Mistrust of health systems, Healthcare Professionals is a major challenge in acceptance of deceased organ donation


Robust ethical deceased organ donation programme
is a necessity-Farhat Moazam
Mistrust of health systems, Healthcare
Professionals is a major challenge in
acceptance of deceased organ donation
Other factors include lack of awareness, religious
& cultural biases, & arrogance of physicians
Well trained Transplant Coordinators can play a
vital role in success of DOD programme

KARACHI: Mistrust of health systems, healthcare professionals, lack of awareness, religious biases and arrogance of physicians were highlighted as some of the major challenges in acceptance of Deceased Organ Donation. The experts who spoke at the two day international conference/workshop on “Ethical Deceased Organ and Tissue Donor programmes and the role of Transplant Coordinators” also pointed out that well trained Transplant Coordinators can play a vital role in the success of Deceased Organ Donation programmes. The conference was organized by Centre for Bioethics & Culture at Sindh Institute of Urology and Transplantation on 24-25 June 2019.

Prof. Farhat Moazam (extreme left) moderating the panel discussion during the CBEC
Conference on Ethical Deceased Organ and Tissue Donor Programme. The panelists
photographed in the picture are Dr. Iftikhar Khan from Saudi Arabia, Dr. Katayoun
Najafizadeh from Iran and Prof. Anwar Naqvi from SIUT Pakistan.

Prof. Adib Rizvi Director of SIUT in his welcome address said that apart from lack of awareness, we in Pakistan have also been a victim of commercialism but now we have got rid of this menace. Two to three transplants are performed at SIUT daily and they are all live related. SIUT is a unique center because here we provide free treatment with dignity. We have shown that it is possible, doable and for the last forty two years we have not charged any patient and we get more and more donations every year. We need to educate the masses about deceased organ donation, he added.

Prof. Farhat Moazam Chairperson of CBEC in her address said that to provide live donors for all those who need transplant is not possible. We do not have a central registry but it is estimated that about fifty thousand people die every year for lack of kidney donation. Though we have now laws but still some physicians, surgeons and underground hospitals continue to indulge in unethical practices as regards kidney transplants. We need to implement the laws against organ trade effectively. At present Pakistan, she said, needs a robust ethical deceased organ donation programme which is a necessity. Reliance on living donors will not make us self-sufficient. Under the circumstances buying, selling of kidneys will not go away. We can reduce the risk to donors but we cannot eliminate it completely. Decision making for organ donation is made at the family level and it is usually more disadvantage family members who are presented as donors. There is resistance from the public to provide organs from the deceased body due to cultural and religious biases. It is not an ideal position to do deceased organ donation while arrogance of the physicians was also responsible to some extent which prevents acceptance of deceased organ donation. Healthcare professionals should share their burden with those working in the Intensive Care Units. It is a team effort and we need collective efforts to promote organ donation, she remarked.

Dr. Akhtar Jamal Khan presenting a memento to Jose Nunez from WHO
Geneva office at the Conference on Ethical Deceased Organ and Tissue
Donor Programme organized by CBEC/SIUT at Karachi recently.

Keynote Presentations

Dr. Jose Nunez from WHO was the first speaker in the plenary session who discussed WHO ethical guidelines for deceased organ donation. WHO, he said, was formed on 7th April 1948 and it has six regions. We try to promote health and make the world safe. We work with governments and private sector both. We are also working in the transplant programmed. The first heart transplant, he said, was performed in 1967. Though some one also announced that he will do the head transplant but so far it has not been possible. In future 3D organs will be developed and transplanted.

Transplants ensure long term survival, good quality of life. They protect life, reduce mortality and also improve quality of life. During 2017, 1, 39,415 transplants were performed all over the world which is just 12% of the global needs and 43% this was kidney transplants. The number of transplants being performed is growing but still there is a big gap between demand and supply. The number of people who need dialysis is also increasing in Asia in particular. Xenotransplantation could offer exciting alternative when perfected. It is hoped that animal to human transplants will start and in next five to ten years we will have Farms growing animal used for transplant. Living donor is a luxury. Speaking about mortality he said kidney donation has mortality of 3/10,000 while living donors have a mortality of 17/10,000.

Dr. Katayoun Najafizadeh from Iran and Dr. Valerie Luyckx and Dr. Jose Nunez from Switzerland
speaking at the Conference on Ethical Deceased Organ and Tissue Donor Programme organized
by CBEC/SIUT at Karachi on 24-25th June 2019.

Continuing Dr. Jose said that about fifty million people die annually and if we have a deceased donor program, we will have enough organs for transplantation. We need to identify brain death. We also need to talk about who should be involved in transplantation and also involve the people in the Intensive Care Units. Croatia increased the number of donors during the last three years. Harvard first described the brain death criteria in 1968. In 1970s the brain death criteria was accepted but even in highly organized societies in the developed world like Switzerland 52% people refuse to donate organs. For transplantation, we need good organization and well trained professionals. Transplantation should also be safe procedures and it should be done ethically. Safety and welfare of the donors should be protected at all times. There should be no advertising of transplantation programme, protect patients from incompetent surgeons and there should be no monetary payments. Moreover the programme must ensure equitable allocation for which clinical criteria will guide. Transplant programme should be open to scrutiny. 4D will develop donation from deceased donors. Ensuring transparency will encourage public to donate organs. He concluded his presentation by stating that donation is a medical activity and part of end of life care.

Dr. Alicia Perez Blanco shared the success story of Spain as regards Deceased organ donor programme. Spain, she said, has a population of 48 million, in their programme family wish is always final. Relatives are approached. We have a national network of donor coordinators. They are available 24 hours. Donor coordinators ensure high level of awareness among hospital staff. Only qualified healthcare professionals are involved in the transplantation network. We ensure transparency, public education through media and we are always open to questions from the journalists. We have done audit of 13% Departments of ICUs. First the donor coordination team which consists of dedicated specialist interventionists explain the process of brain death. Patients admitted in the ICU are ensured full treatment before they are diagnosed as brain death and the number of actual donors is about 24%. We have kidney, liver, heart and lung transplant programme. Patient selection is done very carefully and matching of donor recipient is ensured. Transplants is done in public hospitals and all donors are transferred to the public hospitals from private hospitals. We have achieved 20% increase in brain death donors and 24% of them were from the Intensive Care Units, she added.

A view of the post conference workshops in progress.

Ethical practices in 
organ transplantation

Dr.Valerie Luyckx from WHO discussed different strategies in the promotion of ethical practices in organ transplantation by WHO Collaborating Centers. The important principles include Autonomy, Doing Good, Avoiding Harm and ensure Justice. Trust and Transparency is crucial to the success of any transplantation programme. At present public trust in organ donation system is very low. Donation of organs vary in various regions of Switzerland and it also vary within the ICUs in the same hospitals. At times not enough donors are identified in time for organ retrieval. There are some ethical questions i.e. Is this an obligation to refer all eligible donors and is it an obligation to donate organs to save life and save treatment cost? Almost 70% decisions to donate organs are made by the families, 30% of people do have organ donation card but even then 60% families do not give consent. There are religious barriers, lack of knowledge. Media campaign in Spain has been quite successful. Preserving bodily integrity is often cited as one of the reasons for refusal to donate organs. In fact almost all religions encourage organ donation. Limited incentives can be provided to the donors like paying for the funerals which is quite expensive in some countries. Social media can be used. Vouchers for living donors and their families in case they need any transplant is yet another initiative. She emphasized that decisions should be taken before crisis occurs. Family members and Clergy should be involved early. Family should be asked to decide and they may disagree. Opt in and Opt out options should be available. Different centers can share their experiences with others, she added.

Panel Discussion

Dr. Sunil Shroff joined from India through Skype to participate in the panel discussion. Prof.Farhat Moazam was the moderator of the session. The panelists were asked to share their views on acceptability of brain death by the healthcare professionals, Views on Deceased Organ Donation in the society and Role of Transplant Coordinators.

 Group photograph of some of the participants to the conference/workshops on Deceased
Organ Donation photographed alongwith invited guest speakers and facilitators.

Sharing the experience from India Dr. Sunil Shroof who established the Mohan Foundation in 1997 said that in 2012 they had one hundred ninety deceased organ donations which increased five times to nine hundred five in 2017. They run various training programmes for ICU consultants, Surgeons. One of the surgeons after this training performed eighteen heart transplants. Since 2000, they have organized 62 training programmes in India. There is lack of understanding of brain death in general public. There is mistrust of health systems and waiting list of those in need of organs for transplantation is increasing. At present there are three hundred centers where transplants are performed in India. We have introduced Family Donor Card. Brain death is accepted. If the case is referred to medico legal section, it results in delay and organs may not be available for transplantation. Sale of organs is highlighted by the media and there were fifteen cases against healthcare professionals during 2015 which reduced to just seven cases in 2016. We have a good cornea donation programme and we hope by 2025 we will have seven thousand deceased donors, he remarked.

Dr. Iftikhar Khan from King Fahad Specialists Hospital Dammam, Saudi Arabia said that Centre for organ donation was established in 1984. We have a mobile organ donation team which contacts the potential donors. Religious Fatwas in favour of transplantation has also helped us a lot though some religious scholars do not support transplantation programme. One of the study conducted in Saudi Arabia showed that 70% of the donors came from Central Region of Saudi Arabia. Another study showed that 20% are not interested to become donors and they cite religion which prohibits mutilation of the human body. Medical mistrust is another important challenge. The patients and their families believe that if they agree for organ donation their patients will not get full treatment by the healthcare professionals in the ICUs. Some HCPs consider it a burden. Families usually do not give consent. Some people are not convinced about the concept of brain death. Attitude of ICU teams also affect the decision of the donors if they give contradictory statements. There is a need for increased awareness among the doctors as well as public. He also disclosed that only about 3% of deceased organ donors are Saudis while all others are non-Saudis.

Dr. Katayoun Najafizadeh from Iran participating in the discussion stated that Iran has a population of 82 Million Imam Khomeini issued Fatwa for brain death thirty years ago and Parliament approved it in 2000. We ensure that those involved in transplantation programme are not involved in organ donation programme. Transplants are only permitted at government hospitals. The potential donors from private hospitals are shifted to public hospitals. Four specialists are involved who diagnose brain death and they include neurosurgeon, neurologist, interventionist and an anesthetist. Deceased donation transplant is covered by government and the patient do not have to pay anything. All expenditures are covered by the State. Iranian Society for Organ Donation was formed in 2015. Ministry of Health has a Centre for organ donation and there is a transplant office in every medical university. There are fifty four medical universities in Iran and MOH controls transplant centers through universities. At present we have 54 transplant centers in Iran most doing kidney transplants.

Giving details of the programme she said that first the potential donor is detected, followed by primary diagnosis, case selection, organ maintenance, confirmation of brain death, family consent, allocation of organs, transfer of patient, procurement of organs and then sharing allocation. The number of brain death cases is increasing. Transplant team visits the hospitals, transplant coordinator contacts the family, and they have to refer to their community. So far we have performed 6,338 living related transplants and detection of potential donors has increased seven times. Families are approached but some families do not give consent due to different interpretation of religious teachings. If the transplant coordinator is well trained, we have achieved 96% success in organ donation.

Prof. Anwar Naqvi from SIUT said that organ transplantation is lowest in Asia which is just 6% of the total transplants performed in the world. Commercialization has seriously affected the acceptance of the organ donation programme. In Pakistan there are twelve centers involved in transplant programme and about two thousand transplants are performed every year. There is impaired trust of the people in the medical profession. Some vendors and middleman make lot of money and there are perceptions some of which are also true that doctors are more interested in making money rather than saving the lives and this kills the organ donation programme. If some families even agree to donate organs of their patients, other family members taunt them saying that they have sold the organs. It is the most poor who are approached to sell their kidneys and one of the studies showed that 24% of these donors were HCV positive.

About twelve hundred dialysis are performed daily at nine centers affiliated with SIUT. We at SIUT have done 5,800 transplants so far. One of the studies showed that 66% people disagree with brain death criteria. He was of the view that awareness and education is the key to success. Muslims by and large even in the richest countries are not open to donation of organs. We have lack of ICU facilities even in the city of Karachi, only 275 ventilator beds are available of which 80% are in private hospitals and they charge too much. He suggested that public hospitals should have more ICU beds with facilities of ventilators. He also referred to professional apathy, lack of interest by the government. SIUT had five deceased donors which included a professor of pathology. We are making efforts to promote organ donation through different means. Healthcare Professionals, Prof. Anwar Naqvi opined, will have to take the lead to promote the deceased organ donation programme.

Responding to questions from the audience, it was pointed out by the panelists that most of the transplant coordinators are social workers, some are nurses, and a few are also physicians who are interested in transplant programmes. Those with no medical background are given some training through courses so that they are familiar with the medical background. In South Asia majority of the transplant coordinators are nurses. Dr. Sunil Shroff pointed out that if the family trusts the hospital and the doctors, if they are convinced that everything possible has been done to save their life and keep them alive, they are willing to donate. Communication with the family is very important. The patient is either dead or alive. Never use the word nearly dead. How you break the bad news to the family is also important.

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