Chapter 6: Here, there is nobody
6.6 Michael: “Just Put Me on The Scrapheap”
I asked the nurses which patients at that time they would describe as suffering.
Kirsty pointed at the door of room 2. “Michael”, she said without hesitation.
“He has pressure sores all over him, incontinence, depression.
He’s come from supported accommodation where carers saw him four times a day, they usually found him lying in his own excrement because he was faecally incontinent. If I were in his position I’d want someone to put a bullet to my head. Earlier I had to give him a suppository and I apologised first, I said “sorry, this is going to be a bit uncomfortable”, and he said “nowt new there. Just put me on the scrapheap””
Michael was a quiet man in his late seventies. He came into the ward from a warden-controlled housing. When he arrived, his state was - according to one staff nurse - “shocking”. Malnourished, with a grade four decubitus ulcer to his sacrum, and wearing soiled pyjamas, he hungrily swallowed the soup offered to him. His hands shook as he spooned it into his mouth, and lumps were caught in his tangled beard. Doubly incontinent and unable to walk, Michael had been utterly reliant on three carer visits a day. At home, these visits had usually been
brief and functional. Carers often found him lying in his own excrement. His incontinence meant that the pressure sore, regularly covered in excrement, had worsened to the degree that at the bottom of the gaping wound, it was possible to see only a thin layer of connective tissue over the bony prominence of his sacrum. The wound was the size of a fist. He required regular suppositories and enemas to manage his chronic constipation, but these usually led to faecal matter oozing into the wound which caused agonising pain. His response to the physical pain was to clench his eyes closed and turn his face into his pillow. He rarely spoke. Sweat beaded on his face and neck until the wound had been cleaned out with gauze and saline and the soiled adhesive dressing replaced.
The wound dressing needed replacing whenever there was a leakage of faeces, which was usually at least daily. I observed the procedure several times. As the nurse arrived pushing the trundling dressing trolley and equipment, he showed no visible reaction. This was a marked contrast to Florence’s anxious and tearful response when her wounds were dressed. Michael appeared resigned, surrendered, and powerless. The nurses had insight into how painful the procedure must have been, and always apologised beforehand. They often looked uncomfortable as they enter the room, only to smile brightly at Michael as they introduced themselves and explained what they were about to do.
6.6.1 Resignation
I asked Michael how he was. “I’m fed up of my body”, he replied. Yet when asked by a Registrar how his mood was, he replied “not too bad”, although his voice was flat, his eyes averted. The extract below describes a review on ward round, by the locum consultant and registrar.
(Long discussion between Dr Basu and Dr Frank about medical situation - bilirubin, diabetic review, surgeons…Over 5 minutes) So far, they have been discussing him at the foot of his bed in a single room without introducing themselves. M watching them but not listening particularly attentively - more a gaze in their direction. Now they are looking at the bloods. The discussion goes deeper - Dr Basu turns to me and summarises the story:
“he came in with infected pressure ulcers, there are no communications between the ulcer and rectum. He also has autoimune hepatitis and has a past history of PE20 and AF21. He has had antibiotics and now needs K22, LFT23, RBC24. His INR25 is on the slightly high side, he tells me. We need to keep an eye on it”
19 minutes after they first enter the room they finally talk to him Dr Basu: “Good morning sir, how are you?”
Michael: “Not too bad”
Dr Basu to Dr Frank: “What was the outcome of the MDT?”
Dr Frank: “He was referred to the social worker”
Dr Basu to M: “How are things at home?”
Michael: “I don’t live at home”
Dr Basu: “Where do you live?”
Michael: “England”
Dr Basu to Dr Frank: “Has anyone done MMT26?”
Dr Frank doesn’t know. Dr Basu goes through the MMT, or mini-mental test. These include what year it is, how old he is, what month it is…and questions which I would find hard to answer if I had been in a room with no access to the outside world for several months, as in Michael’s case.
Dr Basu: “How old are you?”
Michael: “38”
20 Pulmonary embolism
21 Atrial fibrillation
22 Potassium
23 Liver function test
24 Red blood count
25 International normalised ratio (a measure of clotting capability of the blood)
26 Mini Mental Test
Dr Basu: “And looking at me, what job do you think I do?”
Michael: “Looking at you? Well, you’re well-dressed. A good job, I imagine”
Dr Basu lifts the blanket to look at his feet. Listens to his chest.
Does not ask permission. Does not ask about pain.
He leaves.
Afterwards, I ask Michael how he is: “Oh, 90% okay”
Me: “And what about the rest?”
Michael: (shrugs)
It was curious that the doctors elected to pursue assessment of cognitive function in this encounter. Michael had very little sight of daylight to orientate himself to diurnal or seasonal rhythms. He had lived alone with no access to newspapers or television to be aware of the current prime minister. Visitors to his room were frequent, and only that day included a surgeon, three nurses and a dietician. Some wore uniform, others did not. The question about the job that Dr Basu did may have felt something of a challenge in the light of this. Yet Dr Basu notes that Michael failed many of the MMT items. I reflect that he did not actually introduce himself when he had arrived, and furthermore that his name badge was on back-to-front. I wonder how difficult many of these questions would be for anyone in this setting, with all the comings and goings of strangers.
When asked how he was, Michael’s most frequent response was to shrug.
Although able to speak, Michael chooses the shrug as his means of communicating his resignation. The overall tone of his shrug was clear to observers yet the volition behind its expression was open to interpretation. A shrug conveys either that someone does not know the answer to something, or that they do not care. It conveys uncertainty, or that something is to be
dismissed. So, either Michael did not know how the rest of him was faring on this day, indicating a state of disconnection from his body and his subjective sense of wellbeing, or he was communicating that he did not much care about how he was. Alternatively, the shrug might have been intended to challenge the
observer to push for more information; being subject to being ignored, and the resulting sense of invisibility, may have placed Michael in a position of wanting to hold on to his own information until he felt the listener was ready to listen.
Efforts made by nursing staff to improve his hygiene and appearance were well-intentioned but did not appear to ultimately have the desired effect. It was not his beard (or lack thereof) that made Michael suffer, but his ongoing pain, the indignity of having a wound that permanently leaked faecal matter, and the vulnerability and dependence of being confined to bed and surrounded by strangers. In the face of these obstacles it was hard to see how Michael could maintain his sense of self and adulthood. The clinical examinations of his wound not only caused physical pain but involved transgression of bodily boundaries. Examination of his wound and anus to establish whether the
tissues between them had broken down was a profoundly degrading and painful intervention, and one which would normally be expected to cause vulnerability and anxiety. However, Michael’s response was one of resignation. His
statement that he was “fed up of his own body” implied that he saw his body as separate from himself. He had come to accept passively not only the shaving of his beard, but two painful (and probably futile) examinations of his pressure sore. Before he had come into hospital Michael had spent his time at home alone in bed, sometimes listening to the radio, but mostly sleeping. The only interruptions to his day came from visits from carers who – under pressure to achieve the required number of visits – often spent less than half an hour with him, washing and dressing him or preparing his food. On some visits, they would ask him whether he wanted something and he would wave them away.
They would write in his notes “declined cares today” to cover themselves from potential litigation.
Michael’s unkempt experience was often equated to a lack of wellbeing. In handover one morning, nurses were concerned that he had refused a shave.
One staff nurse said “we’ll go back to him. Maybe Jasmine can work her magic - he’ll feel better with a shave”. The others nodded their agreement.
Later that day, suitably shaven, the nurses were pleased to report that Michael
is “doing much better”. I ask them what changed. “We gave him a shave, he’s had a right good fettle”. Another nurse nodded, “he looked really unkempt.” I peered around the door to say hello and see him. I hardly recognised him without his beard. His white, wispy hair was combed to one side. A cold cup of tea sat on the bed table in front of him, and he stared ahead, into space. He was the same person as before. I asked him how he is, and his shrug was the same.
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6.7 Conclusion
This chapter has presented aspects of suffering relating to five of the participants: Vincent, Florence, Rita, Alfie and Michael. The extracts and discussion allude to the complexity of the suffering experiences of these patients. The accounts demonstrate numerous ways in which suffering was a shared human experience, with common and shared elements. Yet they also illustrate ways in which suffering was unique for each of these participants, and was a product of the situation in which they find themselves and their individual constitution. It was necessary to contextualise these accounts and this has taken the form of accounts of parallel conversations with staff, or environmental features. These contextual issues will be further examined in chapter 9 which attends to the issue of iatrogenesis – the potential for suffering to be caused or exacerbated by interactions, interventions or the environment.
Suffering took on a variety of forms for these participants that cannot easily be encapsulated in themes or categories. Particular events were selected from the field notes to examine facets of suffering that were felt to typify the experience of that participant. However, the accounts are by necessity both limited and limiting. Participants rarely conceptualised their experiences as suffering, but used a range of proxy terms or phrases to indicate suffering. True, these could also be conceptualised as distress, or dis-ease, or any number of synonyms that have been associated with suffering. However, the purpose of the chapter was not to drill down to an ‘essence’ of suffering but to present a series of stories that attest to the idiosyncratic and complex nature of suffering for these participants. The narratives in this chapter will be returned to in chapter 8 when
I undertake a theoretical analysis of suffering, locating the kinds of themes identified here within the broader context of the literature. This chapter will deal with issues such as alienation, loss and disconnection, drawing on a range of disciplinary perspectives to gain deeper understanding into the kinds of
phenomena that contributed to the suffering experiences of these participants.