Patient’s Partnership in Disease Management
There is no better example of mutual trust and belief in a relationship than that between a doctor and a patient.This is a relationship of a wide spectrum which resembles that between the parents and the children on one hand, and between the seller and the consumer on the other. It extends from compassion, responsibility and empathy to consumerism, business and (sometimes) confrontation. Moreover, the relationship is neither permanent nor obligatory. It is a partnership which succeeds best when both the partners are mutually responsive and responsible. One cannot just rely on the doctor alone to get the positive results. Similarly, the doctor must not assume the role of “Mr Know All” and “Mr Do All” whenever managing a sick individual.
The issue that a patient needs to participate and cooperate in almost any plan of medical management is undebatable. A prescription is meaningless unless effectively utilized by the patient. It is a common knowledge that most people do not follow the treatment instructions in toto. This is perhaps inherent in human nature. Yet we often tend to blame the prescription or the physician for any unfavourable outcome of an illness. Endless examples of such experiences can be counted.
The issue of treatment compliance is best understood in case of de-addiction programmes. Compliance can hardly be expected on the mere advice to quit alcohol, a habit forming drug or tobacco consumption. Every one may want a magic medicine to get rid of a habit causing distress. But success can be achieved only with a prolonged and arduous programme involving the whole family.
Certainly, people do understand that a psychiatric disorder or a drug dependence problem is difficult to treat especially because the patient himself/herself is not fully competent and involved. Let us take more simple examples of an acute infection and a relatively chronic illness such as pulmonary tuberculosis. As per several assessment studies, more than 80 percent of people will faulter on either the dose or the duration of prescribed drugs. It was the realization of this very fact that led the World Health Organization and also the Government of India to adopt the strategy of Directly Observed Therapy, Short Course (DOTS) for tuberculosis where each treatment dose is required to be put in the mouth of the patient in front of a drug-provider.
Patient cooperation is important in not only taking the medicine, but also in following other instructions. Any number of bottles of cough mixtures and expectorants or strips of antibiotics will do no good to a patient of bronchitis or asthma who continues to smoke, irrespective of medical advice. Similarly, anti-diabetic and anti-hypertensive drugs will not serve the purpose unless dietary precautions are taken. Most patients with musculo-skeletal and joint problems cannot fully benefit without recommended exercises and weight reduction. Unfortunately, many of the ancilliary recommendations are difficult to follow, but do play a crucial role in treatment plans. Quite often, the non-drug factors may determine the success or failure of a treatment.
Another important area where patient’s active participation is required is his/her appreciation and understanding of the disease, anticipation of future complications, progress of illness and limitations of treatment. While most diseases are treated in one or the other way, only a few are cured. Many of the illnesses require life long treatments and remain controlled while others continue to progress, irrespective of treatments. It is the last group of diseases which is difficult to understand. Treatment in these cases is aimed either at palliation or in somehow reducing the pace of progression. There is a constant dilemma whether to treat or not to treat such patients, especially because treatments are associated with several other problems. There is no easy way to wriggle out of this dilemma.
We always like to involve the patient and/or the family in treatment decisions. This however is not necessarily a successful strategy all the time. This is even more so in case of relatively unfamiliar illnesses. People may know the ifs and buts of asthma, tuberculosis, diabetes, hypertension or cancer. But how many can really appreciate problems such as emphysema, cardiomyopathy, fibrosing alveolitis or motor neurone disease which may relentlessly progress to death, sooner or later? Patient’s ability to understand depends upon innumerable factors such as age, sex, education, occupation, religion, race and so on. Further, the explanation given by doctors are interpreted differently by different people. Generally, people would tend to translate all advice as per their own beliefs and conveniences. There is almost always a lack of clear understanding.
Patient’s interpretation of medical advice is quite personal for not only the serious and progressive disorders but also for other common problems such as anxiety, depression, allergies or infertility. There is never a direct correlation between what is advised and what is understood.
Lastly, the limitations and problems of treatment as required to be accepted. Quite often, the treatment effects are unexpected. There is no treatment which is one hundred percent effective and safe. Even a highly effective drug in most patients may not show its useful effects in a few. Similarly, a very safe drug may well prove to be risky in some. It is a common knowledge that some patients may show allergic or hyper-sensitivity reactions to an otherwise innocuous drug. Same holds true of a complications following a surgical procedure. The issue of unexpected effects and reactions is always a sore point with patients.
On the other hand, many treatments are administered with full knowledge of their side effects and toxicities. Several kinds of surgical operations are done and medicine (such as corticosteroids and cytotoxic drugs) given in spite of their known problems. Such a decision is obviously made in being the best (or better) of the available options. The problems ensue when the opted solution starts causing problems. Factually, no patient can appreciate the unforeseen problems of a treatment in spite of being told in the beginning. Yet, the explanations require to be given.
To summarise, the patient continues to remain as an important and responsible partner in managing his/her disease. Unfortunately, the disease belongs to him/her alone. The patient needs all the attention and empathy of a doctor. But neither the doctor, nor anyone else can own the disease. Although the treatment is given by the doctor, it belongs to both. A doctor is more of a counsellor or a facilitator than a proverbial god. He/She needs to always keep in mind the very ancient saying – I treat, He cures.
(Ex-Professor & Head, Department of Pulmonary Medicine
Postgrad Instt of Med Edu & Res, Chandigarh, India)
Medical Director, Jindal Clinics, SCO 21, Dakshin Marg, Sector 20 D,
Near Guru Ravi Das Bhawan, Chandigarh, India 160020.
Ph. Clincis: +91 172 4911000, Res. +91 172 2712030/ 31