine efficacy, novices who do their own research often end up becoming more misled than informed — the exact opposite of what D.Y.O.R. is supposed to accomplish.

Consider what can happen when people begin to learn about a topic. They may start out appropriately humble, but they can quickly become unreasonably confident after just a small amount of exposure to the subject. Researchers have called this phenomenon the beginner’s bubble.

In a 2018 study, for example, one of us (Professor Dunning) and the psychologist Carmen Sanchez asked people to try their hand at diagnosing certain diseases. (All the diseases in question were fictitious, so no one had any experience diagnosing them.) The participants attempted to determine whether hypothetical patients were healthy or sick, using symptom information that was helpful but imperfect, and they got feedback after every case about whether they were right or wrong. Given the limited nature of the symptom information that was provided, the participants’ judgments ought to have been made with some uncertainty.

How did these would-be doctors fare? At the start, they were appropriately cautious, offering diagnoses without much confidence in their judgments. But after only a handful of correct diagnoses, their confidence shot up drastically — far beyond what their actual rates of accuracy justified. Only later, as they proceeded to make more mistakes, did their confidence level off to a degree more in line with their proficiency.

The study suggested that people place far too much credence in the initial bits of information they encounter when learning something. “A little learning,” as the poet Alexander Pope wrote, “is a dangerous thing.”

Anecdotally, you can see the beginner’s bubble at work outside the laboratory too. Consider do-it-yourself projects gone wrong. Power tools, ladders and lawn mowers are easily mishandled by untrained users who know just enough to put themselves in danger. A study found that U.S. consumer injuries from pneumatic nail guns increased about 200 percent between 1991 and 2005, apparently as a result of the increased availability of nail guns that were affordable for nonprofessionals.

Research also shows that people learning about topics are vulnerable to hubris. Consider a 2015 study by one of us (Professor Dunning) and the psychologists Stav Atir and Emily Rosenzweig. It found that when novices perceive themselves as having developed expertise about topics such as finance and geography, they will frequently claim that they know about nonexistent financial instruments (like “prerated stocks”) and made-up places (like Cashmere, Ore.) when asked about such things.

Likewise, a 2018 study of attitudes about vaccine policy found that when people ascribe authority to themselves about vaccines, they tend to view their own ideas as better than ideas from rival sources and as equal to those of doctors and scientists who have focused on the issue. Their experience makes them less willing to listen to well-informed advisers than they would have been otherwise.

There should be no shame in identifying a consensus of independent experts and deferring to what they collectively report. As individuals, our skills at adequately vetting information are spotty. You can be expert at telling reliable cardiologists from quacks without knowing how to separate serious authorities from pretenders on economic policy.

For D.Y.O.R. enthusiasts, one lesson to take away from all of this might be: Don’t do your own research, because you are probably not competent to do it.

Is that our message? Not necessarily. For one thing, that is precisely the kind of advice that advocates of D.Y.O.R. are primed to reject. In a society where conflicts between so-called elites and their critics are so pronounced, appealing to the superiority of experts can trigger distrust.

The problem is compounded by the fact that outsider critics frequently have legitimate complaints about advice provided by insider authorities. One example might be the initial instruction from public officials at the outset of the Covid-19 pandemic that people need not wear masks.

Instead, our message, in part, is that it’s not enough for experts to have credentials, knowledge and lots of facts. They must show that they are trustworthy and listen seriously to objections from alternative perspectives.

We strive to offer careful guidance when it comes to our own areas of expertise. Even so, some D.Y.O.R. enthusiasts may reject our cautions. If they do, we hope that they will nonetheless heed at least one piece of advice: If you are going to do your own research, the research you should do first is on how best to do your own research."

Išvežėme į Iraką keletą migrantų

 "Ministrė A. Bilotaitė: tai – istorinis įvykis, tai visų tautos problemų sprendimas, dabar mes vėl būsim nuo jūros iki jūros, visokie anūkėliai ir kiti ne viso proto kūdikiai valdys mus, kaip norės, o mums, nepaisant tokio absurdo, bus tik pieno upės, kisieliaus krantai."