Aoife Drew, BSc (Hons), RN,Staff Nurse; Tonks N. Fawcett, BSc (Hons), RN, MSc, RNT, ILTM
Aoife-Department of Nursing Studies, University of Edinburgh, Edinburgh. This paper was written during her final year as an undergraduate student nurse; Fawcett-Lecturer, Department of Nursing Studies, University of Edinburgh, Edinburgh...
Cancer is one of the most feared diseases in the western world because it is unpredictable and can affect anyone without warning (Sawyer, 2000). Incidence of the 10 most common causes of cancer deaths is shown in Figures 1 and 2 (Alexander et al, 2000). Newly diagnosed patients embark on a journey with an uncertain destination, laden with stress and anxiety, and desperate for hope and support. Provision of information can help these patients in terms of physiological as well as psychological outcomes, enabling them to regain control over their lives and participate fully with treatment (Sawyer, 2000; van der Molen, 2000). The complexities of the cancer process show how a single diagnostic label, such as lung cancer, reflects widely differing pathological processes and different treatment programmes and potential outcomes. Meredith et al (1996), in their study investigating the information needs of cancer patients, found that only 30% of patients expressed an absolute need to know the medical name of their cancer. This may suggest that, for the patient, cancer is seen as the same illness regardless of the type of tumour or site of origin. Meredith et al (1996) describe a lack of awareness in many cancer patients that their prognosis could vary greatly depending on the site and type.
Over the past decade, cancer has been high on the political agenda. A key contribution that led to the reorganisation of many cancer services in the UK was the 1995 Calman-Hine report, A Policy Framework for Commissioning Cancer Services. A principle that arose from this report was that: 'Patients, families and carers should be given clear information and assistance in a form they can understand about treatment options and outcomes available to them at all stages of treatment from diagnosis onwards.'
Wanting information about their cancer biology does not necessarily mean that individuals will want to participate actively in treatment decisions. For example, the decision to treat certain forms of breast cancer with mastectomy or with more conservative surgery followed by radiotherapy has no demonstrable impact in terms of long-term survival (Jacobson et al, 1995), but many women still wish to leave such a decision to health professionals (Degner et al, 1997). Kravitz and Melnikow (2001) identified three important questions when considering patient involvement in decision-making:
Wilkinson (1999) sees the key components for good communication with patients who have cancer to be not whether to tell a patient the diagnosis or prognosis, but rather to be able to assess the patient's communication needs and tailor communication accordingly. In the arena of cancer care, communication regarding the reality of a patient's condition must never be seen to rob the patient of hope. Although it has been suggested that patients who are better informed about their disease are likely to be more hopeful (Hinds et al, 1995), it may equally be argued that, by not giving certain information, patients may more easily retain their optimism and hope. A concern that health-care professionals have about giving distressing information is that it will so upset the recipient that all hope may be removed and that, without hope, the individual will lose their personal resources for coping (van der Molen, 1999).
Meredith et al (1996) studied 250 patients attending an oncology centre in Scotland and found that 96% of patients specifically wanted to know if their illness was cancer and 79% wanted as much information as possible regarding intervention. Almost all patients wanted to know the choice of care and the side-effects of treatment.
It is necessary to determine the particular information needs of any one patient in order to address these efficiently and effectively.
Despite the increasing demand for more information to be given to patients, there is evidence to suggest that, perhaps in order to retain hope, there will always be some patients who, in fact, do not want information. Thomas et al (1998) used an information-needs questionnaire to estimate the level of information patients wanted after their cancer diagnosis. They found that 20% wished to receive only positive information and to let the doctor make decisions for them. It is interesting to note that measurements of anxiety levels in this group were found to be very low. It could be argued that the old saying 'ignorance is bliss' therefore has some credence and should be respected (Thomas et al, 1999).
Despite the wealth of literature available on the subject of information-giving to cancer patients, most of it does not address how much detailed pathophysiology should be given to patients. It has been established that the practice of information-giving to cancer patients often remains less than ideal. Traditionally, health-care professionals have determined the type, amount and format of the information given to patients in a health-care setting (Wilkinson, 1999; van der Molen, 2000). The challenge for nurses, however, is to identify the various reactions from patients with a cancer diagnosis, from those who wish to know everything about their cancer, to those who wish to know nothing at all. Leydon et al (2000b) state that: '... patients' seeking strategies fluctuate, sometimes by the minute. It is imperative that we view patients' needs as fluid, individual, and unexpected and, even if counterintuitive, these needs should be dominant.'
Cancerlink, 11-21 Northdown Street, London N1 9BN. Tel: 020-7833 2818. www.cancerlink.org
Alexander, M.F., Fawcett, J.N., Runciman, P.J. (2000) Nursing Practice Hospital and Home: The Adult. Edinburgh: Churchill Livingstone.
Audit Commission. (1993) What Seems to be the Matter? Communication between hospitals and patients. London: The Stationery Office.
Calman, K., Hine, D. (1995) A Policy Framework for Commissioning Cancer Services. London: The Stationery Office.
Deeny, K., McGuigan, M. (1999) The value of the nurse-patient relationship in the care of cancer patients. Nursing Standard 13: 33, 45-47.
Degner, L.F., Kristjanson, L.J., Bowman, D. et al. (1997) Decision aids for patients facing health treatment or screening decisions: systematic review. Journal of the American Medical Association 277: 18, 1485-1492.
Fallowfield, L., Ford, S., Lewis, S. (1994) Information preferences of patients with cancer. Lancet 344: 8936, 1576.
Fallowfield, L., Jenkins, V. (1999) Effective communication skills are the key to good cancer care. European Journal of Cancer 35: 11, 1592-1597.
Ford, R.D. (1987) Patient Teaching Manual 2. Philadelphia, Pa: Springhouse.
Harris, R.L. (1997) Consistency of patient information ... is this happening? Cancer Nursing 20: 4, 274-276.
Hinds, C., Streater, A., Mood, A. (1995) Functions and preferred methods of receiving information related to radiotherapy. Cancer Nursing 18: 5, 374-384.
Jacobson, J.A., Danforth, D.N., Cowan, K.H. et al. (1995) Ten-year results of a comparison of conservation with mastectomy in the treatment of stage I and stage II breast cancer. New England Journal of Medicine 332: 14, 907-911.
Kravitz, R.L., Melnikow, J. (2001) Engaging patients in medical decision making. British Journal of Medicine 323: 7313, 584-585.
Leydon, G.M., Boulton, M., Moynihan, C. et al. (2000a) Cancer patients' information needs and information-seeking behaviour: in depth interview study. British Medical Journal 320: 7239, 909-913.
Leydon, G.M., Boulton M, Moynihan, C. et al. (2000b) Information needs of patients with cancer (letter). British Medical Journal 321: 633.
Luker, K.A., Beaver, K., Leinster, S.J. et al. (1995) The information needs of women newly diagnosed with breast cancer. Journal of Advanced Nursing 22: 1, 134-141.
Luker, K.A., Beaver, K., Leinster, S.J., Glynn Owens, R. (1996) Information needs and sources of information for women with breast cancer: a follow-up study. Journal of Advanced Nursing 23: 3, 487-495.
Maguire, P., Faulkner, A. (1988) Communicate with cancer patients: handling bad news and difficult questions. British Medical Journal 297: 6653, 907-909.
Meredith, C., Symonds, P., Webster, L. et al. (1996) Information needs of cancer patients in the west of Scotland. British Medical Journal 313: 7059, 724-726.
Mills, M.E., Sullivan, K. (1999) The importance of information giving for patients newly diagnosed with cancer: a review of the literature. Journal of Clinical Nursing 8: 6, 631-642.
van der Molen, B. (1999) Relating information needs to the cancer experience: 1. information as a key coping strategy. European Journal of Cancer Care 8: 4, 238-244.
van der Molen, B. (2000) Relating information-needs to the cancer experience: 1. Jenny's story: a cancer narrative. European Journal of Cancer Care 9: 1, 41-47.
Mossman, J., Boudioni, M., Slevin, M.L. (1999) Cancer information: a cost-effective intervention. European Journal of Cancer 35: 11, 1587-1591.
O'Rourke, N. (2000) Collusion in doctor-patient communication: patients rarely regret optimism (letter). British Medical Journal 322: 1062.
Sawyer, H. (2000) Meeting the information needs of cancer patients. Professional Nurse 15: 4, 244-247.
The, A.M., Hak, T., Koeter, G., van der Wal, G. (2000) Collusion in doctor-patient communication about imminent deaths: an ethnographic study. British Medical Journal 321: 7273, 1376-1381.
Thomas, R., Brown, C., Dalton, L. (1998) Anxiety and depression: effect on patients' preferences for information following a diagnosis of cancer. Annals of Oncology 9: 141.
Thomas, R., Thornton, H., MacKay, J. (1999) Patient information materials in oncology: are they needed and do they work? Clinical Oncology 11: 4, 225-231.
Wilkinson, S. (1991) Factors which influence how nurses communicate with cancer patients. Journal of Advanced Nursing 16: 6, 677-688.
Wilkinson, S. (1999) Communication: it makes a difference (Schering Plough Clinical Lecture). Cancer Nursing 22: 1, 17-20.