Ethical decision making in neonatal units — The normative significance of vitality

Medicine, Health Care and Philosophy 4: 193–200, 2001.© 2001 Kluwer Academic Publishers. Printed in the Netherlands.

Scientific Contribution

Ethical decision making in neonatal units1 – The normative significanceof vitality

Berit Støre Brinchmann∗ and Per Nortvedt1Department of Nursing and Health Care, Centre for Professional Studies, Bodø Regional University, Centre for Medical Ethics,University of Oslo, N-8049 Bodø, Norway; 1Institute of Nursing Science, The Faculty of Medicine, University of Oslo, Norway(∗author for correspondence, E-mail: [email protected])

Abstract. This article will be concerned with the phenomenon of vitality, which emerged as one of the mainfindings in a larger grounded theory study about life and death decisions in hospitals’ neonatal units. Defin-ite signs showing the new-born infant’s energy and vigour contributed to the clinician’s judgements about lifeexpectancy and the continuation or termination of medical treatment. In this paper we will discuss the normativeimportance of vitality as a diagnostic cue and will argue that vitality, as a sign perceived by doctors and nurses,has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases wherethe child’s life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but onlywith certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeuticjudgements.

Key words: clinical decision-making, end-of-life decision, ethics, moral realism, premature infants, preterm,vitality

Leben heißt: Kraft, Wille aus demUrgrund kommend, in ihm wiederaufge-hend, heißt Fühlen, Empfinden, Leiden(Albert Schweitzer, 1919, p. 124)

Introduction

This article is concerned with the phenomenon ofvitality, which emerged as one of the main find-ings in a larger grounded theory study about lifeand death decisions in hospitals’ neonatal units(Brinchmann, 1998a, 1999a,b, 2000). Decisionsabout withholding or withdrawing medical treatmentare essentially ambivalent because of the prognosticuncertainties involved. One study showed that percep-tions of the infant’s vitality were important in decidingwhether to continue or terminate active treatment ofvery premature and critically ill children (Brinchmann,1999b, 2000). Professional knowledge and experience,together with definite signs of the child’s energy andvigour contributed to decisions about whether or notto continue treatment. These decisions were stronglyinfluenced by the subjective experiences and particularjudgements of nurses and doctors.

In this paper we will discuss the normative legi-

timacy of vitality as a diagnostic cue. We will ask:to what extent does vitality, as a sign perceived bynurses and doctors, have moral significance and howcan these strongly held intuitions be understood asethical in the first place? More importantly: to whatextent can these subjective experiences of doctors andnurses ground ethical decision-making in cases wherethe child’s life is at stake? Signs of vitality, as doctorsand nurses experience them, may be open for accusa-tions of being too subjective and unreliable as basis formoral judgements.

We argue that ambivalence and uncertainty aredistinctive features of ethical decision-making inneonatal care. There are, however, several ways ofdealing with a degree of capriciousness in ethicaldecision-making about these particular cases. Thereis a need for interdisciplinary information-gatheringand proper discussion of particular cases, as well asa better understanding of what constitutes the moralfoundation of clinical investigations in neonatal care

194 BERIT STØRE BRINCHMANN AND PER NORTVEDT

which will contribute to more qualified decision-making.

The intention of this paper is to shed light on oneof the most important findings of the study, vitality,and to discuss the extent to which vitality in prematureinfants can be used as an ethical appeal in situationswhere staff are in doubt as to whether active treatmentshould be continued or terminated.

Previous research

Most empirical qualitative research in the area ofethical decision making in medicine, both generallyand in the neonatal field, has comprised of retrospect-ive interviews of nurses and doctors (McHaffie andFowlie, 1996; Holm, 1997; van der Heide et al., 1997;Catlin, 1999). Some researchers have been especiallyinterested in studying differences in ethical reason-ing between nurses and doctors, and men and women(Udén et al., 1992; Lindseth et al., 1994; Sørlie et al.,2000). Few studies have been found that are concernedwith parents’ participation in the decision makingprocess (Anspach, 1993; Pinch and Spielman, 1990,1993, 1996; van der Heide et al., 1998; Cuttini et al.,1999). In a field study in USA, Anspach (1993) studiedlife and death decision making in neo-natal hospitalwards, with focus on how organisational and struc-tural factors influenced the decision making process.Anspach found that both doctors and nurses madeuse of technological, perceptual and interactive signs(cues) in evaluating the infant’s prognosis.

Modern developmental psychology has beenconcerned with quantitative registration of the beha-viour of premature infants (Als et al., 1982; Tribottiand Stein, 1992; Miller and Quinn-Hurst, 1994). Ata consensus conference “Limits for the Treatment ofPrematurely born Infants” held in Norway in 1998,it was suggested that the evaluation of an infant’svitality and will to live was often of decisive import-ance in cases where there was doubt about whetheractive treatment should be commenced. In a Danishreport on very premature infants (1994), it was recom-mended that maturity/chances of survival criteriashould comprise objective, professionally describableelements and elements of professional judgement. ANorwegian survey on attitudes to treatment of verypremature infants showed that the infant’s vitality atthe time of birth was given decisive weight in thedecision of whether treatment should be commenced.Vitality was, however, not mentioned in the evalua-tion of whether active treatment should be termin-ated. Instead the infant’s suffering was given decisiveweight (Kvestad et al., 1999). No previous compar-able field studies have been carried out in Norway

with focus on ethics and neo-natal medicine. Thefocus for the present study is on the ethical dilemmasconnected with the termination of active treatment. Inthis study vitality emerged as a criterion when therewas doubt about whether active treatment should beterminated.

Research method

The present study builds on 120 hours of field obser-vations and 22 qualitative interviews with nurses anddoctors in a neo-natal hospital ward during 1995–1996 (Brinchmann, 1998a,b, 1999a). In addition, 20qualitative interviews were carried out in the period1997–2000 with parents who had experienced lifeor death decision-making concerning their criticallyill and/or premature infants. The parents came fromdifferent parts of Norway. Contact with the parentswas established through the organisations for parentsof premature and prematurely dead infants, and of chil-dren with cerebral palsy, as well as through healthvisitors, paediatricians and other health profession-als. The data was gathered and analysed continuouslyusing the comparative method (Grounded theory)(Glaser and Strauss, 1967; Glaser, 1978, 1998). Theanalysis comprised open and selective coding, writtenmemos, theoretical sorting and coding and develop-ment of a theoretical framework (Brinchmann, 1998b).The analysis indicated that life or death decisions inneonatal wards were marked by ambivalence and thatmaking these difficult ethical decisions often was noteasier even if staff were very experienced. When therewas uncertainty, the decisions appeared to be based onan assessment of the infant’s vitality and spark of lifebesides the more objective data. In this paper ‘vital-ity’ is used synonymously with the verbal expressions‘spark of life’ and ‘fighting spirit’ that were used byinterviewees, and refers to how well the infants aremanaging and their perceived will to live.

Findings

The findings indicate that an assessment of an infant’svitality became important when hospital staff werein doubt about whether active treatment should becontinued or terminated. In situations marked by ambi-valence and uncertainty an assessment of an infant’svitality carried weight along side of more objectivesigns, weight and week of gestation. The assessmentof the infant’s vitality came, in a way, in addition to theobjective and ‘certain’ criteria. Vitality was mentionedby nurses, doctors and parents. Nurses seemed todescribe the phenomenon in a richer language than

ETHICAL DECISION MAKING IN NEONATAL UNITS 195

doctors, possibly because they usually worked closerto the infants and had continuity in their contact andobservations, whereas doctors were called when thespark of life was fading. The health professionals saidthat the ability to sense whether an infant showedvitality came with experience. Recently trained nursesdid not refer to it in the same way as those withlong experience. The ability had to do with havinga ‘clinical eye’ or professional understanding – intui-tion. Vitality was ‘something’ that they just saw, thatwas difficult to put into words. This ‘something’ madethem believe that the infants could survive, made themwant to really give them a fighting chance. This couldbe either a small, indefinable something – that theinfants showed ‘something’ within themselves – or akind of overall impression.

They had understood that the baby was going to besmall, but they had no idea how tiny he was, couldnot say in advance, 350 g. Then the nurse who firsttook him in her hands after he came out said that shefelt that he moved his arms, his feet, his body, andcried out, and showed a lot of strength, the momenthe was born. She said that she believed he couldmake it because he showed such vitality (interviewno. 36).

The infants that lacked vitality lay flat out, showed noreaction or resistance. They seemed floppy and hypo-tonic, appeared to accept anything as though they hadgiven up. They were experienced as tired and distant,as though they would rather not live. These infants didnot put up any resistance. Two parents described theirpremature twins, where one showed vitality, and theother did not:

She struggled and resisted when she was suctioned,and if we touched her or she was uncomfortable shealso struggled, whereas he just laid there and did notreact to the suctioning, sort of ‘do what you like withme’. There was more of a spark in her, they meantthat she had more spark and seemed stronger. Shehad more go (interview no. 38).

The phenomenon was experienced through differentsenses. Most informants told about what they saw, butalso about what they heard and felt. Some informantsdescribed vitality as a feeling of resistance when theytouched an infant, or a particular ability to struggleagainst the respirator or C-pap. Others explainedvitality in traditional medical terms such as clinicalfitness, arousal, facial expression, movement, muscletone, colouring, and ability to recover quickly fromsuctioning or unpleasant clinical procedures. One ofthe physicians described it as a criterion for furthertreatment:

For the tiniest infants it is almost as though this isthe kind of criteria we use to decide whether wewill make every effort, or whether the chances areso poor that it is perhaps best to leave well alone(interview no. 22).

The informants also described vitality in human termsthat illustrated the infant’s temperament or personality.These covered their ability to react to both negativeand positive conditions, their individuality or personalcharacteristics, their ability to ‘decide’ their own fate.It was seen as positive when an infant reacted tosomething negative. It was a resource to be able toshow strength and quickness, to be able to protest andstruggle in resistance, to be active and decisive. Thestaff appreciated children that were demanding andcried out, showed what they wanted, who were gutsy,who were fit and angry. Infants with a spark of lifewere not fragile, they tolerated touch and they did notaccept everything done to them. Infants with a spark oflife also reacted to positive stimulation, had the abilityto find comfort and relaxed after feeding.

You can almost feel what it’s like in the incubator,lying on the lambskin, that it’s how I would wantto have laid and . . . Well, it looks very comfortable(interview no. 18).

Vitality was also understood as an activity, or a char-acteristic and surplus energy, something extra, an extrastrength. It was the unique things about the infants,their way of being, their particularly likes and whatmade them different from all the others.

Yes, there is something or another you experiencewhen you tend to the infants and get to know them. . . that tells you that they are someone special.Searching for the special characteristics, ways ofbeing, particularly likes, that I can teach the othersto look out for . . . (interview no. 21).

Additionally, vitality was described as an ability tocome out of hopeless situations, to hold out. It wasa sign that ‘I will live. You must help me.’ The infantsshowed something very important, a signal that theywould not give up, that they were little Vikings. Theinfants decided themselves how things would turn out;they showed the way. The nurses, doctors and theparents expressed that, when it came down to it, it wasmostly all up to the infant themselves.

We were feeling pretty low, but in the middle of itwe saw that he opened his eyes for the first time.That was a very moving experience, him suddenlylying there with these two big dark orbs (interviewno. 42).The whole time we said that it is he who decides.


We will just have to see how it goes. And he turnedso many corners and improved so many times that itis hard to believe. Just when things seemed hope-less, whoosh, he was fine again. There was noanswer in advance. And we thought, “Give up now,little friend, give up. Perhaps you are going to die,anyway”. But he did not after all (interview no. 34).

To summarise, the infant’s vitality can be said to bea phenomenon that was mentioned by doctors, nursesand parents, and that a professional evaluation of aninfant’s vitality appeared to be included in a clinicalor professional understanding or intuition. The abilityto evaluate in this way was developed through profes-sional experience. An evaluation of an infant’s vital-ity appeared to encompass objective and subjectiveelements. The phenomenon appeared to be interwovenin the medical signs and symptoms that are used inprognostic and clinical evaluation of infants. Vitalitywas also described as temperament, personality, or theability to react to pleasant or unpleasant stimulation. Itwas described as a special ability or characteristic, orthe will to come out of a hopeless situation.

Discussion

Vitality as an ethical appeal

Decisions about terminating or continuing medicalcare in new-born infants are undoubtedly ethicaldecisions, decisions that have huge impact uponhuman wellbeing (both the child’s and the parents’).The results in this study indicate that observed vitalityis given significance when deciding about the utilityor the futility of various forms of medical treatmentsin caring for neonates. The question is, however, inwhat respect do observed signs of vitality have anyreference to value? If signs of the child’s vitality are tohave any impact upon decisions with potentially graveconsequences for human wellbeing, the moral contentand value of vitality has to be specified.

There seems to be several ways of accomplishingthis clarification. One way is to investigate the moralcontent of vitality, i.e. its property as a moral intuition,and then to specifically determine the action-guiding,normative importance of these perceptions.

We will first address the meta-ethical issues thatmight lie concealed here. Secondly, we will attemptto discuss how judgements in actual cases mightbear upon these meta-ethical issues. Finally, we willaddress both the problems and the strengths raised bya position that gives significance to signs of vitality asa basis for ethical decision making.

Vitality and vulnerability – which has primacy?

This section will, by contrasting vitality and vulnerab-ility, clarify the appeal to value associated with theseclinical manifestations. However, we will argue thatvitality has a distinct significance as a prognostic cue,a property that vulnerability lacks. First, however, itis important to explore the foundation of value that issalient here. When clinicians observe a child’s vital-ity or his vulnerability, they intuitively take it to be adistinct and objective feature of the child’s condition.Furthermore, they take this observation to be morallysignificant.

Levinas, when discussing the role of intuition inHusserlian phenomenology, argues that values belongto “the sphere of objectivity”:

The qualities that make things important to us ordear to us, that make us fear them or want them,etc., are intrinsic characteristics which must not beexcluded from the constitution of the world andmust not be attributed solely to the “subjective reac-tion” of men that are in the world. Since thesecharacteristics are given in our life as correlates ofintentions, they must be considered as belonging tothe sphere of objectivity (Levinas, 1973, p. 44).

On the face of it, it seems correct to say that humanmorality is so constituted that signs of vitality as wellas signs of pain and vulnerability embody a certainmoral quality, a certain appeal to value, in the moreobjective connotation offered by Levinas here. Ofcourse, the Levinasian way of illuminating the Otheras vulnerability, and hence ethics, is one way of theor-ising about the sources of moral value. Another, quitesimilar way of posing a meta-ethical requirement forjudgements about values is the following:

The newborn, whose mere breathing incontradict-ably addresses an ought to the world around,namely, to take care of him. And continued: It onlyremains to explicate what is seen here: which traits,besides the unquestionable immediacy itself, distin-guish this evidence from all other manifestations ofan ought in reality and make it not only empiricallythe first and most intuitive, but also in content themost perfect paradigm, literally the prototype, of anobject of responsibility (Jonas, 1984, p. 131).

In a very similar manner as we see explicated byHans Jonas and Emmanuel Levinas, some versions ofmoral realism hold that moral value can be perceivedby intuition (McNaugthon, 1988). According to thisview it would appear obvious that reporting signs of


vitality is morally significant, because signs of vitalityintuitively have reference to the ultimate wellbeing ofthe child.

For the sake of clinical decision making, however,we have to formulate the question more provocatively:Why is vitality a moral sign? Why is perceiving thebodily movements of the little child, the way he isbreathing or struggling associated with moral value?Is it the fact that perceptions of these various signs areintuited as representations of a certain spirit or sparkof life, an elan vital etc?

The findings show that various manifestationsof premature infants’ behaviour are interpreted bydoctors and nurses as expressions of a certain sparkof life, as an ultimate will to survive. In the clini-cal encounter it appears that the child’s vitalityappeals to clinical decisions of continued treatments.Undoubtedly, the intuitive normative appeal of vital-ity is associated with how certain clinical expressionsare understood as “sparks of life” and how these signsbecome reasons for further medical treatment.

In this way, signs of vitality might claim prognosticvalue, because they seem to supply the clinician withsome information about a probable fitness or willing-ness of the child to survive. At least, given a premiseof taking the value of life as a supreme moral value,vitality may tell something about a child’s chances ofsurvival. A position of moral realism then, evident inthe metaphysical views of Levinas and Jonas seemsrelevant, because signs of vitality appear to release anethical appeal of protecting and improving the child’swellbeing.

But then, so does vulnerability. In fact, vulnerabil-ity tells about the life of the little child being indeedprecarious, being exposed to nature’s brutality, to painand suffering. Vulnerability speaks about human inter-dependency and the nature of human experiences inways that intuitively appeal to benevolence and mercy.Even more, do not signs of vitality ultimately appealto how the little child is vulnerable to us and toour decisions? Hence, is it not more correct to saythat vulnerability is the important issue here and notvitality?

We will claim, however, that an important featureassociated with vitality in contrast to vulnerabilityin neonatal care is the fact that vulnerability as aprognostic indication of survival is not distinct inthe way that vitality is. Perhaps the most interestingwith vitality as a prognostic cue is not its appeal toprotection, but its indication of the child’s spirit ofsurvival and its appeal to further treatment. Vitality is,essentially, a prognostic sign, telling something aboutpositive expectations of fitness and survival. Vitalitydoes not ultimately appeal to protection and pallia-

tion as vulnerability does, but rather to the continua-tion of careful interventions for the sake of a child’ssurvival. All the findings in this study indicate thatdoctors and nurses, as well as parents, associate thissign with hope, with strength and a certain spirit ofcoping.

Now, it could be argued that it is wrong to treat onlythose who apparently want to live, i.e. that show signsof vitality. But one must remember that vitality is onlyone among a variety of prognostic parameters that haveto be taken into account. It is fair to say that vitalitycomes in addition to all the other valuable parametersa doctor has when making a proper clinical decision.It is in cases where all other indicators are insufficient,when insecurity still is high, that signs of vitality canbe of any help. Surely, it would be wrong not to giveit a certain emphasis in the overall assessment of thechild’s chances of survival.

There might also be an issue of relationship beingsalient here. From a relational perspective, the appealof vitality may enforce the contact between the childand his helpers. On the other hand, the fact that acertain relational contact is enforced can never bea decisive argument for treating or not treating thechild. If vitality shall be a normative criterion in thesecontexts, it has to be a criterion that specifies the condi-tion of the child, regardless of any quality of specificrelational bonds.

Again, the most pressing issue from an ethical pointof view seems to be the question of its reliability as atool for prognostic measurements, being a part of itsappeal to moral value. In fact, the moral character ofvitality seems derivative, bearing on its reliability as atool for measuring and predicting life expectancy.

An additional remark seems necessary. It is ofcourse possible that although clinicians report vital-ity to have prognostic value, and although we findthis very obvious, it may have less prognostic valuethan we assume. More prospective studies are neededin the future to verify its significance as a prognostictool. Still, and in this respect, it might be a moderateaim that our discussion might contribute to a broaderunderstanding of what role ethical intuitions mightplay in prognostic evaluations.

The role of ethical intuitions in clinical decisionmaking

Given these reflections, the important question is howreliable is vitality as a prognostic indication? To whatextent can perceptions that take certain aspects of thechild’s behaviour to be interpreted as vitality be abasis for decisions about continuing or discontinu-ing medical treatment? It seems obvious that vitality


cannot be the only sign or the sole criterion that formsthe basis for these decisions. The question is, can itbe a sound criterion at all, and can it help in copingwith some of the ambivalence reported by clinicians(Brinchmann, 1998a, 1999a,b, 2000)?

In current practice and experience vitality as asign proves to be a very important feature that hasto be taken into account when deciding about thechild’s future. It is reported by clinicians that vital-ity is taken into consideration when questions aboutfurther treatment is a pressing issue. One problem,however, consists in the subjective way signs of vital-ity are intuited. These signs are described in a varietyof manners and interpreted rather loosely in terms ofthe intuitive appearance of the child, his bodily move-ments and tensions etc. It is clearly associated withthe caretaker’s and the parents’ subjective feelings.Consequently, vitality might be difficult to articulateand specify in terms that tie up to objective measure-ment and intersubjective comparability. How can itthen be reliable?

Problems of reliability and capriciousness (insecurity)

One problem is the subjective character of the experi-ence itself. Some nurses and doctors might see signsof vitality where others do not. Some might be sensi-tive to particularities of the child’s condition whereasothers are not. How can one claim that a certainsubjective impression (of the child responding andfighting) tells anything about his vitality, and evenmore, that this sign has prognostic significance?

One answer to this question is strictly empirical.To operate under the significance of these clinicalsigns, and intuitively be able to evaluate and assessthe wellbeing of the little child, is partly what clini-cal expertise is about. In this way, being able toevaluate prognostic cues is a significant part of every-day clinical experience. To take account of vitality,might be a measurement that is subjective and vari-able, but it is an important tool for clinical infor-mation gathering when caring for our smallest ones.The important issue is therefore not to disqualifyvitality as a prognostic criterion, but rather how tomake signs of vitality more qualified as reliable toolsfor prognostic and clinical evaluation. The answerto problems of reliability should therefore consist informulating and specifying some possibilities for qual-ifying these intuitions as a basis for clinical decisionmaking.

A second and related answer connects to the factthat the impressions of vitality subjectively generatedin the clinicians relate to clinical facts that are objec-tively existing and verifiable. It is not totally random

which signs are measuring up to the child’s vital-ity. Surely some bodily movements might signalisesevere brain damage, spasm etc, while others repre-sent functional and healthy behaviour. Similarly, whenreporting that the child looks well, it is fair to assumethat this wellness bears on certain features that areobservable in the child’s expression and which adjoinsa certain unanimity in the clinical community.

Vitality as a basis for judgements – some solutions

Given that a sign is closely related to the clinician’ssensitivity, it also follows that it is crucial that theintuition of vitality can be properly articulated. Oneway of accomplishing this articulation is to give a moreor less accurate description of what is seen as evidentin the child’s clinical condition. Here, the empiricalresults in the study show a variety of clinical character-istics that are relevant for an interpretation of vitality.Clinicians could see how the child moved, how hestruggled, that he had a certain temperament etc. Itis important that clinicians from various professionscontinuously discuss particular cases for the sake ofevaluating and comparing their interpretations of clini-cal signs. Further, it might be a task to work out certaincriteria that further specify signs of vitality and allowfor a certain comparison of cases and between cases.Thirdly, involvement of parents is also important forthe sake of gathering valuable information about signi-ficant signs. Being aware of a tendency that parentsnaturally might be too optimistic, they are still the onesto know to have the proper knowledge of their ownchild.

All these considerations are tailored to counterthe subjectivism and partiality that might be involvedin clinical decision making based upon vitality as aprognostic sign. To allow for a certain comparisonbetween relevant cases, the important feelings andintuitions that clinicians experience have to be prop-erly articulated. Given this possibility, the credit ofvitality as one among a variety of prognostic andtherapeutical considerations can be authorised.

Finally, it is essential to say that optimal certi-tude when deciding in these cases can never be fullyobtained. Ethical decisions are frequently ambiguousand ambivalence is a central feature when assessingthe prognosis for these children (Brinchmann, 1998a,1999a). Methodologically, ethical decisions are oftenindeterminate. When conflicts arise there is no clearpriority; rather it is a question of case to case balan-cing. This is also what is experienced in care for thesenew-borns. The matter is, therefore, rather to maxi-mise the reliability or minimise the unreliability ofthese judgements, while at the same taking seriously


all the important resources that is embedded in theclinicians’ reflections.

Acknowledgements

The authors acknowledge Steven Balmbra for his helpwith the English language.

Note

1. An earlier version of the paper was presented at SecondWorld Congress of Philosophy of Medicine, HumaneHealthcare – Science, Technologies, Values –, Cracow,Poland, 23-26 August 2000.

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Documents

Ethical decision making in neonatal units — The normative significance of vitality