The Severely Anemic Thalassemia Control Bill

If any criticism is to be made on the Thalassemia Control Bill (Bill No 16/2011), it is not because such legislation is not welcomed, or the significance of the plight of children affected is any lesser than any other sick child. But it is to be criticized for its lack of comprehensive measures to control thalassemia, the lack of its evidence-based justifications, and for its many technical errors.

The numerous technical errors in the Bill show the complete disregard by lawmakers of the technical advice and feedback provided to the draft Bill.

To begin with, there is the problem of the definition. The definition of thalassemia given in the Bill is so broad that any similar condition with anemia falls in to it. Leaving aside the question of whether a definition is needed at all in the Bill, the provided definition is not one that can be found in the medical literature. If the provided definition was so that all patients with hemoglobinopathies other than thalassemia could be covered in the provision of services, it would have been welcomed. But the rest of the Bill provides no opportunities for patients with other hemoglobinopathies, and even restricts treatment to thalassemia patients alone.

Secondly, the bill makes it compulsory for all persons to be tested and also all persons below 18 years of age to be tested. The carrier rate is 18%, meaning that the majority of the population is normal, and therefore testing everyone is a waste of resources. There is no point in testing children born to normal parents, and also those adults wanting to marry who know that their parents are not carriers or a normal. Testing should be mandatory for those intending to marry, and that only one partner need to be tested which will cut down costs by half. The requirement for all to be tested must be removed.

Thirdly, Article 8 states that all persons with symptoms of thalassemia be registered, whereas it is those who are diagnosed with thalassemia that need to be registered. There are many other diseases that have similar symptoms to thalassemia.

Fourthly, the Bill requires that hemoglobin level be kept from falling below 9.0 and that parents are responsible to ensure this by bringing the child for treatment. This completely ignores the fact that hemoglobin is not the only determinant of care. Additionally, an adult patient can refuse treatment, and the parent cannot be held responsible for failure to adhere to treatment. Furthermore, care providers cannot be asked to force treatment on an adult competent patient who is refusing treatment.

Unambitious and Unclear and Mandate

Effective control of thalassemia requires ambitious and bold steps. It needs to address controversial issues such as prenatal diagnosis, selective abortion, and the just distribution of resources. The law making process in the Majlis provides an opportunity for lawmakers to bring such issues to the floor and to legitimize them.

However, no one had the courage to discuss the real issues and to enforce effective measures. Artcile 7 of the Bill merely states that the NTC is charged with determining what preventive programs are to be taken up, leaving the mandate and approach largely to whoever is running the center. This person may or may not be willing to take up current recommended practices.

The Bill should have had a clear objective of controlling thalassemia rather than stating “to bring down the rate at which thalassemia increases in Maldives”. If the Bill was designed to have any real impact on the current situation, the following should have been included explicitly and MPs should have debated on these issues to come to a consensus and legalize them;

• Prenatal Diagnosis (PND): This is key in identifying affected children and several couples already seek PND abroad at their own expense. PND can be done in Maldives as there are trained persons. 
• Option for Medical Termination of Pregnancy (MTP): after PND, the option for MTP must be made available, together with counseling services for those refusing MTP
• Targeted testing/screening: Not everyone in the population need to be tested and screened. Furthermore, this will cut down costs.
• Targeted Awareness Programs: Society for Health Education (SHE) already has statistics on where the carrier rate is highest and the awareness programs can be targeted and intensified in these areas.
• Patient Engagement; in determining how the services are to be provided and to improve on care provision

By failing to incorporate these important aspects, either through ignorance or arrogance of MPs, the Bill has become a useless, severely anemic piece of legislation to control thalassemia and to provide effective treatment to the affected children. The regulations that followed from the legislation naturally lacked any direction to really impact the lives of thalassemic patients. The ongoing dissatisfaction of thalassemia patients with the services they receive is a testament to this.

For whatever reasons, the Bill was twice rejected by President Nasheed even after being passed by the Majlis. The rejections provided an opportunity to restructure and strengthen the Bill with the feedback from the technical people and patients, instead of being ratified by President Waheed for political reasons. It was an opportunity to move away from the failed approach that is currently in place. It was an opportunity to ensure the right to quality care for thalassemia patients.

I'm a doctor. Must you trust me?

The Doctor, by Luke Fildes

When Luke Fildes painted The Doctor in 1891 as a tribute to the status of the English doctor, it was heralded by the doctors at the time as a symbol of their profession. The painting depicts a well-dressed doctor sitting by the bed of a young patient contemplating on the next course of action, with his gaze fixed on the patient. The patient lies in bed with a hand held out in supplication. The father of the patient stands in the shadows, with a comforting hand on the distraught mother, looking at the doctor, waiting for his assessment. If need be, the doctor will dispense some medication. If need be, he will roll up his sleeves and operate. The painting was drawn at a time when there was little doctors could do in terms of treatment. Yet the family places their trust in him fully, and the doctor is allowed to get near the child that they value and love, with the belief that the doctor will act for the benefit of the child, instead of harming him. There is uncertain knowledge about what action the doctor will take and the family depends on the doctor’s ‘expertise’ to cure their child. This vulnerability, uncertainty and dependence forms the basis of trust, and in many ways, the sense of trust that emanates from this iconic picture is characteristic of the trust public places in the medical profession. 

The doctor-patient relationship is one that is grounded on trust. There is a tacit belief in the doctor’s goodwill and competence, resulting from an imbalance of power between the patient and doctor in terms of knowledge. And where there is ignorance, and uncertainty, trust is a must. The lack of knowledge seems crucial to the notion of trust. Even where knowledge is possible, as when the patient is a doctor himself, he must feign ignorance, because trust is described as one of the virtues of being a good patient, together with truthfulness, justice, and probity. Trust is required because medical care depends upon judgement calls that are not predictable, and the good patient is one who recognizes this. A doctor is not allowed to treat himself as his judgement is deemed clouded when sick, and he must submit to the treatment of other doctors and pretend not to be certain of outcomes. The struggle here is obvious, and it is not surprising that doctors qua doctors turn out to be the worst of patients. 

A trustworthy person is someone who has a quality that we desire, and we trust our doctors to have goodwill towards us and to work in our best interests. The burden of trust mostly rests on the doctor because he has to work for our best interest, while being impartially concerned for our wellbeing. When we put trust in our doctor, we do so on the assumption that the probability of him doing what is beneficial to us is higher than what is detrimental, high enough for us to consider cooperating with him. Trust therefore enables patients to co-operate in making clinical decisions together. But while the doctor’s goodwill towards the patient would be desirable, it is not a necessary condition for trust. The patient may well know that the doctor bears him little good will and regards him as a gomer, yet trust him to treat him competently. The patient only has to trust the doctor to provide a good outcome for the patient. For his part, the patient could regard the doctor as a ‘dirtball’, be seductive or deceptive, or even pretend to be ill and the doctor would still have to treat him.

Trust also works to reduce the many complexities that arise in the modern health care setting. Medicine has become complex and highly technical, and it does little good for the patient to know every detail to guide the surgeon’s hands, or to know all the side effects of each medicament or all the complications of every procedure. The patient can rely and depend on the doctors to process this complex information. In the therapeutic setting, trust is instrumental because it encourages positive health behaviours such as seeking medical help, revealing sensitive information, consenting for, submitting to and complying with treatment and returning for follow-ups when advised. It is also therapeutic in the sense that it promotes healing (the placebo effect is a striking example). Trust fosters an effective healthcare relationship and also acts to promotes the doctor’s job satisfaction. Conversely, if this trust were lacking, patients are more likely to seek second opinions, to switch doctors, resort to self-treatment or alternative forms of treatment, conceal information that may be key to diagnosis or even decline to take up preventive measures such as vaccines or comply with treatment in general. The predilection of our patients to fly abroad, even for available treatment, could also be a symptom of the general lack of trust, be it in our doctors or in the system. 

Trust therefore functions to provide the context which enables the uptake of the benefits of medicine by the public. In doing so the public places its trust in both the doctor and the medical system or the medical profession. Trust for the physician derives from his professionalism and mannerisms, and the doctor-patient relationship reflects aspects of enduring emotional bonds that form early on in life, amplified cognitively over time. This trust is interpersonal and patients act under conditions of uncertainty, and choose to trust the doctor, with the assurance that the doctor will accept responsibility when this trust results in disappointment, or harmful outcomes. 

A lot of trust is hence evidently placed in medicine. What matters is not the amount of trust,  but whether this trust is well placed or not. The paternalistic conception of the doctor-patient relationship does not provide a context to put reasonable trust in because of the power and knowledge asymmetries between the doctor and the patient. Trust is only well-placed when the patient and the doctor are on an equal footing through more information and less dependence. There is a loss of context for the traditional forms of trust to arise because of considerable changes in the practice of medicine. Firstly, it has become more technical and less personal. Unlike in Luke Filde’s painting, the doctor’s gaze has come not to be fixed on the patient, “that concrete body, that visible whole, that positive plenitude that faces him” but towards…“the signs that differentiate one disease from another,” on lab reports, x-rays and the numerous equipment to which the patient is connected. This biomedical model of medicine deprives the patient of every moral and social dimension, and decisions taken at the bedside become technical and efficient, but unemotional. Secondly, patients are beginning to be more empowered and are more (if not always accurately) informed about the medical care, and are encouraged to be seen as partners in health care decision-making. The right of the patient to be informed on treatment and the right to refuse or accept treatment is well established, and professional paternalism is discouraged in modern medical practice. Instead of waiting in the shadows as a background figure as in Filde’s painting, the father would be very much in the spotlight, participating in making decisions with the doctor. In this context the patient takes on a position of trust-as-confidence rather than trust-as-faith because what necessitated trust as faith, goodwill towards the patient and lack of information, are no longer present. 

While it may be said that there is a loss of the context for trust to thrive in, with the change in medical practice, the general decline of trust in social and political institutions, weak medical regulation, more empowered patients, and a  public suspicious of failings on the part of doctors, it remains yet to ascertain if there is a crisis of decline of trust in the medical profession. However, as Justice Irwin states: "Public trust in doctors is essential to the whole enterprise of medicine. A destruction of that trust would be corrosive to the general attitude to the profession and therefore to the effectiveness overall of treatment". 

Treat Me Right

"In the absence of patient's rights, the health care setting can become a jungle" - Prof. George J Annas

Doctors have always worked for the welfare of their patients, and patients trust doctors to work towards their best interests at all times. The Hippocratic injunction “primum non nocere –first (or above all), do no harm” is the prevailing ethos of the practice of medicine. Doctors are there for the benefit of their patients and they must do them good to the best of their abilities and do nothing which they know will cause them harm. This forms the basis for the patient’s willingness to let doctors get near things she values and even harm them; the heart is trustingly placed in the cardiac surgeon’s hands, the decision on whether a loved one is dead or alive is left to the doctors, or a pill with dangerous side-effects is swallowed without a second thought. In these instances, the doctor is seen as a friend who takes care of you, with good will, fairness and integrity. And because doctors belong to a profession that is regulated and will therefore play by the rules, patients are willing to bare themselves naked, both physically and emotionally.

Based on this trust, and the underlying assumption that the “doctor knows best”, patients for the most part, are willing to submit to the vagaries of uncomfortable and painful procedures and harmful medications. And up until a few decades ago, medicine was unquestionably paternalistic with the doctor acting and deciding for the patient’s benefit, but without the specific consent of the patient being treated. Patients are seen as ‘cases’ that was done something to, rather than something with. Few patients questioned the authority of the doctor, while automatically presuming that doctors will work for their benefit. To trust was to have blind faith in the competence and the good will of the doctor. Furthermore, with the patient being not in a position of having medical knowledge, there was little alternative for the patients but to trust the doctor. Trust is required where there is ignorance.

The potential for medicine to benefit patients is, however, no greater than the potential to harm patients, sometimes with disastrous consequences such as death or lifelong disability. In the face of the possibility for such outcomes, “Trust me, I am a doctor” is no longer justifiable. And with the easy access to medical information, medical knowledge is no more the sole preserve of the medical profession, and informed patients are in a position to reduce that knowledge gap. The ignorance that necessitated trust (faith) in the doctors is lesser. This is not to say that patients need not trust their doctors any more, but that this trust should be based more on confidence than on faith. The ultimate aim of medicine is to do what is good for the patient, and patients need to be able to trust their doctors to do what is good for them, not out of good will, but because it is what is expected of them. Such trust is justified only when patients are empowered through the awareness and protection of their rights.

One fundamental right is the right for patient autonomy­ – patients must be respected as independent moral agents with the right to make decisions on all aspects of their care, based on the information that is provided to them. Doctors are now encouraged to view the decision-making process as a partnership, while embracing a more equal sharing of the medical knowledge. The patient has the right to be informed of the nature of his/her condition, the treatment options, and any complications that may arise as a result of treatment procedures. Based on this information, it is the patient who has to decide and grant the doctor the authority to treat him or her. This is the basis for the process of obtaining consent. The Constitution ensures that each person has the right to life and security of the person and touching a patient without consent is unlawful and violates his or her bodily integrity and amounts to battery, and can also result in a negligent action. The right to patient autonomy is strong enough to entitle patients to refuse treatment, even if the refusal may result in his or her death.

One other fundamental right is that of privacy and confidentiality. This is one set of rights that are ensured even in our Constitution. Article 24 states that “everyone has the right to respect for his private and family life, his home and his private communications”.  Patients have the right to expect that private information about them disclosed to the doctor will be held in confidence.  Confidentiality is central to the trust between doctors and patients because where this right is not protected, patients will be reluctant to seek care in certain circumstances or fail to disclose key information that may have direct impact on their care.

The right to a good standard of healthcare is another right that is derived from our Constitution. It states that “a good standard of health care, physical and mental” is necessary for the realization of all other rights pursuant to the Constitution. The Constitution further states that citizens must seek to achieve a “good standard of health care”. Seeking this right therefore becomes an constitutional obligation on the patient’s part and the state must ensure that citizens have access to quality healthcare. In addition to these rights that can be directly derived from our Constitution, patients have the right to be treated with dignity and respect, the right to complain about the care provided, and the right to redress when harm arises during their care.

One question that always follows from any discussion on patient rights is on the rights of health care providers. The question may seem relevant; but what list of rights can be produced? How would such a list look like?  Doctors can and will continue to enjoy the unique power that is afforded to them through their knowledge and skill in medicine. And doctors will continue to demand exceptional amounts of respect, authority, power and income. There will always remain a natural inequality in the doctor patient relationship. It is precisely because of this inequality that the rights language needs to be used, even though patients cannot be now expected to accept with resignation whatever doctors say or do to them. But society still trusts them and has granted them professional autonomy by allowing self-regulation. It is up to the medical profession to determine the standards of the profession, to ensure competency of their doctors and to discipline doctors when these standards are not met.

Thus, a contract is made between the public and the medical profession for mutual benefit, where the patient is provided a satisfactory treatment in exchange for very concrete and material professional gain from the privileges granted by the society. Doctors and providers therefore have duties and responsibilities rather than specific rights. And if they are to maintain the trust that allows them these special privileges, they have to act in a trustworthy manner. When Hippocrates formulated his infamous oath, the traditional healers could refer to it to know how to act in a way their patients would trust them. It was this that transformed the traditional healers into professionals. Hippocrates recognized the potential for doctors to harm and exploit their patients when he penned the oath that has governed the relationship between the doctor and the patient for millennia. It was acknowledged that doctors were in a position to exploit their patients and prescribes the doctor to restrain himself; prescribe only for the benefit instead of harm; not to disclose the patient’s private details obtained during the consultations; act within one’s competencies; enter homes only for the good of the patients, and to keep away from all intentional ill-doing and all seduction, especially from the pleasures of love with women or with men.  The clinical encounter was one that tempted the doctor to “manipulate, control, or otherwise take advantage of the ineluctably vulnerable person.” 

It is thus, the duty and responsibility of healthcare providers and the state to ensure that the rights of patients are protected and respected. Patients come to their doctor in a state of anxiety and vulnerability, with the outcome dependent on the nature of care provided. This vulnerability and the potential for harm and abuse it permits require that the patient be kept at the center of care. Treating a patients right becomes treatment that protects the patient’s rights. 

Should this be the tipping point?

These are my thoughts on the recent incident where a destructive operation (decapitation) had to be performed due to obstructed labor in a patient admitted in IGMH. According to statement from IGMH, the fetal decapitation had to be performed because there was no other alternative. The IGMH statement did not explain why a cesarian section had to be done, because destructive operations are resorted to so that a delivery by cesarian section can be avoided. Considering the fact that the patient was under their care for over 2 weeks, there are a number of issues that are not clear; the basis for the decision to conduct a normal vaginal delivery in the face of the high risk factors, the grounds for the decision to carry out a cesarian section after the decapitation and how much information was provided during the consent process. Furthermore there are the issues with the Maldives Police Service (MPS) and the Human Rights Commission of the Maldives (HRCM) investigating the incident when the investigation will be carried out by IGMH and the Quality Assurance and Improvement Division (QAID) of the Ministry of Health and Family (MoHF).

Based on previous experience, I can foresee a lengthy and troubled battle ahead between these institutions, because in most such incidents a patient party would file a complaint at the MoHF, the MPS and the HRCM. The MPS and HRCM would then write to the MoHF to investigate.

As with other incidents where deaths have occurred in the healthcare settings, and where complaints are lodged, the Maldives Police Service’s investigation would be conducted by the Serious and Organized Crime Unit. I find this highly inappropriate and even reprehensible, specially when an investigating officer told me on two occasions that there are doctors who kill their patients. Perhaps he was referring to some incidents abroad, but deaths in the healthcare settings should not be investigated by the Serious and Organized Crime Unit.

The HRCM’s role in such investigations remains unclear. We are not party to any treaties similar to those as the European Convention on the Human Rights which enforce the states to protect the rights in the Universal Declaration of Human Rights such as right to life. We are all too familiar with fuss caused by HRCM during their investigation into the ‘Jaariya’ case some time ago when patient confidentiality was not taken into consideration. On another occasion last year, during their investigation of a death of a child, they were threatening the use of their legal power to obtain confidential records from the QAID. While it is true that the HRCM has more legal power than the MoHF, without a clear objective framework as to how the HRCM’s investigation would benefit the public or even protect the human rights, their involvement is more of an added complication.

The role of MoHF and QAID are obvious. The QAID is tasked with investigating any complaints made by the public about the healthcare setting, ranging from adverse incidents to deaths in the healthcare setting. The Review Unit oversees the work of the Review Committee, the Professional Standards and Ethics Committee, The National Patient Safety Committee and the Maternal Death Review Committee. Most investigations into adverse events occur irrespective of whether a complaint is made or not. Of course the public is not aware of this and that is the reason why the same complaint is lodged at different institutions.

Patients complaints are an important source of feedback for the improvement of healthcare. They provide information as to where the weaknesses in the system lies. An avenue to complain lets the patients know that the service providers are concerned when things go wrong, and that measures will be taken by the health care providers to prevent future such occurrences. It provides an opportunity for the providers to give an explanation and even an apology. My efforts to publicize the complaints process by making a comprehensive complaints system was received with annoyance and irritation by the doctors.

This brings me to the role of the doctors as the key component in the whole process. Even though the investigations would be carried out ‘independently’ by the three organizations, they all have to rely on the evidence given by the doctors. However, the readiness of the doctors to provide such evidence is limited. There is much reluctance on their part for reasons that remain beyond my comprehension. Any investigation into the quality of care is viewed with skepticism and as a threat to their professional autonomy. There are no efforts to standardize treatment, conduct clinical audits, and in the absence of a learning environment, there is little drive for continuous professional development programs. They should be ready to admit that mistakes and errors do happen. Studies into the amount of adverse incidents occurring at IGMH need to be carried out. Unless sincere efforts to reform come from them, the quality of health care will not improve.

The ongoing process of investigation into this incident would yet again bring out the difficulties and deficiencies in the system. QAID will be again in the difficult position to arrange meetings because of the lack of doctors to conduct a review. Once a meeting is convened, after several cancellations and delays, the facts of the case would be contested, as would the justifications for the decision to undertake the decapitation. Questions of fault and responsibility would depend on the doctor’s views as there are no standards to judge the incident against. When a report is finally drawn up, the QAID will not share it with the MPS and HRCM stating that their investigation is for the purpose of improving quality, and not finding fault, and partly because the doctors would condition their participation in the review process on non-disclosure. This is specially so if there are obvious problems with the actions of doctors. The MPS and HRCM then would threaten to obtain the report by going to the court. It was only a few weeks ago a controversial judgement was passed by the courts in order to make MoHF accountable.

What is to be noted here is that the process will not be rectified unless legislation is drawn up. Health care needs to be regulated and legislation is necessary in all aspects, from the services to the professionals.The People’s Majlis should stop fooling around and work to pass key legislations that are relevant to the people such as those that have already been submitted by the MoHF.

It is incidents such as these which has forced health care in other countries to be transformed into a more patient-centered approach, and to make healthcare providers more accountable, after years of giving unquestioned acceptance, or even tolerance, to the actions of doctors. I once asked one of the most prominent doctors in the Maldives why, we as doctors, should not take the initiative and put in place regulations and make efforts to improve the quality of care before things get out of hand. He replied that it is the role of patients to drive such change.

It is my hope that the patients, and the public, will keep the momentum generated by this incident going, as the impetus for change will not come from any where else.

Making the Minister of Health and Family Accountable?

Recently a man arrested on charges of suspected murder was released by the court to make the Minister of Health and Family Dr Aminath Jameel accountable. I seriously question the wisdom behind that decision. If the reasoning is to be accepted, then all suspected criminals should be released to make the Maldives Police Services accountable. The decision raises several problems regarding the role of the courts in administering justice, which are better set aside for the purpose of this article. But the decision is an opportunity to draw up legislation to legally enforce the concerned authorities to work in liaison, by formulating procedures and guidelines so that justice is not denied to those who seek it simply because of administrative failures.

The fact that it had taken more than six months to get a death report cannot be accepted. There is no autopsy done, or any forensic investigations carried out, and a report is mostly drawn up by just looking at the dead body. It is just a visual account of the state of the dead body, with a statement by the declaring doctor(s) as to the cause of death. The fact that most doctors do not even follow the guidelines issued by the Ministry of Health and Family in filling up these forms is just another example of how limited the amount of power the Ministry can exercise over its employees.

Sadly, the recent event is not an isolated event. Over the months that I had worked in the Ministry of Health and Family, important documents that needed to be obtained and reports that need to be generated for the purpose of investigating claims of harm being done to patients took several months for completion. Or had to be simply abandoned because of multiple delays. Apart from the difficulties in obtaining key documents such as the hospital records, there was the reluctance and refusal of doctors to review the documents for a report on a case. The ADK Hospital repeatedly and blatantly refuses to hand over documents, stating that there are no legal grounds upon which they should be released. For ADK, the lack of a legislation enables them to not to cooperate with the Ministry in investigations, where it may be in their interest not to proceed with an investigation.

When patients make a complaint regarding serious harm or even death of a loved one, the least we could do is to explain to them what went wrong and ensure that something is done to prevent such an occurrence in the future, specially when such complaints are not made to claim compensation. This is important to regain the public’s trust in the healthcare system that has long been lost. But in majority of instances, a proper answer to their concerns cannot be provided due to the lack of cooperation by the health care institutions. The patients or their relatives cannot be asked to accept such frivolous delays.

Several meetings were held with the Maldives Police Services, the Prosecutor General, and even the Human Rights Commission to find a way to speed up the process of investigation. But up till now no framework has been setup.

It is high time the Ministry of Health and Family realize that they should be able to exercise power over the Health Service Cooperation and its employees. When the Ministry demands documents they should be provided and employees, whether doctors or not, should work together in collaboration with the Ministry in order to achieve its goals. As the regulator of healthcare services, it should have full control over all matters involving healthcare, both in the public and private settings.

I hope that the court decision would be used by the Minister of Health and Family as an opportunity to set in place the necessary legislation or to strengthen the existing legislation.

Thalassemia Prevention: In Need of New Policy Directions

President Nasheed rightly rejected the Thalassemia Control Bill recently. His reasons for rejecting the Bill may be wrong, but this gives an opportunity for policy makers to make a comprehensive legislation to achieve the goal of preventing thalassemia, rather than controlling or sustaining thalassemia.

The Thalassemia Prevention Program was initiated in 1992 and has made marked contributions to the prevention of thalassemia in the Maldives. However, the impact of the prevention program has not achieved its desired effect: the prevention of thalassemia. New policy goals and directions need to be set and implemented to achieve that goal.

Background

Since the implementation of the program the average number of new children affected has dropped from 47 to 28 per year. However the last decade has not seen any significant decline in the number of cases despite the widespread awareness campaigns, screenings and genetic counseling, which forms the basis of the existing prevention program.

Most new affected children are being born to those who know of the risk, and to those who already have an affected child, either in the hopes of having a normal child, or to have a child who will act as a donor for the affected child.

The compliance with the treatment is poor in view of the lack of the necessary counseling in treatment, both for the children and the parents. Health seeking behavior is largely dependent on survival (the need for transfusions is well respected) and not on long term management ( poor compliance with other aspects of care).

Furthermore, the financial difficulties the key implementing agencies, the National Thalassemia Center and the Society for Health Education, are facing pose further challenges in both the preventive and curative aspects.

Objectives

The objective of a new Prevention Program should be:

• To stop the affected births (within 10 years) and improve treatment for existing affected children

Proposed Policy Decisions

In order to achieve the above objective, the existing policy decisions need to be strengthened and broadened:

1. Health education and awareness: The existing programs need to be directed and focused to identified groups.

• The NTC and SHE have data on where the disease is most prevalent and awareness programs should be directed to these areas.
• Health education program need to be started directed at affected children and parents to educate them the treatments and complications of the disease. Patient and parental involvement in the ongoing care to need to be highlighted.

2. Mandatory premarital screening:

• Screening options to be made available in the atoll/province level for high risk partners
• Screening for one partner only initially.

3. Genetic counseling and general counseling:

• Counseling program to be strengthened, to include not just the information of the risk, but the implications of having and caring for a child with thalassemia.
• A system to be set in place to identify the number of couples counseled and the number of couples who decide to separate or get married in view of the risks involved.
• To widen the counseling component to affected children and their parents to address the psychosocial implications of the disease.
• To integrate the genetic counseling with prenatal diagnosis.

4. Prenatal Diagnosis:

Prenatal diagnosis is key in reducing the number of affected children being born, as is evident from the experience of other countries. And at present several Maldivian couples already seek PND abroad. Following figures provided by SHE are the number of couples who have sought PND abroad:

In 2006 23 couples, in 2007 46 couples, in 2008 47 couples, in 2009 55 couples, and in 2010 (till July) 23 couples

• PND services thus should be made available in the Maldives, to address the above demand. Three doctors have already been trained in the diagnostic method and SHE has the capability to get the tests done. Further support should be provided to SHE to establish the system.
• PND should be coupled with option for abortion and counseling (for those who do not wish to terminate the pregnancy)

5. Abortion:

• As is it already legalized in the Maldives, abortion should not pose much problems most other countries faced in implementing this approach towards preventing thalassemia.
• A policy on abortion for health professionals should be drawn up and implemented.

6. Establishment of a Hematology Center:

• The NTC should be expanded into a hematology center to address all patients with blood disorders. This will provide a means of equal and just distribution of resources and health care services who are afflicted with disease conditions similar to thalassemia.
• The required funds for the establishment of such a center could be generated from international donors. To my knowledge, a trip Saudi Arabia by the Minster of Health and family and the Thalassemia Society was promising in this regard.

7. PND to be covered by health insurance scheme:

• Couples are already spending huge sums going abroad for prenatal diagnosis and abortion.
• The view that the affected children are born as a result of conscious decisions parents make and thus should not be covered by the insurance scheme contradicts the justification for the current provision of treatment under Madhana, or the existence of NTC.
• All efforts should thus be put towards preventing this preventable disease.

8. The Thalassemia Control Bill:

It is unfortunate that legislators have ignored these facts in drafting and debating the the Thalassemia Control Bill despite being shared. Now that it has been rejected by the President, this provides an opportunity to amend it to enforce an approach to prevent, rather than sustain thalassemia in the Maldives.

Implementing Agencies

The cooperation and coordination amongst several key agencies are necessary if the above policy goals are to be reached effectively. Each agency should be provided by clear roles and responsibilities. Key agencies include:

a) The Ministry of Health and Family: to develop these policy guidelines and to provide diagnostic and treatment protocols to NTC and all others involved in the care of thalassemic children.

b) National Thalassemia Center: As the main center providing services, the NTC should be given stronger powers in terms of procuring and arranging treatment services, making them less dependent on other agencies for directions.

c) Society for Health Education: Proper acknowledgment need to be made of SHE’s continuing contributions. A system for smoother coordination between NTC and SHE is needed.

d) Male’ Health Services Corporation: As NTC is under the Corporation, it should provide all the assistance to NTC in achieving the goals. Its current failure to provide for the care is a reflection of their inability to manage and lead. It is time for a overhaul of the whole system.

e) Maldives Thalassemia Association: the role and responsibility of the Association need to be broadened. A journal could be published by the Association to involve thalassemia children in providing information to their peers, and as an outlet for their creative expressions.

f) National Social Protection Agency: The prenatal diagnosis program need to be under the insurance scheme.

Conclusion

In concluding I would share the success of Cyprus in preventing thalassemia. Thalassemia was a serious health problem in Cyprus. They tackled this problem by aiming to stop the affected births, not by controlling it. This decision was made in 1976. In 1979 high risk families started to be screened. In 1980 premarital screening was mandatory. In 1984 prenatal diagnosis was started. Between 1991 and 2001there were only 5 thalassemia children born ( one in every 2 to 3 years) unlike the previous 18-20 cases per year. Within the last 5 years no thalassemic babies have been born (data from 3 years ago). Majority of the patients are now over 25 years old, living and working as the normal population. 38% are married and have children.

There is no doubt and reason why we should not be able to achieve the same in the Maldives. Question is, will anyone decide to do this?

Explaining Myself

Apparently, the advocacy of ethical care in our health care system warrants an explanation. This is a reply to a comment I received when I put a poster on my other blog seeking funds to study Medical Ethics and Law.

I thank the person who commented for an opportunity to post in this blog and for hoping that I would get the required funds.

The comment was:

"I do hope you get the funds. But I just couldn't prevent myself from asking you about the few dot points you have presented at the top of the poster.

As head of the unit reviewing (confidentially) the issues are you divulging information for your personal gain by including these in your poster campaign? Is that not unethical?

And atleast one of the issues you have raised has been dealt with in a court of law and found no medical negligence. Are you implying something else?

And are you giving verdict on the other cases pending court cases or pending completion of as yet undisclosed internal reviews?

Why are you only presenting this information when it suits to benefit you? Why not disclose all the details of these cases for the common benefit?

Faisal, explain yourself."

In explaining myself, I have to say that:

it is apparent that you are very much concerned that I might blow the whistle on the many unsafe, unethical and unacceptable practices that are carried out by healthcare professionals in the Maldives. And I certainly am addressing these issues where ever I get the opportunity and will continue to do so.

And I haven't breached any confidentially or ethical issues in my poster campaign. As 'confidentiality', 'privacy', 'patient rights', and 'medical ethics' are the terms I live by, I should know. Perhaps it is with such a limited understanding of confidentiality that you describe, that most doctors do not report cases of sexual or physical abuse to the concerned authorities, so that such child could be given better support.

As for the court case- I am indeed against the decision. The judge was given misdirection, by the doctors, for the judge to say that informed consent is unnecessary and even detrimental to treating a patient, when in fact, informed consent is a cornerstone of ethical treatment. I hope the patient party wins the case in the ongoing appeal process.

Many doctors whom I've spoken to are against fully informing a patient, of the purpose of treatment, and even the complications. Worse still they keep refusing that medical errors should be disclosed to the patient. Going on, they find no obligation towards justice and feels threatened the minute the justice system seek their expert opinion.

If I were doing this to benefit myself, I would not be pursuing medical ethics and law, but a clinical field and get rich. I stopped practicing at IGMH and joined the Ministry of Health and Family, in the Quality Improvement Division, because I did not want to work where I was not accountable, where I was let loose to practice any way I want, without any supervision, without any learning activities, and where a culture of patient centered, safe effective care was not practiced.

Maybe when you are sick and the doctor you consult writes an illegible prescription just by having a glance at you, without showing a slightest emotion of compassion or care, roughly examines you without asking your consent, without any regard to your privacy, and later go off an gossip with his colleagues about your condition in the canteen, you will realize why I find the current behavior of most health professionals unacceptable and intolerable.

I hope such matters are taken up for intense debate, specially by the Medical Association and the relevant Councils.