The gift of life: Understanding the experiences of organ donor families

ABSTRACT

Introduction:

The family being a fundamental unit of society in India, the decisions regarding organ donation are usually made collectively within the family, involving not only the immediate family but also extended family members. Such a situation is encountered with brain death and organ donation as well. Therefore, delving into the family’s journey before, during, and after organ donation is essential for refining best practices and transforming public perceptions.

Objectives:

1. To explore the factors influencing the family decision making regarding deceased organ donation. 2. To examine the complexities involved in decision making after a request for organ donation. 3. To gain insights into the experiences of families during organ donation journey.

Setting and Design:

A descriptive exploratory study using mixed-method approach was conducted at a public hospital in North India.

Methods and Material:

A semistructured questionnaire containing demographic data with different variables and questions about experience of decision maker during organ donation process was used.

Results:

Following the communication of brain death, 15% (n = 12) of decision makers were confused about brain death and 25% (n = 20) were very hopeful. 32% (n = 26) had accepted brain death as death. 78% (n = 63) of decision makers expressed a lack of sufficient knowledge about organ donation to make an informed decision.

Conclusion:

The study underscores the importance of perceptions of decision makers and the significant potential of public sector hospitals in facilitating deceased organ donation (DOD). Trust in these institutions plays a crucial role in achieving successful DOD outcomes.

Introduction

The organ donation landscape in India is marked by a significantly low deceased organ donation rate, standing at just 0.8 number of donors per million people (pmp).[1] India has an opt-in consent system, where families play a crucial role in deciding on organ donation.[2] Consent rates for organ donation exhibit notable disparities worldwide, shaped by intricate factors such as culture, religion, social dynamics, and family considerations.[2,3]

India lacks a robust mechanism for individuals to self-report their willingness to donate organs,[4] placing the burden on families to make decisions during emotionally charged and traumatic situations.[2] Consequently, families often find themselves grappling with the challenging, complex, and traumatic decision-making process in the absence of clear directives.[2,5]

In India, family is the fundamental unit of society. The bonds between family members are extremely strong and the consent of the family is highly valued.[6,7]

The impact of a refusal can mean a missed opportunity for someone awaiting a life-saving transplant.[8] Understanding the experiences of Organ Donor Families becomes pivotal and delving into the family’s journey before, during, and after organ donation becomes essential.[9]

The Primary Care Physicians (PCPs) need to participate actively in promotion of organ donation as they influence the attitudes of patients toward organ donation.[10,11]

This study aims to explore these complexities and identify gaps in the deceased organ donation process.

Objectives

1. To explore the factors influencing the family decision making regarding deceased organ donation.

2. To examine the complexities involved in decision making after a request for organ donation.

3. To gain insights into the experiences of families during organ donation journey.

Setting and design

A descriptive exploratory study using mixed-method approach was conducted at a public hospital in North India.

A total of 108 families who consented to organ donation between July 2019 and June 2023 were initially approached for participation. However, owing to various reasons like unavailability, unwillingness to participate and emotional distress, few decision makers in family could not participate and a total of 81 decision makers participated (response rate = 75%).

Data collection involved telephonic interviews with family members, scheduled according to their availability and priority was given to the consent giver, or the individual most actively engaged in the decision-making process.

Methods and Material

A semistructured questionnaire containing demographic data with different variables and questions about experience of decision maker during organ donation process was used.

The questionnaire was divided into 5 parts:

1. Characteristics of the donor including sex, age, educational level, and income.

2. Decision makers characteristics.

3. Prior to Organ Donation: Preparing for the Decision and Considerations.

4. Amid Organ Donation: Navigating the Journey.

5. Postorgan Donation: Reflections and Impact.

The questionnaire was pilot tested with 7 donor families to ensure clarity and relevance. It comprised of 57 questions. Content validity was established by experts including hospital administrators and transplant coordinators.

The research received approval from the Ethics Committee of the institute.

The qualitative component of this study used open-ended questions. The research team initially drew up an interview outline, which was revised after preinterviews with seven organ donor families to form a formal interview outline.

INCLUSION CRITERIA:

Participants were selected based on the following inclusion criteria:

1. Next of kin of the donor who played an active role in the decision-making process regarding organ donation.

2. Family members aged over 18 years.

3. Capable of communicating effectively in either English or Hindi.

4. A minimum gap of 3 months between the organ donation and the interview.

Results

1. DONORS:

   The mean age of organ donors at the time of death ranged from 3 years to 65 years, with a mean age of 33 years (±17 years). Majority of the donors, 81% (n = 66), were above 18 years of age. Male donors constituted 74% (n = 60) of the total. The average length of stay in the hospital was 7 days.

   Trauma was identified as the cause of death in 85% (n = 69) of the donors. Road traffic accidents accounted for 70% (n = 57) of the cases. Falls from height were responsible for 15% (n = 12) of the cases. The remaining 15% (n = 12) were attributed to various medical conditions, including intracranial haemorrhage (ICH), hypoxic ischemic encephalopathy, brain tumours, and seizures.

   Approximately, 72% (n = 58) of the donors hailed from rural households. Medico-legal cases accounted for 88% (n = 71) of the total cases. In 52% (n = 42) of cases, the donor was the sole breadwinner for the family. The donors’ sociodemographic characteristics are shown in Tables 1 and 2.

2. DECISION MAKER:

   The mean age of the decision makers was 38 years (±11 years). Males accounted for 85% (n = 69) of the total decision makers. Nearly 94% (n = 76) of the time, decision makers were present in the hospital from admission until the conversation about organ donation. The religious affiliation of the participants was that 73% were Hindus, 21% were Sikhs, 4% were Muslims, and 2% followed other sects. The decision maker’s sociodemographic characteristics are shown in Tables 1 and 2.

3. Prior to Organ Donation: Preparing for the Decision and Considerations

   1. Brain Death

      Following the communication of brain death, the findings indicated that 15% (n = 12) were confused about brain death. The most common reasons for this confusion were normal parameters like heart beating and breathing, which made decision makers feel their relative was still alive, perception of their relative to be in some sort of coma, difficulty to understand brain death, experiencing grief and shock.

      25% (n = 20) were very hopeful. The common reasons for this hope was were decision makers felt as if the patient was alive, had expectation that the patient will recover, and wait for a miracle to happen.

      28% (n = 23) had mixed feelings of confusion, hope, and acceptance of death. Only 32% (n = 26) had accepted brain death as death.

   2. Decision Makers Knowledge about Brain Death and Organ Donation:

      75% (n = 61) had heard about organ donation and transplantation before, 83% (n = 67) were not aware of the existence of laws regarding organ donation in India, 22% (n = 18) had heard about brain death before their hospital visit, but only 8 out of these 18 decision makers had sufficient knowledge about brain death to understand their patient’s condition, 78% (n = 63) of decision makers expressed a lack of sufficient knowledge about organ donation to make an informed decision, and 26% (n = 21) of the decision makers had family members, friends, or relatives who required, received, or donated organs and tissues. The results of decision makers knowledge about brain death and organ donation are shown in Table 3.

   3. Prior knowledge of deceased’s wishes.

      Most participants indicated that they were not aware of their relative’s wishes regarding organ donation. Only 5% (n = 4) of families knew the deceased’s wishes for organ donation. The wishes of the donor regarding eye donation were known to decision makers in 11% (n = 9) of cases.

4. Amid Organ Donation: Navigating the Journey

   1. Counselling

      The donation requester was the hospital’s transplant coordinator in 89% (n = 72) of cases. The number of relatives/family members present in the hospital ranged from 2 to 40 people with an average of 9 members present. However, the discussion with family members was limited to 5 on an average as the decision makers did not want to involve all the members in decision making process. The decision to donate was made after multiple consultations: Family members (n = 32), elders (n = 27), relatives (n = 19), friends (n = 10) and others. Counselling sessions before positive consent ranged from 1 to 10 sessions. The legal consent giver acted as the decision maker in only 33% (n = 27) of cases. The consent giver was not present in the hospital in 51% (n = 41) of the initial conversations, and telephonic consents had to be taken in 16% (n = 13) of cases.

   2. Decision Making

      The decision after the initial request was positive in 19% (n = 15), negative in 23% (n = 19) and 58% (n = 47) were undecided. Main factors that contributed to decision making were trust and convincing by the hospital in 30% of the cases, family consensus in 26% cases, and acceptance and understanding of brain death in 21% cases.

      The consent was given by: Father: 41% (n = 33), Mother: 11% (n = 9), Husband: 12% (n = 10), Wife: 33% (n = 27), and Son: 2.5% (n = 2)

   3. Disagreement and Apprehensions:

      Disagreement among family members was reported in 35% (n = 28) of the families, and 22% (n = 18) chose not to inform anyone due to the fear of disagreement. Among those who disclosed their decision, the overall sentiments toward donating organs were negative in 32% (n = 20) of the families.

      44% (n = 36) had no apprehension during the decision-making process, but 56% (n = 45) expressed apprehensions about disfigurement of the body (n = 25), social criticism (n = 23), organ trafficking (n = 22), fear of doing it the first time (n = 18) and confusion about status of death (n = 7)

      The motivating factors were understanding that the organ donated would enable someone to lead a better life by saving their life (n = 78), donor would have wanted to help others (n = 69), blessings (n = 54), and donors last wish (n = 1)

   4. Complexities After Written Consent:

      Even after giving written consent, decision-makers had second thoughts about organ donation in 48% (n = 39) of cases. The second thoughts were primarily due to: family members not accepting death/were hopeful/disagreement, fear of blame/social criticism/organ trafficking. 9% (n = 7) felt that their stay at the hospital will be prolonged due to organ donation.

5. Postorgan Donation: Reflections and Impact

   81% (n = 66) of the participants found it challenging to make the decision for donation. Of those who found the decision difficult, 65% also expressed that it would have been easier if the wishes were known beforehand.

   98% (n = 79) felt the decision was correct and felt good about it. Even the 2% (n = 2) who regretted it, wished they had consented for all the organs or eyes when given the option. Surprisingly, only 25% (n = 20) of the families had a discussion regarding organ donation after the donation.

   85% (n = 69) said their religion had no influence on their decision to donate organs.

   67% (n = 54) were satisfied with the patient care in the hospital, 29%(n = 23) participants encountered difficulties due to police formalities in MLC cases. It is noteworthy that 54% (n = 44) of the deceased lacked insurance coverage, and 33% (n = 27) faced challenges when attempting to claim insurance benefits.

   Few families did not share the decision to donate with others. 17% (n = 14) of the families did not inform anyone about organ donation. The decision maker/family thought that if they tell others, it may not be perceived well due to illiteracy, conservatism, and rural background. The decision maker/family thought that others may think that the organs were sold because of poverty to earn money. The decision maker/family felt that the time was not right.

   The families that shared the decision to donate with others, 48% (n = 31) of them received appreciation. 52% (n = 34) received both appreciation and negative feedback from family and people around them. The negative comments were that they sold organs for money (n = 17), they did the wrong thing (n = 13), the body should go whole and now it is empty (n = 6), cut on the body (n = 5). The other comments included statements like, the donor will be reborn without organs, soul will never find peace, the donors could not get the patient treated because of poverty.

   Many donor families, 86% (n = 70) wanted to meet the recipients and felt that there should be a provision for meeting them. 69% (n = 56) felt that there should be no financial incentive; however, 91% (n = 74) of the participants felt that needy families should be supported in some way, including employment, education, and health.

Table 1.

Sociodemographic characteristics

Donor Age				Decision Maker Age
Mean Age	33	17	33±17	Mean Age	38	11	38±11
	n	Percentage	n (%)		n	Percentage	n (%)
Above 18	66	81	66(81)	Gender
Below 18	15	19	15(19)	Male	69	85	69(85)
Gender				Female	12	15	12(15)
Male	60	74	60(74)	Education level
Female	21	26	21(26)	Illiterate	5	6	5(6)
Marital Status				Primary	5	6	5(6)
Married	40	61	40(61)	Middle	10	12	10(12)
Unmarried	26	39	26(39)	High School	13	16	13(16)
Reason for hospitalization				Higher Secondary	22	27	22(27)
*RSA/RTA	57	70	57(70)	Graduate	14	17	14(17)
Fall from Hieght	12	15	12(15)	Post graduate/Professional degree	12	15	12(15)
Others	12	15	12(15)	Relationship with deaceased
MLC				Father	16	20	16(20)
**MLC	71	88	71(88)	Mother	2	2	2(2)
**NMLC	10	12	10(12)	Husband	6	7	6(7)
Was deceased the bread earner of the family(Among the adult population)				Wife	3	4	3(4)
Yes	42	64	42(64)	Bother	10	12	10(12)
No	24	36	24(36)	Sister	4	5	4(5)
Dependents on the deceased if Any?				Son	16	20	16(20)
Mean	2(1-10)	2	2±2	Daughter	2	2	2(2)
*RSA/RTA	Road Side Accident/Road Traffic Accident			Brother-in-law	6	7	6(7)
**MLC/NMLC	Medico-legal Case/Non Medico-Legal Case			Others	16	20	16(20)

Table 2.

Location and religion

	n	Percentage	n (%)
Urban/Rural
Urban	23	28	23 (28)
Rural	58	72	58 (72)
Religion
Hindu	59	73	59 (73)
Sikh	17	21	17 (21)
Muslim	3	4	3 (4)
Sect	2	2	2 (2)

Table 3.

Decision makers knowledge

	n	Percentage	n (%)
Heard about organ donation and transplantation before?
Yes	61	75	61 (75)
No	20	25	20 (25)
Heard about eye donation before?
Yes	76	94	76 (94)
No	5	6	5 (6)
Do you know there is a law for organ donation in India?
Yes	14	17	14 (17)
No	67	83	67 (83)
Heard about Brain death before coming to the hospital?
Yes	18	22	18 (22)
No	63	78	63 (78)
If Yes, was the knowledge about brain death enough to understand your patient’s condition?
Yes	8	10	8 (10)
Did you have sufficient knowledge about organ donation so as to take informed decision?
Yes	19	15	19 (15)
No	63	78	63 (78)

Discussion

Understanding the perceptions of famlies is crucial for addressing misconceptions and promoting organ donation.[12] In the rural area, there was speculation that organs were sold for money due to financial constraints even when the statutory norms prohibit the monetary involvement.[13] Various factors, such as age, gender, education level and monthly income influence the decision to donate organs.[14,15] The age of organ donors at the time of death ranged from 3 years to 65 years, with a mean age of 33 years (±17 years). In a study on the organ donation process of brain-dead donors’ families in Korea, the mean age of donor was 43.7 years (±14.2 years).[5]

Majority of the donors 81% (n = 66) were above 18 years of age. Male donors constituted 74% (n = 60) of the total. In a retrospective chart review of brain-dead organ donors conducted at a tertiary care hospital in 2014-15, majority of donors were found out to be males.[16] Erika Yee et al.[17] in study on sex disparities in organ donation mention about most living organ donors being females (60%), but less than half of deceased organ donors are females (40%)^.

The average length of stay in the hospital was 7 days. Few studies have found out that length of stay at hospital was not significantly associated with donation decision.[12,15,18,19]

Trauma was identified as the main cause cause of death and Medico-legal cases accounted for 88% (n = 71) of the total cases. Jaffrey M. Singh et al.[3] found out that stroke or other neurologic diagnosis was the cause of death in majority (38.7%).

A 5-year study on registry data from a State in India showed that 79% of cases of organ donation were victims of head trauma/RTAs leading to brain death.[20] Victims of such events become medicolegal cases (MLC).[21]

Approximately 72% (n = 58) of the donors hailed from rural households. Similarly, a study on Organ Donation in Hunan Province, China found out that the rural households accounted for 83.3% decision makers[22] and Wenzhao Xie et al.[23] found out that rural residents accounted for 58% of the respondents.

In 52% (n = 42) of cases, the donor was the sole breadwinner for the family. In retrospective chart review of brain dead organ donors conducted at a tertiary care hospital in 2014–15, majority of donors were found out to be breadwinners of the family.[16]

The mean age of the decision makers was 38 years (±11 years). In a multicentre study, the mean age of surrogate decision makers was 54.5.[24] Males accounted for 85% (n = 69) of the total decision makers. In a study conducted in four hospitals in Melbourne, Victoria, between April 2012 and September 2013, it was found that the female decision makers were 65.3%.[25] In another study, it was found that decision makers (n = 481) in family were predominantly female (66.4%).[26] It may point to the differential power structures in the society.

15% (n = 12) of decision makers were confused about brain death. There was difficulty to understand brain death with experience of grief and shock.[27] The brain death of donors for organ donation may be denied or refused by families due to confusion by sudden situations.[28,26]

78% (n = 63) of decision makers expressed a lack of sufficient knowledge about organ donation to make an informed decision. More knowledge about organ donation leads to increased donation rates.[15,29] Magi Sque et al.[30] also noted that some families disclosed a lack of knowledge about the donation.

Most of the participants indicated that they were not aware of their relative’s wishes regarding organ donation. If the wishes of deceased are not known, it hinders consent to donate.[31]

In 89% of cases, transplant coordinators requested consent, and donation rates increased when trained OPO coordinators were involved. Educating patients on organ donation can help reduce misconceptions and improve donation rates.[12]

PCPs can educate patients about the organ donation and decrease misconceptions and increase donation.[32,33]

Decision making

It has been found out that decisions regarding donation were made quickly, with 55% of families stating they made their decision during the initial request.[26] In contrast, this study found out that the decision after the initial request was positive in 19% of cases (n = 15). Main factors for decision making included trust[19] and convincing by the hospital in 30% of cases, family consensus in 26% of cases and acceptance and understanding of brain death in 21% of cases. The distrust in the healthcare system does impact decision to donate significantly.[19] Huang et al.[22] described a framework of factors like personal factor, interpersonal factor and social and environmental factor that affect the decision of the donor families. The critical literature review on factors influencing a family’s decision to organ donation have mentioned significant factors like prior knowledge of the wishes of deceased, presence at the time of the donor’s injury, understanding of brain stem death procedure.[34] Since there is a lack of knowledge about the wishes of deceased in Indian scenario, that may be reason for the need to convince the family.

Disagreement and apprehensions

Disagreement among family members was reported in 35% (n = 28) of the families, and 22% (n = 18) chose not to inform anyone due to the fear of disagreement. Certain studies have found out that disagreement between relatives may occur when the wishes of deceased were not known, and it may lead to refusal to donate.[12,35,36,37]

Of participants, 44% (n = 36) reported no apprehensions, while 56% (n = 45) expressed concerns about disfigurement (n = 25), social criticism (n = 23), organ trafficking (n = 22), first-time fears (n = 18), and uncertainty about death status (n = 7). The motivating factors[27] included helping improve or save a life (n = 78), fulfilling the donor’s wishes (n = 69), blessings (n = 54), and honoring the donor’s last wish (n = 1).

Complexities after written consent

Even after giving written consent, decision makers had second thoughts about organ donation in 48% (n = 39) of cases. An integrative review has found that the initial decisions were rarely withdrawn.[38] Second thoughts were primarily due to nonacceptance of death/hopeful/disagreement in 49% (n = 19) of cases, fear of blame/social criticism/organ trafficking in 28% (11) of cases.

81% (n = 66) of the participants found it challenging to make the decision for donation.[18,27] Of those who found the decision difficult, 65% also expressed that it would have been easier if the wishes were known beforehand.[30] The most challenging factors were grief, shock,[27] and the stressful situation.

Influence of religion on the decision to donate

85% (n = 69) said that their religion had no influence on their decision to donate organs. Muthny et al.[39] also noted that religion is seldom mentioned as a reason for donation. On the other hand, various studies have found out that religious beliefs are important factors in the organ donation decision making.[31,40,41]

Strengths

1. Pioneering Indian Study: This research is among the first to examine donor family experiences and decision making in India, addressing a key research gap.

2. Comprehensive Perspectives: It examines organizational, psychological and social factors, offering a thorough view of the complexities in deceased organ donation decisions.

Limitations

1. Geographic Scope: Participants were exclusively from North India, limiting the findings’ applicability to other regions.

2. Socio-Cultural Variation: India’s diverse sociocultural landscape may affect decision-making processes, necessitating further research for a comprehensive view on organ donation attitudes nationwide.

This study emphasizes the critical role of public hospitals in promoting deceased organ donation (DOD), especially in rural areas. Raising awareness could improve attitudes and DOD rates. Since consent givers are often absent, a hierarchy may streamline the consent process. Elders, influential in Indian culture, are key to decision making. Organ donation choices are complicated by limited understanding of brain death, knowledge gaps, and emotional factors. Family insights can inform enhancements in education, policy, and practices to boost DOD rates.

List of abbreviations

Abbreviation	Definition
PMP	Per Million People
RSA	Road Side Accident
RTA	Road Traffic Accident
MLC	Medico-legal Case
NMLC	Non-Medico-Legal Case
ICH	Intracranial Haemorrhage
OPO	Organ Procurement Organization
DOD	Deceased Organ Donation

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.