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.

Doctors aren't saints

A man goes to the doctor with an ailment. The doctor cures this ailment and asks to be paid. The man refuses to pay, and says that doctors, by virtue of becoming a doctor, have special moral obligations to patients and society and asking for payment for his services brings into question his humanity, his morals and the oath to honor the profession. He goes on to caution that such demands would ruin the faith of the public in the profession and portray doctors as being inconsiderate and materialistic.

It is unfortunate that the current strike by doctors is viewed in such a perspective, that a strike is incompatible with the medical profession. It is disappointing that the Human Rights Commission denounced the strike by suggesting that doctors were trying to hold ransom the rights of patients for material gain when it wasn’t so. The strike was limited in that doctors attended emergencies and care was provided for inpatients. As advocates of human rights the commission should rather question why policy makers allow unnecessary suffering of patients by improper allocation of healthcare resources.

While it is true that doctors have special obligations to his patients and society, a person who choses to become a doctor does not make any declaration, implicit or explicit, that he/she will abstain from trying to make his/her life as fulfilling as possible and like any other individual they too have the right to pursue happiness. The actions of doctors should be judged by the same standards as those used for other professionals. When the Civil Service Commission fails to provide a just payment for their services, it is unfair to suggest that doctors should work under any circumstance. Several doctors, while employed full time as professionals, have been denied the professional allowance and exploited due to the commissions’ refusal to review its rules.

If doctors have special obligations, they can demand special benefits and go on strike, as long as the demands are reasonable and it does not undermine patient care. The provision of healthcare is a joint responsibility of the government, hospitals and doctors and each element should support the other.

THE PUBLICS' MISTRUST IN HEALTHCARE

Trust is a fundamental element in interpersonal relationships and the importance of trust within healthcare cannot be stressed upon enough. Patients present themselves to healthcare providers at their most vulnerable and must be able to trust both the institution and the individuals involved in their care. They must be able to trust that these individuals and organizations are competent and have their best interests at heart. At present this is far from true in this country. Most patients do not trust the institutions nor the individuals providing the care. They are weary and suspicious of any medical encounter. Numerous accounts of mismanagement, maltreatment and neglect by doctors are exchanged daily in the queues at IGMH or ADK. People would rather go abroad for the simplest ailment than get a consultation here at home. 

Several factors have contributed to the buildup of this mistrust. 

Firstly, as the face of healthcare, some doctors do not bother or are not trained in creating a healthy doctor-patient relationship that is crucial to the success of any treatment. Most Maldivian doctors are trained in South Asia, either in India, Nepal, Pakistan or Bangladesh, where a paternalistic approach to patient care is acceptable, practiced and used in training. The doctors know what is best and the patient should do whatever the doctors order, no questions asked. Procedures can be done on patients even without consent. There is no room for the patient to refuse treatment. On daily rounds it is common to see doctors scolding patients for not complying with treatment. The rights of the patient and proper ethical conduct are hardly an issue. Thus it is not surprising that such incidents are all too common in our hospitals where the doctors are either trained in or are from such countries. The possibility of trust in such an environment is impossible, especially when Maldivian patients in general ask more questions and are somewhat more aware of their rights (hence the popular belief among doctors that maldivian patients are ‘troublesome’ and ‘difficult’). 

Secondly, healthcare institutions and individuals do not protect the patients’ rights of confidentiality and treat their medical information as coffee-time gossip. It is all too common to hear doctors discussing personal details of their patients for their amusement, or lab technicians  discussing a patients’ paternity test. Healthcare professionals owe a duty not to disclose information against the patient’s wishes as medical confidentiality is an important feature of the doctor-patient relationship. 

Thirdly, healthcare institutions are all too keen to cover up medical mistakes and no framework exists to deal with such mistakes. Hardly any incident is thoroughly investigated and proper actions taken, and those wronged are not compensated. There are no professionals trained in legal medicine and those sitting on the ethics committee lack any training in the area.

Fourthly, there is no institution to regulate and standardize healthcare. The recruitment of expatriate doctors, who make up majority of doctors especially in the atolls, should be more stringent and registration at the Maldivian Medical Council should be followed by a licensing exam. Many are familiar with the account of a cook who used to work in one of the islands as a doctor for several years. There is a lack of standardized management protocols for common conditions, and adherence to those existing protocols is limited and not enforceable. There is no code of ethics or a code of professional conduct for doctors, which is a necessary tool for the regulation of the profession. Policy makers should consult healthcare professionals in making decisions that affect the health of the population in general. The recent changes to the appointment system at IGMH(which has fortunately been reversed), seriously violated a patients’ basic right to choose his/her healthcare provider, and only intensified the publics’ mistrust.  

In such a setting, where healthcare is not standardized or regulated, and where the healthcare providers are not bound by any obligations, legal, professional or otherwise, the publics’ mistrust towards healthcare is not surprising. It has resulted in the increased number of second opinions being sought and increased the requests for referral abroad. Failure to comply with treatment is commonplace. It has also increased the number of people turning towards other sources of treatment. 

Having said all this, I know of no doctor who wishes harm on his patient. Perhaps it is the combination of several factors rather than a single one that has led to this mistrust. Trust is a potentially powerful variable affecting healthcare decisions. And as such, both healthcare institutions and individuals should work to regain and reestablish this trust, by building a relationship in which the values and goals of both parties are clearer to each other, one of shared decision making, and one which promises to increase patient satisfaction and lead to greater understanding of treatment and illness. 

STATUS OF THALASSEMIA IN MALDIVES

Thalassemia, at present, is one of the most challenging hematological disorders . Patients with ß- thalassemia major need regular blood transfusions in order to live and the resulting iron overload requires chelation therapy.  The problems facing them and their parents are immense, challenging them physically, emotionally and socially. 

In the Maldives thalassemia affects about 0.16% of the population, and is found throughout the country, with the highest rate found in K atoll, most likely because an address in Male’ is given at the time of registration at the National Thalassemia Center (NTC).  Apart from K atoll, the highest rates are found in N, H.Dh and L atolls. 

To date a total of 670 cases has been registered at NTC. The number of new cases registered has not declined over the last five years, with about 28 new cases on average being registered over the last 7 years. Last year saw an increase to 39 in fact.

Considering that the country has two centers dedicated to thalassemia (Society for Health Education and NTC), and the government spends roughly $5000 per year per child for the treatment of a child with thalassemia above 12 years, this current trend raises the questions whether these centers are doing enough for the prevention of thalassemia. 

The current preventive program focuses on discouraging the marriage of carriers to one another, thus increasing the number of carriers throughout the country. And in Maldives where the social circles are small, the chance of intermarriage of careers is high. And their career status will not be a deterrence to getting married or having children. They will continue to take the risk and hope for that 75% chance of having a normal baby. 

The approach has not helped in reducing the number of new cases as most of the children with thalassemia are being born sadly, to those who know of their career status at the time of marriage, and to those who already have a child with thalassemia. This is an important observation that needs to be addressed in the prevention program as just the mere knowledge of the risk has not prevented couples from having children. 

The goal of the program should be to lessen the burden of thalassemia in at-risk families, accomplished not only by providing information about the risk but also providing options for dealing with it by helping at-risk couples obtain prenatal diagnosis and selective abortion, or by helping them to cope with the birth of an affected child. 

The current management protocol too needs revision to include oral iron chelators in the treatment. At present only a select few are being provided oral iron chelators at NTC as the treatment requires regular monitoring for side effects. Recommendations have already been made to the Min of Health and Family, in view of the considerable improvement in the serum ferritin levels in patients on combination therapy, to start the treatment at the regional levels, but its implementation has yet to materialize. 

The adherence to the current management need to be enforced more rigidly as reports of mismanagement are quite common at the regional and island level. Most doctors employed at the island level are not well versed with the disease and have different opinions regarding when to transfuse, how much to transfuse and on chelation therapy. 

And sadly the psychosocial impact of the disease is completely ignored in the management. Compliance levels are lowest at the adolescent age group and it is essential that they get the proper psychosocial support including a clear understanding of the disease. In a survey conducted amongst adolescents at NTC, 90% did not believe that they had complications despite not complying with treatment and having their serum ferritin levels well above the target range. The extent of complications have yet to be documented. 

A total of 140 of those registered have died so far, and from 1997 to 2007 each year about 8 children have died at the average age of 8 years. This young average age at death should be a matter of concern in a country where all aspects of treatment are free of cost and where treatment is readily available. No other single disease enjoys this level of commitment from the government and the statistics should be in favor of this support. 

As it is the status of thalassemia in Maldives is not encouraging and revisions need to be made in both the preventive and treatment aspects. Genetic screening should be accompanied by improved counseling. Effort should be directed towards prenatal diagnosis programs. Combination therapy for iron chelation need to be started across the country at regional levels and psychosocial support for both the affected child and family should be given. A comprehensive program encompassing public education, screening for carriers, genetic

counseling and prenatal diagnosis has markedly reduced the incidence of ,B-thalassemia major in

several countries such as Cyprus and replication of such a program in the Maldives is necessary to lessen the burden of this preventable disease.

‘Aadhaige doctarun’

In a few months’ time I will become a doctor and will go home after what has seemed like an eternity in Nepal. It will be one of my biggest achievements, as it is for any person who becomes a doctor. Training to become a doctor is tough. The amount of theoretical detail you have to know is enormous. The practical skill you need to acquire is demanding and challenging, more so because you are dealing with a human being. The social interactions you encounter, while mostly pleasant can be emotionally taxing at times. The burden of carrying the knowledge that your actions or inactions can have life changing impacts on people’s lives can only be understood by a doctor. To become a doctor is one of the noblest and selfless things you can do. And there is certainly nothing ordinary about it.

So why is that I will be labeled an ‘aadhaige doctor’ once I go home? Does any one hear a talk of ‘aadhaige lawyerun’ or ‘aadhaige teacherun’ or ‘addhaige engineerun’? Hardly ever. After all the hard work you put in, all you get to be is ‘aadhaige (ordinary)?’ Here is a dictionary definition of ‘ordinary’:

Ordinary:
·Not exceptional in any way especially in quality or ability or size or degree;
·Lacking special distinction, rank, or status

With all the knowledge and skill you have acquired, it almost makes you cry. The word ‘aadhaige’ in Dhivehi is used, for the most part, in this context to mean that you are ‘not specialized’. For a lack of a word for ‘specialist’ people have opted to use ‘aadhiage’ to differentiate the specialists from non-specialists doctors. As it is, the word is harmless and quite innocent if you don’t read too much into it.

And it may not be as upsetting if the public did not take the meaning of the word ‘aadhaige /ordinary’ to heart literally.

But words do convey meaning and if one examines the current doctor-patient relationships in Male’, the effect it has had on the general outlook regarding doctors is obvious-that a doctor cannot be trusted or knows little if he/she is not specialized. The public has to come to know that to become a specialist you first need to get an MBBS degree and that each specialist used to be an MBBS doctor.

The adoption of the word ‘aadahige’ and its effect on the doctor-patient relationship is as important as the reasons for the existing contempt for the health care system and its resulting failure to establish a healthy and productive relationship between the patient and the doctor. (This I will discuss later on)

Off topic

Here is a thought- will people be good when they go to heaven?

We are told that only those good among us will get to heaven. But only a few among those are good for the sake of being good. Majority are good only because they dont want to burn in hell for eternity. So once such 'good' people go to heaven and start doing whatever they wish because they can, will there be any order? Without the threat of the hell fire, is there any point of codes of moral conduct? Won't there be absolute chaos and anarchy?

Perhaps it will be safe to assume that no such thing would happen. But why not? As human beings we are the worst creatures to govern. Even Adam and Eve were cast out form heaven because they disobeyeyed God. Would we not be yeilding to temptations that we had resisted on earth? Would we not be feeling sooo free as to start doing each and every naughty little thing we were afraid to do?

Maybe when we go to heaven such temptations are removed from us so that we would be virtuous. We would all be wearing white robes and walking around like wise men. But once parts of my personality or characters that define me in toto are removed, does it not cease to be me? Would I , mutatis mutandis, be still me? Wont we all be akin to zombies?

A remark on Arts in the Maldives

As a maldivian, and as an aspiting artist myself (visit my gallery), I thought we were quite creative. In general there is good taste amongst us. I am thankful that we can distinguish readily the ‘katu’ and ‘ori’ type of styles. But when we take a closer look at the visual arts, there is a whole different story to it. We are indeed ‘katu’ and ‘ori’. Why else would we be making copies of Hindi movies and Hindi songs? (And really bad versions of that too) Are we so incapable of coming up with a good idea for a movie? Or a nice melody for a song? With the number of film companies and teenagers going around with guitars on their backs, you might think of that we were bursting with creative energy. Even in the popular business of graphics design, where one would expect to see new ideas, you could hardly come across a piece of work that inspires you to stop and admire for a while. Website designs are terribly disappointing. Posters, brochures and all such print media clearly lack any originality.

Maybe the whole creative process is aimed in the wrong direction- commercialization. I know of a vocalist who records a song (sung to a Hindi tune of course) and gets paid 1000/- for it. Making money is easy in the ‘Albom’ industry and the movie industry. And we as the audience let them get away with substandard performances, either because we think that ‘rajje aa balaafa evaru rangalhennu!’ Or that we are too rich so we might as well pay, or we just don’t care.

Maybe it’s the first response that is the common consensus. And that maybe the reason for arts in Maldives not to flourish to its potential. And perhaps the current condition is fitting to our current social condition: our inability (or reluctance?) to express ourselves. Art is supposed to portray what the artist feels, or think and if there is nothing for the artist to express, what results would be as blank as his emotions.

I recently came across the website of the National Art Gallery of the Maldives. One thing that strikes you when you browse through the gallery is that how ‘Maldivian’ all the art works look. Palm trees and beaches, underwater scenery of fish, native children playing, and fishermen going about their daily chores. Is this only what all Maldivians are about? I am sure there is more to being a Maldivian than carrying a fishing rod. That ideal has long been lost with the newer generations who know that even though we are portrayed as a nation of fisherman ( “mas veri kamakee dhivehin ge ley naaru”), we are not so.
We are a nation that imports almost everything- economic, social, cultural, and even academic. And one has to wonder why art has not had any impact on it by such influences. Why are we so reluctant to experiment and to change? Is it because the public will buy or see whatever that is produced without question?

We should not let our artistic expressions be limited to or be confined by what the society ascribes to as being ‘maldivian art’. New avenues need to be explored; new forms of art have to be introduced. Art has to be seen more as an outlet of creative expression than a commercial enterprise.

Note: I salute all Maldivian artists (but not those in the movie and song industry) for their inspiring works of art.