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Page 1: Law, ethics and clinical judgment in end-of-life decisions—How do Norwegian doctors think?

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Resuscitation 83 (2012) 1369– 1373

Contents lists available at SciVerse ScienceDirect

Resuscitation

jo u rn al hom epage : www.elsev ier .com/ locate / resusc i ta t ion

linical paper

aw, ethics and clinical judgment in end-of-life decisions—How do Norwegianoctors think?�

arianne K. Bahusa,∗, Petter Andreas Steenb,c, Reidun Førdea,d

Centre for Medical Ethics, Institute of General Practice and Community Medicine, University of Oslo, P.O. Box 1130 Blindern, NO-0318 Oslo, NorwayUniversity of Oslo and Oslo University Hospital, Prehospital Centre, Oslo UH, 0424 Oslo, Norway

r t i c l e i n f o

rticle history:eceived 8 January 2012eceived in revised form 23 March 2012ccepted 10 April 2012

eywords:myotrophic lateral sclerosis (ALS)mergency situationsnd-of-life decisionsthicsawatient autonomy

a b s t r a c t

Aim: According to Norwegian law, an autonomous patient has the right to refuse life-prolonging treat-ment. If the patient is not defined as dying, however, health personnel are obliged to instigate life-savingtreatment in an emergency situation even against the patient’s wishes. The purpose of this study was toinvestigate how doctors’ attitudes and knowledge agree with these legal provisions, and how the statu-tory provision on emergency situations influences the principle of patient autonomy for severely ill, butnot dying, patients.Method: A strategic sample of 1175 Norwegian doctors who are specialists in internal medicine, paedi-atrics, surgery, neurology and neurosurgery received a mail questionnaire about decisions on end-of-lifecare in hypothetical scenarios. The case presented concerns a 45-year-old autonomous patient diag-nosed with end-stage ALS who declines ventilatory treatment. Recipients were randomly selected fromthe membership roster of the Norwegian Medical Association. 640 (54.5%) responded; of these, 406 hadexperience with end-of-life decisions.Results: 56.1% (221/394) stated that ALS patients in such situations can always refuse life-prolonging

treatment, and 42.4% (167/394) were of the opinion that the patient can normally refuse life-prolongingtreatment. 1.5% (6/394) stated that the patient cannot refuse life-prolonging treatment.Conclusions: The answers indicate that the respondents include patients’ refusal in an overall clinicaljudgement, and interpret patients’ right to decline life-saving treatment in different ways. This mayreflect the complex legal situation in Norway regarding patient autonomy with respect to the right ofseverely ill, but not dying, patients’ right to decline acute life-saving treatment.

. Introduction

Medical interventions can be declined by competent andnformed adults, even when the prognosis is good and the refusalesults in the death of the patient. In most western countries thiss an overall judicial consensus, and is included in the Europeanonvention for the Protection of Human Rights and Fundamentalreedom article 8.1–3

Patient autonomy has been legally regulated in Norway for

everal years.4 Nevertheless, it is difficult for health personnel toomply with the main rule of patient autonomy in the case ofatients with non-curable lethal diseases, because of exclusionary

� A Spanish translated version of the summary of this article appears as Appendixn the final online version at http://dx.doi.org/10.1016/j.resuscitation.2012.04.008.∗ Corresponding author. Tel.: +47 38 02 11 11/+47 416 99 516;

ax: +47 38 02 11 88.E-mail address: [email protected] (M.K. Bahus).

c Tel.: +47 906 86 007.d Tel.: +47 22 84 46 64/95 13 77 30; fax: +47 22 85 05 90.

300-9572/$ – see front matter © 2012 Elsevier Ireland Ltd. All rights reserved.ttp://dx.doi.org/10.1016/j.resuscitation.2012.04.008

© 2012 Elsevier Ireland Ltd. All rights reserved.

provisions. In Norway, health personnel are obligated to act inemergency situations, even when a patient with decision-makingcapacity refuses treatment. An exception from this “duty to receiveacute life-saving treatment” is if the patient is considered to bedying.5,6 Denmark has a similar legal problem according to theDanish Council of Ethics.7,8

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative con-dition defined by progressive weakness. In the last stage, patientslose their ability to breathe and become dependent on ventila-tory support to survive.9,10 This is an invasive treatment for thepatient. In Norway there are geographical variations in home-basedmechanical ventilation treatment of patients.11 The reasons forthis are unknown, but non-medical considerations are probablyinvolved, such as doctors’ attitudes regarding utility and perceivedresponsibility for health care resources.12 Although the expensesare covered through taxation in Norway, life-saving treatment may

be withheld because of resource constraints.13

The relationship between an ALS patient with decision-makingcapacity and the responsible doctor is demanding, since a patient’sability to exercise autonomy depends to a large extent on

Page 2: Law, ethics and clinical judgment in end-of-life decisions—How do Norwegian doctors think?

1370 M.K. Bahus et al. / Resuscitation 83 (2012) 1369– 1373

Table 1The doctors’ experience with end-of-life decisions related to their specialty.

Specialty Experience withend-of-lifedecisions

Specialty (percentwith 95% CI(N = 610))

Members of the NorwegianMedical Association < 70years of age in Sept 2006a

Paediatrics 62% (76/122) 20 (17–23)% (122) 16% (478)Surgeryb 72% (94/130) 21 (18–25)% (130) 31% (919)Internal medicine 66% (203/309) 51 (47–55)% (309) 44% (1309)Neurology 45% (22/49) 8 (6–11)% (49) 9% (275)All 65% (395/610) 100% (2981)

a The doctors who received the questionnaire were not limited to <70 years of age.e.

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b Including four neurosurgeons, whereof two with end-of-life decision experienc

ontinuous conversations about the patient’s preferences withespect to future life-prolonging treatment. The decision to refuser accept ventilatory treatment might be the most difficult fornvolved parties. The ethical and legal aspects of resuscitation havereviously been put on the agenda.14 There is very little empiri-al data today on doctors’ attitudes towards, and legal knowledgef, the right of competent ALS patients to decline life-prolongingreatment. This study is an attempt to increase this knowledge. Aurther aim is to discuss whether the doctors’ attitudes agree withhe law, and whether there is a need for legal clarification. This dis-ussion may have implications for other severely sick patients withrogressive, lethal diseases who refuse life-saving intervention.

. Methods

In February 2007, a questionnaire was sent to a random samplef 1175 Norwegian doctors with the following specialties: inter-al medicine, paediatrics, surgery, neurology, and neurosurgery,s they are often confronted with end-of-life decisions. More than9% had a main specialty and over 40% had a branch specialty. Theample was selected from the members of the Norwegian Medi-al Association, of which 95% of Norwegian doctors are members.ue to a mishap, anaesthesiologists were not included as planned.

reminder was sent to all 1175 doctors in June 2007.Before distribution, the questionnaire was evaluated critically

y two anaesthesiologists, one paediatrician and one doctor with-ut specialization, and subsequently by an interdisciplinary clinicalthics committee. Important terms in the questionnaire were dis-ussed at a meeting with a group of doctors at a university hospital.

The doctors who received the questionnaire were asked aboutheir experience with end-of-life decisions, and to adopt a positionn the ethical and legal issues implicit in life-prolonging treat-ent for several seriously ill patients. In this article we consider

he answers related to the following scenario:A 45 year old man was diagnosed with ALS two years ago. He is

arried and has two teenage children. The illness has progressedast, and he has pareses in all extremities and severely reducedreathing function. His speech is affected. During the last outpa-ient consultation he was conscious and fully oriented about hisondition, and declared on request that he did not want ventila-or treatment when his breathing function fails. His answer wasocumented in the medical journal.

One of the questions that acompanied the scenario was: Howar does the patients’ right to refuse life-prolonging treatment gon such situations? The following response options were given: can-ot refuse, can normally refuse, or can always refuse. The doctorsere allowed to make additional comments. The comments were

rouped into four categories, based on the most frequent com-ents: (1) it is unproblematic to act according to the patient’s wish;

2) the patient’s wish must be part of a global clinical judgment,3) the patient must have an opportunity to change his mind, (4)

other comments. If more than one comment was given, they werecategorized individually.

The program SPSS was used to analyze the data. Doctors’ ageswere grouped into two categories: less than ten years remainingof their career (year of birth before 1950), and more than ten yearsremaining of their career (year of birth from 1950 onwards) at thetime they answered the questionnaire. Significance of differencesin proportions was tested with Pearson’s chi square test.

3. Results

The questionnaire was returned by 54.5% (640/1175) of the doc-tors. 63% (406/640) had completed partly to all of the questions andwere considered to have experience with the subject. 37% of therespondents (234/640) considered the subject as “not relevant” andonly biographical data were completed in SPSS. The specialty distri-bution of the respondents deviated some compared to the membersof the Norwegian Medical Association at the time when the samplewas selected (Table 1). 82% (322/391) of the doctors answered thatthey had treated severely ill patients during the last three monthsbefore they answered the questionnaire, and 63% (245/392) hadparticipated in end-of-life decisions during the last three months.

394 doctors expressed an opinion on an ALS patient’s right torefuse life-prolonging treatment. 56.1% (221/394) answered thatthe patient always has the right to refuse such treatment, 42.4%(167/394) stated that the patient can normally refuse treatment,and 1.5% (6/394) answered that the patient cannot refuse. Theresponses according to the alternatives “can always refuse” and“can normally refuse” were distributed equally with respect togender and age category, but not with respect to specialities. Neu-rologists (p = 0.007) and surgeons (p = 0.02) chose the alternative“can always refuse” compared to “can normally refuse” more oftenthan paediatricians (Table 2).

89 doctors commented that respecting the patient’s decisionwas no problem. 58% (52/89) of these doctors had answered thatthe patient “can always refuse”, and 42% (37/89) had answered “cannormally refuse”. One doctor stated: “I don’t understand the dis-tinction between can “normally” or “always” refuse. If the patientis clear and oriented I suppose he can always refuse, but there willprobably be exceptions too.” Another physician who had answered“can normally refuse” wrote, indicating knowledge of the precon-ditions for autonomous choices: “Provided that you have beentreating the patient for a long period, and you know that the patienthas really made up his mind and, not least that his quality of life isgetting worse.”

22 doctors commented that the patient’s decision was to beincluded as part of the global clinical judgment. 14 doctors com-

mented that the discussion with the patient must be repeated sothat the patient is given a chance to change his mind. 20 doctorshad other comments, e.g. there is always uncertainty as to whetherthe consequences of both options have been understood.
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M.K. Bahus et al. / Resuscitatio

Table 2Distribution of replies by specialty to the question of an ALS patient’s autonomy inrefusing life-prolonging treatment.

Answers Paediatrics

N= 71

Surgerya

N= 91

Internal

medicine

N= 201

Neurology

N= 22

Cannot refuse 1.4% (1) 3.3% (3) 1% (2) 0% (0)

Can normally

refuse

54.9% (39) 36.3% (33) 42.3% (85) 22.7% (5)

Can always

refuse

43.7% (31) 60.4% (55) 56.7% (114) 77.3% (17)

p = 0.007 for differences between “can normally refuse” and “can always refuse”between paediatrics and neurologists (chi-squared, shaded area), and p = 0.02 fordaa

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ifferences between “can normally refuse” and “can always refuse” between paedi-trics and surgeons (chi-squared, stippled area).Including two neurosurgeons.

. Discussion

.1. Study limitations

The responses in this study must be read with caution due to suboptimal response rate. Nevertheless, the results are based onhe answers from doctors who have expressed experience with theubject, and the answers should indicate how doctors relate to theaw and to the principle of patient autonomy.

Hypothetical scenarios cannot reproduce the complexity ofeal life situations. However, we believe it is not unlikely thathe doctors’ attitudes may be consistent with how they actuallyould have dealt with end-of-life decisions concerning severely ill

utonomous patients.

.2. ALS patients’ legal right to refuse life-prolonging treatment

Cognitive impairment of varying degrees appears to be commonith ALS.15 An ALS patient’s decision-making capacity must be con-

idered. A patient who refuses life-prolonging treatment must beble to understand the impact of such a refusal. Many of the com-ents revealed that the doctors emphasized this. Repeated steps

f adaptation and acceptance may be involved in reaching suchn understanding. Dependency on others, lack of control of theirwn situation, a reduced ability to communicate, may influencehe patient’s will to live.10

There is no information in the scenario that indicates a lack ofegal criteria for informed decision-making; the patient has under-tood his medical situation, prognosis and treatment options, heesponds directly to an unambiguous question, and he knows thatefusing mechanical ventilation most likely will lead to his death.o information indicates severe depression or dementia. Patientsho face medical decisions with serious consequences are subject

o being over- or under- influenced by their doctors.16 There-ore it is of major importance to scrutinize doctors’ attitudes andegal knowledge. It is vital that clinicians have sufficient insightnto health law, including knowledge of how a patient’s decision-

aking capacity is assessed. They have a duty to provide sufficientnd individualized information to enable the patient to relate the

nformation to his own situation and finally make a decision inccordance with his own values and wishes. Studies indicate thatatients with severe chronic diseases may change their prefer-nces, usually to a wish for more treatment.17,18 Doctors must

n 83 (2012) 1369– 1373 1371

accordingly maintain a continuous dialogue with the patient aboutforthcoming medical decisions related to the progression of theillness.

A small majority answered that the patient “can always refuse”life-prolonging treatment (Table 2). The fact that a larger numberof neurologists than paediatricians answered “can always refuse”might be due to their different patient populations. Paediatriciansmay be influenced by the fact that their patients are representedby parents who according to Norwegian law cannot always refusetreatment for their child if the health care system considers treat-ment to be in the child’s best interests.19,20 The fact that a largernumber of surgeons than paediatricians answered “can alwaysrefuse” might be attribute to their role in the decision-makingprocess. Paediatricians normally have treatment responsibility andtherefore continue to follow the child and its parents/surrogatesfor a long period of time, while surgeons normally have theresponsibility for a limited period in connection to a surgical inter-vention. More importantly, however, the answers probably reflectthe complex legal situation in Norway concerning the positionof patient autonomy for severely ill, but not dying patients. Inthe following we will present means of dealing with the legalsituation.

4.3. Exclusionary provisions in Norway

Patient autonomy is a fundamental part of health law inmany jurisdictions. In Norway an exclusionary provision from theautonomous patient’s right to refuse medical treatment came intoforce in 2001, based on society’s interest in the preservation of life.According to the Health Personnel Act, a patient in an emergencysituation cannot refuse urgent medical help.21 Health personnelhave a moral obligation to protect life and do no harm. Accord-ing to The General Civil Penal Code, there is also an obligation toprevent self-inflicted injury.22 Unlike e.g. England and Germany,advance directives have no formal judicial status in Norway, whichis a further constraint on individual autonomy.23,24

From this duty to help in emergency situations there are onlythree exceptions: the patient is defined as dying, on hunger strike,or refuses to receive blood because of strong convictions.4 Itremains unclear to doctors how they can best respect and exer-cise the right to refuse medical life-support interventions. The gapbetween ethical and legal concepts of patient autonomy in Norwayconstitutes a dilemma for both doctors and patients with progres-sive lethal diseases. The law has been criticised for this reason.25

4.4. When is a patient dying?

Patients in Norway defined as “dying” can deny emergencyhealth care, which correspond to the fact that doctors according toethical principles have no obligation to provide futile treatment.26

An ALS patient will normally have a status as seriously ill, but notdying, for a long period of time. It is difficult to know exactly whenthe status of an ALS patient changes from “very ill” to “dying.” Thelaw does not define the term “dying,” and it may depend on thelevel of medical intervention. An ALS patient may, for example, livefor several years on ventilation support.

It has been argued that patients with irreversibly impairedvital functions which render the patient dependent on mechanicalventilation, fulfil the criteria as “dying.”27 This is an extended inter-pretation of the term dying which seems to be based exclusively onobjective medical criteria. The patient’s personal perception of hisown medical situation is not taken into account. In order to respect

the patient’s perspective of his life and illness, the term “dying”should, in our opinion, be based on both subjective criteria (thepatient is aware of his illness and closeness to death) and objectivecriteria (on the basis of medical facts the patient is considered to
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e dying), as we do in the law of succession when considering lifend death dispositions.28

.5. The responsibility to give medical help

The duty of health personnel to act in emergency situationsnds when other qualified health personnel have taken over theesponsibility to provide medical help. The question then arises: Athich point have other qualified health personnel taken over the

esponsibility to provide medical help?Patients with progressive lethal diseases should have a contin-

ous dialogue with the responsible doctors about the developmentf their illness, the patient’s subjective perspective of his situa-ion, the need for medication, treatment options for the next stagef their illness, and predictable crises. Conversations between theatient and their responsible doctors concerning future interven-ion are an essential part of the whole treatment process, andhould therefore, in our opinion, be included in the term ‘adequateedical help.’ This help should also be viewed as adequate if the

utonomous patient declines further intervention. Thus, the com-etent ALS patient who has informed his doctor that he does notant ventilator treatment is being adequately taken care of with-

ut this intervention, also in subsequent emergency situations. Inuch situations, intensive care treatment may be degrading in theyes of the patient, and regarded as a violation of both ethics andaw.

.6. Is there a difference between predictable and unpredictablemergency situations?

According to Norwegian legislative history, an emergency sit-ation is an acute situation where the patient needs treatment

nter alia to establish or maintain vital life functions, or to pre-ent or restrict a severe reduction in vital functions.29 The healthersonnel’s duty to help in these situations is regulated on therounds that it is in the interest of society to sustain respect forife. Patients with progressive, lethal and predictable diseases havehe opportunity to express their preferences fairly precisely, and ithould not be in society’s interests to reduce these patients’ righto self-determination. Therefore, in our opinion, there should be

distinction between unpredictable acute life-threatening situa-ions which are “true” emergency situations and predictable crisisn lethal diseases, which are “untrue” emergency situations, butegislators have not made such a distinction.

.7. Law, ethics and clinical judgment

More than four out of ten doctors in our survey state that aatient with ALS can normally, but not always, refuse life-savingreatment. This does not necessarily indicate lack of legal knowl-dge, or unclear legal regulation, but may well be attribute to thehrasing of the response alternatives. For doctors, there are hardlyny absolute rules without exceptions, as some of the respondentsommented. Even among the 89 doctors who commented thatespecting the patient’s decision was no problem, 42% answeredhat a patient in such situations normally, but not always, has theight to refuse treatment.

The comments made by the doctors in this study indicate thathey seem to include the principle of respect for patient auton-my in connection with the patient’s medical condition, treatmentossibilities and their own previous clinical experience. Thus, theirwn clinical judgment in each particular situation may weigh

ore heavily than legal rules. It seems to be harder for doctors

o accept absolute patient autonomy if medical intervention mayive the patient an acceptable quality of life. Respect for life andhe treatment imperative are the triumphing principles if there is

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n 83 (2012) 1369– 1373

any medical doubt. These findings indicate that doctors place greatmoral emphasis on their own clinical judgment, and less emphasison the patient’s legal rights.

5. Conclusions

Our survey reveals that doctors’ emphasis on the importanceof patient autonomy varies. There is a gap between legal and ethi-cal reasoning in this and similar scenarios, where the autonomousviews of a patient may be ignored and overridden. Interdisciplinaryclinical ethics committees may be valuable forums for discussingthe ethical and legal implications of patient autonomy, particularlyconcerning the fact that there at present is no legal distinctionbetween an unpredictable life threatening situation and a pre-dictable crisis in a lethal disease.

In order to promote the patient’s perspective, secure patientautonomy and avoid degrading treatment; the term “dying” shouldbe based on both subjective and objective criteria, and the contentof the term “medical treatment” should include the doctor’s con-versations with the patient about the next stage of the patient’sillness, predictable crises, and other serious questions related to thepatient’s health. This implies that in these situations, the patient’sdoctors have assumed the responsibility of providing medical help,guided by conversations with the patient, and health personnel donot have an obligation to intervene in any subsequent emergencysituations.

Conflict of interest statement

Marianne K. Bahus, Petter Andreas Steen and Reidun Førde haveno conflicts of interest.

Acknowledgements

We thank Professor Olaf Gjerløw Aasland for assistance in thequality assurance of the statistical material, and Professor ErlingJohannes Husabø for contributions on legal matters. The studywas supported financially by the South-Eastern Norway RegionalHealth Authority and Eckbos Legater. The study sponsors had noinvolvement in the preparation of this article.

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