Portrait of the Patient as a Young Man: An Explorationof the Use of Photographs in Hospital

Peter Lewis

Received: 21 December 2005 /Revised: 9 August 2006 /Accepted: 29 August 2006 / Published online: 6 March 2007# Springer Science + Business Media B.V. 2007

Abstract The display of personal photographs inhospital is a common practice that has yet to berigorously examined. The photographs displayed aresubject to interpretation by the viewer and may leadto misunderstandings or miscommunication if clarifi-cation of meaning is not sought. This paper explores arange of possible meanings that the display ofphotographs in hospital may hold, based on a casestudy of a 15 year old boy hospitalised with a lifethreatening illness. Further research is needed into theactual meanings attributed to the display of photo-graphs in hospital by patients and family members.

Keywords Photography . Child . Life support care .

Environment design . Case report

A young boy lies in the intensive care unit of amajor teaching hospital – a young boy whoselife has changed in every possible way. His roomis chaotic, with more medical equipment presentthan the room might have been designed tocontain. Along one wall are the trappings of

adolescence: autographed pictures of unknowncelebrities, posters of racing cars and a calendardepicting semi clad young women from a “lads”magazine. A bookshelf overflows with video tapedaction films, and the afternoon sun lays tigerstripes across the wall through the Venetian blinds.An explosive movie barely conceals the twenty fourhour background “music” of his life: the hiss of aventilator and the whir of a pneumatic bed. Thewall opposite the posters is bare except for aphotographic portrait of a dark haired, confidentboy, smiling at the prospect of a bright future.Below the portrait, in the bed, the same boy lieswasted, contorted and permanently grimacing.

Introduction

The practice of placing photographic portraits aroundbeds occupied by unconscious and incapacitatedchildren is widespread. They are generally placed thereby the parents of such children, often at the behest ofnursing, allied health or medical staff. Whilst thepresence of photographs in such settings has becomepart of the “created environment” of intensive careunits, high dependency units and neurology wards, theissues they raise are rarely examined.

This article explores the relationships betweenclinicians and patients and their families with regard

Bioethical Inquiry (2007) 4:51–55DOI 10.1007/s11673-007-9037-6

P. Lewis (*)Nursing Research and Practice Development Unit,The Children’s Hospital at Westmead,Research Building Locked Bag 4001,Westmead, NSW 2145, Australiae-mail: peterl@chw.edu.au

to the presence of such portraits, and the moral terrainsurrounding these images. The concern here is not theuse of art as a means for healing, nor the philosoph-ical, political or clinical issues surrounding thedisplay of art in hospitals. Rather, it is the meaningand interpretation of photographs displayed by thosewith serious illness. At issue are the questions raisedby the display of photographs in this setting, many ofwhich are of moral import. How do such photoscontribute to the view that clinicians have of suchpatients? What is intended by the display of suchportraits? Does the viewer of the portrait receive theintended message? Would the patient have selectedthe same portrait for display? Does the portrait portraythe patient as a relative sees him, as a relative wouldlike to see him, or as a relative would like others tosee him? Is the portrait a reminder of or a memorial tothe person who has been lost? Or is it a symbol ofhope: a marker of a point on the illness trajectory, oreven a point around which the family and clinicianscan communicate towards a shared meaning of thepatient’s illness? Or do such photographs haveanother, darker meaning? Are they talismen to protectthe vulnerable loved one from harm? Are they areminder to healthcare professionals that they arecaring for people and not disorders. Are they asymbol of the family’s need for vigilance over thepatient? The purpose of this paper is not to providedefinitive answers to any of these questions, but toarticulate the ambiguous nature of such photographs.

At the age of fifteen, Ben suffered a brain injury athis home in rural New South Wales. Oneafternoon, after school, his mother found himunconscious on the floor of the bathroom andrang for the ambulance located in a neighbouringtown. Some time later, Ben was collected by theambulance, taken to the nearest Base Hospital,and then transferred to a large paediatric hospital.He was admitted to the Paediatric Intensive CareUnit (PICU) where he was paralysed, sedated andventilated. Later that day he was reviewed by theneurologists and intensivists who advised that hehad sustained a major brain injury, that he wouldbe unlikely to recover consciousness and that hemay remain in a “vegetative state”. They advisedthat treatment be withdrawn and that Ben be“allowed to die”. Ben’s mother felt that she couldnot make a decision to end Ben’s life, however,

and she maintained a constant daytime vigil at hisbedside, watching for signs of improvement. Ather insistence, Ben underwent regular neurolog-ical reassessment. To the surprise of the medicaland nursing staff, in the following weeks Ben didimprove and regained consciousness. His motherexpressed great relief at having chosen to contin-ue treatment despite contrary expert advice.

Six months later, Ben remains dependent onother people for his care. He cannot moveindependently and the only reliable muscularcontrol available to Ben is from his ocular andoptic nerves, so he can move his eyes and blink.He cannot move his limbs or head, sit or standindependently, grasp with his fingers or move hisfeet. He can see but he cannot speak. He canhear but it is unclear whether his hearing isnormal. At times he appears to be aware of thosearound him and frequently responds to theirquestions by blinking. It is unclear, however, howmuch he understands and whether he thinksnormally. At the very least it is safe to say that heis far less physically able than mentally able.

Until recently, patients like Ben would not havesurvived their initial injury. But increasingly sophis-ticated emergency and supportive care mean thatmany such patients do survive and become chroni-cally ill. Ben is now in a state that neither he nor hismother could have foreseen or planned for. Bothwould likely have hoped for a future that is no longerattainable. With regard to the photograph, therefore,one question concerns the extent to which the hopesand expectations of the subject of the photograph canbe assimilated into the future reality of the patient.

Ben’s daily routine is overseen by a portrait ofhimself taken at school and selected for display byhis mother. Ben himself, however, can not see theportrait as it is displayed above and behind him ontop of a permanent light fixture at the eye level of atall adult. The portrait depicts a young man in alight coloured school shirt, the crest on the pocketsneaking in from the lower right hand corner of thephoto. His dark hair is parted to his left and hisarms are held straight by his sides. His eyes aredark and bright, his nose straight and his mouthturned up at the corners in a close lipped smile. Heis looking directly into the camera − not defiantly

52 Bioethical Inquiry (2007) 4:51–55

or aggressively, but confidently. Below the photo-graph, Ben lies in his bed, unmoving, thin andwasting away. The fix of his gaze is the only thingthat reflects the boy within. He does not look muchlike the boy in the photo.

Photographs as Objects of Reassurance

In some situations it may be deduced that the photo ondisplay is not intended for view by the patient as, inBen’s case, the photo is positioned so that he cannot seeit. It must therefore be intended to be viewed by others:by Ben’s mother perhaps, or by other family members.But it may also be displayed for view by those peopleinvolved in Ben’s daily care, such as nurses, doctors,occupational therapists and physiotherapists, healthprofessionals who are responsible for his care, but whoare generally unfamiliar to Ben and his family and who,but for Ben’s injury, would not be part of their lives.

People admitted to hospital often feel overwhelmedby their surroundings, by the “chaos” of the hospital andby the range and sophistication of the proceduresundertaken in the course of clinical care. This fear ofthe unfamiliarity of hospital is widely acknowledged bythose involved in paediatric care, and a number ofmeasures including sympathetic architectural designand the use of familiar or personal objects arespecifically designed to address the impact of thisanxiety [1]. Familiar surroundings have been found toincrease a child’s adjustment to separation from family,in part because children associate the presence ofvalued objects, such as an article of clothing, with theintention of the parents to return, should they be absent[1]. Other mementos of home, such as photographs,may also reduce anxiety and may be particularlyappreciated by older children [1]. But photographsmay also be a comfort to parents or clinicians whomight be fearful for the patient’s future. The meaningof the photo may be connected to the person whodisplays it rather than the person depicted in it.

Semiotics and the Interpretation of Photographsin Hospital

What is it about the photographs themselves thatmake them useful as objects of reassurance? One

useful way of evaluating a photograph is through asemiotic lens. Semiotics provides ways of under-standing an object, and the subjective importanceattached to it, by critically appraising its more‘objective’ features including the manner of itscreation and display [2]. In this photograph, Ben islooking directly at the viewer, which is an attitude thatusually leads the viewer to feel a strong engagementwith the subject [2]. The social distance or intimacyportrayed in the photo of Ben is one of close personaldistance, that is, head and shoulders. The perspectivein the photo is frontal, which creates strongerinvolvement for the viewer. The viewer is lookinghorizontally at Ben and has equal power with him. Ifthe intention of the person displaying the photographis to elicit support for the patient as a human being ofvalue, then this image serves such a purpose well. Thesubject is one with whom the viewer feels equal. Heis personal without being intimate, and he is engagingthe viewer. Most importantly perhaps, the horizontalperspective gives the impression that Ben is “one ofus” rather than “one of them” [2: 60]. If the subject is“one of us,” this means that we should treat him withthe same consideration as we would treat ourselves.The challenge is to translate this interpretation of thephotograph into treatment of the patient.

The photo may not be placed as a motivation forthe patient, encouraging him to return to “normal” orproviding a goal for which he might strive. Thelocation of the display of the photo is clearlydetermined with other people in mind. While thereare similarities between the subject of the photo andthe patient, the subject is not the patient. A semioticanalysis goes some way towards generating a theoryabout why a particular photo might have beenselected for display, but it tells us little about whyphotographs might be displayed in general.

Ben survived the acute phase of his illness butsuffered permanent neurological incapacity. Healso continued to experience serious threats tohis health, such as chest infections, and atvarying times questions arose regarding whetherhe should be treated at all. On several occasions,health professionals caring for Ben asked hismother whether she wished for Ben to be treated,and they questioned whether he would survive inthe long term. Given her previous experiencewith medical professionals and her commitment

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to Ben, his mother unsurprisingly came to feelthat Ben’s survival was threatened not only byacute infection, but by the attitudes of theprofessionals to whose care Ben was entrusted.

Vulnerability, Threat and the Use of Photographsas Talismen

Parents may be particularly sensitive to the vulnera-bility of their children, especially in an environmentor situation where their control is limited. This mightresult in a need for vigilance, a need to be present attheir child’s bedside to protect them and to watch overthem [3]. Constant vigil places a great strain onfamilies, however, because it can mean the prolongedphysical and emotional absence from home of oneparent. This may result in a deterioration of familyrelations and family disintegration. Parents may findthemselves choosing between spending time at hos-pital and home, and they might resent the need tomake this choice. Proxy or substitute carers, such ashospital volunteers or “Ward Grannies” may providealternative ways of meeting the perceived need forconstant vigil by watching over children when theirloved ones cannot be in attendance.

If a parent cannot fulfil the need to protect the childby being physically present, he or she may find otherways to protect the child. The photograph, in thiscase, might be used as a type of talisman. A talismanis an “ ... object meant to either protect the bearer orendow him with precise powers” [4: 23]. How couldthe photograph protect the patient? For the mother thephotograph may represent the protection she wishesto provide but can not. She may also feel unable toarticulate her mistrust of clinicians because she mightbe concerned that they will find her fears unaccept-able, threatening or insulting, and either withdrawcare from her son or withdraw from a relationshipwith her. Or she might consider her own fearsirrational and prefer not to express them overtly,cloaking them instead in ambiguity in order not onlyto protect her child but to protect herself. In this waythe real intention of the photograph may be to remindclinicians of the need to see hope, potential, resil-ience, fragility and even beauty when they care forher son. One conclusion about the selection of thephotograph, then, might be that it was selected toafford maximum protection for the patient and to

function as the parent’s representative when one orthe other can not be present.

Ben’s mother may ultimately wish that the photo-graph encourages Ben’s carers to value his life, tovalue him and not to make normative judgementsabout his illness or the obligations owed to him. For itis possible that some clinicians might make judge-ments about the value of Ben’s life that are contrary tothose judgements made by his mother or himself.They might treat him in a less caring way than theywould treat patients whose illnesses are less incapac-itating and more temporary and who are likely to leadproductive lives independent of medical care. Underthese circumstances, the photograph might serve toremind people that Ben’s situation was unforeseenand that he should not be punished for being in thesituation in which he finds himself. The messageattributable to the photograph might be that, whileBen’s future included the capacity to contribute, he isno longer able to do that. It might mean that Ben isactually a “good” person trapped inside a “bad” bodythrough no fault of his own. In other words, Benshould be cared for as though he were the person inthe photograph − a valuable person with capacities,dreams and hopes. Likewise, the display of the photomight be intended to inspire hope and to convince theviewer that Ben’s mother or family are not misguidedbecause they have hope.

As Ben’s condition stabilised his very existencewas no longer threatened on a daily basis. Hebecame someone with permanent incapacity,someone who would need care and accommo-dation in the community. As a consequence,occupational therapists, physiotherapists andclinical nurse consultants became more involvedin his care and he was transferred from thepaediatric intensive care unit to a generalhospital ward, a move that was particularlydestabilising for both Ben and his mother.

Although Ben is now being “returned” to hisfamily and community, his life has divergedalong an unforseen path. He can no longerparticipate in the physical activities he onceenjoyed; he can no longer experience life in theway he was used to, and he cannot even conductintimate relationships in the way that he hadwith his family or friends. His future is verydifferent to that of the boy in the photograph.

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Hopes, Horizons and the Potential Dysfunctionof Photographic Images

Gadamer has written of a person’s perception of his orher future as a “situational horizon” where the horizonrepresents the limit of a person’s view from any givensituation and where beyond the horizon lies theindividual’s unknown future [5: 301]. An individual,therefore, makes plans for the future on the basis ofwhat he or she can see between the present and thehorizon, but she or he cannot, without speculation,make any plans for the future beyond the situationalhorizon. Ben’s situational horizon needs adjustmentbecause of the permanent alteration it has sustainedthrough his illness. This alteration has opened a newhorizon. Ben’s horizons will continue to shift as hislocation shifts along the illness trajectory. The photoabove his bed represents Ben as he was before thedramatic alteration in his situation.

Ben will never attain the level of function depictedin the photo created prior to the onset of his illness.For someone who breaks a leg, for example, thetemporary nature of the illness may not lead to a shiftin situational horizons in the long term. For such apatient, a photo taken prior to the injury is likely tolook very similar to a photo taken after the leg hashealed. In Ben’s case, the photos will be differentbefore and after because the illness has introducedBen to a new state of being, one characterised bydifferent and more limited horizons.

The hopes held by Ben’s mother for Ben may alsoneed revision in light of his illness. The evolution ofhope in light of current reality may be complicated.Initially Ben’s mother might have hoped Ben wouldsurvive his illness intact. When survival became arealistic hope, as it had not been during the initialstages of Ben’s illness, his mother’s hopes for thefuture might have turned to recovery of full function-ality, or a recovery of the function of speech orrespiration. As Ben progressed along the illnesstrajectory, his mother’s hopes might have expandedor contracted depending on how Ben’s conditionevolved. She may have attributed exaggerated mean-ing to small improvements in function, or dismissedthe relevance of deteriorations in function. She mayalso have adjusted her hopes for herself, her relation-ships and the lives and futures of her other children inlight of Ben’s illness.

Clarifying Meaning and Reconciling Hopes

Given the complex meanings that surround images ofpatients, it is highly desirable that health professionalsnegotiate the meaning of the photograph with theparent and use the photo as a nexus around whichdiscussion of the patient’s prognosis might pivot. If, forexample, the photograph is displayed in order toinfluence the clinician’s treatment of the patient, thenthe discussion should explore what fears the parentsmay have and what concerns they have regarding theirchild’s future or the treatment they are receiving.Alternatively, if the photograph is meant to representthe parent’s hopes for the child’s future, then thesehopes should be clarified and information sensitivelyprovided where these hopes are unrealistic or placeunreasonable burdens of expectation on the child. Thiscase provides some insights into the meanings thatsurround images of patients but leaves many questionsunanswered. It has, however, provided the basis for amore wide-ranging qualitative study that is now beingundertaken to describe the meanings young peopleattach to the photographs around their bedside.

Ben has survived his injury and numerous subse-quent threats to his life from illness. Although stillon hospital premises, awaiting the renovation ofhis home, Ben is cared for by a team of nursingstaff especially recruited to care for him at home.He has been supplied all equipment and humanresources necessary for a successful discharge intothe community, and with this transition has come abroadening of horizons. On his wall are postersand photographs, an increasing number of whichportray Ben as he is now and is likely to remain.

References

1. Hockenberry, M. J., Wong, D. L., & Whaley, L. F. (Eds.)(2005). Wong’s essentials of pediatric nursing. 7th ed. St.Louis: Mosby.

2. Harrison, C. (2003). Visual social semiotics: understandinghow still images make meaning (Applied Theory). TechnicalCommunication, 50, 46–63.

3. Dudley, S. K., & Carr, J. M. (2004). Vigilance: Theexperience of parents staying at the bedside of hospitalisedchildren. Journal of Pediatric Nursing, 19, 267–275.

4. Dureau, Y. (2002). The talisman or the word as an object andan image signifier. Semiotica, 139, 23–62.

5. Gadamer, H-G. (1989). Truth and Method. London: Continuum.

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