VOL: 96, ISSUE: 36, PAGE NO: 39
Mave Salter, MSc, RN, is clinical nurse specialist, community liaison, at the Royal Marsden Hospital, Sutton, Surrey
I was introduced to Stuart and Dana, both in their mid 30s, on their first visit to the Royal Marsden Hospital in Surrey last October. The outpatient sister phoned me, as there were issues around altered body image and care at home that she thought I, as clinical nurse specialist, community liaison, could help with.
Dana was in tears when I arrived, clutching a cup of tea. A nurse who had listened to her concerns identified these as feeling isolated, having no interest in the house, saying she rarely went out and that, when she did, Stuart complained as he wanted her at home.
Dana had ‘had enough’ and wanted to leave her husband. She cried silently for a while and I asked her, when she felt able and ready, to tell me her story. Her narrative has implications for all nurses.
Nursing should be participative, collaborative and empowering (Corner, 1997). Empowerment is concerned with the nurse working interactively alongside a patient to understand, assess and teach clients about the altered physiology of the body, and to comprehend the experience of this, as described by the patient and their family as they try to make sense of their illness (Price, 1996). Therapeutic intervention is therefore at the heart of nursing care.
One of the key features of palliative care is that it should be ‘seamless’. From diagnosis to death there should be help, advice and professional support, whether in an inpatient setting or in the community (Neal, 2000).
The onset of a life-threatening illness presents a tough challenge to the emotional stability and physical boundaries of a couple’s relationship (Baider et al, 1998). Furthermore, Radley and Green (1986) found that a patient’s inability to come to terms with illness was reflected in difficulties within the husband-wife relationship. Therefore, caring for carers alongside the patient is of paramount importance.
Dana and Stuart had been married for 12 years. Stuart’s motorbike went under a lorry 10 years ago and the head injury he sustained left him hemiplegic, dysphasic and extremely depressed. In 1998 he was diagnosed with cancer and underwent major treatment - this left him with further body image problems. As if this wasn’t enough, he also contracted meningitis.
Chronic illness is a lived experience (Cameron and Gregor, 1998) where the body ‘loses its silence’, calling attention to itself (Bleeker and Mulderij, 1992). Part of Stuart’s cancer treatment included high-dose steroids; he became manic and threatened to kill himself and Dana. This manic period resolved, but Stuart had withdrawn more into himself in the intervening months, so much so that he was living upstairs while Dana and their young child lived predominantly downstairs, with Dana sleeping on the sofa.
Stuart objected every time Ben made a noise with his toys. Dana felt she and her husband no longer communicated and Stuart rejected all her efforts to help him both physically and emotionally.
What saddened and disappointed me was that the nurse assigned to Stuart’s care from the referring hospital had made no intervention apart from one follow-up telephone call to Stuart when he was discharged some months previously. Dana had asked her GP for help for herself, and access to a nurse counsellor at the surgery had been arranged. However, Dana lasted for only two sessions. The counsellor yawned and looked at her watch - Dana felt she was not being listened to.
Did these two nurses understand the therapeutic role of the nurse?
Wants and needs
I suggested Dana give me a ‘shopping list’ of her wants and needs, explaining that I didn’t have a magic wand, but, supposing I did, asking what she would like. Her list was very practical. She wanted:
- A break from everything;
- Being able to return to work (even just occasional agency work) to provide a routine to the day;
- New clothes for herself, Stuart and Ben;
- Financial help for a hole in the roof of their home to be repaired and a downstairs toilet for Stuart’s use.
By this time Stuart had been seen by the doctor. I suggested to Dana that I see Stuart alone and then as a couple, to which she agreed. Because of his dysphasia, Stuart was difficult to understand and I realised I required Dana to be present to aid my comprehension of what he was saying.
Stuart’s main concern was his body, which he saw as the main reason why Dana didn’t want sex anymore (they had not been intimate for six months). Self-esteem is related to the sense of personal value through acceptance and validation as a sexually desirable person (MacElveen-Hoehn and McCorkle, 1985). I explained that their relationship-building would need to be the first step in any reconciliation and that, on Dana’s part, this would have to be her decision.
In the meeting with them both, the following plan was agreed, based on Dana’s and Stuart’s wishes.
Stuart recognised that Dana needed a break. He agreed to come into hospital for a few days to coincide with Ben’s half-term; Dana would take Ben to her mother’s for the week and services would be provided for Stuart at home following his discharge from hospital. As Stuart had not been alone at night before, this was to include a Marie Curie night sitter for the first night, as well as help with personal care each morning and provision of meals.
A referral was made to the social services department for a package of care to enable Dana to go to work. Dana agreed to look for a morning job.
We are very fortunate to have a charitable fund available for patients in need. Following Stuart’s road-traffic accident, a trust fund had been established in his name; however, this left the family with only £103 a week for food, petrol, out-of-pocket expenses and clothes. There had been times when Dana had no money for petrol for the car, nor for the train fare to see Stuart when he was in a previous hospital.
This had led to Stuart feeling rejected and Dana frustrated with their budgetary problems. It was agreed to access some funding for new clothes and to finance the break for Dana and Ben. Also, Ben’s birthday was only a couple of weeks away and I offered to find funding for a party.
Referral to the occupational therapist to assess and process the need of a downstairs toilet, and to the benefits adviser to access funding for the roof repair), were instigated.
Additionally, Stuart agreed to referral to the local hospice home-care team, so that he could receive ongoing symptom-control at home. Both Dana and Stuart were happy for an appointment to be arranged with a member of the hospital’s psychological support team.
I would be the coordinator of care and follow up on any issues that either Stuart and Dana wanted to bring - either together or individually - but especially for Stuart’s concerns around his body image. A supportive network of hospital staff is of great importance in the patient’s adaptation to deformity. Therefore, it is necessary to assess how the patient is coping with body image changes and intervene as appropriate. Research has confirmed that adaptation to stressful events may be facilitated by social support (Baider et al, 1998).
Outcomes and follow-ups
Dana and Ben got away for a few days, but Stuart was not happy to be without the family at night. We offered an extended stay in hospital for two nights, but, because Stuart wanted to be at home, Dana agreed to come back early from her break.
A package of care was arranged for Dana to return to work; however, Stuart’s condition deteriorated quite rapidly and she decided to postpone this. Financial help was made available, with which Dana bought her husband new underwear for his stay in hospital and also paid for Ben and his friends to see Tarzan as a birthday treat, followed by a meal at McDonald’s. There were still sufficient funds for Christmas presents.
The benefits adviser arranged for the local social services department to visit regarding the roof repair, and the occupational therapist processed the referral for the downstairs toilet.
The community palliative care team visited Stuart and Dana at home, and the hospital’s psychological support department saw them for one joint appointment. Stuart’s deterioration, however, meant further intervention was not possible.
Stuart entered the local hospice on the eve of the millennium and a few weeks later he died peacefully, with Dana at his side. Dana wanted to repay some of the money from the charitable funds, but she had not yet bought herself anything, saying that she felt ‘guilty’ if she spent any money on herself.
I suggested she might like to buy an outfit for the funeral, which was scheduled for Valentine’s Day - she agreed. Following the funeral, Dana visited the hospital with a donation from family and friends and a picture Stuart had painstakingly painted reflecting how he saw his cancer. She said that just before Stuart died, they were able to tell each other of the love they shared.
I remain in contact with Dana and use their story as a nursing narrative. There are so many ‘what ifs’:
- What if the nurse from the referring hospital had intervened in their situation earlier in a truly therapeutic way, so that more time could have been redeemed for this needy couple?
- What if the counsellor had not yawned and looked at her watch - what might have been achieved and resolved?
- What if the outpatient sister had been so busy that she failed to pick up on Dana’s distress?
- What if I had by-passed the ‘wish list’?
- What if Dana had given up and left Stuart?
- What if Stuart had not deteriorated so quickly? With some of those what ifs, we might have been able to achieve much more.
Therapeutic nursing should be orientated towards illness and its meaning, encourage illness narratives from the patient and establish a relationship that is creative rather than passive. This may mean restructuring services to permit such an approach, something that may well need careful investigation with current staff shortages and lack of resources (Corner, 1997).
What we do in our everyday practice, as described in Benner’s (1984) intuitive, reflective practice, encompasses the therapeutic dimension of nursing. As nurses we are privileged to be able to make a difference to patient and family care.
- The patients’ names have been changed