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!
Apart from the fact that we very rarely cure disease, we more often halt progress through the use of continuing treatment, this formula is inherently flawed.
It might work if we were car mechanics. Cars, however, are not influenced by belief systems and past experience, by psychosocial determinants of health and a multitude of other factors – and cars are exceedingly simple compared to the human body. The major factor affecting a car’s “well-being” is that same factor which makes the simplistic medical formula flawed – the human factor.
Back in 2003 the World Health Organisation estimated that only 50% of patients with chronic diseases in the developed world followed treatment recommendations. Studies of adherence to asthma medication regimens report non-adherence rates between 30-70%. In a study of hypertensive patients monitored through electronic pill boxes, 42% took less than 80% of prescribed medication. Apart from reduced smoking rates, we have not successfully influenced a reduction in the lifestyle factors which contribute to disease, drug use is increasing, alcohol use remains static and obesity is rising at an alarming rate. 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”, it being, in her opinion, a waste of money and time, and undermining to the job satisfaction of the doctor. Non-compliance has been used in a derogatory way by clinicians for too long without fully exploring the reasons behind it. The health budget, hospital bed occupancy and clinicians’ time are being increasingly consumed by those diseases we can treat but we cannot cure. We are not effectively preventing these chronic diseases, despite causative factors being in part life-style choices, but we are able to delay their progress through on-going treatment. This can only be achieved through patient involvement in management. So compliance is a major health issue and we as clinicians need to explore our role in supporting our patients to maintain compliance. In fact, perhaps we need to be willing to look at compliance in a completely different light.
Non-Compliance – a judgement?
“Non-compliance” has become such a judgemental term that its use has been challenged. WHO prefers the term “non-adherence” as a more appropriate phase, suggesting 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. In fact, to me, these are simply changes in nomenclature which reflect a shift in clinician attitudes to compliance, a shift from a physician-centred approach to a patient-centred approach. It is the beginning of a move to a more effective and holistic approach to medical care, in which the clinician forms a true partnership with the patient where shared decision making, education and support facilitates the patient’s ability to effectively care for themselves.
“Patient-centred care” has become the catch cry of the decade, talked about by doctors and politicians alike. Indeed it was time we challenged the paternalistic approach of medicine of the past. However to work effectively, patient-centred decision making needs to be accompanied by a shift in responsibility for health care from doctor to a patient/doctor team. Not all patients are comfortable with this shift, others do not fully understand their own role.
Is it possible that some of us as clinicians are reluctant to let go of the powerful position we have assumed in health? Some may feel that time constraints make practising in this way impossible, though in fact if outcomes improve, it is 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 to use as clinicians, we should choose compassion and understanding over judgement. We should be honest in our own contribution to non-adherence, because that is where we can start to influence change. When a patient is first 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 not only to develop an understanding of their disorder by listening to their doctors and reading health education literature, but to put trust in becoming more aware of all the information their own bodies are giving them.
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.
Sometimes it comes from their own bodies telling them that a treatment is not right for them. I know this, because I have myself discontinued treatments that I felt were harming me. 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 that their decision may be right for them.
AS was in her thirties when she was diagnosed in Sydney with early cervical cancer. She came to see me 5 years later with vaginal bleeding and back pain. She had treated herself with dietary changes and homeopathic medicine – symptoms reduced but she now faced metastatic cervical cancer. I could not help but contemplate in her palliative phase that had the right person connected with her, supported her to undergo simple, non-invasive therapy, she could have been completely well.
Sometimes recommended treatments are beyond the patients’ financial or physical capacity and we must always be mindful of this. Taking time to developing a sense of trust with our patients and to agree with patients on treatment goals is always a good first step to better adherence.
From the Patient’s Perspective
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 these 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 for self, others or the clinician themselves. Underlying this there is often grief and sadness. At times these emotions are 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 progress 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. Sitting with patients I may liken this to travelling down a steep hill in a car. They 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.
PB was first diagnosed with breast cancer in her late forties. At the time, she was suspicious of western medical treatment and preferred to make lifestyle changes and undertake alternative therapies. A year later when the mass continued to grow she found the surgeon she was encouraged to see dismissive of her fears and beliefs and decided not to be operated on. It took time and patience on the part of a therapist she really trusted to support her to see another surgeon who did operate, and has since needed to remove other recurrences. She is now comfortable combining western medicine with complementary therapies.
Exploring health literacy
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 us both 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. As with all good relationships, the essence of success is good communication, and a foundation of love and respect.