Obstructions for Care -- Part 3

4. Discussion and conclusion

4.1. Discussion

4.1.1. Validity and transferability

This is a case study approaching experiences and associated attitudes of CFS patients who belong to a patient organization. Material from the interview and the questionnaire confirmed that all participants had undergone thoroughly diagnostic testing at the hospital. We conclude that our sample covers a sufficient content validity regarding the CFS diagnosis. We were interested in the stories from people with a special awareness for quality care, realizing that CFS patients who are members of an organization, may differ from other CFS patients. On one hand, they may represent the most serious and disabling stages of the disorder, on the other hand, they may be more active and articulate than patients who do not organize. Membership might represent a bias of bad health care experiences. We therefore took this as a challenge to look across the material for variations and nuances, and to acknowledge substantial wishes for improvement of health services, regardless of their quantity or distribution. We do not claim transferability of these experiences to all CFS patients, yet consider the phenomena described as relevant for any medical encounter where the patient suffers from a medically unexplained disorder. The better part of reality would probably be more precisely described by a different sample The moderator's initial dedication for improvement of health services for this group of patients may have facilitated trust and alliances with the participants by confirming an ethical commitment to their expressed needs.

The number of participants present in the group interview (more than we had expected!) limited the amount of information from each of them, and some remarked afterwards that it was too brief. However, the atmosphere was relaxed, and the associative creativity during the interview contributed to a rich and diverse material. Data collection was limited to one group meeting, which however presented a broad diversity of experiences. Our methodological approach was not aiming for saturation, since the study did not hold an ambition to describe all possible experiences. Concentrating on stories from members of the organization, we were fully aware that other groups may have yielded different data. The information obtained through the questionnaire and the follow-up meeting validated and complemented the main findings.

4.1.2. What is known from before - what does our study add?

Patients with persistent, subjective symptoms without objective findings, such as CFS and other MUPS, hold a low ranking in the medical hierarchy. While conditions like myocardial infarction, leukaemia and brain tumour are ranked highest by doctors, fibromyalgia and anxiety neurosis are among the lowest [20]. Such attitudes are reflected in the comment from the participant in our study, who said that she felt she was of no interest for her doctor. Edwards et al. have described patients' feeling of being let down and disbelieved when seeking help [21].

Our study also confirms previous studies about experiences of stigmatization in patients with CFS encountering health care [7,14,22]. Some doctors characterizes CFS patients by lacking stoicism, and use pejoratively stereotypes to describe certain personality traits supposed to cover the whole group of patients [10,12,23]. Patients perceive such attitudes as questioning their morality and credibility, asking whether they are really sick [12,22,24].

Yet, although acknowledgement of symptoms as well as person is necessary for quality care, it is not sufficient. The participants in our study challenge Deale and Wessely's understanding that medical care is evaluated less on the ability of doctors to treat CFS, and more on their interpersonal and informational skills [14]. Understanding the CFS condition itself is urgently called for by the participants in our study, who want their doctors to be better informed and less ignorant in order to provide adequate counseling. Within this field of experienced uncertainty, a stronger commitment to evidence based practice might improve the doctors capacity to give his or her patients adequate information about CFS [22,25,24].

Our participants emphasize the specific importance of reaching a diagnosis for coping [7] by sharing their experiences from the frustration appearing when time goes by and no conclusion regarding diagnosis or treatment has been achieved. Previous studies have emphasized patients' view on diagnosis [11,26,27], not only as legitimation of the condition, but also as a path to reconciliation and coping [7,28]. The NICE Guidelines recommend diagnosis to be reached within 4 months for adult patients [4]. Considering a CFS diagnosis as a provisional tool for understanding and reconciliation may support recovery for the patient, while attributing the diagnosis a warning about any physical activity would probably function counterproductively. The way the diagnosis is presented, is therefore crucial for quality care.

Our study adds to the knowledge base on doctors' uncertainty - when you do not know what to suggest, you therefore have nothing to offer [11]. Analysis revealed stories about doctors who lack knowledge but yet refuse being provided with information, and doctors who propose treatment which makes the patient feel worse. While physical activity is beneficial for a lot of health problems, the core symptom of CFS is actually postexertion fatigue and malaise [1]. Movement therapy based on carefully limited workload has shown promising results for CFS patients [29], and graded exercise therapy has been useful for some of these patients [1]. However, patients with this condition should not be advised to undertake vigorous exercise [4].

Our participants demonstrated some of the problems which can be experienced by patients when doctors do not know what to do. They demonstrate specific areas where quality of care can be improved by implementing evidence and guidelines among healthcare professionals. Special efforts would yet be needed to develop adherence to guidelines within a field where GPs seem to have strong opinions about the 'real' nature of the disorder [30,10,31].

4.1.3. Conflicting explanatory models on MUPS

Our findings indicate that quality care for CFS patients suffer from more than indifference and ignorance. The tensions arising from conflicting illness understanding seem to create serious obstacles in the interaction between doctors and patients with CFS. Conflicts may arise when the two parts have different beliefs about the nature and cause of the illness. According to Kleinman, explanatory models are 'the notions about an episode of sickness and its treatment' employed by all the persons involved in the clinical process, including beliefs about etiology, time and mode of onset of symptoms, pathophysiology, course of sickness, and treatment [6]. Some of the participants in our study felt that they were unduly labelled as depressed, perceiving this as a patronizing provocation, never having felt psychological problems, and being convinced of the bodily character of their symptoms.

We did not interview the doctors met by our participants, and hence do not know what actually took place. Nevertheless, the reported events correspond well with the sceptical viewpoints towards the diagnosis presented by doctors in other studies [10,12,31]. Previous research has described similar uncreative negotiations as 'the shame-blame-game', where all interaction concentrates on body-mind arguments about whether CFS is 'really' a psychological or a physical condition [24].

Burton turns down the idea that most MUPS are the result of a single process of somatization or mental distress. He concludes that in these conditions, there is good evidence for the impact of the interaction between physiology, personality, life experiences, health cognitions, and healthcare experiences [9]. Recent biopsychosocial models focusing feedback systems and homeostasis, such as The Cognitive Activation Theory of Stress (CATS) [32], transcend the dichotomous perseverance on classifying CFS as either body or mind [10]. Sustained activation has been suggested as the underlying mechanism for processes underlying subjective health complaints [33]. Within the framework of these models, even measurable bodily processes are accessible for cognitive input.

4.2. Conclusion

Our findings support a hypothesis that the current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management. GPs need more knowledge and a broader understanding of the condition, making it possible to individualize the available strategies for diagnosis and management according to the patient's capacity and responses.

4.3. Practice implications

Being met with dignity and respect is especially important for people with chronic illness. However, doctors' feelings of helplessness and controversies about explanatory models may transform into behavior perceived as degrading by the patient [8,34], thereby obstructing quality care. The body-mind controversies arising from the biomedical model seems to be an especially important barrier for finding common ground between patients with CFS and their doctors. Development of comprehensive explanatory models which transcend the dichotomous explanatory models [32] can help doctors and patients to expand their understanding of the mechanisms underlying the complex symptomatology of CFS. Elaborating a diversity of strategies involved in the diagnosis and treatment plans of primary care problems that are uncertain and complex could also contribute to better care of CFS patients [35].

However, many doctors are not yet even prepared to acknowledge the CFS entity itself, but regards it as a dubious category [31]. Doctors' reluctancy towards giving this diagnosis is known from before [11,36], and confidence with making a diagnosis and management is low [37]. According to the British Chief Medical Officer Kenneth Calman (2002), chronic fatigue syndrome should be recognized as a real entity, which is distressing, debilitating, and affects a very large number of people [38].

To the patients the diagnosis may function as a tool that enables them to tell other people what is wrong with them [15,11]. Receiving a diagnosis was mentioned by our participants as a very important aspect, since the uncertainty during a period of increasingly debilitating symptoms may add strongly to the burden of suffering for the patient. Our findings indicate that GPs need to know more about why and how the diagnosis of CFS should be set. According to clinical guidelines, the CFS diagnosis can be concluded by the typical history of excessive, characteristic and lasting fatigue, when adequate differential diagnoses have been thoroughly excluded [4]. Often, a specialist referral is necessary. When diagnosis is clear, there is no apparent medical reason to withhold it from the patient. On the contrary, a diagnosis may constitute the starting point of a process of recovery and reconsiliation [39].

Intervention studies indicate that cognitive behavioral therapy and graded exercise therapy may be helpful for some CFS patients [5,40]. We still do not know how these modalities can provide the most benefit, and for whom. GPs need to learn how to offer evidence based treatment modalities such as cognitive behavioral therapy to patients with CFS without confining the disorder within the concepts of somatization or other kind mental diseases [9,41]. Our informants complained about the exercise recommendations which had seemed to make their symptoms worse. Since CFS per definition is a condition where postexertional malaise is one of the typical symptoms, undifferentiated physical exercise appears to be a questionable recommendation. However, the NICE Guidelines present a feasable program for individualized and tailored physical activity which could safely be offered to CFS patients under monitoring of effects and side effects [4].

The NICE guidelines emphasize the need of patient participation and shared decision-making [4]. CFS patients' reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients' understanding of symptoms and the complex nature of the disease.

* * *

A Norwegian study which proves that the experiences I’ve complained about, with ignorant doctors unwilling to refer me to a specialist, preferring to give me the quick/easy (but erroneous) diagnosis of depression instead of seeking out the real cause of the problem, are not confined to the US. Like one of my doctors who never even asked me to take off my clothes so he could do a physical exam, because he thought my problem was depression and therefore nothing would be found on physical exam, some of the Norwegian patients made the same complaint of never getting a complete physical.

As Dr. Bell has stated, the abnormalities are subtle, but they are there. "On superficial examination, there are usually no abnormalities. However, on careful examination, ... patients have minor abnormalities. ... In general, the cranial nerves, mental status, and cognitive function are normal on routine exam. Detailed cognitive testing, however, may reveal abnormalities." The problem is, most doctors do only a superficial examination, and mental status testing is limited to only observing if the patient gives appropriate responses to simple questions, such as knowing their own name or what year it is. Never mind that I had psychiatrist-documented "severe cognitive and memory dysfunction", I wasn’t totally disoriented/demented, and therefore the MD wrote down that nothing at all was wrong with my mental status! (He later admitted that I would have had to say "butterscotch" in response to "good afternoon" for him to write down that there were any mental status abnormalities.)

Every doctor should have to read this article to see where they’re going wrong. Perhaps the CFS community would trust doctors more, if doctors proved themselves deserving of that trust.

"Previous research has described similar uncreative negotiations as 'the shame-blame-game', where all interaction concentrates on body-mind arguments about whether CFS is 'really' a psychological or a physical condition [24]" Not only are such arguments "uncreative" but they’re not helpful. They don’t do a thing to alleviate the patient’s suffering and, in fact, make the patient feel worse about it.

And those of us whorefuse to accept shame or blame for our condition are quickly written off as "uncooperative patients" because we won’t docilely accept the inappropriate treatment and medications, instead insisting that the doctor search for the biological cause of our biological ailment. My problems started with a 105 fever; I was not going to be browbeaten into accepting that there was nothing physically wrong, that I simply didn’t like being married – the doctor glossed over the reports that I’d had the symptoms for months before the wedding, when there was no husband to answer to, because that little "inconvenient truth" contradicted what he wanted to diagnose.

Another patient in this study complains "I said: 'I can't do anything at all.' Well, then of course I was depressed because I didn't manage anything, or was in lack of initiative. But that was not the problem. I wanted to do all sorts of things, but as soon as I tried, I became exhausted and had to go to bed again.'" Again, exactly the experience that I had. Whenever I said "I can’t", I was cajoled "you’ll be surprised what you can do if you try", and the subject was changed before I could point out that my statement that I "can’t" do certain things was based on empirical evidence, repeatedly trying and failing, and not by fear of failure. It wasn’t that I was afraid to apply for jobs and be rejected, but that in every interview that I successfully landed, the symptoms they saw persuaded the employers not to hire me. The paralytic muscle weakness in my hands made it impossible for me to exert enough pressure on the heavy-duty staple gun to secure the cover over the swamp cooler when winter approached; after three days of failed attempts I gave up in frustration and flung the stapler across the room. That definitely was not "I lack the initiative to get off the couch to winterize my home", that was a neurological problem that prevented doing what needed to be done, no matter how hard I tried to do it, and absolute frustration that I couldn’t do something so simple. (Eventually, I recalled what my friend with post-polio was told about overusing her muscles leading to such muscle failure, and when I stopped using my hands so much – watching more TV rather than holding a book upright or typing or doing needlework – I was again able to use my hands for chores requiring dexterity and hand strength. To this day, I’m limited in how many hours I can use my hands before I’m forced to stop ... and that limit is notenough hours to make me employable.)

Devin Starlanyl, doctor and patient, observes "Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run." There’s no readily-available test for whatever virus I have (some researcher somewhere, for some huge sum of money, might be willing to try to identify it, but my medical insurance won’t pay for that); we know I don’t have the half-dozen most popular viruses to test for. However, the C-Reactive Protein test, which proves there’s some form of infection/inflammation, was "off the charts", 10x what it should have been. So, even though some doctors will point to the virus-specific tests to claim "there’s nothing wrong", another doctor can look at the C-Reactive Protein test to say "there’s something very wrong, we just don’t know exactly what."