As medical knowledge expands exponentially it becomes increasingly apparent how little we actually know about the miracle that is the human body. In medical school we are taught by a formula - Diagnosis + evidence based management= patient cured.
Just as simple and straight-forward as that!
Alas, this formula is inherently flawed as we very rarely cure disease, more often only managing to halt progression through continuing treatment.
How different if were car mechanics working on ‘patients’ that do not need to have mechanical literacy for a cure to work, nor are they influenced by belief systems and past experience. Yet while cars are exceedingly simple compared to the human body, the major factor affecting their “wellness” is the same one that makes the simplistic medical formula flawed - the human factor, a term popularised decades ago by the title of one of Graham Greene’s best known novels, yet too often ignored..
In 2003 the WHO estimated that only 50 per cent of chronic disease patients in the developed world followed the treatment recommendations of health care professionals. For example, studies of asthma medication regimens reported non-adherence rates between 30-70 per cent, while a study of hypertensive patients monitored through electronic pill boxes showed that 42 per cent took less than 80 per cent of their prescribed medication. Apart from reduced smoking rates we have not successfully influenced a reduction in the lifestyle factors contributing to disease, and we are being forced to realise there is an underlying complexity we are failing to address.
One of my students asked me why we bother to treat patients who are “non-compliant”, this being, in her opinion, a waste of money and time, and undermining to the job satisfaction of the doctor.
However, non-adherence may come from a lack of understanding, with limited health literacy and/or language barriers having a significant influence on treatment compliance. Too often non-adherence results from a failure on the part of the health care provider to ensure the patient fully understands the clinical rationale for the management plan, and the timetable for compliance.
For too long the term “non-compliance” has been used in a derogatory way by clinicians without fully exploring the reasons behind it. The health budget, hospital bed occupancy and clinician’s time are being increasingly consumed by those diseases we can treat but we cannot cure.
We are not effectively preventing these chronic diseases because causative factors are, in significant part, lifestyle choices that require patients being actively involved in self management of their own health. Lacking this patient commitment, we are only managing to delay disease progress through ongoing treatment.
In order to improve compliance us clinicians need to explore our role in supporting patients to maintain compliance, and perhaps be willing to look at compliance in a different light.
The judgemental tone of “Non-compliance” has been challenged, with WHO’s calling “Non-adherence” more appropriate as it suggests a deeper understanding of the diverse reasons a patient may not adhere to recommendations.
The term “concordance” has been used to refer to clinician and patient working together to improve compliance. To me, these changes in nomenclature reflect a shift in clinician attitudes towards a more patient centred approach. It heralds a move to a more effective and holistic approach to medical care, with shared decision making, and enhanced education and support equipping patients to better care for themselves.
“Patient centred care” has become the catch cry of the decade, talked about by doctors and politicians alike. However to work effectively, patient centred decision-making needs to be accompanied by a shift in responsibility for health care from doctor alone to a patient/doctor team. Yet not all patients are comfortable with this shift, while others do not fully understand their emergent new role and need to be supported to do so. Some doctors may feel that time constraints make practicing in this way impossible, although improved outcomes are both time and cost effective. As clinicians a large part of our work is to explore the health determinants which influence our patients’ ability to care for themselves optimally and to support and educate them to be able to do so.
Compliance, adherence, concordance… whichever term we choose, we should rate compassion and understanding above judgement. We should be honest in our own contribution to non-adherence because that is where we can start to influence change. For instance, when a patient is diagnosed with an ongoing illness such as asthma, diabetes or cancer, the clinician is aware that the depth and nature of their therapeutic relationship with their patient will change. This is the time to start building a deeper understanding of the patient and all the factors - physical, psychological and social - that may impact on the course of their disease and indeed on compliance.
It is a time to meet the patient at a deeper level, to hear them, to honour them and to encourage them to put trust in their own ability to self-care, with appropriate support.
The term “intelligent non-compliance” has been used to describe the situation where the patient is accepting of their medical condition and has made a conscious decision to diverge from recommended treatment.
This may come from the belief that they do not need treatment, that the treatment is having unwanted side-effects or is dangerous for them, or that other changes they are making in their life, such as weight loss for hypertension or removal of food allergens in asthma, are as effective and safer.
Sometimes this comes from an inherent mistrust of Western medicine or is influenced by cultural or religious beliefs. In this situation gentle, non-judgemental exploration and education may encourage more trust. It is sometimes hard for us as clinicians to watch the consequences of such decisions in the knowledge that disease progress may have been halted if treatment had been chosen. However, we should respect the patient’s choice and accept that their decision may be “right” for them.
Sometimes recommended treatments are beyond the patient’s financial or physical capacity, and we must always be mindful of this. Taking time to develop a sense of trust with our patients and to agree on treatment goals is always a good first step to better adherence.
We all react to illness in different ways and it is important for us to try to understand our patients’ psychological reaction to their disease because this can have a significant influence on adherence to treatment.
Very often there is a sense of shame and grief, particularly if the patient is aware that their own choices have contributed. Sometimes there is anger and blame, whether towards self, others or even the clinician themselves.
Underlying this there is often grief and sadness, emotions that can be so overwhelming that the patient chooses denial of the disease or the severity of the disease as a way of coping. Fears around disease and its progression may cause significant anxiety or depression, so patients are unable to effectively care for themselves. Compassionate listening and exploration with the patient and use of simple psychological tools may empower the patient to feel they have some control over the course of their illness.
I liken this to travelling down a steep hill in a car - patients may feel they have no control but teaching them how to hold the steering wheel and apply the brakes helps them to feel more in control and more hopeful. At times a deeper level of psychological support is needed.
Non-adherence may come simply from lack of understanding. Lack of health literacy has a significant influence on treatment adherence. While written patient information is recommended it is of little use if the patient has low literacy skills, language barriers or the information is not given at a level they understand. Too often non-adherence results from a failure on the part of the health care provider to ensure the patient fully understands the clinical rationale for the management plan, exactly what needs to be done and how it should be done.
Let us stop being judgemental about adherence but rather develop a connection to our patients that allows both parties to truly know what the best path is for them and how we as clinicians can best support them. All of medicine is about effective partnerships, truly caring and deeply understanding.
Dr Jane Barker is Academic Lead – General Practice, University Centre for Rural Health North Coast
