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LeahStrauss ProductionArtist: EllenGurak Coverl esigner: Thetextofthis publication,or anypart thereol maynot bereproduced in anymannerwhatsoeverwithout written permissionfrom thepublisher. Pleasecall our SpecialSales Departmentto orderor for moreinformationat ,ext. Truth C. Patient autonomy is the most fundamental principle underlying all health-care ethics.
Autonomy grants every competent adult patient the absolute right to do what he wishes rvith his own health care. The concept of autonorny is fundamental to the entirety of the U. Justice cardozo set this as a clear legar precedent in , in the case Schloendorffv. Societyof New york Hospital, N. JusticeCardozo wrote, "Every human being of adult yearsand a sound '.
Patient autonomy is a concept derived fron the property rights issuesthat led to the Declaration of Independence, the U. Constitution, and the Bill of Rights. Autonomy overone'sown medical careis seenin the samelight asfreedom of religior, freedom fron. Theserights are so inlri,'icto our cullurethlt theyrrr conideredaxiomalic. Vithin the l. Ior example,patients have the right to refuseundesired therapy,and they havethe right to choosewhether or not they will participate in experimentation.
Each patient has the right to havehis wishescarried out even in the event that he losesconsciousnessor the caoacitv to make dccisions for himsell Chapter 'l. Docsthe fact that we canplacea nasogastrictube in a con. Each patient should decidc the a'swers to tlresequestions for hinrsell rhis is autonomy: I havethe right to do what I choosewith my own body aslong asI understand the consc quencesofmy decisions.
There is no form ofproperty more personal than one,sown bodyi so each patient hasthe right to deternire what is done to his body. Theseprinciples may seemobvious, but they are fundamental in medical ethics. This work is an examination of the various cthical situations faced clailyby ph,vsicians. Autonomy representsa patient's right to deter'. No form of a treatment can be pursuedrvithout his or lter agreerrent,even if the pro posed therapy is "for her own good.
Eachpatient hasthe right to refusea treatment even ifthat treatment has no adverseeffectsa'd will heip her.
You cannot trcat him or her aqainsthis or her wil] even if the treatment is for her benefit. Think of your body as a piece of property such as your house or your car. They m. They cannot even do something benign, such as step inside vour honc, without your express agreenent. Likewise,a physician cannot do a colonoscopv or a CBC without your consent.
Unlessyou agreeto it, a physician cannot evcn do a urinalysis or an EKG, eventhough these aremild and uncomplicatedprocedures. Along the same lines, a painter cannot repaint your house without your consent even if he does it for free, the existing house color is ugly, anclthe servicewill only benefit you. A physician cannot treat your pneumonia or remove a cancer even though the procedure or treatment is benign and it will only benefit you.
A doctor can violate this autonomy if you are doing something potentially dangerous, such asbuilding a bomb, becausethis activity can harm others. A 'e or ous, our onlyifyouhaveHIV,tuberculosis,or asexuallytransmitteddiseasebecause conditionscanharm an innocent third party. Your right to autonomy is only limiterl thereispotentialharm to an innocent third party. Even in thesecases,the violation of nfidentialityislinited andtightlycontrolled.
Theconceptofpatientautonomyissimilarto thatofvoting. Ballotcounterscannotmake presumptionsbasedon rvhomtheythink you rvill vote for. They must definitelyknow whomyouintendedtovotefor whenyou werecastingyour vote.
This must bebasedon whomyouspecificallyvotedfor Another personcannotbring your proxy ballot to the electionbasedonwhichcandidatehethinks you shouldvotefor or which candidatewill belpyouthemost. Youmustcastyourvotein amannerbasedonyour clearlystatedwishes. Youhavearight to votefortherveakestcandidate. Youhavethe right to makethe "wrong" choice. In thesame way,adoctorcanonlyrendercarefor you basedon rvhatyou tell heryou want.
Patientautonoml givesyou the right to make the wrong choice about your health care. Evenif youareunableto make or expressyour health-care choices,the physician cannot simplymakedecisionsfor,vou that go againstyour wishes. This is one of tlre most difficult things for a physician to under- standandacton. Patients havethe autonomy offreewill.
Competency decisions transpire within the judicial s1'steni. Onlya court can determine that a patient is incompetent. All adult patients are considered conpetent unlessspecifically proven otherwise.
Physicianscan determine whether or not apatient hasthe capacity to understand bis medical condition. The physician makes a determination of the capacity of a patient to comprehend her rnedicalproblems basedon whether there is an organic delirium due to a medical condi- tjon such as a sodium problem, hypoxia, drug intoxication, meningitis, encephalitis, or a psychiatricdisorder. Thesedetcnninations arebasedin large part on a neurological exami- nationtesting memory, comprehension, reasoning,and judgment.
Any physician can make this determination. The physician does not have to be a psychiatrist. A psychiatrist may beusefulin rendering decision making capacity determinations in casesthat are complex or equivocal.
If the patient obviously does or does not have the capacity to understand, a psychiatristis r. With some exceptions,minors are generallynot considered competent to n. Only a parent or a legal guardiancan give consent for a minor. Neighbors, aunts, uncles,and grandparents cannot giveconsentfor treatment of a minor.
This rule doesnot cover life-threateningor seri- ousemergencies. Consent is alwaysimplied for emergencytrcatment. A physician should not withhold blood or surgery in a life-threatening accident just becausethe parent is not Present. What should you clo? Emergency treatment of a minor does not neeclexpressrrritten consent. Seekinga court ordcr i, olrn u tv. The mature minor is genera'y one. USMLE wilt not make hairsplitting distinctions like giving you a r4-year-old the day before her r5th birlhday.
She is generally healthy but is not accompanied bv a parent. What should ,voudo? Saying thut 1. These interventions u'wantecrpregnan. Somestatesrequireparentalnotificationand somedon,t. I A'I. Whatshouldyou do? Inthiscase,thereisno clearansweraboutwhetheror not thephysiciansl. Thereisno clearnationalstandardandit dependsupon the stateyou arein. The mostlikelyrightansrverwill indicatethenceclto encouragethc child to notify the parcnts herself,whichwouldbebest.
Sothe corrcctanswerchoicewill saysomethir. EmancipatedMinor A smallnumber of minors, particularlyat older agessuchas l6 or 17,may bc considered 'emancipated' or freed of the necd to haveparental consent fbr any medical care. The critc ria arethat the minor is married, self-st4rporting and living indepenclently,in the military, or theparcntofa child that they themselvessupport.
The criteriafor beingan emancipated n]inor relateto being no longer dependent on one's parentsfor support, In other words, if theminor does not livc with his parents,has a. Seriousmedicalconditionsor procedures suchas organ donation, surgery, or abortion may require a specific court order to allotv the legal standing of enancipation to be fully valid.
Only answer "court order,',. LimitationsonParentalRightofRefusalforMinors Although a competent adult can refuse any medical care she wishes,the same right does not automatically extend for parents concerning their children. Aspart of the surgerythe child will needa blood transfusion. The parentsareJchovah's Witnessesand refuseto giveconsentfor the transfusion.
Ihe parents'statedreli giousbeliefsarethat acceptingblood for their child would be a fateworsethan death. If the child needsblood to savehis life you must givetheblood evenoverthe objection of the parents. It may seemcontradictoryto seekparentalconsentfor a procedurethat you will perform evenif they refuse,but in this case,you shouldattemptto obtain their permissionnonetheless.
Withholding lifesavingtherapyfor a child is consideredcomparableto child abuse. The parents'right to practicetheir religionin termsof healthcarewould covertheir abilityto refusea transfusionfor themselves,but not for their child. Thisethicalconcepthasonly expanded. Parentscannotrefusetherapyfor childrenevenif theyareseverelybrain damagedor otherwisedevelopmentallydisabled.
Societydoesnot distinguishbetweenindividualsbasedon theirrelative 'worth. From this point of view,treatmentagainstparents'wishesin a life- threateningsituationisequallyvalidfor both afuturegeniusandachildwith cerebralpalsy who will not achievea mentalageabove2. One of the only timesparentsareallowedto refusecarefor their child is when the child is soill or deformedthat deathis inevitable. This is not a true refusalon the part of the parent.
This is reallyjust sayingthat parentscanrefuseonly the futile carethat thedoctor shouldn'tbegivingany. A patientwith the clearcapacityto under- standor onewho clearlydoesnot havecapacitydoesnot needa psychiatricevaluation. However,a psychiatricevaluationcanbe usefulto help makea determinationof capacity in ecuivocalor questionablecases. In addition, thc level of compctence necessaryto make financial decisions is different fron.
In other words, a patient rnay have a history of bipolar disorder making it impos- siblefor him to manage his financial decisions. Howevel the same person might still be consideredto have capacity to refuserrearment. There is r'virylimitiil iteiriiril liliced on p,ricnlto estJblih dp. The criteria to determineconlpetencein areasof finance are at a higher standard than those for refus- ing nedical procedures.
Your patient might have schizophrenia, mental retardation, or autismto the point of needing to live in a group home, but that does not mean they are incapableof understanding medical procedures. This means that an adult with a mcntal ageof 8 or l0 nay still be allowed to refuse medical procedures.
Our society is reluctant to strapa patient to his bed and perform procedures that would be painful or uncomfort ablefor the patient without his consent.
For irlstance,certain court casesin the past have allorveda patient with mental illness to refuse diagnostic procedures even though two out of three of the reasonsfor the refusal were delusional. This is an affirn. In addition, it shows that beneficence-trying to do the right thing for patients is considered lessimportant than autonomy.
Autonomy is given more wcight in decision making than beneficience. Autonomy haspriority. A personmay meet the legalstandard of competenceto refuseor acceptmedical careeven if sheis not consideredcompetent in other arcasof life, such asfinancial matters.
Thc explanationmustbe in languagethatthe paticntunder- standsandincludefull infbrnation regardingalternativetreatments. You fully inform the patient about the risk of transplantation,including the possibility of deveJopinggraft versushost disease. Afier the transplantationthe patientdevelopsgraftversushost disease,which is hard to control. The patient learnsthat there is an alternative treatmentcalledimitanib gleevec ,rvhichtloesnot includc the risk of graftversus host disease,but which rvill not cure the lcukemia.
The patient filessuit against you. What rvill be the most likely outcomc of the suit? In this casethe patient rvill probablywin the suit becausehe wasnot fully intbrned about the alternativesto the therapics mentioned. The physician has an ethical duty to ir.
In the casedescribcd in the previous exantple,the error was not that graft versushost cliseasedeveloped. Thc patient wasfully informed that this could occur and he chose the bone marrow triursplantation anyway. The error rasnot informing thc patient of an alternatir. At the same time, a patient could potentially die as an adverseeffect of treatment. This is only an ethical and legalproblen if the adverseevent happcns and the patient was not told that it could have happened.
The patient n. The patieitt must be ir. If thcy havethe capacityto understandand thcy chooseto do it ar. For example, a man underploescoronary angioplasty. He is inforned that tl. He knorvs he could havebypasssurgery instead.
He understandsand choosesthe angioplasty. He dies from a ruptured blood vessel. The fanily files suit against you. What will be the n. Although it is unfortunatethal the patientdied in this case,thereis no liability with regard to informed conscnt or ethical error. The patient mlrst undcrstand the risks of a procedure just as a drivcr rrust understand the risks before getting behind the wheel of a car. Why can't you sLlca car manufacturer if you die in a car accidcnt? Predominantlybecauseyou are an adult with the capacityto ur.
Each time you get in a car,there is i. For example, a patient comcs to the emergencydcpartnent with appendicitis. He is inforrned of the risks of surgery,and refusesthc procedurc both verbally and in rvriting.
Vhat was done rvrong here? Thepatientsmust be informcd both of the risk of thc treatmentasrvellasu,hatwill happcn iftheydon'tundcrgothe procedure. In this casethe physicianis liablein court becausehe neverdocunented that he infornred the patient of the possibility of appendiceal rupturc anddcathif the patient did NOT havethc procedurc. If apatientsignsa consent for an appcnclectomy,but when you open her up you find colon cancetyou cannotjust do the colectomvwithout first informing the patient of the acldi- tionalprocedureand obtainingher consent.
Thcre can be no presumptionfor conscntfor anythingbeyond what the patient specifically saiclsheconsenteclto.
For example, a 40 year-old man is undergoing a nasalpolypectomy. In the opcrat- ingroom you seea lesionon thc nasalturbinatethat the frozenscctiondetermines to be a cancer,You have found the cancer early but will need to rcsect the nasal turbinate to cure it. What should you do? This is true evcn if the physicianis sincere,tale'ted, accurate,and helpful. Beneficcncedoes not elirninate the need for informed consent.
You must col]sent to the cleaning. His good intcntions are not asimportant asyour right to do what you wanl n'ith your otvn property. Although it is preferable to have thc patient's last k'own wishes docunented in writing, following verbally expressedwishesis perfectly valid. The basisfor varidit. A patient cal. For example, a ycar-old nran with leukemia repeatcdly refuseschenrotherapy. He losesconsciousless and his rnother tclls you to givc the chentotherapy. What should you tell l. You must rcspectthe l.
If the paticr. If this rverepermissible,ther no one courdhavean estatewiI.
The ultimate form of ross of decisitur naking capacitv is death. For example, a ycar-old roman accontpanied by her husband comes to the emergency room seeking treatment for chest pain. The patient clearJytells you that shewants to haveher aorta repaired and shesignsconsent for the procedure. Shelater becomeshypoter. Her l. Informedconsent I ts e eyell: In the case above,becausethe patient exprcssedthat shewoulcr riketo haveher aorta repaired her hus- bandcannotgo againstthis aftershclosesconsciousness.
The samereasoningholds true if apatientrefusesa procedure or treatnent and then losescolrsciousDess. He has lost so much blood he rsunconscious. There is no family member availableto sign consent. What should youdo? Thcmanagementof an emergency is different. Becauscwe must inform the patientabout all the optionsof treatment,risksof the options,and risksof not performingthe procedurein a languagethe patientcanunder- stand,theconsentmustbeobtainedby a personqualificdto maketheexDlanation.
Forexemple,you arean intern who hasconsultedsurgeryto placea subclavian centralvenousline,Youonlyknow accessmustbeobtained. On thephonethesurgicalresident says,"Can. Youmustnot bein a position to explainthe risksof proceduresthat you did not decide on. Ifthe patientdevelopsa pneumothoraxandyou do not knowwhy theinternaljugular approachisnot beingused,you cannotadequatelyinform thepatient.
You must, at the risk of seeming difficult, tell the surgical residentthat he must obtain the consenthimsell If a complication occurs,you cannot say, "l wasjust gettinga papersigned;I didn't know what it meant. If you tell the patient that he could havea pneumothorax and might need a chesttube and document this, and the patient still signs consent, then you are not at risk. The patient also cannot say latel "l rvasjust signing a piece of paper.
I didn't know rvhat it meant.
This is a legitimate form of consent by an authorized surrogate decision maker. Forexample, a 65 year-old r. The head CT shows a ring or contrast-enhancingi lesion consistent with a brain abscess. The patient remains persistently confused, but is not deteriorating. You need to perform a brain biopsy but there is no family member or health-care proxy who comes to visit hini.
His wife is housebound from multiple sclerosisand cannot get to the hospital. You have hcr on the phone but the nurse is refusing to be the witness for the consent, saying that telephone consent is not valid. As with all forms of verbal communication, oral advancedirectives,and telePhoneconsent are more difficult to prove if contested. However, they are equally valid. If a health-care worker is uncomfortable taking the telephone consent,useanother member of the health- care team to act asyour witness for the consent.
You can educatethe nurse later. You can take consent tbr cardiothoracic surgery over the phone if that is the only way to speakto the surrogate. The real questions about telephone consent are these: Is the personyou arespeakingto reallythe surrogate? Doesthe personknow the paticnt'swishes? Hence, no matter whatyour personal feeling may be, the fetus doesnot haveany intrinsic 'rights' asa person.
So,even though a week-old fetus would be a viable child if the fetus were removed from the uterus, all health-care decision making and ethics are basedon the choicesof the motherand her interests.
Ifparents havea child born at 34 weeksof gestationalagein need of a blood transfusion to saveits life, they cannot refuse lifesaving therapy for the child evenifthey are Jehovah'sWitnesses.
The statewould intervene in the interestsof the child. However,if the same child at 34 weeks of gestational ageis still in the uterus, the mother canreluse or accept whatever therapy she wishes without specific regard for the fetus.
Hence,a pregnant woman may refusea lifesaving transfusion. Shemay refusea Caesarian sectionto remove the child even if this will put the life of the fetus at risk. The father has no legal right to make an informed consent fbr any pregnancy- relatedissuebecausethe questions concern the body of the mother.
A mother's autonomy overher own body is felt to be more important than the rights of the fetus or of the father. Onlythe mother can sign informed consent for any procedure or treatment during preg- nancy. Any answerchoice that has 'Ask the father. Ifthe patient hasDown syndrome andhasa family member to make decisions for her then the question will be straightfor- ward-ask for the consent of the parent or guardian.
If there is no parent or guardian, the circumstanceis much more difficult. A third party court designeemust make a decision1, basedon the bestinterestsof the patient even though the patient may neverhur,. This is an advance directive written or formal. An advancedirective cannot even be given by a patient who hasnever had capacity.
The same is true of a living will. The next best method of giving consentis "substituted judgment.
This is also not possiblefor a person who hasnever been competent. The weakestform of consentis to act: However, it is thc best method of obtainins consent for doctors treating a person who has never had capacity.
A legalguar. In the absence of a family member the guardian is either appointed by the courts or is the administrator of the health carefacility, such asthe medical director. I rg ause ning hich ence 'ator Chapter4: Communications betseen paticnt and physician are highly privileged and this confiden tialit,vcar. Medical information cannot be passedto anyone l ithout thc direct consent of thc patient. Confidentiality also includes keeping a patient's medicalinformation priyate even from his friends and family unless the patient expressly saISit is okay to releasethe information.
The fact that a patient may have a good rclation shipwith his familv and fiiends is absolutely no excuseto assumethat the patient wants his medicalinformation passedon to them. I have an exccllent relationship with my mother; hon'ever,even though I am a doctor or mavbe becauseofit shedoesnot want me to know herlist of medications. Shehasno obligation to give me a reasonrvhyshedoesnot want rne to know which mcdications she is taklng.
If I call her doctor and sa1 "l just want to help mom vvith hcr mecls. What is she on? I know you mean well, but I iust can't talk to you about your mother's medical problen. The patient is arake and alert. His wife comesto you demanding inforn. She shorvsher identification card verilying this. What shouldyou tcll her? For example, the wife becontesinfuriatcd and storms off the floor, threatening to sueyou. You apologize to the patient for upsetting his wife by not speaking. The patient responds "On the contrary, Doctor, you did great.
Although she is still my wife, we arc finalizing our divorce and we do not live together. I expect to be clivorced and rcmarriecl lvithin the next few months. Sheonly wanted information about me to useagainstme in thc divorce proceeding. Thanks for protecting my confidentiality. However, the information can only be transferred if the patient has signed a consent or releaseform requesting the transfer of information.
It is the patient who must sign the consent to releasethe infornation, not the health,care provider. This is how the system guarantees that the patient's medically privileged inforrnation only transfers to those people to whom the patient rvants it to go. For example, yott receivea phone call from another physician who is rvell known to you in your local community.
What do you tcll him? You should tell another physician requesting information to send you the patient's signed releaseform befbre you send him the infonration. Her soncallsyou anclasksyou to givehim the infornation bccausc the family is concerned that the bad news will depresshis mothcr. He is sincerc and genuine in his concern. There is no basisfor informing the family and not the patient. It is exactlythe oppositc: Maybethe patient wantsher family to know and maybeshedoesn't.
It is alwaysthe patient's decision. There is a rare exception in the caseof a patient with a psychiatricdisturbancein rchom to inform if a meclicalcondition might induce a suicide attel1lpt. He shows 'ou proper identification stating that he is a government employee. He is looking for your patient's immigration statusand for his medical condition.
What do you tell the investigator? Ifthe investigator doesnot havea searchwarrant, then you must refusehim access to the files. You are not under any obJigation to make immigration statusinvestigations of vour patients nor to provide this information to third parties unless it is at the request of thepatient.
This right of privacy also coversgeneticinformation. You must keepthe medi calinformation private from a patient's co-workers aswell. The Tarasofcasc ,in whicha mentally ill paticnt toid thc psychiatristof his intent to harn sonreoDe,is a famousexample of this ln this type of case,thc physician must inform larvenlorcement asrvell asthe potential victim.
Other casesin which it is lawfrl. Horvever,all effortsmust first bc made to enlist the patient to inform tr. No lawsuit agai'sta physicia' for brenkingc. Although the medical record as ap,hysicaloblect rcnrains al. For example, you have a new patient with a complex history r,ho hasbecn tryingto get a copy of her record from her previous doctor. The practice administrator inforns you that thc paticnt is extremely unpreasantand aim.
The patient rcturns to seeyou thc tbllowing iav anclasksr. What tlo ,ou tell her? No one has a right to interfere with this for anyreason. You should tell her that she should be allowed a copy of the chart. A patient doesnot have to give her doctor a reason for requesting hcr own property, and she is entitledto this information whether or not she is "pleasant.
The need for information to take care of patients outweighs the physician'sright to payment. This allows anyone reading the chart to seewhat was originally thereand it ensuresthat medical errors are not being covereclup. This makesit look asif you arehiding medical errors. If you forget to put in a note or document somcthingand want to add it the next day,you cannot put a note in the chart with the old date. If you forgot to put a note in the chart documenting a patient's condition yesterday, ,youcannot write a note today with yesterday'sdate on it.
In other words, you canl]ot,back- date'notes. Your notes must alwaysbear the current date and time. There is no ethical or legaldistinction between withholding and withdrawal of medical treatrnent. For example, a year-old man with diabetes and hl. He is equivocal about spending the restof his life on dialysis,but he agreesto start. The patient is not depressedand is fully alert. Six months after starting dialysis,he comesto realizevery clearly that he absolutelydoes not wish to continue.
You have no doubt that the patient has full capacityto understand the implications of this decision. Although there may be an enotional distinction between withholding dialysis and stop- pingit after it has started,there is no ethical distinction between the two. It is n. If I hlre you to repair my house, but after a few days I deciclethat I don't like the work you are doing, I havethe right to tell you to stop working on my house.
You cannot say, "Sorry, once we startajob we finish it whether the owner likes it or not. The patient has theright to stop treatment. For example, an elderly man with COPD progressesto the point of needing mechanical ventilation on a chronic basis. He tells you, alier long consideration, that he just does not want to live on a ventilator. What should you tell hirn? He sayshc will gerbetter"r;;;;;; to-tb. He sayshewantsthe ventirarorrn. Overall, this caservill be ,h" ";;i.: Shehasthecapacityto understandthatshewill ai.
Vhatdoyou tellher? She problcms. For example, an HlV-positive,lehovah,s Witness who is now pregnant needs atransfusion to live and haye a deprcssedandisfuuyalert. A at lc bi!!!! Yon cannot transfuse!
The situatior. The fact that the patient is pregnantdoesno1alter the ansrver. Theprevailingconsensusis that personhoodbeginsaftcr birth. Until delivered,the fetus isconsidcredanother part of thc mother's boclv. Another wrong ansrverwould be uaitinguntil the paticnt is no longer consciousand then transfusingher. Theanslversto all of the examplesdescribedin this scctionare clearbecausein eachcase thepatientis an adult rvith the capacitl,to understandhis or her nredicalproblems.
If the casedescritresdeprcssionin the patientthenyou shouldchoosepsychiatricconsultation,or choosea trial of cither belravjoral therapv or antidepressantntedication asthe ansrvcr. Patientshavethc right to try therapyfor a while ald thcn stop it if it doesnot suit then]. This is true even if it means they will clie from stopping dialysis, mechanical vcntila tion, HIV medications,or blood transfusions.
The typc of treatnlent does not change the answer. A CBC or cardiac bypass is ethically antl lcgally indistinguishable. Therefore,in a scnsc,treatinga paticr. Thereis no distinction betweenwithholding anclwithdrarving care.
If you are doing sonc thing the patient does not ''ant,you cannot sa,v, "We11, sorry, but I already started, and I rcallvhaveto continuc.