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Ethnomethodology at Work

Writing Samples 2: The Illness Trajectory
Home | An Ethnomethodologist and S-K Health Care Research | Curriculum Vitae | Writing Samples 1: Ethnomethodological Work | Writing Samples 2: The Illness Trajectory | Writing Samples 3: A Simmel Paper | Russell Kelly

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The Illness Trajectory: understanding Being ill as a sociological phenomenon

 

Russell Kelly

 

Synopsis

 

Anselm Strausss academic work flowered in his collaboration with Barney Glaser and their studies of dying. Out of those studies emerged the concept of dying trajectory, later, to become illness trajectory. This paper will argue that Strauss has offered the Sociology of Illness a crucial and central concept. The life-contingency that Parsons argued no individual could avoid, became susceptible to more detailed analysis. A concept is offered which is readily amenable and adaptable to account for any illness situation, past or current, institutional, organisational or domestic, chronic or acute. Light can be shed on any practical or practitioner issue. The Sociology of Illness and Patient Care is indebted to Strauss for freeing its endeavours from the vice-like grip of Parsons sick role and opening a field of study which, because of its universal impact, has a primary claim as generic. The concepts development spans nearly half a century and promises to underwrite work on the interaction between professional and patients in health care for at least as long into the next century.  

 

Introduction

 

 

From Faberman:

 

    ... Herbert Blumer, the scholar laureate of symbolic interactionism, had left Chicago to chair and build a department at Berkeley, but he deliberately sought to build a balanced department, a task in which he was quite successful. And while it also was true that Anselm Strauss was doing creative things at the University of California Medical Center (in San Francisco), his doctoral program in sociology was embedded in the School of Nursing.[i]

 

The Core concept : the Illness Trajectory [ii] 

 

The concept of  Illness Trajectory was  born out of Glaser and  Strauss's Dying  Trajectory[iii] The trajectory  refers  to   that  social  form  achieved  by  those interactants  in a  series  of on-going, interlocking  events  categorised in 'Are you a  patient?'  or 'Are you a nurse?'.  What the patient experiences  or  remembers of their hospital  stay  or  of  their period  of illness is their interpretation  of  that series of   situations or that sequence   of  events.   The  nurse,   the  doctor,  or  any interactant involved in the series or sequence at  any point adds  to,  contributes  to,  creates  some  element  of  the trajectory by talking themselves into it at their point or points of entry.  While each will carry on or carry  away from each situation  in  the  series  their  own  construction of the experience[iv]  -  their interpretation or  their memory  - a social form[v] results which  is the amalgam  of those memories and  interpretations.   This  social  form   -  the  illness trajectory -  is offered   here as a method[vi] for interpreting the everyday, taken-for-granted activities that make up health care in its totality. It is total in that it does  not isolate the doctor, the nurse, the technician, the cleaner, the patient  or the patients family and friends, nor any other potential interactant,  but presents all, who appear and make their impact, as essentials  to the situation.

 

The Origins of the Concept

 To Strauss, Fagerhaugh, Suczek and Wiener:-

We  have coined the  term "trajectory" to refer not only to the physiological unfolding of a patient's disease but to the total organization of  work  done  over  that course of  illness plus the impact on those  involved with that  work and its organization.  ...we shall  occasionally  refer to "trajectory  work",  simply  meaning  the  various kinds of work done in  managing the  course of the illness  and  in  handling  the interrelationships involved in that task.[vii]

Trajectory replaces the singular notion  of process[viii] with a more complex,  multi-faceted flow of events and situations. The first proposal in this paper is to present the trajectory in Simmels terms as a form realised in the interaction between the persons involved.  Each facet, as in view-through, of the trajectory can be represented as  one helix -  that is a  flow of events, rising, falling, twisting and swirling, which can be mapped.

 

Two purposes  are served by such a representation.

 

1.    The first is  graphical  in    that  a  diagrammatic  map  of  several co-flowing  helices  should  permit  the  identification  of points of contact, or junctures, where the helices interlock to  indicate  critical  phases.  For example, the changes in patterns of  work  around  a  dying  patient  interlock with changes  in  staff's  sentimental  expressions,  a juncture, which  indicates clearly  to the patient  something - perhaps that death is  now certain - and this concurrence may 'tell' the patient while medical and nursing staff  may spend days  or hours in determining whether and when the patient should be told that they are dying.[ix] 

2.    A second purpose is to represent 'being ill'  as a continuous  on-going  process of  members accomplishments which  may be  understood in various ways.

 

 

     Understanding the  process  by  sequences  of  time, by sequences  of   emotional   events   or   by   sequences  of physiological changes or by sequences of social interactions with  meaningful  individuals  are  all  possibilities.  But because each  selection is  only  one possibility, it  would consequently be  an  artificial representation super-imposed on  the trajectory to serve some  particular  purpose - like accounting  for medical staff and  nursing  staff  and their effective use of time  or researching the  progression of an illness or treatment program or nursing care strategy. These  are  artificial re-creations  of the trajectory in  the sense that they are creations to  serve some observer's particular  purpose.  Any one view  of the  trajectory - and there may be an infinite  variety of possible views - is one representation   which has to be recognised in  its own terms as that  one possible  view.  But because that one  view can be claimed,  does  not invalidate  any  other  possible  view nor render that particular selection as any more valid  than any other except  according to  the terms in  which it  has been recognised.

 

    The representation of the trajectory and its facets as a series  of  interlocking  helices  is  simply  a  device  of explication, or a form.  This representational device is not  a model.  The selection offered here of  important facets of the trajectory  is  neither intended to be  complete, nor intended  to  suggest any prioritisation,  nor  to imply any suggestion of  cause and effect.    Such possibilities might offer themselves when the trajectory-as-analytic  is applied to a particular  setting (an intensive care  unit),  to some particular  illness  (cancer),  to  some  form  of treatment (renal  dialysis),  to  some  nursing  care  strategy  (pain management)  or to  some  patient  problem  (getting  out of here).  This paper  proposes  a  discussion  of  the illness trajectory  as  a common  ground into which any  claimant to expertise (medical,  nursing, sociological, psychological or representative of patients'  interests) can offer a view for deliberation by  others  from  the same or from  a different 'expert'  field.  'Illness  trajectory'  is  offered  as  an analytic  device   which   may   have   the   potential  for  synthesising   the  disparate  perspectives  of   all  those involved in health care.

Facets of  an Illness Trajectory

 

   Why  facets?  Partly  because  the  term  has  not otherwise been adopted for common usage in health care. Secondly, because the term  reflects the notion of 'face' or 'view'. What is suggested is the same  usage as  in  facets  of  a diamond -  move the diamond and  the light reflected changes colour or sparkles in  a different way -  the viewer sees into the diamond in their own way. It is essentially a  reworking of the following idea from Anselm Strauss:-

Everyone presents  himself to  the others and  to himself,  and sees himself  in the mirrors of their judgements.  The  masks  he  then and thereafter  presents  to  the  world  and its citizens are fashioned upon his anticipations of   their  judgements.   The  others  present themselves too; they wear their own brands of mask and they  get appraised in  turn.  It is all a little like the experience of the small  boy first seeing himself (at rest and posing) in the multiple mirrors at the barber shop or in the tailor's triple mirrors.[x]

       Consistent with the  idea that any participant  in the trajectory can constitute that experience by having a view  of  it, 'facet' seems appropriate to reflect the idea of 'a face of the trajectory  that can be seen by the participant or onlooker'.  But to avoid any  sense of a fixed reality,  of  only  one  possible  view,   facet-as-face  can be presented also as an ever-changing face of the illness trajectory.

      

  Four  facets  of   the   illness   trajectory  immediately present themselves:  the physiological ,  the temporal ,  the sentimental  and  the social.  The physiological involves disease and disease processes. The temporal  reflects  the consequences  of time in  illness but more importantly in the schedules of  the day-to-day  activities of nursing  care. The sentimental facet recognises that while all interactions  of any depth involve feelings and emotions, the carer-patient interaction is of  particular  interest  because  of  the  intensity  of sentiment associated  with  confronting the possibility of  pain  and death. The social facet pays attention to the consequences for each individual of  their  illness  -  that  they  become  dependent  on  others. Illness, acknowledging Parsons insight[xi] that we cannot overcome  illness by an act of  individual  will,  invariably involves the participation of others in caring.   As each facet is examined in turn,  we are looking into the trajectory through  one facet at  a time.  What we are seeing is the same flow of experience through different "mirrors".[xii] Each facet is simply one way of seeing inside 'health care'.

The physiological order

 

The first, the physiological facet reflects interpretations of the patient's  physiological condition. That is not to suggest a description of the patient's physiological condition and  its progress through time  but  is  a  reading  of  expectations  based  on various interpretations of the physiology.  The medical staff, individually or together, have diagnosed an 'illness condition' [xiii], have established a prognosis,  albeit  with  varying  degrees  of  certainty,  and have accordingly   prescribed  treatment   and   medication.   As  Robinson suggests  that  set  of  interpretations  is  a   consequence  of  the prevalent  medical 'science'  and  medical  culture  characteristic of that  society,   of  policies  determined  by  health  authorities  at various  levels,   and  of  individually  or  collectively  determined medical strategies in that  hospital or community setting,  each being applicable on the   doctor reaching such a diagnosis. Correspondingly, but possibly separate from  the doctor's decisions,  the nursing staff have  their  own  taxonomy  of  'cues'   for  reading   the  patient's physiological  condition.[xiv] In their experience, and reading the qualities of the doctor or  medical team involved,  the nursing staff, individually  or  collectively,   may   reach   their   own  decisions appropriate to this patient's 'case'.  Based on previous experience of 'their'  illness,  or  other lay  advice  about  their  condition from friends,   family,   from  other  patients  on  the  ward    and  from       interpretations  of clues read from  doctors'  and nurses' actions and reactions,   the  patient  reaches  their  own  decision   as  to  the physiology.   These  three  sets  of  decisions  may   coincide  in  a situational diagnosis and prognosis-  "I have appendicitis.  I need an operation."  -  that is the negotiable interpretation of the patient's physiological condition which  constitutes   this facet of the illness trajectory. 

Experiencing the physiological order  involves physiological work. For  the  patient,  physiological  work  means  experiencing  pain and discomfort.  The  rises and falls of  recovery,  feeling feverish, the shivers,  night  sweating,  passing into sleep,   resting, all involve some  effort.  Each must  be experienced.  Having such experiences and understanding  them,  as such,  constitutes the physiological facet of the  trajectory.   To  the  nurse,  giving  medication  and  observing physiological  'cues',  relating those  cues  to  past  experience and assuming or anticipating the  next stage in the  physiological process similarly constitutes work.  Some procedures which might encourage the patient  to  experience  pain  or  discomfort,  removing  and applying dressing  to  wounds,   administering  injections  and  enema,  taking temperature and pulse,  each requiring physiological activity from the patient  and each giving rise  to interpretations  and expectations of the  patient's  current  or  future  physiological    experience,  all contribute  to  that  wave  of  physiological   experience  -  involve physiological  work.   The  doctor's  tests,  surgical  interventions, examinations,  prescriptions  similarly  impact  on  the physiological flow, involve work, and colour in significance and meaning through the physiological facet.

Equally, the three sets of decisions may conflict and produce two or three disparate diagnoses and prognoses which would form  different bases for a negotiated view of the physiology. The consequences of the recognised  formal  power relations  between  the  negotiating parties involved would probably mean that the medical view would  be prominent in dictating treatment and medication for this  patient.  But how that treatment  might be  implemented and  reported  on,  how  it  might be discussed  and reviewed  formally  and informally  among nursing staff would see the impact  of  any disagreement.  Similarly,  the patient's view would effect  the patient's  willingness  to  cooperate  with the diagnosis,  to  accept   treatment and to comply  in taking prescribed medication. It might even result in 'conspiracies'[xv] between two of the three participants against the third -  whether the  doctor or the patient -  to implement the treatment at a minimum  while implementing any agreed upon alternative (say  nursing care  plan) more effectively or to impose a doctor-nurse decision on an unwilling patient.   This negotiating of interpretations within the physiological facet is  on-going and  may be revised  at any time during  the trajectory's path. Deterioration with new symptoms will obviously occasion a review of medical-nursing decisions.  Patient's  anticipation  of  going home could similarly lead to revisions in the sense that  new or negatively indicating symptoms may be accounted for from beyond the physiological facet.  For example, feverishness which indicates new infections might be offered in patient  interpretations as consequences of  the unduly high temperatures  maintained  by the ward's central  heating  system. Or the appearance  of  metastases  in  a cancer patient  may  change a positive classification of the patient to definition of the patient as terminal.

The Temporal Order

 

Glaser  and  Strauss[xvi]  describe  the  'temporal  order' - the meanings  that  use of  time  introduces  to events or  situations- as another facet of the trajectory.  Illness has a temporal order. For the medical staff, 'rounds' structure their view of a day and its likely sequence of events.  For the nurse, an unexpected summons to the ward or to a patient's home throws the anticipated sequence  of  events for that day and requires a reordering and rethinking of the  remainder of the day.  Similarly the nurse's shift is  structured  into  a temporal sequence by  regularly scheduled events  like  meal  times or periodic observations on some or all of the patients.  Particular days  may be structured  as  operating days when the temporal order will be noticeably different than on another weekday or than at a weekend. Similarly certain days in regular cycles will be admissions days or days when a ward receives from Accident and Emergency Departments. In geriatric settings, daily time routines may vary very little day by day.   In  community settings, where the  patient  has  greater participation in determining the temporal  order, no regular schedule or  routine sequences of  events may  occur for the nurse. Other than waking and sleeping and receiving visitors, the patient's view of the time may be passive in the sense that the routines are set by the hospital and the patient has little  power to effect changes. On the other hand, an uncooperative patient who is demanding of staff time may disrupt, that is re-negotiate, the temporal order of the care  setting. But time as a facet of the illness trajectory is only a reflection of the established  or re-negotiated temporal order. Time passing is experienced by the patient and by the nurse. Some days are slow and tedious as they happen, some weeks seem to pass by unnoticed. The common experience of visitors to a patient is that visits pass uncommonly slowly while for the patient who has anticipated visiting time for much of  the day, they pass all too fast. To the busy nurse, a minute or two at the bedside seems costly time; to the patient the interaction was hurried and, in consequence, uncaring. How medical staff, nursing staff, patients and others experience time-passing, how they cooperate with or fight against someone's proposed schedule and what that schedule  means for these various participants fills in the temporal facet of that trajectory.

The Sentimental Order

 

The sentimental  order -  experience understood as a series of sentimental events  -  is the third facet of the illness trajectory. Admission procedures induce fear or nervous expectation.[xvii]  Tests aggravate these concerns  because testers show no reaction in conducting the test and leave the patient to fear the worst. Strauss, Fagerhaugh, Suczek and Wiener note that:

During  the  staff's  busy  medical  work,  the  patient's inner struggles with himself  or herself may  go unnoticed or at least not managed to the patient's satisfaction.[xviii]        

    Preparation  for  surgery  while  routine  for  the  nursing staff provokes distress in the patient which may turn into a sense of pathos or to anger.  The hyperactivity as nursing staff move  down  the day's surgical  list  is  bewildering.  The patient's  turn  coming suddenly amidst long  periods  of  empty  anticipation  and  perceived neglect, heighten fears nearing panic.  The day rather than time is experienced as  phases of sentiment whose anticipation  renders the  next hospital stay as an experience to be feared. Chronological time has no place in that sequence of memories nor in the sentimental events as  they  were originally experienced.  Experiencing sentiment  can be understood  as moving,  flowing,  swirling in  the   same  helical trajectory  as the experience of time or physiology.

   The  sentimental  facet  reveals:  "the  intangible  but  very real patterning of mood and sentiment that  characteristically exists    on each ward."[xix] A similar 'mood' may pervade any nursing situation. The  patient at  home,  in intensive care,  in a psychiatric facility, waiting in Accident and Emergency,  may experience  phases of concern, fear, hope, despair, elation or depression. How the patient represents that experience in interaction may effect the nurse or nursing team. Collective sentiment may be negotiated between patients and nursing team. The impending death or the  overt distress of one  patient may spread through the patient group.  The nurses may  be equally effected either with similar feelings or because they are forced to respond to manage the 'situation'. A day with a significant re-forming of the sentimental facet -  with a disturbance or happening  which excites or distresses staff and patients  alike -  will be  remembered because of that experience.

      Of course, the sentimental order characteristic of a ward is  a   very   complicated  interactional  phenomenon, and its maintenance is   certainly   not   dependent  only on sentimental work. ... Nevertheless, when sentimental tasks are  neglected  or  badly  done   or  ineffectively,  then the sentimental order is negatively affected -  how can it not be? ...  Of  course,  it  also  contributes   to staff members'  gratifications  over  their work,  as well as to their  own   sense   of  identity  as  related  to  their work.'[xx]

       The Strauss team  employ the notion that participating in a trajectory and its creation involves  'work'. Their view is that 'being'  involves sufficient effort to warrant a sense of being as an onerous burden. While not wholly convincing, their concept of "sentimental work"  does convey  the sense that  participating in a trajectory  is  more  than  'being'   but  does   involve  effort  and commitment,  if only  to  be  the  passive  recipient  of  care. Their division of  sentimental work  into  seven  categories:- interactional work;  trust work;  composure work;  biographical work; identity work; awareness  context work;  and  rectification work,  is limited  by the omission  of   one of the facets  of trajectory introduced  here, the social facet.[xxi] Their interactional work and trust work which will be  discussed  later,   are  less  concerned  with   constituting  the sentimental  facet of  trajectory  than with the problems  involved in dealing with  people as people  -  what is here termed  as the 'social facet'.

   Participation  in  the sentimental facet  of  the illness trajectory involves  five  kinds of  interaction. 

The first is, then, composure work. Nursing procedures may involve the patient in loss of face, dignity, poise or self control -  collectively defined as composure.

   Bowel control,  or  the lack  of  it,  is fundamental. Gross and Stone note:-

The body must always be in a state of readiness to act, and its  appearance must make this clear. Hence any evidence of unreadiness or  clumsiness is embarrassing. Examples include loss of whole body control (stumbling, trembling, or fainting), loss of visceral control (flatulence,    involuntary urination, or drooling), and  the communication of other "signs of the animal".[xxii]

It is seriously embarrassing, not only to the patient, but also to any other person  witnessing the loss of composure. Nurses versed in composure work tend not to show embarrassment whether they experience it or not in such situations. This ability is a source of much gratitude and also of surprise in the patient. It also gives the nurse considerable  power  in  restoring  the  loss  of  self   esteem  that accompanies  loss  of composure.  But being in such a situation, like many others - where men cry, relatives  are distressed, the nurse-learner is clumsy or forgetful, the doctor errs and has to be corrected - involves sentimental demands on both the nurse and the person involved. Meisenhelder argues:-

Making time to carefully and responsively listen to our clients strongly reinforces their self-worth. Other nursing actions which enhance self-esteem include acknowledging clients' feelings as legitimate and valid....Our  greatest  challenge in influencing self-esteem is not creating the authority or proximity for the relationship, but rather the difficult task of clearly communicating such unconditional feelings of value and worth.[xxiii]

Responding to the "difficult task" involves composure work for both nurse and patient.

Biographical work - taking a nursing history, finding things out about the patient for medical or nursing purposes or simply to satisfy management needs for information or, to put it another way, reconstructing the patient's past and present self - requires asking patients to reveal a wide variety of personal biographical details. This may involve delving into patient's secrets or invading their privacy. On the surface many of these questions may be more or less factual involving routine responses - about age and date of birth, for example. But in other circumstances the biographical information required is sensitive, deeply personal and embarrassing. To achieve revelation from  the patient, the nurse may need to 'invest' or to offer comparable personal details about themselves. This process of mutual revelation costs the nurse, draining emotion and putting her self at risk.

 

 Similarly the third  type  -  identity  work  -  makes demands on emotion and sentiment of  both  nurse and  patient. Nursing  care  in a number of situations involves working with patients  whose identity is at risk (attempted suicide),  in the process  of revision (mastectomy) or is  wholly or partly  lost (stroke).  Reconstructing identity is the reverse of biographical work, giving self back rather than  collecting it in.  The  nurse engages continuously  with the  patient to maintain identity often in situations where identity-spoiling is  integral   to nursing   care  (units  involving   extensive   use  of   technology). Identity  work  may involve  significant  emotional   investment  from the  nurse -  such investment  involves  intensive  'work'.   This  is especially the case where the patient does not or cannot respond  - in coma  or  deeply withdrawn  -  when the nurse is both  parties  to the interaction,  perhaps  doubling  the emotional   demand or sentimental costs.

      

  One of  the most  demanding  interactions  in  which nurses engage involves telling patients  or  their relatives bad  news.  More taxing still is withholding such information  when it is  available though not necessarily  certain,  particularly  when  confronted  with demands to tell.  Where  nurses are required to  withhold information and  to make 'telling'  decisions,  patient demands for that information have to be defrayed.  Deceiving patients in these ways and deciding  when to stop the deceit -  to tell -  can impose substantial demands on the nurse's emotions.  Glaser and Strauss have suggested that the constituents of the trajectory change around the dying patient when  the death becomes certain although  before  it is announced by  the doctor.  Nurses read 'cues',  picked up  from  shared  experience  around different illness trajectories. These cues confirm the likelihood of death.[xxiv] Yet that margin  of  uncertainty  prevents  telling  although  the  changes  in interaction around and with the patient may have  already told because patients read cues too.  This time coupled with  the constant reminder that it bears of the  nurses'  own vulnerability and futility involves the most demanding exchanges in a trajectory.

 

Finally the sentimental facet is constituted in rectification work. In most interaction settings, participants will recognise existing rules - 'You can't do that, here?' - or will negotiate rules to govern the current setting that their coming together creates - 'Let's not play tricks on each other, eh?'. But such interaction rules are frequently breached leaving patients or colleagues aggrieved. Continuing effective nursing requires that insults, senses of neglect or resentment after patient criticism, be rectified. Nurses will be involved in much of this type of work to compensate the patient for the actions of other nurses, doctors and the whole variety of medical personnel who come into contact with the patient. Giving excuses for others, especially ritual excuses to cover persistent failings in medical or nursing colleagues, is emotionally costly and a drain on sentimental resources. Yet rectification work is essential if damage done in interaction is not to so effect patients and others that the trajectory becomes seriously distorted.

Interacting requires some effort. Interaction in an emotionally charged situation like an illness trajectory involves greater effort. The sentimental facet of that trajectory is sustained by the kinds of effort just described. Strauss et al note:-

... the main procedural jobs to be done, involving as they do a sequence of  tasks, the sentimental work is woven in and out of these jobs. Sometimes the workers are quite unaware of the sentimental work; sometimes not. This work  may become such an integral component of a staff member's style that possibly he or she is not always self-reflective when doing the sentimental work, especially as the procedural work is usually salient. At any rate, during procedural work the sequential interlacing of different types of work can be complex - their separateness perhaps only noted by an observer who has both an eye for them and analytic purposes in finding them.[xxv]

The Social Order

 

As already suggested, this paper owes a great deal to the 'Trajectory' concept  introduced in the work of Glaser, Strauss and their California team. In order, however, to make greater use of their concept as an analytic it requires constant review and reappraisal. One facet of the illness trajectory proposed here does not occur in their  work - the social. The social facet is constituted in the comings and goings of people in and out of  the possible settings which are experienced in 'being a patient' and in 'being a nurse'.

In the community,  the sequences of characters involved might include a district nurse, a health visitor, the general practitioner, a home help, meals-on-wheels, neighbours, relatives and friends. On the hospital ward, the list is varied depending on setting, illness, ward speciality  and stage in the trajectory. The early patient may meet a variety of staff - the ward nurses in the different shifts on duty, the consultant and the various ranks within his 'firm', medical students, representatives of the nursing or hospital management, the chaplain, various specialists to take pre-operative tests and samples, various therapists, the cleaning staff, voluntary workers and  other patients interspersed with visiting friends and relatives. Each of  these bedside visitors requires some form of effort to open interaction, to engage in negotiation and communication and to close the visit.

The content of each visit will mark its significance more than the time that it takes. Testers and experts can be extremely important in the search for clues and cues they might give about the expectations for the future of the trajectory. Such visits might appear to be over far too quickly given the nervousness about negative indications they might signal. Loneliness intermingled with fear, especially after identity assaulting 'ritual degradation ceremonies'[xxvi] will give a much greater prominence to the identity reinforcing potential of visiting time. The 'nice chat'  with the vicar may mark the high-point of an otherwise empty day for the long-stay patient. The agonies of  physiotherapy awaited with trepidation, the mystery of radio-therapy and other high-technology settings may pose particular problems of how to deal with the individual who appears at the bedside carrying the signals and symbols of the challenge their visit portends. Each of these visits presents demands for effort from the patient. Each requires 'social' work.[xxvii]

The significance of the social facet of the trajectory for anyone involved concerns their self. Goffman talks of :-

On entering the hospital, he may very strongly feel the desire not to be known to anyone as a person who could possibly be reduced to these present circumstances, or as a person who conducted himself in the way he did prior to commitment. ...so as to avoid ratifying any interaction that presses a politely reciprocal role upon him and opens him up to what he has become in the eyes of others....[xxviii]

Strauss in a discussion of 'naming as an act of placement' similarly suggests that identity depends on the individual locating themselves amongst others. Identity does not exist in a social vacuum. Social work involves the maintenance, then, of a sense of self, of identity, by locating oneself among the others with whom the person interacts. Transfer to an illness setting involves the work of relocating the self among new others. Usually the patient comes to give up this taxing effort at anonymity, at not-hereness, and begins to present his/herself for conventional social interaction to the hospital community.[xxix] The desire to avoid personal bonds that would give licence to the asking of biographical questions could also account for this reluctance to be social.[xxx]

This phase may be suspended as the patient settles down. The patient is then resigned to the emerging identity that the hospital situation defines. Social work changes to dealing with new interactions with new people. And there is a constant stream of new people and, in some cases, new settings as the patient moves to different departments for tests and evaluations or moves from ward to ward in the progress from admission through surgery or therapy to their return home.

  The constant stream through the ward setting poses similar problems for the nurse. The consultant's rounds require preparation, especially of patients whose presentation for the consultant has to be attended. The hustle and bustle of preparation for the consultant's rounds generally involves tidying and ordering the ward. Patients are located in or about their bed-space. Often ambulant patients are coerced into bed and the bed itself is remade so tightly as to restrain the patient from movement or from 'messing it up'. A consequence of this and similar processes is to demand social work - that is to demand that the patient see themselves in an appropriate light. They are to re-see themselves as 'patients', passive and deferent, to speak only when spoken to, not to interfere with the orderly executing of the round. This reworking of self to be appropriate for the setting is a constant reminder of the temporary and insubstantial form of the self in a 'total institution'.[xxxi] Being ill at home may have the same consequences when the patient is prepared by members of their family because the doctor or the district nurse is coming.

The nurse may also engage in social  work with a variety of others whose visit may not have the same consequences for the patient but may pose problems for the nurse. Testers and specialists appear inappropriately  during visiting times or at meal times and the significance of those present has to be reordered. The medical visitor takes precedence over the lay visitor. Nurse managers appear who pose problems of evaluation, criticism or commendation. Bereft relatives or the anxious and concerned raise questions which might have to be defrayed or avoided without heightening grief or anxiety. Lost strangers have to be challenged and re-directed. New admissions require settling, admission and biography-taking. Although many of these occasions are less demanding because their frequency evolves ritual ways of dealing with them,  each might pose an unforeseen problem. 'Social' work is ongoing. The assumption that  the district  nurse has less problem because there may be fewer experts and specialists on hand would be equally to misunderstand. Lack of control of the setting poses more problems of 'engagement' with relatives, friends, neighbours and other visitors who might appear. Who has the right to wander into the setting is a prerogative of the patient or  their family. The family pet - dog, cat or whatever - has similarly to be encountered in that how they are dealt with may have a significance in establishing the patient's view of the nurse, especially for the single elderly person receiving the nurse for the first time. Again, 'social' work demands careful handling not least because the setting 'belongs' to the patient when the ritualised possibilities of the hospital are not available. This process of ritualising can be considered as an important feature of social work for nursing and other caring professions. Since the day to day work of  the nurse is largely concerned with what Glaser and Strauss term the "non-accountable" features of nursing - particularly giving TLC (Tender loving care) - then in the illness trajectory social work might be considered the more important facet for the nurse. A way of managing these demands is ritualising - producing and using ritual ways of dealing with the array of people who occupy the trajectory at any particular time to minimise social work. In working on clinic waiting time, I have observed the process of justifying to grumbling patients the absence of  medical staff by saying they have been detained 'for an emergency'.[xxxii] On another occasion, a sister when presented with a demand to account for the absence of a patient who had died in the night, said: "He's been moved upstairs." This response placated other patients' concerns in the short-term until they realised that the building had only one storey. With this realisation, the patients accounted for the demise of their friend without further reference to the nursing staff. But social work for the nurse cannot always be defrayed. Strauss et al include two kinds of  social  work which the nurse cannot avoid.[xxxiii] Since both are concerned with dealing directly with the patient, I would propose seeing them in the social facet of  the illness trajectory.

Strauss et al describe interactional work, that is a recognition that  nursing and  medical procedures involve the patient.  The nurse has to deal with the patient while  giving  an  injection,  applying a dressing, taking a temperature or doing any other nursing work. While there are possibly ways of rendering the patient passive during the work, this is not always possible. Anaesthesia, while relieving the patient of the need to feel pain, has the secondary advantage to the surgeon of rendering the patient passive. The problem for the nurse is that nursing work often  involves overriding  interactional rules, as in demanding exposure of otherwise unexposed parts of the patient's body. In everyday interaction, people are rarely asked by others to 'indecently expose themselves'. Although not indecent in the context of the illness trajectory, the patient has to resolve the contradiction. To do this they are likely to intrude in the nurse's work demanding explanation or reassurance of the appropriateness of the request.[xxxiv] To gain and sustain the patient's passivity or co-operation while the nursing work is in progress, the nurse needs to interact with the patient - interactional work.[xxxv]

Trust work - nursing patient's may involve any number of intrusions of privacy or involve inflicting  pain. The patient's coalescence depends on trust. Establishing and maintaining that trust is a necessary part of the nurse's dealing with patients - it involves work.

Situations cutting across the Illness Trajectory

 

Where we can 'cut across' the interweaving helices to see a patch of negotiated meanings which each participant might recognise as their having been there, then, we can describe a 'situation'. The nurse might describe a view of a series of actions - giving tender loving care to a patient attended by feeling satisfied with her 'success' in recognising a positive response from the patient. This would constitute the nurse's view of the situation although it is only one event in the sequence of events which constitute 'being a nurse on that day'. The patient might view that same situation as being calmed by a nice nurse during a period of distress and worry about their prognosis. The doctor's view might be that a nurse talked briefly to the patient while the doctor was engaged in reviewing the patient's stage of recovery as part of doctor's rounds. That brief exchange involving those three people can be described as a situation where three events, each being a separate event in a separate sequence of events for each of the three participants, occurred.

But  this latter approach is in danger of rendering the trajectory, as it would the process, in the same way that previous role analyses  represented a 'set of actions'. The trajectory is not a sequence of actions engaged in by a set of actors. It is a flow of meanings or understandings, an on-going process, it has no beginning nor an end. It can be given structure by overlaying or mapping the form with characteristics like time. We might say that the event occurred before or after other events. We might say that a particular situation sustained for several minutes. These devices might be useful to the analyst concerned with chronological events or with sequencing situations to make sense of them. But to the patient chronological time is less important than relating that  event to those events surrounding it in terms of the pain or distress that were relieved by the nurse's attention. 'Amid the pain and the worry, she was nice to me.' is the only meaning to be attached to the event as experienced or  remembered by the patient. That the event lasted two minutes has no meaning especially where time passing was not registered. To the nurse the patient 'bucked up a bit and this pleased me in a day of otherwise routine events'. The time taken is unimportant where the feeling of satisfaction makes memorable an otherwise unremarkable shift. Any attempt to render the events as a sequence of 'facts' or to empirically evaluate a situation would be artificial to the nurse and the patient although the observer rendering such 'facts' would be constructing, that is recreating, the trajectory in that form for some external purpose. Whatever that purpose might be, completing the nurse's time-sheet, costing the patient's treatment, evaluating the nursing care, would be to reconstruct the event and the situation in a form that neither the patient nor the nurse would recognise nor remember as they reflected on their experiences.

Biography - slicing down the Illness Trajectory

 

Anselm Strauss describes identity in:

This might be explored by abandoning concepts like "role" and "status"... and organizing thought around new concepts which might help jolt thinking out of its old ruts. I did adopt the concept of identity, just then coming into prominence either as a psychological (or psychiatric) category or as a rhetorical device for criticizing and bemoaning the evils of mass society. My idea of identity had nothing to do with either view; in fact I made no attempt even to define the term, preferring its use only as a means of opening up discussion which would pertain to the social psychology/social organization issue.[xxxvi]

For an individual, identity may be a means of accessing (opening up for discussion) their experience of an illness trajectory given in their account of it. A biography is then a vertical facet, a slice through the trajectory, in being one person's account of that set of experiences. But unlike published biographies we should not expect it to be a chronological account of events. The sequence and significance of what happens may be accounted for in terms of the relative importance of phases of emotion, excitement or fear. Today is remembered not as a twenty-four cycle of time but as two bouts of intense uncertainty and discomfort. 'I had a bad day, Tuesday,' may be to say on that day I do not remember particular times but a period of depression and uncertainty of who I was and why I was here, marked by a desire to get out. The experience passed with sleep or when that nice nurse appeared. When? is not a relevant question. It  would be  too simple for the nurse to dismiss such an experience because it only lasted ten  minutes. For the patient that was Tuesday. Wiener et al make a  similar point about parents experiencing the birth of a premature baby.

Parent biography. That parents have biographies based on who and what they are, and that these are brought into relationship with the birth trajectory, is self-evident. But crucial to the experience are the expectations they bring to the birth. For all parents, the birth of a child represents a radically changed biography, which may or may not jibe with their expectations. Add to this the delivery of a distressed baby, immediately subjected to a barrage of diagnostic and monitoring equipment, and the effect on the parents is intense. Feeding into the parental identity change are the anxieties and attitudes of grandparents, friends, and the common wisdom regarding 'premies' and/or handicapped children. [xxxvii]

This also introduces another facet in the care of patients - the technological - which  cannot be dealt with here. Suffice it to say that machines also have  biographies which although not interpretable by the machine may have significant consequences in and for  the biographies of others as in dialysis or mechanical, regular movement of the patient.

 



[i] Harvey A. Farberman, Founding the Society for the Study of Symbolic Interaction: Some Observations from the Co-Chairman of the Steering Committee, 1974-1975, Symbolic Interaction, vol. 20, no. 2, 1997, pp. 115-129.

[ii] Sadly, Professor Anselm Strauss died in September 1996, Dr. Carolyn Weiner although retired in June 1996 maintains a non-salaried appointment in the School of Nursing that the University of California, Berkeley. Personal Communication from Claudia West, Director, International Academic Services.

[iii] Anselm Strauss and Barney Glaser, Anguish: A Case History of a Dying Trajectory, London: Martin Robertson, 1970.

[iv] Harold Garfinkel and Harvey Sacks,  On Formal Structures of Practical Actions in John C. McKinney and Edward A. Tiryakian (eds.) Theoretical Sociology : Perspectives and Developments, New York : Appleton-Century Crofts 1970

 p. 361.

[v] Georg Simmel, Soziologie, Leipzig: Duncker and Humblot, 1908, p. 6ff.

[vi]  Form as method is intended here as used by Simmel. See the discussion of Simmels epistemology-methodology  and  forms in Nicholas J. Spykman, The Social Theory of Georg Simmel, New York: Russell and Russell, 1964 (first published in 1925) pp. 5-25.

[vii] Anselm Strauss,  Shizuko Fagerhaugh, Barbara Suczek and  Carolyn  Wiener,   Sentimental  work  in  the  technologized hospital, Sociology of Health and Illness, vol. 4, no. 3,1982  p.257.

[viii] See, for example, David Robinson, The Process of Becoming Ill, London: Routledge, 1971 and Thomas Scheff, Being Mentally Ill, New York: Aldine, 2nd ed., 1984.

[ix] Anselm Strauss and Barney Glaser, Anguish: A Case History of a Dying  Trajectory,  London: Martin  Robertson,  1970 and Barney  Glaser  and  Anselm  Strauss,  Awareness  of  Dying, Chicago: Aldine, 1964

[x] Anselm  Strauss, Mirrors  and  Masks: The Search for Identity,  London:  Martin Robertson, 1977

[xi] Talcott Parsons, The Social System, New York: The Free Press, 1951.

[xii] op. cit. Strauss, 1977

[xiii] David Robinson, The Process of Becoming Ill, London: Routledge, 1971

[xiv] op. cit. Strauss and Glaser, 1970, p.15.

[xv] Erving Goffman, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, Harmondsworth: Penguin, 1968.

[xvi]Anselm Strauss, Shizuko Fagerhaugh, Barbara Suczek and Carolyn Wiener, Social Organization of Medical Work,  Chicago: University of Chicago Press, 1985 p. 5

[xvii] Harold Garfinkel,  Conditions of successful degradation ceremonies, American Journal of  Sociology,  vol. 61, March  1956, pp. 420-424.

[xviii] op. cit.  Strauss, Fagerhaugh, Suczek and  Wiener,  1982, p.257. 

[xix] Barney Glaser and Anselm Strauss, Time for Dying, Chicago: Aldine, 1968, *[find page reference]*

[xx] op. cit.  Strauss, Fagerhaugh, Suczek and  Wiener,  1982, p.275.

[xxi] ibid. p.258.

[xxii] Edward Gross and Gregory P. Stone, Embarrassment and the analysis  of  role  requirements,  in  Arnold  Birenbaum and Edward Sagarin (eds.) People in Places: The Sociology of the Familiar, London: Nelson, 1973, p.113.

[xxiii] Janice Bell Meisenhelder, Self-esteem: a closer look at clinical  interventions,  International  Journal  of Nursing Studies, vol. 22, no. 2, 1985, p.132.

[xxiv] See op. cit.  Strauss and Glaser, 1970, and Glaser  and  Strauss, 1964.

[xxv] op. cit.  Strauss, Fagerhaugh, Suczek and  Weiner,  1982, p. 272.

[xxvi] op. cit.   Garfinkel , 1956.

[xxvii] Carolyn Weiner, Anselm Strauss, Shizuko Fagerhaugh and Barbara Suczek, Trajectories, biographies and the evolving medical technology scene: labor and delivery and the intensive care nursery, Sociology of Health and Illness, vol. 1, no. 3, 1979, pp. 261-283, offers one example in the extensive and increasing list of specialists who pass through delivery rooms and intensive care nurseries.

[xxviii] op. cit. Goffman, 1968, p. 136.

[xxix] ibid. p.136

[xxx] ibid. fn. 27, p. 136.

[xxxi] ibid. pp. 135-140.

[xxxii] Russell Kelly, Going to Clinic, Preston: Lancashire Polytechnic and Preston Community Health Council, 1986.

[xxxiii] op. cit.  Strauss, Fagerhaugh, Suczek and  Weiner,  1982.

[xxxiv] See Christian Heath, Participation in the medical consultation:  the  co-ordination  of  verbal  and non-verbal behaviour  between  the  doctor  and  patient, Sociology of Health and Illness,  Vol.  6,  No. 3, 1984, pp. 311-338, for accounts of similar intrusions  and how they are effected in doctor-patient interaction.

[xxxv] One problem posed in interactional work for the patient and for the doctor arises in the way that doctors often deal with this problem. Doctors resolve their problem of doing interactional work by communicating with one  patient, in isolation, in reporting on the patients diagnosis, treatment or prognosis. Patients, however, deal with this interactional work in a different way. Patients hear doctors comments or recommendations, first, in a context of  a worst scenario (what is the bad news?) and ,then, in terms of what is being currently, or has recently been, done to other patients around them (Steves fathers concerns about his angiogram relative to another patient sent home to wait six weeks for the same treatment, or the woman who died soon after receiving the same recommendation).  This is especially the case in bay-style hospitals wards where same-type patients are located together or in special units (e.g. coronary care, I. C. U.) and where awareness of immediate other patients circumstances is very high or intense.

[xxxvi]  op. cit.   Strauss, 1977, p.4.

[xxxvii] op. cit.  Weiner, Strauss, Fagerhaugh and Suczek, 1979, p.267.

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