Empowering patients to determine their own health goals

In this issue of the European Journal of General Practice, we find papers on two subjects: respiratory tract diseases and multi-morbidity. Both belong to the very core of our job as family doctors.

Multi-morbidity is undoubtedly the biggest challenge of the coming decades. Twenty to 40% of patients aged over 65 have more than five chronic diseases and, in patients over 75, multi-morbidity is the rule rather than the exception (1). A recent large epidemiological study on the global burden of disease shows that increasing numbers of people are suffering from several disorders that cause disability but not mortality as they grow older (2). Most of these people live at home and will count on family medicine for their day-to-day care. How one provides high quality care to this complex group of patients, is currently the subject of debate on many large international fora (3–9).

One thing is clear: the classical problem and disease-oriented medical model does not fit anymore. This model was ideally suited to understand and manage acute and curable illnesses, and was very important for clinical research. It enabled us to build evidence for effective management of single diseases and develop evidence based guidelines for clinical practice. However, when confronted with a patient with multiple diseases, the value of such guidelines is reduced for several reasons. A recent review of five NICE clinical guidelines (type-2 diabetes mellitus, secondary prevention for people with myocardial infarction, osteoarthritis, chronic obstructive pulmonary disease and depression) showed that they accounted poorly for co-morbidity (10,11). A 79-year old woman with osteoporosis, osteoarthritis, type 2 diabetes mellitus, hypertension and chronic obstructive pulmonary disease—not an uncommon combination—will have to take 12 different medications daily and follow 14 non-pharmacological recommendations according to the cumulative guidelines for each separate disease (12). This is practically a full-time job. Guidelines can also be conflicting; e.g. corticosteroids are recommended in case of an exacerbation of COPD, but will disturb diabetes control. Moreover, the evidence on management of chronic diseases is generally based on clinical trials with strict inclusion criteria for which patients with other diseases are often excluded. This is illustrated by the study by Fortin et al., (13) who reviewed the medical records of 980 family practice patients and found that almost all patient eligible for an RCT on hypertension had co-morbid conditions and would be excluded. Finally, a disease or problem oriented approach focuses mainly on biomedical targets. Management of diabetes, for example, focuses on the levels of HbA1c, and the management of COPD focuses on an optimal FEV1. However, what if the patient simply wants enough breath to be able to walk to the supermarket in the morning? Maybe she does not care so much about her 10% risk of dying from a cardiovascular disease within 10 years if it means that today she has to take several pills that may cause significant side effects?

The paper in this issue of the European Journal of General Practice by Vos et al. (pp. 117–122) illustrates some of these points. It confirms the high prevalence of multi-morbidity in old age, and it shows that self-rated health is lower when people have severe headache or back pain among their problems. Headache and low back pain are understandably very annoying to the patient, but from a purely biomedical point of view these complaints may be looked at as rather trivial—because they are not life threatening—and, therefore, receive less attention in a disease-focused care plan. Research on multi-morbidity will often not even take into account these more trivial disorders and only focus on the well established chronic diseases. However, from a patient-centred point of view any disorder that affects the patient's functional status and quality of life is important.

In the clinical management of patients with multi-morbidity, an orientation of care towards the individual goals of the patient instead of towards biomedical outcomes is proposed as a far more realistic and human approach (7,14). In this approach, the purpose of care is not eradication of disease or prevention of death, but assistance in the achievement of the highest possible level of health as defined by the individual patient (14). For a patient with a combination of severe back pain and hypertension (Vos et al. pp. 117–122), having less back pain could well represent a higher level of health than having a lower blood pressure.

Patient empowerment is a prerequisite to implement goal oriented care. Only informed and confident patients will readily elicit their personal goals. These goals are determined by the patient together with the care provider using information each brings to the interaction, and taking into account the personal values, needs and context of the patient, adding ‘contextual evidence’ to ‘medical evidence’ (14,15) . The final decision regarding prioritizing of health related goals and the amount of effort to be expended achieving them is ultimately up to the patient (14). This underlines the importance of the addition of patient empowerment as a twelfth essential characteristic of general practice/family medicine, described in the background paper in this issue. As E. Mola writes in this issue of the European Journal of General Practice (pp. 128–131): ‘the patient with one or more chronic conditions is the real master of his own health and well-being. Family medicine is in a strategic position to help patients increase their ability and self-confidence in managing chronic conditions.’ Thus, to set their individual health related goals.