Reluctant to refer
Nurses in Ouallam and Tahoua refer few patients: only about 0.5% of their health centre clients. Only 2/46 nurses (4%) seemed to understand the rationale for structuring the system in two levels. All acknowledged a health centre-hospital gradient in technical resources, but few saw real differences in clinical competence between health centres and hospitals. Four nurses (9%) said that they only considered a referral "when surgery becomes inevitable". Others would only refer a patient after having "proof that no drug at their disposal would avoid the referral of the patient". About 20% explicitly defined referral as "what is done in case of shortage": lack of streptomycin, slides for sputum exams, or needles for a lumbar punction. Making ampicilline, gentamycin, dopamine, furosemide, and a vacuum extractor available would "reduce referrals". They had no reservations about their own competence and did not consider the possibility that the Ministry of Health may have had reasons for not making these drugs available at their level.
One could expect nurses to be more inclined to refer when the patient is unlikely to refuse, particularly in the case of patent emergencies . Most health centre staff (84%) spontaneously differentiated between emergency evacuations and referrals of 'cold cases'. In the case of patent emergencies, need and user-demand coincide. Nurses seemed to have no problems to propose a referral on such occasions. They seemed much more reluctant in cold cases where transport, money and traditional beliefs were more of an obstacle. All could give examples of emergency referrals from their day to day experience, but not of cold cases. Examples of cold referrals included two patients with lipomas, four with a hernia or a hydrocele, two with prostate problems and two with a prolapsed uterus. But there was also a patient with severe ocular trauma and one who had not improved two days after an accident – i.e. cases one would rather classify as non-recognised emergencies. The average time since the last cold referral was 5 months (ranging from 3 days to 3 years). Even allowing for recall problems it is clear that cold referrals are rare events.
There is unambiguous evidence that nurses often fail to apply referral guidelines – for lack of competence or other reasons. For example, a patient with a 10% haematocrit after a postpartum haemorrhage may be treated at the health centre with oral iron and folic acid.
More than 80% of the nurses argued that compliance with the integrated management of child's disease programme guidelines would increase the number of referrals to an unacceptable level. "The decision trees do not consider the specificity of rural health centres. Rural health centres cannot refer in the same way as in town. Certain schemes tell us to refer in cases where changing drugs would be enough to cure the patient". "90% of all children show signs of malnutrition; we cannot refer them all!" Most nurses say they often disregard referral instructions, some say that they 'never' follow them: "If we were to follow the instructions, we would be referring 50% of our patients", and "the hospital would be overwhelmed".
The referral instructions were clearly seen as demeaning: "The decision trees disable people from thinking properly", and "If we were to do what (the management) says, we would become a mere entry point for hospital treatment". Referring a patient is apparently seen as a threat to the nurses prestige: "If we'd respect the instructions, we'd lose all credibility in the eyes of the patients"; "to refer too many patients would mean that we are not competent and so we will lose prestige in the eyes of the population." These statements were clearly emotionally charged. Suggestions that patients may at times be kept in the HC rather than referred out of fear of losing face provoked reactions ranging from bewilderment to violent denial: referring was a technical matter and prestige had nothing to do with it.
It should then be no surprise that nurses prefer to keep their patients 'under observation' in the health centre as long as possible, often beyond what is reasonable: in one instance a semi-comatose patient with meningitis, convulsions and high fever, lay dying in the health centre with no other treatment than the 5 g chloramphenicol given three days before. Regulations allow them to keep their patients for a maximum of 24 hours, but are often not complied with. In Ouallam, 119 out of 125 such patients (95%) stayed for more than 24 hours. Only 5 were subsequently referred as 'cold cases' and not a single one as an emergency, but 5 (4%), a grossly underreported figure, died in the health centre. Keeping patients 'under observation', 'hospitalising' them as it was labelled by the nurses, generated a lot of prestige. The cost in terms of missed opportunities was downplayed and rationalised by saying that "there is nothing of what the hospital does that I wouldn't be able to do myself".
Unwilling to be referred
Low expectations and fear
The focus groups showed that the population understood that it was not possible to have a hospital in every village, that health centres would not offer the same possibilities and that occasional referrals would be inevitable, e.g. for caesarean sections. On the other hand, participants made few distinctions between health centre nurses and district hospital doctors. They used the same word ("Lotokora") for both, and saw no competence-gradient, only one in resources: "Health centre staff is competent, but they do not have all the necessary drugs". The consequence is that they felt "the nurse at the health centre should always try something before referring".
The patient interviews give a slightly different view. Thirty-eight percent saw the hospital, the "older brother", as more competent given its superior resources, but also because of the superior skills of the doctors. For 62% however, it was merely a question of means, not of skills. They also defined the referral system in terms of a system failure, specifically in the context of absence of the staff or shortages of drugs. Referral was seen as a logical response to local difficulties. This notion seems to be reinforced by the attitude of the nurses, with their explanation in terms of "I cannot take care of you here because I do not have the proper drugs".
For those in the focus groups or in the patient interviews who acknowledged differences in skills, these were not perceived in the sense of a hierarchy or a pyramid, but as a particular instance of the differences every person is born with. There was a clear analogy with local traditional healers, whose different individual competencies are also readily recognised. When traditional healers fail, the patient simply tries someone else, with different skills, but without a referral to ensure continuity of care. It is then not surprising that these rural populations perceived referral in the formal system as a proof of failure. However, and contrary to the perception of the nurses, failure had no connotation of blame. In focus groups and interviews alike informants accepted that "all human beings have limits". Very few mentioned that a referral may also indicate ill-will or incompetence on behalf of the nurse.
This considerable respect for the nurses' opinion has to be understood in the context of the hierarchical relation between the health staff and the patients. The nurse, who enjoys a high social status in the rural community, is respected for his "authority in the matter": it is someone whom "one has to obey". Referrals are emotionally highly charged events. All focus groups repeatedly described referrals as a frightening experience for the patients: "a referral means death!", but likewise "refusing a referral will bring death". Patients were also said to fear the unknown ("they receive very little information") and to be afraid of being "insulted" by the hospital staff because "they do not know how to behave and they do not understand procedures".
The interviews with the referred patients confirm this impression of referral as a frightening event. Sixty out of 231 interviewed patients (26%) experienced the referral with equanimity, "relying on God", and 85 (37%) said they were rather relieved when the nurse proposed a referral. But 72 (31%) were already worried before they came to the health centre. They were expecting to be referred because they had understood the seriousness of their illness. Fifty-one patients (22%) clearly indicated that the referral had frightened them: "If you are referred, it means that it is serious". All in all, 48% of referred patients expressed rather strong negative emotions.
All parties were much aware of the obstacles facing patients who have to go to the hospital, and in the first place the hurdle of finding transport and of paying for it. All the focus groups – as well as the interviewed nurses and patients – insisted on the costs: to get to the hospital, but also for bribes and for the return journey. They (correctly) considered that these items were more of an obstacle than the actual cost for treatment at the hospital.
Referral does not only mean transport costs for the patient. Relatives have to go with the patient and need accommodation and food. A referral is a social event in a rural community. The patient's family and friends are involved in the referral decision and its management. All focus groups indicated that the decision to evacuate a patient is taken by several persons: the parents, the husband, TBAs, village health workers, traditional healers or the village chief may have their say. Especially in cases of emergency evacuations, the patient is hardly drawn in the discussion, partly because he is too ill, partly because it is the others who will have to face the expense and the effort of getting him to the hospital, and of visiting and supporting him. "Not visiting a sick person can be interpreted as if you would be happy about his death". This was a major financial and social investment: transport, housing, a (small) donation to support the treatment of the patient and the opportunity cost of leaving their fields during the wet season. To keep patients 'under observation' at the health centre "makes visiting of the patient easier", and is cheaper in all other ways.
Focus groups clearly expressed the trade-off that is made between expected costs and expected benefits and risks. Focus groups considered referrals of elderly people or children, considered at high risk of dying, were less acceptable than those of young adults. It was important to be buried in one's own village, and transport of the deceased was particularly expensive. The nurses (56%) are aware of the age preferences of the patient's environment (although 60% claim they themselves are neutral and have "no age preferences" – or, if they have, admit to a negative bias concerning the elderly (20%) and a positive in favour of the very young (16%)).
Ensuring compliance and convincing patients
For all these obstacles, the focus groups all said they always "accept" referrals by the nurses. Only factors beyond their control, such as lack of money, would make them decide otherwise. A sizeable minority of the nurses (8/46) also said patients "never refuse" a referral. Most specified that emergency referrals were not normally refused, although some actually gave concrete examples of the opposite.
Half of the nurses found it "really difficult" to convince people to present to the hospital if there was no emergency, and told of long delays, at times with disastrous consequences. The other half said it was "easy" to convince people to accept a cold referral, and easier still when the patient got worse: there is some doubt as to whether they were really talking about cold cases.
Nurses explained refusals to comply – clearly expressed refusals, or patients who agree but simply do not go – in different ways. For 15 out of 46 it was a matter of practical obstacles: e.g. the absence of a minder in town, someone who lives near the hospital and can receive and guide the patient. For nearly 50% it was a question of "ignorance" and "irrational traditional beliefs". A few mentioned the role of season or that of the family.
One third of the nurses (15/46) said that they "force the patient" or that they "give the referral letter and the rest is their problem". The majority (67%) "try to convince" reluctant patients, directly or through their family. In doing so, some health workers said they try to "scare the patient" into acceptance or highlight the consequences of waiting ("you should not wait until it complicates further, it will cost you much more to treat at that moment"); about as many said they do the opposite, and try to reassure the patient by saying that "the hospital does not kill". Not one nurse talked about understanding the patient's predicament.
Nurses showed little awareness of the strength of the emotions of referred patients and their relatives. Only 5 of the 46 interviewed nurses spontaneously alluded to these fears, in general terms such as: "I tried to calm the patient down". Not one of the nurses was able to describe the emotional and social aspects of the referral process. They seemed ill-prepared, unwilling or unaware of the need to deal with the anxiety generated by referral. Twenty-four percent even reported that they would deliberately scare the patient in order to convince him or her to accept the referral. Nurses were candid about their own callousness: they saw no problem in telling a patient that "if you refuse the referral, that's your own business" or, in case of refusal to "just ask them to write me a note which discharges me of my responsibility".
If one extrapolates from what is known about doctor-patient interactions in referral situations in industrialised countries, an important aspect in dealing with the associated anxiety is information about the reasons for referral, about the risks, and about what will happen concretely in the institution where the patient is sent [54–56].
According to the focus groups, nurses just tell patients that they need to be referred, without further information. Many expected no more. Less than half the groups expected some information on the reasons for referral, on the circumstances or practicalities, or on the likely procedures at the district hospital, but not directly from the nurse: "It is the (referral) letter that talks", "He gives the paper, and that contains everything". Focus groups do not, however, characterise communication as bad or insufficient. The health worker speaks with legitimate authority.
At the individual level, referred patients qualify this picture. Fifty-one percent of referred patients interviewed (118/231) did not know why they were referred, but said that "the nurses told me simply to present to the hospital, so I obeyed". Of the 49% who said they had been informed to some extent 65 had received some specific information about their illness, 12 had asked for a referral themselves, and 72 had been aware they were in a bad shape and were not surprised by the referral – it is unclear whether they did get additional information on the reasons for referral. This picture emerging from the patient interviews confirms the focus groups' indications on inadequate information.
Interviews with nurses also confirm the impression given by the focus groups. Most nurses would "simply tell the patient that he cannot be treated locally", or, at times, talk about the need for a supplementary laboratory exam. Only 5 of the 46 interviewed nurses spontaneously mentioned that they would also talk about the risks of refusing the referral with 'cold cases'. None mentioned other topics covered in the conversation with the patient, a strong indication that dialogue is usually minimal. Only when prompted nurses said that they "explained the reasons for referral" to the patient or the family and informed them about the financial aspects and the procedures in the hospital. Hardly anything supported this statement when they were asked to give examples. It may be true that nurses at times do provide some information, but it is most probably ad hoc and unsystematic. Even when prompted, only 5 of the 46 nurses said they reassured patients during an emergency evacuation and 10 in case of a cold referral (this may seem contradictory, but in an emergency patients and their family are usually less surprised about the referral proposal and require less reassurance in order to obtain compliance). Such lack of responsiveness to the patient's legitimate expectations of information is not an isolated phenomenon and has been described elsewhere in Africa, both in rural and urban environments .