Session 1: The Patient and Civil Society
Dr Matthias Wismar
Members of the Malta Health Network
It is indeed a great pleasure to host you for this first training session in a series of sessions organized by the Malta Health Network. On this note, I wish to thank Ms Gertrude Buttigieg and her team for their untiring work to represent the voice of patients and further promote increased safeguard for patient’s rights.
Coming from the medical profession, I must say that I was most of the time on the other side of the fence, as a provider of medical advice and service to patients. In the past 40 years, the doctor-patient relationship has changed, from a rather paternalistic and didactic approach, whereby the best interests of the patient as judged by the clinical expert were valued well above the provision of comprehensive medical information and decision making power of the patient, to a more informative model whereby the patient is viewed as a consumer who is in the best position to decide what is in his or her best interest.
In my personal experience as doctor, I can safely state that it is not easy to strike a balance between these models, and whilst a strict paternalistic model risks silencing the patient, a strict informative approach risks placing the doctor in a difficult position to decide between the well-being of the patient, and possible legal repercussions on the care provider himself if he tries to ignore the patients expressed wishes. Therefore, it is important to recognize that both patients and doctors have rights and responsibilities and consequently every policy decision needs to take into consideration the interests of these two stakeholders.
Whatever the circumstances, I believe it is important to underline patient’s rights and ensure that patients, irrespective of whether one is in a private or a state-run institution, have: (i) a fundamental right to privacy and confidentiality of medical information, (ii) the right to consent or to refuse treatment and (iii) the right to be informed about relevant risks caused by any medical procedures or treatments.
That is why this training opportunity is an excellent example how the clinical expert and the patient come together to better understand how to promote the well-being of the patient and ensure legislation and initiatives are conducive to a more educated and participant patient community.
The four sessions offered in this forum provide a very good overview of the areas in which patients and patients organizations could be more active and directly impinge on the decision-making structures of the national health systems. Today’s session, the patient and civil society is a very important and central topic when discussing patient’s rights and representation. NGO’s working with patients and providing health and psychological assistance are most of the time the first entity the patient meets after being diagnosed with a particular disease. They provide support, information and act as an important bridge between the patient and local authorities. These organizations could therefore be considered as an important additional pillar to the traditional primary and secondary medical care offered by our national health systems.
We do not as yet have the national equivalent of the European Patient Forum in Malta. European legislation however is implemented across the board, especially when one deals with health and security hazards at work. Besides issues affecting the general health of the population, like smoking, alcohol consumption etc are strictly adhered to.
Through sustained contacts, civil society organizations hold the key to cultivate a one-to-one relationship with the patient and thus be in a better position to listen, comprehend and speak about patient’s grievances and in some instances uncover injustice. In turn, this informal approach, gives patients increased empowerment and tools to better understand their rights and be vocal about it. Health related NGOs are not so numerous or vocal in Malta. Could be because in general terms the Health System and services offered are well above average European standards.
I believe education for health-care providers and civil society organizations is crucial. Before taking up health related matters, NGO officials are expected to be fully conversant with the issues to be promoted. This should be coupled with education for patients. Otherwise any campaign will fall short from reaching the desired outcome of promoting public health. Patients are the protagonists and should be equipped with the best tools and mechanisms to take informed decisions about their medical ailments, and when needed, to push the political class to introduce necessary legislative changes. Besides being a positive force for the betterment of health services and the introduction of new systems of care, patients awareness will also make care givers develop a greater sense of responsibility and better quality of service to the discerning patient. It is not the fear of compensation or litigation that should keep the relations between care givers and patients at an optimal level, but the mutual respect each should have for the other.
The intimate doctor/caregiver – patient relationship should be based on mutual trust and respect. We should avoid at all costs moving in the direction where this time proven relationship, ends up as a purely commercial relationship where the service provider (physician or care worker) simply provides a service to the buyer of the service (patient). If that were to happen, medical practice will never be the same again.
To conclude, I wish you every success in your discussions. I am confident that the speakers chosen by the Malta Health Network will provide you with an extensive overview of the relationship between patients and civil society, whilst provide patients with important and timely information about their national and European rights.