Rehabilitation is focussed on disability, so why start with pathology (disease)? Simple – disease dominates healthcare, and is the main concern of most patients. There are other reasons, equally cogent. The reasons will be discussed here, before moving on.
In principle, though not necessarily in practice, if a specific disease can be identified, then a specific cure maybe possible, and thus all problems may be removed and rehabilitation will not be necessary. The reality is that many diseases cannot be cured; sometimes the cure succeeds but some irreversible damage has already occurred; sometimes the cure itself cause damage. Nonetheless, it is important to be sure the diagnosis is correct and, more importantly, it is important for the patient to accept that the diagnosis is correct. No patient will engage fully in rehabilitation if she or he believes that a full cure is actually still possible.
Second, the underlying pathology will often suggest what impairments and disabilities are likely to be present and should be looked for. Conversely, knowing the diagnosis can also suggest what problems are unlikely and therefore need less attention. In addition, the specific diagnosis may also be associated with other diseases that should, therefore, be considered in case they have not yet been diagnosed.
Fourth, disease will determine both the prognostic field (i.e. likely to recover, progress, fluctuate, be static) and, sometimes, the items that will enable a more-or-less accurate prognosis to be given.
The last reason is often overlooked. Research has shown that around 25% of all patients seen in hospital out-patient clinics do not have any disease to account for their presenting symptoms, signs, or disability. For inpatients, it may be around 5%. In general practice the figure is nearer 50%. These patients are ill – their health is not good – but they do not have a disease that explains their illness. (They may have a disease, but it is not the cause.)
These patients have what is termed a functional disorder. They specifically need rehabilitation. The rehabilitation needed will differ from that needed if a disease were present, though the best way to undertake rehabilitation is not yet well-established. Nevertheless it is vital to be as certain about the diagnosis of a functional disorder as one is on any other diagnosis. More will be written about functional disorders on this site in due course.
Returning to rehabilitation, the analytic questions are showing the graphic.
One very important point, which is only implicit in the graphic, is that the name or label given to the disease is extremely powerful. We are all used to the idea that the word, cancer, has very emotionally powerful connotations often quite out of proportion to the actual significance for the individual. In rehabilitation (and in many other circumstances) the disease name can affect:
- the symptoms noticed or reported, with every natural change in bodily feeling being interpreted as a sign of doom;
- some activities which are limited, because it is feared that the activity poses a risk
- social roles, both positively and negatively:
- taking on a very driven role raising money and support for the disease or doing many things ‘before I die’
- withdrawal from most social networks, and being sick all the time, afraid of getting worse and trying to avoid decline or death
- social context, in that others may treat the person differently because of the label (consider HIV as a label in 1988)
- personal context, through developing or having unfounded expectations and beliefs which alter many aspects of a person’s life.
As I have stressed, in rehabilitation it is vital to establish that the diagnosis is correct both in general and, in some diseases, in its particulars (e.g. prognostic grade of a tumour). Diagnoses are not infrequently incorrect. It is even more important, given the range of consequences that can arise, to establish a person’s understanding of the disease and all its consequences. If they are inaccurate, they should be corrected.
It is probable that some of the benefits arising from education as part of all rehabilitation arises from establishing a fair, evidence-based understanding of the disease. It is vital for the rehabilitation team to include someone, usually a doctor, who can educate the patient, the family, and if need be, team members about the disease and who can answer questions as and when they arise.