Sunday, March 06, 2011

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.


Saturday, February 26, 2011

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.



Tuesday, January 25, 2011

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?