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Responding to the information needs of patients with cancer

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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 not one disease; it is a collection of diseases that have certain common characteristics. Although many patients diagnosed with cancer appear to come to terms with their diagnosis, anecdotal evidence suggests that very few of them seem to be aware of their own unique cancer biology.

All cancers begin as an individual cell. Because each cell in the body varies, each cancer also varies, and a single diagnostic label may reflect varying pathological processes and treatments. The prognosis for individual patients will inevitably vary.

How much of this underlying biology does the patient want or need to understand? Today there is a growing awareness regarding the importance of information-giving. The challenge for nurses is to identify the various reactions from patients with a cancer diagnosis. These will range from those who wish to know everything about their illness to those who wish to know nothing at all. In addition, information needs may not remain static but may change throughout the cancer experience.

Understanding of the cancer diagnosis
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.

While patients vary in the amount and nature of the information they want, each has his or her own unique information needs, so quality of assessment and communication is of paramount importance. Mossman et al (1999) state: 'For those patients who will die from their disease, quality of life must be a priority since survival is unattainable; for those who will recover, it makes sense that they do so without unnecessary psychological sequelae from information deprivation.'

Communication skills in cancer care
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.'

Mills and Sullivan (1999) argue that, without nursing involvement in information-giving, many patients will not truly understand their illness, prognosis or treatment options, which could affect their recovery. The involvement of nurses in providing and co-ordinating patient education is essential to patients' well-being. Nurses who provide physical care alone are doing only half the job (Ford, 1987). They have a responsibility to provide cancer patients with the specific type and amount of information necessary for informed decision-making to take place (Luker et al, 1995).

Effective communication skills will ultimately depend on the unique assessment skills of nurses to determine appropriately and sensitively the needs of the individual patient.

Each person will respond to his or her diagnosis in a unique way that will be determined by several things: cultural background, religion, support networks and the quality of rapport with the health-care professional (Deeny and McGuigan, 1999). It is difficult, however, to predict how patients will respond in the event of a cancer diagnosis. The key to making a successful journey will depend on how well we assess the needs of our patients.

Irrespective of the source of any prior knowledge, the success of further communication depends on an assessment of the patient's understanding of cancer, their expectations and their information needs (Fallowfield and Jenkins, 1999). The type, amount and depth of information will vary considerably between individuals. Information needs are unlikely to remain static but change throughout the cancer experience (van der Molen, 2000).

Information and treatment decisions
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:

- Can patients take a leading role in making decisions?

- Do they want to take this leading role?

- What if health-care professionals do not like their choices?

They acknowledge, however, that the desire for information is almost universal even if a patient's degree of active engagement in treatment choices varies: 'Most patients want to see the road map, including alternative routes, even if they don't want to take the wheel' (Kravitz and Melnikow, 2001).

Information provides individuals with a choice of whether or not they wish to participate in the decision-making process. However, it should not be assumed that non-participation in decision-making necessarily implies a wish for less information (Luker et al, 1995).

Information and hope
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).

For example, anecdotal evidence appears to demonstrate that giving difficult information too abruptly will disorganise the patient psychologically and impair coping mechanisms, even provoking denial (Maguire and Faulkner, 1988). It might therefore be said that the key to breaking bad news is to give it such a way as to allow a more gentle and gradual transition for the patient from a perception of the self as being well, to a realisation that he or she has a life-threatening disease (Deeny and McGuigan, 1999). In this way hope should not be annihilated.

Case for increasing patient information-giving
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.

Fallowfield et al (1994) assessed the general and specific information preferences of 42 male and 59 female patients attending an oncology outpatient department in London. They found that almost all patients (95%) wanted as much information as possible, good or bad. Although specific information needs vary between patients, these results show that, in general, cancer patients wish to be well informed about their diagnosis, outlook, therapeutic options and side-effects (Fallowfield et al, 1994).

With so much published data that demonstrates unequivocally that cancer patients want and need information about their condition, it is no longer acceptable for clinicians to send patients away without information (Mossman et al, 1999). However, there is extensive literature to suggest that information-giving is an area in which there are serious deficits (Wilkinson, 1991; Audit Commission, 1993; Mills and Sullivan, 1999). Even today, research indicates that nurses' communication skills have shown little improvement over the past 20 years (Mills and Sullivan, 1999; Thomas et al, 1999; Wilkinson, 1999). The exact reasons why patients' needs may not be met are not fully understood (Mills and Sullivan, 1999) but Harris (1997) and van der Molen (1999) go some way to highlight the barriers to effective communication. Fallowfield and Jenkins (1999) state: 'Doctors and nurses usually talk and listen to patients more often than they perform any other single medical or nursing procedure.' It is therefore a great disappointment that the area of communication in all aspects of health care is still seen as less than ideal.

Deeny and McGuigan (1999) see communication problems as usually being the result of a lack of awareness and knowledge on the part of nursing and medical staff, poor continuity of care and the generally less than conducive nature of the organisation of the nursing. Indeed, it can be argued that nurses are aware of the need for better communication skills between health-care professionals and patients, but inevitably the necessary time for this is extremely limited. Although patients may indicate that they want as much information as possible about all aspects of care and treatment, their length of stay in hospital is often very short, making it difficult for nurses to ensure they receive all relevant information (Luker et al, 1995).

Identifying needs of individual cancer patients
It is necessary to determine the particular information needs of any one patient in order to address these efficiently and effectively.

Luker et al (1995) undertook a study to establish the priority information needs of a sample of women newly diagnosed with breast cancer. To examine the preferences for information, nine information needs were presented to women, using an interview technique, covering physical, psychological and social aspects of care and treatment. The women were asked to rank which information needs had the greater importance. The findings revealed, not unexpectedly, that it was the physical aspects of care and treatment that were of greatest concern. In terms of information needs, the likelihood of cure, the spread of disease and treatment options were given priority in terms of ranking. Although not explicitly stated in the study, this gives some indication that these patients were keen to know something of the pathological status of their tumour.

From this study Luker et al (1995) suggested that profiles of information needs may be a useful guide in practice, especially where time may be a scarce resource, assisting nurses to prioritise the teaching and information needs of each patient and present the information in a way that it is perceived by the patient to be relevant and tailored to his or her individual needs. Profiling may also help distinguish between those who want and those who do not want to know the detail behind the reality of their condition. It is salutary to note that in a follow-up study of the same group of women, at a mean of 21 months from diagnosis, Luker et al (1996) found that 66% stated that their information needs were not being met. This emphasises that information-giving must be an ongoing process, starting at diagnosis and continuing long after treatment is over (Mills and Sullivan, 1999).

Patients who do not want information
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).

Leydon et al (2000a) undertook a study to explore why patients do not want information about their condition beyond that volunteered by their physicians. They found that, while all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. This was seen to be due to three attitudes held by the participants, termed faith, hope and charity. First, it was felt that faith in their doctor's medical expertise precluded the need for patients to seek further information themselves; second, hope was seen as essential for patients to carry on with life as normal and could be maintained through silence and avoiding information. Third, charity to fellow patients was expressed in the recognition that scarce resources - including information and explanations - had to be shared and that therefore limited information was acceptable and inevitable.

One patient in Leydon et al's (2000a) study, a 60-year-old man with liver cancer, said: 'The thing with these leaflets ... when you read them you get information, but I think they give you a bit too much about what it's going to do and where it can go. I know I have it, and that's all I want to know.'

A study by The et al (2000), exploring the factors that result in 'false optimism about recovery' observed in patients given a terminal diagnosis of small-cell lung cancer, suggests that it is in patients' best interests to know in full about the likely time and mode of their death. However, according to O'Rourke (2000), patients and their families who do receive such information rarely regret their period of optimism. It is hope and the triumph of optimism over reality that makes life bearable. O'Rourke (2000) believes that there is now an urgent need to understand the reasons why patients may choose not to seek or to resist further information about their cancer and Leydon et al (2000b) suggest that a desire for no information at certain points in their illness trajectory can reflect a positive and rational choice. Such a choice can be indicative of individual autonomy and is one of many possible decisions to be made in the face of adversity.

For those who provide care to cancer patients, the challenge is finding a way of providing information that is appropriate for patients who may benefit from knowing something about their illness and its treatment at some stage but may not wish to know everything about their illness at every stage (Leydon et al, 2000a).

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.'

Effective communication will ultimately depend on the unique assessment skills of nurses in order to determine appropriately and sensitively the information needs of each unique patient.

Useful contacts
Cancerlink, 11-21 Northdown Street, London N1 9BN. Tel: 020-7833 2818.

CancerBACUP, 3 Bath Place, Rivington Street, London EC2A 3JR. Tel: 020-7696 9003.

CancerBACUP Scotland, 30 Bell Street, Glasgow G1 1LG. Tel: 0141-553 1553.

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