Organ Donation made simple: A user-friendly guide

What is the need for such a guide?

Even though the majority of people in society are considered educated, there is a notable lack of awareness regarding the different types of organ donation. This extends to even some individuals working in healthcare. Discussions on the topic require not only a basic knowledge of anatomy, physiology, surgery, medical ethics and law, but also an understanding of the concept of brain death. Lack of knowledge makes a person vulnerable to making wrong assumptions, wrong statements, and, eventually, wrong decisions.

This article provides a comprehensive overview of organ transplantation in a convenient question-and-answer format, with numerous references linked for further exploration.

Why is organ donation important?

Several conditions like diabetes, hypertension, viral infections and alcohol abuse result in progressive failure of important organs such as kidney and liver. During advanced stages of organ failure, medical therapy is of limited benefit. Not only do they experience a poor quality of life, their life expectancy is also significantly reduced.

Despite extensive research over the years, the creation of fully functional human organs in a lab is not yet feasible. As a result, organ replacement from donors is the standard of care worldwide.

An estimated 250,000 people require a kidney transplant in India, of whom only 5% received an organ in 2022. Despite a 27% increase in overall transplant numbers compared to the previous year, the total number of deceased donor kidney transplants that took place in India in 2022 was only 1589.

Where do they get organs from?

A healthy organ can be obtained from:

A healthy person who is willing to donate and is compatible

A person who has experienced brain death but whose organs remain viable due to artificial support. Additionally, organs can be obtained immediately from an individual whose heart has just stopped.

Thus, the two types of organ donation are:

Living donor

Deceased donor (cadaveric) - either from brain death or cardiac death

What is cadaveric (deceased donor) transplantation?

As the word cadaver evokes imagery of a corpse, there is plenty of misconception about cadaveric transplantation. Cadaveric donation does not mean breaking into a mortuary and stealing or cutting organs out of a dead body.

In a person who has recently experienced brain death, internal organs can stay in good condition as long as blood circulation and oxygen delivery to the tissue are maintained through artificial means. In a person whose heart has just stopped, it is possible to retrieve organs really quickly, before ischemic damage occurs.

When the organs of a deceased donor are surgically removed by a team of doctors in the operation theatre, transported and transplanted into another person typically on the same day, it is called cadaveric organ transplantation.

The recipients could be located several hundred miles away, hence the urgency in transporting.

The entire process must be completed within the short time window, while the organs are still in good condition. A delay in organ retrieval in brain-dead individuals can cause organ damage due to hemodynamic instability, characterized by unstable blood flow and blood pressure.

What organs and tissue can be transplanted?

Organs that can be transplanted include heart, lungs, liver, kidneys, pancreas and intestine. Transplantable tissues include bone, skin, cornea (part of the eye), blood vessels and heart valves. Thus, one deceased organ donor can save several lives.

How long can organs be kept viable outside the body after removal from the donor?

The duration depends on the organ. A kidney can be kept for 24-36 hours in a suitable preserving medium and environment outside the body. It is progressively shorter for the liver (about 12 hours), lung and the heart (4-6 hours).

When is a person considered dead?

This would have seemed like a silly question 100 years ago. People died when they were no longer breathing and their heart had stopped. This is called cardiac death.

But now, with the arrival of machines and cardiopulmonary resuscitation (CPR) techniques, these cannot be taken as a sole criterion for death any more. Therefore, the traditional definition of death has been expanded worldwide to include brain death alongside cardiac death.

The brain controls all higher functions and processing, while the brainstem is the seat of automatic processes necessary for life such as breathing and regulation of blood pressure.

The current definition of brain death refers to the irreversible loss of all brain functions, including the brainstem. Once the brainstem has permanently stopped functioning, the person will not be able to regain consciousness - even with prolonged use of a ventilator.

An easy way to remember this is:

Death = cardiac death or brain death

Brain death = death of brain + death of brain stem

Most developed countries accept brain death as a definition of death. In India, this definition is used mainly in the context of cadaveric organ donation. Nearly all deceased solid organ donations in India occur following brain death rather than cardiac death.

But how can the heart still be beating if a person is dead?

The heart derives its external nerve supply from the brainstem, which helps it beat faster or slower according to the body’s needs. But the heart also has a certain amount of autonomous function. Even after the brain and brainstem are dead, the heart can go on for a while, provided some conditions are met. This can be compared to a car’s headlight that can continue to work for some time even after the engine has suddenly died while running.

The heart has its own pacemaker and electrical circuitry, but is heavily dependent on oxygen supply. Therefore, in a person who is brain-dead, if oxygen supply is maintained, the heart will continue to beat at a basic rate from some time - even though no signals are arriving from the brain.

When such a person is continuing on a ventilator and other support measures, the heart will continue to work for a few hours or even a few days following brain death, depending on the individual case. However, there is no possibility of the person waking up because the brain is already dead.

It is during this limited time-window when it is possible to donate healthy organs to other people. Although a tragic time for the patient and the family, this is also an opportunity for one person to give the gift of extended life to several others.

Anyone can register as an organ donor at NOTTO (National Organ and Tissue Transplant Organization) or state registries such as KNOS (Kerala Network for Organ Sharing) and print out a donor card. Discussing this with family members will help them give consent if and when a compatible situation arises.

What are some common scenarios, where internal organs can be donated after death?

Death is an unavoidable reality, but this doesn't mean that organs must be wasted each time it happens. Deceased donor organ donation is the chief source of organs for transplantation worldwide.

Many socially responsible people are registered organ donors, as shown on the donor card above. But at the time of death, they might not always be able to donate their internal organs, for several reasons.

Let's explore three typical scenarios of death that aid in understanding the organ donation process:

Scenario 1: Respiratory or cardiac illness at home

When an individual with respiratory or cardiac disease stops breathing while at home, brain death occurs within minutes. The lack of oxygen leads to rapid and irreversible damage to brain cells. In such cases, since the person does not receive artificial breathing support, their internal organs also sustain damage and quickly become unsuitable for donation. Thus, even if they had previously expressed their intention to be a donor, solid organ donation does not occur. However, it is still possible to donate tissues such as the cornea of the eye.

Scenario 2: Severe stroke or head Injury leading to brain death at hospital

Consider a situation where a person suffers a severe stroke or head injury and is admitted to the intensive care unit (ICU) for specialized care. In the ICU, the individual receives artificial breathing support from a ventilator. Despite receiving medical treatment, if the person eventually suffers brain death, their internal organs could remain viable (functional) for a limited period. In such cases, organ donation is possible, but only after obtaining consent from the family.

Scenario 3: Cardiac arrest while at hospital

Donation immediately after cardiac death (DCD) applies to situations such as cardiac arrest in hospitals where revival is not possible, or when treatment measures are withdrawn as per the wishes of terminally ill patients or their families.

Widely practiced now in western countries, DCD has played a crucial role in reducing organ wastage following death. It is specifically utilized in situations where the criteria for brain death are not met, but the patient's heart has irreversibly stopped or is anticipated to stop. Consent from the family is required.

Nearly half of deceased donors in Scotland in 2022 were DCD. In the US, the percentage of DCD increased from 13% in 2011 to 30% in 2021. Utilization of DCD in India is extremely limited due to various factors.

In the US, when a driver’s license is issued, it is specified whether the person is an organ donor. This facilitates organ donation in the unfortunate event of a fatal motor vehicle accident, where the person succumbs after reaching hospital. Such measures minimize wastage of internal organs.

This graph shows the marked variation in organ availability between countries. Higher number indicates greater efficiency of the country’s transplant program in providing organs to its citizens who need them.

How does India compare with western nations?

In 2022, 70% of kidney transplants in the US were from deceased donors, compared to only 17% in India. The deceased donor rate for India is extremely low at 0.86 per million population, compared to over 40 donors per million in the US and Spain. This indicates that developed countries are able to utilise their available resources for their own citizens better than India.

This graph shows a 75% increase in deceased donors over a 12-year period in the US. Among the two categories of deceased donors, donation following cardiac deaths (DCD) has doubled in just four years, contributing more to the total rise. If the US had relied on donation following brain death alone, progress would have been slower. By contrast, nearly all deceased donations done in India are following brain death.

Within India, there is substantial variation between states. For instance, in 2022, Telangana’s deceased donor rate of 5 donors per million was 12 times greater than Kerala’s 0.4 per million.

This graph shows the difference in availability of organs for the population in various states in India. Increasing deceased donor transplantation ensures that more organs become available for those in need. Some western nations have over 40 donors per million population - indicating that their program is more efficient, minimising wastage of precious organs.

What is the difference between coma, persistent vegetative state and brain death?

When a person remains unconscious due to a problem with the brain, it is called a coma. Brainstem may or may not be affected. It can occur from brain damage due to stroke, trauma, infection or metabolic abnormalities.

The outcome of a case of coma varies depending on the underlying cause. While some individuals may fully recover, others may not regain consciousness or have limited recovery. In rare instances, coma can progress to brain death, where all brain function irreversibly ceases.

A small number of individuals with coma may transition to a persistent vegetative state (PVS). This is characterized by wakefulness without awareness, where they may display sleep-wake cycles and open their eyes, but do not show signs of conscious awareness or meaningful interaction with the environment. PVS is a special situation where the upper part of the brain is not functioning, but the lower part or the brainstem remains alive and functional. The brainstem regulates basic processes such as heart rate, breathing and sleep-wake cycles. Consequently, they are able to breathe on their own. With proper nursing care and nutrition, they could persist in the same state for months or even years.

A scenario where this could occur is when a person attempts suicide by hanging but is rescued midway through the attempt.

Persistent vegetative state is not to be confused with brain death. The term brain death applies only when both the upper and lower parts of the brain have ceased functioning permanently, a common cause being severe head injury.

How is brain death determined?

There are clinical tests that can be carried out to confirm brain death, as described in the linked article. The apnoea test is done to verify that the person is unable to breathe without a ventilator. Some of these tests cannot be done on all patients due to technical reasons.

Brain death must be confirmed by a team of four expert doctors of specific designations. Government regulations have periodically updated both the guidelines and the composition of the team involved in this process. This is to prevent unnecessary delay in the transplantation process, in case doctors of specific designations are unavailable.

What are some of the difficulties with cadaveric donation after brain death?

The process of certifying brain death entails bringing in expert doctors from different locations. This involves disruption of their regular work and routine. Having to do this twice in six hours can be quite a task to coordinate.

The organs are removed from a brain-dead patient by a team of doctors in the operation theatre. This is done after obtaining consent from the next of kin, and following the prevailing Government protocol at that time. Unlike living donor transplantation, this process requires extraordinary coordination. Specially trained staff are brought in. Multiple surgeries that are planned for that day for other patients might get cancelled - due to the elaborate procedures that must happen exactly like clockwork. If the organ is damaged or if there is a delay before or after reaching its destination, it cannot be used by the receiving patient.

Coordination is crucial not only within the donor hospital but also among multiple other locations where listed patients are evaluated and prepared. Additionally, their respective doctors remain on standby in their hospitals, ready to receive the organ. Like a chain reaction, a single surgery performed in the donor's hospital sets off a sequence of near-simultaneous surgeries across several hospitals throughout the state.

The number of deceased donors has been dropping in Kerala.

Kerala’s decline contrasts with the steady growth of deceased donor transplants in India.

How has Kerala done in cadaveric organ transplantation?

The heroic effort surrounding cadaveric transplantation was a regular feature in the news media before 2017, when Kerala was relatively active in deceased donor transplantation. The process came to a near-halt since then. Only 14 cadaveric donations occurred in 2022 in Kerala, compared to 194 donors in Telangana, 159 in Gujarat and 154 in Tamil Nadu.

 

In Kerala, the number of road accident deaths was 4287 in 2016. In that year, a total of only 72 people donated their organs -- following brain death from all causes. Despite earnest efforts in promoting road safety, the number of road accident deaths remained relatively unchanged at 4317 in 2022. Unfortunately, in 2022, the number of deceased organ donors declined even further to just 14 individuals.

This indicates that only a tiny fraction of transplantable organs is being given to those who need them. Although not all such cases are suited for organ donation, the fact remains that a substantial number of valuable organs were ultimately wasted, without benefiting those in desperate need.

While its cadaveric donation has declined, Kerala is ranked fourth in the country behind Delhi, Tamil Nadu and Maharashtra in the number of living donors.

This graph shows the difference in availability of organs for the population. Developed nations try to utilise most of their resources, while organs are wasted elsewhere.

What led to this decline?

A major reason for this drop is that some people in Kerala tend to be suspicious about cadaveric organ donation, and therefore doctors are increasingly reluctant to discuss it, fearing that they will be misunderstood. In the midst of negative news, misconceptions and allegations, even the most genuine intentions can be misinterpreted. Movies themed on scientifically unrealistic scenarios worsen the situation. There are instances of next-of-kin of brain-dead patients being falsely accused of ‘organ trade’ by other relatives, simply because they agreed for deceased organ donation of their loved one.

In healthcare decision-making, it is alarmingly easy for a well-intentioned action to be twisted or manipulated into a convincing malicious narrative. A recent example is the powerful anti-vaxxer movement in some western nations during the pandemic, which even included a handful of doctors. The loss of public trust they caused was so destructive that many people refused to believe even their own doctors’ recommendations about COVID vaccines. As a result, several vulnerable individuals remained unvaccinated, leading to numerous preventable deaths.

When cadaveric organ donation declines, it results in the wastage of numerous organs. Each wasted organ represents a missed opportunity to provide a second chance at life for a patient with end-stage organ failure. In other words, every wasted chance of cadaveric donation pushes at least three people with end-stage organ failure closer to the brink of death.

Living donor transplantation.

Living donor transplantation is just like any other planned surgery. After a thorough medical evaluation, a healthy person donates an organ or part of an organ to another person. Unlike cadaveric donation, there is no need for coordination between hospitals, arrangements for quick transport or elaborate certification processes by repeatedly bringing in experts from different areas.

For a living donor, there is also the small but significant risk related to anaesthesia and surgical procedure - as is the case with any other surgery. This additional risk is not applicable in cadaveric donation because the donor is already brain dead.

While it is fairly straightforward for a close relative to donate an organ, a significant number of donations come from people who are not apparently related. This is called altruistic donation, which is legal in India and elsewhere. Altruism is defined as the genuine desire to help others without expecting personal gain. Importantly, compensation for donating organs is not allowed by law in India, and is punishable by section 19 of the THOA 1994. At the time of writing, living donors cannot receive financial compensation in any country, Iran being the sole exception.

Unfortunately, there is concern about unrelated living organ donation being done for illegal exchange of money - under the guise of altruistic donation. In this context, unethical middlemen could exploit vulnerable people facing financial difficulties, persuading them to sell their organs for financial gain. The demand for living donors naturally increases when deceased donation declines.

Summary

Organ donation is an essential requirement for any society. Every possible effort must be made to ensure that individuals in desperate need of organs receive them as early as possible, according to prevailing Government norms.

From India’s perspective, both cadaveric and living donor transplantation need to increase in numbers. The immediate priority however is to revive cadaveric organ transplantation. Correcting widespread misconceptions is an urgent first step in this direction.

(Dr Rajeev Jayadevan is past President, IMA Cochin, Public Health Advisory Panel, Kerala State IMA)