Indian Journal of Health Social Work
(UGC Care List Journal)
The organ and tissue transplantation is no longer mere science fiction, a blend of wishful thinking and faith in the power of science. It is already saving lives, restoring health and improving the ability of thousands to lead fuller lives. Organ transplant offers a vision of hope where there was little hope before. It promises to erase the word “incurable” from many deadly ills of the human body (Schmeck, 1965). Organ donation can either be living or cadaveric. In living donations organs like one kidney, a portion of liver and pancreas can be donated whereas a cadaver donor can donate multiple organs and tissues after the death. Most cadaveric organs for transplantation are obtained from young victims of accidents or other traumatic events. The article addresses the issues related to organ donation and discusses the vi tal role of social work intervention in this healthcare field. Literature pertaining to social wor k and organ transplantation is reviewed. Organ procurement strategies under Indian Transplant Legislation are described. Functions of trained social worker in organ donation in a premier tertiary healthcare institution are also enumerated.
STATUS OF ORGAN TRANSPLANTATION IN INDIA
Organ transplantation in India has a relatively shorter history as compared to the developed world. Kidney transplants in India were first per formed in the 1970s (Nagral & Amalorpavan, 2014). The first successful heart transplant was carried out in 1994 and the first lung and liver transplantations were performed in 1998 (Sulania et al., 2016). First combined pancreas-kidney transplantation in 2004, upper arm double hand transplantation and uterus transplantation in 2017 are the most recent developments. In India, 175000 new patients develop ESRD annually and 10% are able to gain access renal replacement therapy. The rate of renalt ransplants performed yearly in India translates to 3.25 per million populations (Gumber et al., 2011). At present, the need for liver transplantation in India is estimated to be around 20/million population (or 25,000 LT per year). The current rate of LT performed in India is around 1.2/million population. Around 1200 and 1400 LT have been performed in India in the years 2013 and 2014, respectively. Of the total around 7085 LT performed in India, 5717 (80.7%) have be en LDLTs (Soin & Thiagarajan, 2016). Thousands waiting for heart or lungs face bigger odds as barely 1% get an organ before time runs out. Over 2.5 lakh deaths in India are attributed to organ failure annually. India’s organ donation rate stood at an abysmal 0.8 persons per million populations as compared to Spain 46.9 per million populations, Portugal 34 per million populations , Croatia 33 per million populations , USA 31.96 permillion populations and Belgium 30.79 per million populations.
THE LEGISLATION, ORGAN PROCUREMENT AND SOCIAL WORK
Organ donation and transplantation activity in our country is regulated by the law named as Transplantation of Human Organs and Tissues Act which was enacted in 1994 and amended in 2011. Under section two of the legislation, a person can pledge for organ and tissue donation while alive or the family members can give consent for organ and tissue donation after the demise of their relative. In the amendment to the law in 2011, provisions like mandatory notification of brain stem death, request for organ donation and appointment of transplant coordinator in hospitals and transplant centers have been incorporated. As per the THOTA Rules, a person with MSW degree may be appointed as transplant coordinator for the hospital who shall counsel and encourage family members or near relatives of the deceased person to donate the human organ and tissue and coordinate the process of organ and tissue donation. All India Institute of Medical Sciences, New Delhi is a multi-organ and tissue transplantation hospital and also has tissue banking facilities at it’s premises. ORBO is coordinating facility for deceased organ and tissue donation. Medical Social Service Officers (MSWs) coordinate cadaver organ and tissue donation at the institute.
ORGAN PROCUREMENT PROCESS AND SOCIAL WORK PRACTICE
The process of organ procurement is complex and multi disciplinary which requires synchronized efforts of different healthcare professionals. The potential donors are the patients who have sustained severe head injury in road traffic accidents or brain hemor rhage etc . The sepatients are diagnosed to be dead after checking the irreversible loss of all brain-stem functions.. In order to remove organs, brain stem death is to be certified by a panel of four doctors which include the treating doctor, medical administrator and two independent medical experts approved by the appropriate authority. Grief is the most painful of all human experiences and obtaining consent for organ donation in such a stressful situation is a herculean task. Caplan (1983) argued that it is difficult for a family to make an informed and voluntary decision about organ donation in a time of shock, confusion, and grief.
Therefore, a careful and sensitive approach for donation by a person trained in grief process is essential. Dhooper (1994) said the social worker recognizes that death jolts the family’s sense of control over its world and the grieving families feel powerless. Social worker view organ donation as an opportunity for the family to have choices and regain some control over the situation. As most of brain dead patients are road traffic accidental cases and become medico-legal cases, therefore, apart from taking consent of next of kin for organ donation, NOC from the forensic doctor and investigating officer of police is also required. Once the family has agreed for organ donation, multiple retrieval transplant teams are required to be informed about the availability of the donor, time and place of retrieval.
Three MSSOs in ORBO are performing round the clock on call duty to coordinate cadaver donations at any point of time. On the availability of potential donor, MSSOs organize the certification of brain stem death by the panel of four experts. They help the family members understand the process and phases of grief. They counsel the relatives of the brain stem dead patient at regular intervals and build up motivation for organ donation. During the counseling process, complete information about the condition of the donor, brain stem death, possibility and procedures involved in organ donation is provided. If relatives agree for organ donation, MSSOs obtain consent on the legal format as prescribed under the law. Depending upon the number of organs and tissues to be harvested, MSSOs provide information about the availability of potential donor, time and place of organ retrieval to different retrieval teams including physicians, surgeons and technicians and also to the networking organization, if an organ is to be shared with other hospital. This way, they facilitate in the retrieval of cadaver organs and tissues. MSSOs represent the hospital, and are doorway through which the family has access to the deceased memory. In this entire process of organ and tissue procurement and in future, MSSOs provides throughout support and consolation to the donor family relieving their grief and sufferings. After the organs and tissues are transplanted, MSSOs gather data of the transplant recipients and maintain complete record of donation-transplantation coordination process which is submitted to the hospital. Apart from organ donation in brainstem death, MSSOs also coordinate tissue donation calls in cardiac death from ICU, wards, mortuary, other hospitals, community and inter-state organ sharing through green corridors.
During this entire process of organs and tissues procurement, social work values, principles, techniques and skills such as rapport formation, acceptance , individualization, self-determination, freechoice, non-judgmental attitude, resource mobilization, assessment , counsel ing, exploration, information, suggestion, ventilation, person-in-situation configuration, crisis intervention, coordination and team work are utilized to a great extent.