VOL: 96, ISSUE: 41, PAGE NO: 35
Helen Goodman, BA, BSc, RGN, is research nurse, department of nursing and quality, Royal Brompton and Harefield NHS Trust, LondonThe thoracic surgical ward at Royal Brompton Hospital in London treats patients with operable primary lung cancers. Some require further treatment with radiotherapy or chemotherapy, but some may have no further contact with any health care professional following their outpatient appointment. The staff on the ward became concerned that patients might have questions and concerns after leaving hospital but be reluctant to telephone the hospital or see their GP, even though a 24-hour helpline number was available at the hospital.
The thoracic surgical ward at Royal Brompton Hospital in London treats patients with operable primary lung cancers. Some require further treatment with radiotherapy or chemotherapy, but some may have no further contact with any health care professional following their outpatient appointment. The staff on the ward became concerned that patients might have questions and concerns after leaving hospital but be reluctant to telephone the hospital or see their GP, even though a 24-hour helpline number was available at the hospital.
Although patients are called within a fortnight of discharge, principally for audit purposes to identify problems such as wound infections, they are not specifically asked about their feelings. This pilot study was thus established to explore patient needs after discharge.
Very little research has been done in this area. Helgeson and Cohen (1996) reviewed research addressing the association of emotional, informational and instrumental support to psychological adjustment to cancer. McArdle et al (1996) evaluated the effect of support for patients with breast cancer and concluded that a breast care nurse significantly reduces psychological morbidity. Similarly, Devine and Westlake (1995) performed a meta-analysis of 116 intervention studies looking at the effect of psycho-educational care for adults with cancer and found they benefited patients in relation to anxiety, depression, mood, nausea, vomiting, pain and knowledge.
A descriptive, exploratory design seemed the most appropriate, especially as a similar project had been undertaken looking at cardiac patients' needs (Goodman, 1997). We decided to employ a similar design using patient diaries and unstructured interviews. Eleven patients were approached as a convenience sample; one refused. The inclusion criteria were:
- First time surgery for primary lung cancer;
- Able to read and write English.
The exclusion criteria were:
- Metastatic disease;
- Disease requiring further treatment such as radiotherapy or chemotherapy;
- Additional procedures performed such as chest wall reconstruction.
All the patients (six men, four women) were aged between 52 and 75 and having surgery for non-small cell carcinomas. Prior to discharge they were given an information sheet and a copy of the consent form and asked to keep a diary for four weeks at home, recording any questions, thoughts or feelings that occurred to them. At their four week outpatient appointment they were interviewed (unstructured).
The researcher also asked them what information they had received from the hospital and what contact they had had since discharge: for example, had they telephoned the helpline or received a follow-up call from ward staff.
Six complete transcripts from interviews at the outpatient appointment (one woman and five men) and one from an untaped bedside interview of a re-admitted patient were obtained. Of the other three patients (all women) one withdrew from the study without giving a reason. Another felt too depressed to be interviewed and another said her main problem was sciatica and she had very little to say about her operation because she had been too pre-occupied with the sciatica pain.
Only four of the diaries were returned (one woman, three men). The transcriptions and diaries were analysed for themes in two main categories: psychological and physical needs (see Box).
In the diaries there were only four areas where there was more than one patient making a comment on a particular theme. These were pain, sleep, medication and achievements.
All were at different stages of acceptance of their cancer. One had been shocked initially but seemed to have accepted it. One could not come to terms with his diagnosis and had felt more anxious since discharge. Another felt more worried after the operation, despite initially being told the cancer was inoperable.
It seemed physical symptoms were easier to accept - indeed, most patients found their physical symptoms bearable or better than they had expected. Said one: 'Physically, I have been well, apart from a few pains and a bit of shortness of breath, and you expect that. But it's mentally, kind of thing. It's the things that go through your mind. That's the problem.'
Depression or low mood was a common theme. This seemed to be worse after discharge when the patient was away from the bustle of the ward and had time to think. Also, from the interviews, it appeared that social support or success of surgery did not relieve these feelings.
Six voiced some form of psychological need or difficulty and the use of hospital helpline or routine follow-up calls did not seem adequate. The patients seemed to feel that the nurses were mainly concerned with their physical well-being.
Cancer as a concept
Not all the patients used the word 'cancer', but those who did seemed to have questions regarding their treatment or the causes. A frequent concern was whether it would recur.
Three patients mentioned a sense of loss at moving from the safe, protective environment of hospital to home. It appeared once they were home, the reality of their illness hit them. Said one: 'When you are in hospital you feel safe with everything. Whatever you need, its here, whatever happens it's there. You go home and, I'll be honest with you, the first night I had nightmares.'
Need for support
Two of the patients had members of their family with medical knowledge and they were able to allay many of their fears and answer their questions. Two had social problems that required further input by social services. One of these patients was re-admitted and appeared to have been inadequately prepared for discharge; his wife had needed to contact their local social services. The other patient needed assistance filling in forms to claim financial support. Some patients simply required someone to answer their questions and listen to their anxieties.
Physical needs and questions
These were varied and most could have been addressed with a visit or phone call, or even a chat before discharge. They included questions about appetite, constipation, weight loss, stitches, coughing, chest sensations, wound care and sleep.
Patients made comments relating to the sensation of pain and the question as to whether what they were feeling was normal: 'The other thing was the actual chest pain itself. There was a sensitivity and a deadness which I hadn't been warned of and it did worry me a bit as I didn't know what it was.'
They also commented on their expectations and how they did not expect the extent and type of pain that they experienced once they had gone home.
Two patients asked for advice on moving around and positioning themselves so as not to put strain on their wounds. Another asked about riding a bike. In the diaries, various daily achievements, such as doing jobs around the house, driving, going back to work and going for walks were used as markers to encourage the patient that they were getting better.
Patients seemed to know when to take their medications but not how long to take them for or how to wean themselves off painkillers. A couple of patients asked for more information and alternative types of analgesia. One patient wanted to know why he had not been recommenced on his medication for arthritis.
Discussion and recommendations
There are, of course, severe limitations to this study in that the sample was small and there was incomplete data collection due to poor compliance. Nevertheless, the following recommendations can been made to ensure a more comprehensive service.
- A more thorough attempt could be made to ensure patients receive the hospital information booklet;
- The booklet could be updated to include more practical advice and address the questions raised in the study;
- The timing of the postdischarge telephone call should be discussed further;
- A more thorough explanation of medication side-effects, and when and how medication should be discontinued is needed.
- Given the prevalence of feelings of depression and difficulty in accepting that treatment was over, discharge planning could include a psychological assessment which could be followed up in the post discharge telephone call;
- Patients need to feel the person talking to them has expertise and is concerned about their general well-being rather than just their physical ability;
- The discharge preparation could include information on support organisations so patients have resources available when they go home.
- More comprehensive social assessment is required;
- It may be beneficial for someone from outside the family unit to go and talk to the patient, someone who is able to answer questions and listen to fears.
- Formal education sessions could be provided. Such sessions could include education on types of pain and analgesics. The nurse or physiotherapist could also include advice on positioning and outline the type and amount of exercise expected.
This pilot study highlighted a number of areas that could be looked at in future research such as:
- The incidence of psychological problems and help available;
- Whether age and medical knowledge has any effect on acceptance and coping ability;
- A longer study may reveal more about the needs of patients and how they cope with a diagnosis of cancer.
Most patients in this study recovered physically far better than they had expected. However, a significant number suffered psychological distress, at least in the short term. During the first four weeks patients are still coming to terms with their illness and some face anxieties and depression.
There are plans to appoint a Macmillan nurse to follow up many of the issues highlighted, particularly the gap between hospital and home and the patients' social concerns. Many questions could be addressed with a formal ward teaching programme. In conclusion:
- Patients undergoing thoracic surgery for lung cancers have very individual needs;
- Patients' social and psychological needs are often not thoroughly assessed;
- Patients may experience psychological difficulties after discharge following thoracic surgery.