Swap-transplant was added in the amendment of the Act in 2011. Key words: Family influence, Organ donation, Organ transplantation,. Brain-dead,. Organ or ...
Health and Population Perspectives and Issues 36 (3 & 4), 108-114, 2013
INTRA AND INTER-FAMILY INFLUENCES ON ORGAN DONATION AND TRANSPLANTATION Reeta Dar*, Indu Grewal*, Anil Kumar** and S. V. Adhish*** ABSTRACT The demand of organs is much higher than the supply in many countries. India needs more than 200000 organs every year. About 150000 kidneys and 20000 livers are required annually whereas only 3500 kidneys and 500 livers are transplanted every year and most of these transplant surgeries occur because of live donation mostly from family members. Many people advocate that a legal sanction for organ donation and transplant would put an end to unethical practice of organ trafficking, transplant tourism, sale of organ donation, etc. India and USA have familycentric single opt-in mechanisms where it is the family which has the last say in donating their relative’s organs, irrespective of the will of the donor himself. Sweden and Denmark have the single opt-in system but the option to donate lies with the donor himself and family members cannot go against his/her wish. It took India more than two decades to legalize organ donation from a brain stem-dead person which was made legal in 1994 with the Parliament enacted the law named the Transplantation of Human Organs Act 1994. Under the Act, near relatives i.e., mother, father, siblings, son, daughter, grandparents, grandchildren and spouse can donate organs to their family members in case the need arises11. In these relations, it is believed that no financial transactions are made and such donations take place out of love and affection only. Swap-transplant was added in the amendment of the Act in 2011. Key words: Family influence, Organ donation, Organ transplantation, Brain-dead,
Organ or tissue donation is not a new concept. Most of the people are aware of kidney donation from the live-donors or eye donation from the dead ones. Both these donations are socially and biologically acceptable but it can’t be said that these are very popular. However, it was only in 1968, a new definition of death in the form of brain-death was evolved by the Ad-hoc Committee of the Harvard Medical School in the United Kingdom. This committee defined brain death as *Central Health Education Bureau, DGHS, MOHFW, GOI, New Delhi, E-mail: reetadarkhasu@yahoo. co.in. **Directorate General of Health Services, MOHFW, GOI, New Delhi ***National Institute of Health and Family Welfare, Munirka, New Delhi
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‘irreversible-coma’ with the patient being totally unreceptive and unresponsive with absence of all cranial reflexes and no spontaneous respiratory efforts during a three-minute period of disconnection from the ventilator. The report of this Ad-hoc Committee published in August, 1968 without disclosing the name of the author in the Journal of American Medical Association is considered a landmark article in the context of transplants1. By this definition, a brain-dead person could be perceived as a treasure of organs and tissues that could give life to seven to nine people and improve the quality of life of others. This all was however, intrinsically linked to the legislative mechanisms, political will, expertise and infrastructure available in various countries. This Ad-hoc Committee paved the way for organ transplant from the brain-dead persons. In due course, legal systems in various countries moved in the direction of legalizing organ donation from brain-dead persons also called cadaveric donation. It was envisaged that giving legal sanction for organ donation and transplant would put an end to unethical practice of organ trafficking, transplant tourism, sale of organ donation, etc. Different countries have different legal mechanisms in place. It is either the will of the individual or the will of the family or will of both the individual and family which matters in organ donation. China has dual opt-in mechanism under which the donation is permitted only if the donor has expressed in writing his intent to donate his organs followed by the will of his family members2. India and USA have family-centric single opt-in mechanisms where it is the family which has the last say in donating their relative’s organs, irrespective of the will of the donor himself. Sweden and Denmark have the single opt-in system but the option to donate lies with the donor himself and family members cannot go against his/ her wish3. Indian Scenario on Organ Transplant Like in many other countries, demand for organs far exceeds the supply in India. India needs more than 200000 organs every year. About 150000 kidneys and 20000 livers are required annually whereas only 3500 kidneys and 500 livers are transplanted every year and most of these transplant surgeries occur because of live donation mostly from family members4. It took India more than two decades to legalize organ donation from a brain stem-dead person which was made legal in 1994 with the Parliament enacted the law named the Transplantation of Human Organs Act 19945. Subsequently, the act and the rules underwent amendments in recent years to deal with the various aspects of family needs. Brain stem-death donation allows retrieval of vital organs like heart, lungs in addition to abdominal organs like liver, kidneys, pancreas and intestines6. Family Influences on Organ Donation and Transplant A family faces many challenges concerning the morbidity and mortality of its members and has been a great influencing factor in the formation of rules pertaining to organ donation and transplantation globally. In most of the countries, 109
people register themselves or pledge to donate organs post-death wherein opt-in system is the governing law. They do so with an intention to prevent wasting of these biological assets. Those who do not pledge for organ donation, do so not only because of socio-cultural or personal reasons but also due to mistrust on the medical community. A study that carried out three focus group discussions on health care professionals from a transplant center in South Carolina highlighted the mistrust in the medical community as a main barrier for organ donation7. The authors sought official permission from the Government of India for draft Transplantation of Human Organs and Tissues Rules 2013 for the pre-testing of one of its forms i.e. organ and tissue donation pledge form. It was found that postgraduate medical and nursing students had some kind of mistrust on medical community involved in transplantation work especially in private hospitals8. So, they were reluctant to sign pledge forms for their organ donation. Their mistrust was linked to their perceptions and experiences revolving around their own family members like wrong diagnosis of their relatives by some doctors, too many and too frequent laboratory tests and medical declaration of the prognosis of the disease which in many cases did not come true. Also it was revealed that about 33 per cent of the selected medical, nursing, dental college students did not express any intention to pledge their organs and tissues. The reasons stated by them were non-acceptance of donation by their family members (22%) and need to consult their families before they pledge their organs and tissues (11%). Such findings justify involvement of family members while pledging as it is imperative to have one of the two witnesses as family member8. Interestingly, in most of the cases, the receivers needing an organ transplant all over the world including India have been rescued by the female members of the family. In Pakistan, 95 per cent of the total donors are females and in India, 80 per cent of live organ donors are females and this is also same for the USA9-10. Elderly’s Wish to Donate Organs to His/Her Own People Central Health Education Bureau, Directorate General of Health Services, Government of India; had put up an organ donation awareness stall in the India International Trade Fair (IITF) 2012 at Pragati Maidan, New Delhi. A number of elderly people visited the stall who desired to donate their organs because they were not happy with the look after and care by their children in old age. It was interesting to perceive that fading family ties with old age resulted in their intention to donate the whole body requiring modification in our routine pledge form. They opined that their children should be deprived of performing the last rites on their bodies since they failed to take care of them during their lifetime. They felt that it was their moral duty to pledge their bodies not only for transplantation but also for scientific use too as they felt that society should benefit from such deeds.
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Family Support during Organ Donation and Transplantation Family not only supports its own family members but other families too when it comes to organ donation and transplantation. When a person in a family suffers from last-stage renal/ liver disease; then usually the family tries to tap its own resources not only financially but also biologically to prolong the life of the ailing member. The rich even try to purchase organs from non-family members needing money in exchange of organs which is strictly prohibited and punishable under the Indian laws. Under the Act, near relatives i.e., mother, father, siblings, son, daughter, grandparents, grandchildren and spouse can donate organs to their family members in case the need arises11. In these relations, it is believed that no financial transactions are made and such donations take place out of love and affection only. The best possible option in such cases could be donation from identical twins as post-operative cost is significantly low. The recipient in such cases is not put on immuno -suppressant post-operatively as there are rare chances of organ rejection. The cost of the transplant surgery varies from organ to organ and hospital to hospital. Organ donation and transplantation has compelled families to seek help from other families in many cases and has been a key player in influencing amendments in THOA 1994. Swap-transplant was added in the amendment of the Act in 2011. There are live examples of inter-religion kidney swap-transplant between a Hindu couple and a Muslim couple in Bangalore as the blood group of their own spouses did not match12. Sometimes, family members seek help from donors who are not their near relatives but have some kind of love and affection with them. Such unrelated organ donation is legal if thoroughly scrutinized to ensure no money transaction has taken place, and is permissible only for the affection and attachment between the donor and recipient. Such donation by a donor who is not a near relative has to be approved by the appropriate authorization committee. A family unfortunately also comes across a situation when their relative lands up in an Intensive Care Unit following a head injury or other medical reasons and is declared brain stem-dead. Family consent is required to decide on organ donation in such cases. Family members, in such a situation, go through a lot of turmoil, try to reach consensus and try to find the wish of dead-relative. In case the deceased person had pledged his organs during life, family still has every right to take the final decision about donating the organs. If a minor is the deceased person, then the consent of his/her parents is required. Globally, many people refuse to donate the organs of their relatives but almost all countries are trying to reduce the refusal rates. In a study on donor and nondonor families13, the families who refused permission expressed that there was insufficient time to cope with the crisis and make the decision whereas in the present study, all the 11 donor and 5 non-donor families were in need for clear
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information, emotional support, and the wish to consult someone who had experienced a similar situation who would really understand their anguish and who could interpret the information for them. In another study, the common reasons of refusal to donate by families of 21 potential donors14 who did not give consent, were differences in opinion between family members, fear of criticism by society, concern with the quality of patient care, and failure to understand the concept of Brain Stem-Death. Realizing this, India like other countries, has made it mandatory for all organ retrieving centers to have organ transplant coordinator in place who could counsel the grieving family and help them appropriately11. In India, very rarely, a family decides in favour of recipient families. The reasons for such decisions revolve around families. A few cases have given ample reasons for people to make decision to donate brain-dead donor organs like Nicolas in Italy in 1999; Hitendren in South India in 2008 and Anmol in North India in 2012. In a study of 49 donor families15, the main reasons given for organ donation were: the deceased wanted to help others (45%), donation adds something positive to death (41%), donation will give the recipients a better life (40%), the deceased had expressed the wish to be a donor (28%), and the desire of the deceased to live on in someone else (19%). Reg Green’s son globally created ripples in organ donation from brain-death16. In India, there are a number of people who have donated organs of their loved ones after brain stem-dead but what created ripples is a doctor couple’s son Hitendran’s brain stem-death followed by multiple organ donation including his heart in southern India; and recently, Anmol’s brain stem-death also led to multiple tissue and organ donation in north India in 201217-18. Family Subsequent to Organ Donation and Transplant Worldwide donors are denied recipient identity. Wherever people have come to know of the identities new relations termed as bio-social relations have emerged and recipients have celebrated their rebirths with donor families. Today in the US, there are Transplant Games are held where open mingling and searching of organ donors and receivers take part. All this makes new kinship relations possible but whether this should be promoted is debatable. Such kind of fruitful experiences have lead to a new culture of organ donation among families. Three generations in some cases have pledged eyes and ensured early retrieval from their dead relatives. Family also shares the financial burden of operative as well as post-operative care for preventing rejection of transplanted organ. To sustain such organs, immunesuppressants at the cost of 10000-12000 INR per month are to be taken by each recipient which makes it out of reach for poor families19. Further, due to the increased vulnerability of recipients to illnesses owing to immuno-suppressant use, family support is also required. To conclude, one can visualize that family has a vital and critical role to play for the success of the deceased organ donation programme in India; and all individuals should be imparted information regarding deceased donation through mass awareness programmes.
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REFERENCES
1. 2. 3. 4. 5. 6.
7.
8. 9.
Ad-hoc committee of the Harvard Medical School to examine the definition of brain death. (1968). A definition of irreversible coma. Journal of American Medical Association, Vol. 205, No. 5, p. 85-88 Hiroshi, Ishida. & Toma, H. (2004). Organ Donation Problems in Japan and Countermeasures. Saudi Journal of Kidney Diseases and Transplant, No.15, p. 125-128. Chouhan, P. & H, Draper. (2003). Modified mandated choice for organ procurement. Journal of Medical Ethics, No. 29, p. 157–162. Shroff, S. (2010). Presumed Consent or Mandated Choice to Overcome Organ Shortage. Accessed on 15th May2010, < Http://Www.mohan foundation. Transplantation of Human Organs Act, 1994. Central Act 42 of 1994, Govt. of India. Accessed on 16th July 2011, http://wwwmedindianet/tho/thobill1asp. Smith, M. & Murphy, P. (2008). A historic opportunity to improve organ donation rates in the UK. British Journal of Anaesthesia. Accessed on 24th March 2014, 6( 100): 735-737. doi: 10.1093/bja/aen124 www.ncbi.nlm.nih. gov/pubmed/18483109. Shilling, Lilless., M, Michele., L, Norman., Kenneth, D. Chavin., Laura, G. & Hildebrand, K. (2006). Health care professionals’ perceptions of the barriers to living donor kidney transplantation among African Americans. J Nat Med Association, Vol. 98, No. 6, p. 834–840. Panda, Arun. K. (2013). Draft transplantation of human organs and tissue rules 2013. Accessed on 30th June 2013, www.mohfw.nic.in. Shakeel, Sujata, B. (2009, 24 Sept.). Most live donors are wives or mothers. Inter Press Service (IPS). Accessed on 30 July 2010,
