Current state of acceptance of brain stem death and organ donation in India

Sumana Navin; Sujatha Suriyamoorthi

doi:10.4103/AMJM.AMJM_24_20

REVIEW ARTICLE

Year : 2020 | Volume : 16 | Issue : 2 | Page : 87-94

Current state of acceptance of brain stem death and organ donation in India

Sumana Navin, Sujatha Suriyamoorthi
MOHAN Foundation, Chennai, Tamil Nadu, India

Date of Submission	16-Mar-2020
Date of Acceptance	17-Mar-2020
Date of Web Publication	18-Aug-2020

Correspondence Address:
Dr. Sumana Navin
MOHAN Foundation, 3rd Floor, Toshniwal Building, 267, Kilpauk Garden Road, Chennai - 600 010, Tamil Nadu
India

Source of Support: None, Conflict of Interest: None

DOI: 10.4103/AMJM.AMJM_24_20

Abstract

Deceased organ donation (OD) involves a complex interplay of government policy, involvement of hospitals and health-care professionals (HCPs), and public support. When the Transplantation of Human Organs Act was passed in 1994 in India, acceptance of brain stem death and understanding about the deceased donation process was poor, both among the public and HCPs. While government support along with training of HCPs, public–private–nongovernmental organization partnerships, and public advocacy has enabled the deceased OD rate to move up from 0.16 per million population (pmp) in 2012 to 0.65 pmp in 2017, there is still much that needs to be done. A review of the literature undertaken to assess the knowledge, attitude, and practice of the public and HCPs toward brain stem death and OD in India revealed the need for interventions at multiple levels.

Keywords: Public attitude, brain death, brain stem death, deceased donation, organ donation, public knowledge

How to cite this article:
Navin S, Suriyamoorthi S. Current state of acceptance of brain stem death and organ donation in India. Amrita J Med 2020;16:87-94

How to cite this URL:
Navin S, Suriyamoorthi S. Current state of acceptance of brain stem death and organ donation in India. Amrita J Med [serial online] 2020 [cited 2023 Mar 30];16:87-94. Available from: https://ajmonline.org.in/text.asp?2020/16/2/87/292425

Introduction

The need for organs for transplant is ever increasing, while the availability is limited. The incidence of end-stage renal disease (ESRD) in India has been reported to be around 150 patients per million population (pmp) per year.^[1] Diabetic nephropathy was the most common (44%) cause of ESRD.^[2] Living donors are limited because of nuclear families and noncommunicable diseases such as diabetes, which affect a large segment of the population. In deceased organ donation (OD), there are a number of factors at play. A robust government policy for allocation of organs coupled with requisite hospital infrastructure and human resource to counsel donor families and recipients and a positive attitude of the public toward OD are essential to the process. The public and health-care professionals (HCPs) need to be cognizant of not only the legal, medical, and ethical aspects of brain stem death and OD, but also the sociocultural and religious factors that influence the deceased donation program. The program has seen better results in western and southern parts of India as compared to the north, east, and the northeast. In 2018, Maharashtra had the highest number of deceased organ donors, while Tamil Nadu performed the highest number of deceased donor organ transplants in the country.

Methods

A review of the literature was undertaken to assess the knowledge, attitude, and behavior of the public and HCPs with regard to brain stem death and OD [Figure 1]. A structured search strategy was used with data analysis of key factors influencing acceptance.

Figure 1: Flowchart outlining the protocol adopted in the review of the lietrature based on the Preferred Reporting Items for Systemati reviews and Meta-Analyses (PRISMA) Four-Phase flow diagram

Click here to view

An electronic search was done using the following keywords: brain death, organ donation, public knowledge, health care professionals, and public attitude. Relevant articles from PubMed were perused based on the titles and abstracts primarily, followed by review of the full-text papers and reference lists.

Inclusion criteria

Articles published from 2003 to 2019
Primary research done in India involving public and HCPs
Articles published in English
Quantitative research.

Exclusion criteria

Non-India-based research and literature reviews.

Results

Based on inclusion and exclusion criteria, 23 papers with approximately 11000 study participants were finalised. Among these, 19 papers assessed knowledge and attitude toward brain stem death & organ donation. Seven among the 19 papers were used to study the source of information on how the public came to know about organ donation. In addition to one paper from the knowledge and attitude section, four papers were exclusively reviewed to study the factors that influenced families' consent/refusal for organ donation. The results are summarised in [Table 1], [Table 2], [Table 3].

Table 1: Knowledge and attitude toward brain stem death and organ donation

Click here to view

Table 2: Source of information

Click here to view

Table 3: Family consent

Click here to view

Discussion

To the best of our knowledge this is the first review of the available literature regarding brain stem death and organ donation in India. The published information is mainly from 3 states, namely, Tamil Nadu, Karnataka and Maharashtra. As is obvious from the timelines, the available information is increasing by the year, which reflects the increasing importance of this field.

[Table 1] summarises the knowledge and attitude towards brain stem death and organ donation. The literature suggests that 'doing good' and 'helping others' are emotions that are deeply enshrined in the lay Indian minds. However, majority are not aware of the concepts of brain death or the legal aspects of organ donation^{[4],[6],[10],[11],[15],[17],[20]}. There is a discrepancy between the willingness to donate and actual donation. The literature also suggests that the poor donation rate is multi-factorial ranging from lack of awareness among some sections of society including health-care professionals, lack of infrastructure in public hospitals, and lack of clarity in the law and the organ donation process that creates apprehensions in the minds of the doctors and the public. The major sources of information regarding brain death and organ donation for our laypersons are newspapers and electronic media, with the internet gaining more traction in the recent years [Table 2].

Healthcare professionals are a decisive link in the process of organ donation. Their knowledge of and attitude towards the brain stem death certification process is vital^[26],[27].

Among the available literature, there is enough evidence that healthcare professionals in India are sufficiently aware about brain death and organ donation.^{[3],[5],[7],[8],[9],[12],[13],[14],[16],[18],[19],[21]} However, the percentage among them who have discussed about brain death and organ donation among their family or those who are registered organ donors is minimal. This is an area where further efforts should concentrate. The study by Sam et al concludes by stating that motivational messages and facts are some of the means of intervention to bring about changes regarding perceptions and intentions about organ donation among college students. Other educational tools such as advertisements, campaigns, exhibitions, and lectures can improve the awareness and attitude about organ donation among the population. Since media plays a major role in communication these days, they should take up the initiative of broadcasting the legislative laws that are involved in the process of organ donation.^[18]

Studies show that incorporating education on brain death and organ donation and nurturing medical students to become ambassadors of organ donation is an effective way to build such a culture among the healthcare professionals.^{[28],[29],[30]}

The family needs to have a 'buy in' if organ donation is to proceed. Among the studies that explored this facet, the consent rate ranges from under 10% to 66%.^{[4],[22],[23],[24],[25]} The reasons for refusal by family members seem to be related to mistrust in the healthcare system, poor understanding of brain-stem death and deceased organ donation, beliefs, roles of extended family members in decision making and finally their individual capacities to overcome grief and stress. It was interesting to note that in the study by Bansal et al. that although the family members were initially not aware about the concept of organ donation, their decision-making was not influenced by the level of education. Majority (90%) of the females were unaware about organ donation, but eventually consented for the cause.^[25]

Legal framework

A discussion on brain death and organ donation in India will not be complete without a discussion on the prevailing law.

The Transplantation of Human Organs Act (THOA), 1994 has Form 5 for pledging to donate one's organs after death. The 2011 amendment of the Act included tissues as well, and Form 7 in the 2014 Rules enables the public to pledge to donate various tissues as well.^[31] This is an opt-in system and while an individual can make his wish to donate known, the final decision to donate or not in the event of brain stem death of an individual rests with the family. Family consent is obtained in the prescribed form as per the law and only then can organ donation proceed. MOHAN Foundation has an online pledge registry. From January 2010 to June 2019, there were approximately 46,000 pledges. The highest contribution to the pledge registry is from the 21-30 age group.^[32] While government support along with training of health care professionals, public-private-NGO partnerships, and public advocacy has enabled the deceased organ donation rate to move up from 0.16 pmp in 2012 to 0.65 pmp in 2017 there is still much that needs to be done.

A widely prevalent interpretation of the law (THOA 1994) by the medical community in India is that if brain stem death is diagnosed and the family refuses consent for donation, there is no legal sanction for disconnecting life support, including the ventilator. This has led to a major ethical predicament on the ground. The family is informed that their relative is “dead” and asked for consent for donation. But if they refuse and request that the body be handed over, their request to withdraw life support is turned down.^[33]

To tackle these issues, it is essential that the Government of India formulates a policy for a “uniform definition of death” that includes both the circulatory and neurological criteria of death. Uniform legislation on death will require inclusion of BSD as a form of death in the Registration of Births and Deaths Act, and it will need to be included in the death certificate as well. The Act can define death as “death of an individual who has sustained either (a) irreversible cessation of circulatory and respiratory functions, or (b) irreversible cessation of all functions of the brain stem.” In the United States, the Uniform Determination of Death Act was enacted in 1981. In 1976, the UK criteria for diagnosing death using neurological criteria were published and subsequently clarified in the Codes of Practice. The latest Code of Practice (2008) also lays down criteria for confirming death after cardiorespiratory failure.^[34]

Conclusion

We recommend the following ten interventions to improve the knowledge, attitude, and practice of the public and HCPs toward brain death and OD in India.

Awareness regarding OD in rural India is high among the general public and HCPs. However, there is lack of understanding regarding the concept of brain stem death. Awareness regarding other organ and tissue donations besides eye and kidney needs further awareness drives
Information about the legislation related to OD and transplantation needs to be disseminated
Family refusal in majority of cases reflects poor knowledge and thus warrants interventions at community level. Signing a “Family Donor Card” may be a way to encourage conversations about OD. Taking the message to the youth is yet another way to disseminate information. They can influence the family in taking a positive decision about OD
Identifying factors that influence a person to move from adequate knowledge and positive attitude about OD to demonstrating a behavioral change by signing a donor card. Governmental and nongovernmental agencies should clarify issues related to signing OD cards
By giving importance to the topic of brain stem death and OD in the medical curriculum as well as through continuing medical education, medical students can be motivated to become ambassadors of OD who can also then guide their patients and families. Guidelines clarifying the role of nurses and other paramedical professionals in the OD and transplantation process are required
Targeted health education, behavioral change communication, and legal interventions are key to improving organ donor registrations
OD programs are almost negligible in the northeastern region of India. Formulating and implementing tangible policies for the region is the need of the hour
A collective approach with political and administrative will with sensitization campaigns in print/electronic/social media and active involvement of stakeholders from Health sector including doctors might help increase the number of people signing up for these organ donation programs
Involve faith leaders in interventions to initiate family conversations regarding OD
An in-depth pan India study on the knowledge, attitude, and behavior toward OD needs to be undertaken. High-performing states such as Maharashtra, Telangana, and Tamil Nadu could share best practices in certifying BSD, counseling families, organ allocation, organ retrieval, and transplantation.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

References

1.	Modi G, Jha V. Incidence of ESRD in India. Kidney Int 2011;79:573.
2.	Modi GK, Jha V. The incidence of end-stage renal disease in India: A population-based study. Kidney Int 2006;70:2131-3.
3.	Edwin AR, Raja D. Attitudes of health care professionals towards organ donation. Indian J Urol2000;16:98-105. [Full text]
4.	Shroff S, Navin S, Abraham G, Rajan PS, Suresh S, Rao S, et al. Cadaver organ donation and transplantation - An Indian Perspective. Transplant Proc 2003;35:15-17.
5.	Bapat U, Kedlaya PG, Gokulnath. Organ donation, awareness, attitudes and beliefs among post graduate medical students. Saudi J Kidney Dis Transpl2010;21:174-80. [PUBMED] [Full text]
6.	Annadurai K, Mani K, Ramasamy J. A study on knowledge, attitude and practices about organ donation among college students in Chennai, Tamil Nadu 2012. Prog Health Sci 2013;3:59-65
7.	Ahlawat R, Kumar V, Gupta AK, Sharma RK, Minz M, Jha V. Attitude and knowledge of healthcare workers in critical areas towards deceased organ donation in a public sector hospital in India. Natl Med J India 2013;26:322-6.
8.	Vijayalakshmi P, Nagarajaiah, Ramachandra, Math SB. Indian ICU nurses' perceptions of and attitudes towards organ donation. Br J Nurs2015;24:694-7.
9.	Patthi B, Jain S, Singla A, Singh S, Kundu H, Singh K. Beliefs and barriers for organ donation and influence of educational intervention on dental students: A questionnaire study. J Indian Assoc Public Health Dent 2015;13:58-62. [Full text]
10.	Panwar R, Pal S, Dash NR, Sahni P, Vij A, Misra MC. Why are we poor organ donors: A survey focusing on attitudes of the lay public from Northern India. J Clin Exp Hepatol 2016;6:81-6.
11.	Vijayalakshmi P, Sunitha TS, Gandhi S, Thimmaiah R, Math SB. Knowledge, attitude and behaviour of the general population towards organ donation: An Indian perspective. Natl Med J India 2016;29:257- 61. [PUBMED] [Full text]
12.	Chakradhar K, Doshi D, Srikanth Reddy B, Kulkarni S, Padma Reddy M, Sruthi Reddy S. Knowledge, attitude and practice regarding organ donation among Indian Dental Students. Int J Organ Transplant Med 2016;7:28- 35.
13.	Adithyan GS, Mariappan M, Nayana KB. A study on knowledge and attitude about organ donation among medical students in Kerala. Indian J Transplant 2017;11:133-7. [Full text]
14.	Mohod V, Kondwilkar B, Jadoun R. An institutional study of awareness of brain death declaration among resident doctors for cadaver organ donation. Indian J Anaesth2017;61:957-63. [PUBMED] [Full text]
15.	Bharambe VK, Arole VU, Puranam V, Kulkarni PP, Kulkarni PB. Knowledge and attitude toward organ donation among people in Lanja: A rural town in India. Saudi J Kidney Dis Transpl2018;29:160-6. [PUBMED] [Full text]
16.	Bharambe VK, Arole VU, Puranam V, Kulkarni PP, Kulkarni PS. Knowledge and attitude toward organ donation among health-care professionals in a rural town in India. Saudi J Kidney Dis Transpl2018;29:671-9. [PUBMED] [Full text]
17.	Jagadeesh AT, Puttur A, Mondal S, Ibrahim S, Udupi A, Prasanna LC, et al. Devising focused strategies to improve organ donor registrations: A cross-sectional study among professional drivers in coastal South India. PLoS One 2018;13:e0209686.
18.	Sam N, Ganesh R, Indrapriyadarshini V, Jeyamarthan S, Nandhini CK. Awareness, knowledge, and attitude regarding organ donation among final year students of medical Dental, Engineering, and Arts and Science Colleges in Thiruvallur and Chennai City, India. Indian J Transplant 2018;12:25-9. [Full text]
19.	Deshpande PR, Damle P, Bihani G, Khadabadi SS, Naik AN, Pawar AP. Knowledge, attitude, and practice of organ donation among pharmacy students. Indian J Transplant 2018;12:113-8. [Full text]
20.	Tamuli RP, Sarmah S, Saikia B. Organ donation - Attitude and awareness among undergraduates and postgraduates of North-East India. J Family Med Prim Care 2019;8:130-6. [PUBMED] [Full text]
21.	Darlington D, Anitha FS, Joseph C. Study of Knowledge, Attitude, and practice of organ donation among medical students in a tertiary care centre in South India. Cureus 2019;11:e4896.
22.	Kumar V, Ahlawat R, Gupta AK, Sharma RK, Minz M, Sakhuja V, et al. Potential of organ donation from deceased donors: study from a public sector hospital in India. Transpl Int 2014;27:1007-14.
23.	Shroff S, Navin S, Niranjan S. Organ donation and transplantation from deceased donors in India - An overview. Kerala Med J 2015;26:18-21.
24.	Gupta V, Chandra A, Rahul, Singh M, Shrivastava PK, Singhai A, et al. Establishing a deceased donor program in north Indian region: lessons learnt. Clin Transplant 2016;30:633-40.
25.	Bansal N, Koushal V, Mehra A. A study of sociodemographic profile and level of awareness of the decision makers for organ donation of deceased organ donors in a tertiary care hospital. Indian J Transplant 2019;13:82-5. [Full text]
26.	Tontus H, Karabey M, Gurdal N. Survey of medical students' attitudes, religious beliefs, and knowledge of organ donation. Organs Tissues Cells 2011;14:203-6.
27.	Srivastava V, Nakra M, Anand Shankar K, Dhull P, Ramprasad R, Lamba NS. Brain stem death certification protocol. Med J Armed Forces India 2018;74:213-6.
28.	Ríos A, López-Navas A, López-López A, Gómez FJ, Iriarte J, Herruzo R, et al. Do Spanish medical students understand the concept of brain death? Prog Transplant 2018;28:77-82.
29.	McGlade D, Pierscionek B. Can education alter attitudes, behaviour and knowledge about organ donation? A pretest-post-test study. BMJ Open 2013;3:e003961.
30.	Murakami M, Fukuma S, Ikezoe M, Nakamura M, Yamamoto Y, Yamazaki S, et al. Effect of an educational program on attitudes towards deceased organ donation. Ann Transplant 2015;20:269-78.
31.	Available from: https://timesofindia.indiatimes.com/india/youngsters-steer-indias-organ-donation-drive/articleshow/69935278.cms. [Last accessed on 2020 Mar 15].
32.	Available from: http://transport.bih.nic.in/Forms.htm. [Last accessed on 2020 Mar 15].
33.	Nagral S, Amalorpavanathan J. Deceased organ donation in India: Where do we go from here? Indian J Med Ethics 2014;11:162-6.
34.	Shroff S, Navin S. “Brain death” and “circulatory death”: Need for a uniform definition of death in India. Indian J Med Ethics 2018;3:321. Available from: https://ijme.in/articles/braindeathandcirculatorydea thneedforauniform-definitionofdeathinindia/. [Last accessed 2020 Aug 01].