Ashwin S dons the role of a serious journalist and looks at a critical support system for society – Organ Donation. The process is complicated and misunderstood, and myths and traditional knowledge hamper its effective implementation.
We’ve all seen the frenzy and popularity surrounding blood donation, and even the pledging of eyes when a person passes away. However, very little is said about the other organs that can be donated. These have a greater role in providing a new lease of life to many.
India, being a land with a huge population, comes with its own share of health issues, with a large number of patients suffering from dysfunctional or problematic organs that require transplants. Sadly, there is a major mismatch in the number of organs available for donation and the number of organs required for transplant. Why is this happening? Let’s find out.
Challenges in obtaining organ donation consent
There are many reasons why there is such a dismal rate of organ donations in India. This ranges from simple things such as lack of awareness and knowledge that it can save lives, to certain religious concerns such as an expected delay in cremation, disfiguration of the body post-harvesting, fear that God may not accept a mutilated body into heaven and a lot more. Then, there is also the worry and suspicion regarding the misuse of the organs, and it being a money-making business for quacks (phoney doctors).
Also, even the fact that it is branded as transplantation becomes a hurdle according to Dr. Chinnadurai from Aster RV Hospital, JP Nagar. “In the US, it is called the ‘Gift of Life’ whereas in India we call it ‘Transplantation’. The word itself sounds scary and off-putting. While in India we have the Transplant of Human Organs Act, in the United States, it is known as the Uniform Anatomical Gift Act – Calling it a gift, and making it uniform, just makes the overall process feel more humane, which is what is required.”
Procedure for harvesting approval
While it may seem to be a simple task to harvest organs, there is, in fact, a comprehensive list of procedures to be followed. Dr Rajendra Kumar, an Intensivist at Aster RV Hospital explains this procedure for the benefit of our readers:
Barring certain live donations like a part of the liver, most organs can only be harvested from a person who has been confirmed brain dead. This confirmation has to be provided by a team consisting of the treating doctor, the Neurologist / Neurosurgeon, and the Medical Superintendent / Administrator.
The confirmation is provided only after several rigorous tests have been conducted to ensure that the patient has no hopes of recovery and that brain death has indeed occurred. This includes an Apnea Test and a Cough Reflex Test which should come out negative. There should be no response to a painful external stimulus, nor any breathing attempts. The pupillary response (Dolls Eye Response) should be absent.
Even if all the above conditions are satisfied and the patient is confirmed brain dead, the organs of the donor should be in a normal working condition for harvesting. In case there are infectious diseases within the patient, the organs cannot be harvested or transplanted. Only a trained ICU specialist (Intensivist) can perform the complicated procedure of organ transplants.
The Golden Hours
In case there is an approval for organ harvesting or transplant, care needs to be taken that the organs are harvested within 24-36 hours of the patient being declared brain dead, as they tend to be hemodynamically unstable and a lot of medical attention is required to ensure that nothing goes wrong with the organs that they have pledged to donate.
Once the organ is harvested, there is a maximum of 6 hours where the organ can be preserved, and hence the organ needs to be transported/moved to the transplant location immediately in ideal conditions. The sooner the organ is transplanted after harvesting, the better the chances of success, and the longer the life expectancy.
What organs can be harvested?
From live patients, a part of the liver and a single kidney can be harvested. This is due to the fact that the liver has a strong capacity for regenerating. In the case of kidneys, while there is no scope for regeneration in a live individual, the body has the capacity to survive on a single kidney, provided certain precautions are followed in the lifestyle of the donor.
In the case of brain-dead donors, in addition to liver and kidneys, the pancreas, heart, heart valves and cornea of the eyes can be harvested and processed for transplantation.
Leading the way
With over 18 organ donations in the past month, Aster RV Hospital in JP Nagar is leading from the front, as the highest number of organ donations from a hospital in a month. They have also been known to waive off charges incurred during harvesting on humanitarian grounds and as a part of their CSR activities. Dr. Chinnadurai who works as the Lead Consultant of Critical Care in the hospital has taken a personal interest and played a pivotal role in ensuring high numbers of organ donation. He has done this by personally convincing the family members of brain-dead patients to donate, as well as getting the required clearance from the police force in case of accident victims.
He says “While it is mandatory in India for the hospitals to inform the government regarding certified brain-dead patients, not many hospitals follow this rule, which is a sad trend.” Another concern that he has is with regard to delays in harvesting due to confusion as to who is the legal next of kin to sign the consent form and how to avoid issues from other family members who may not be keen on donating their loved one’s organs.
Key rules surrounding organ donation and transplants in India
While there are multiple rules and regulations with regard to the entire process, some of the key takeaways of the act include the requirement of family consent for brain dead patients to become donors and the consent form which needs to be signed by the next of kin. The term next of kin becomes a bit tricky, as in a tightly knit society in India, there can be multiple next of kin, each of whom can share a different view on organ donation. This has led to several cases where due to the delay in obtaining unanimous consent, the organs couldn’t be harvested in time.
Another interesting fact is that the doctors or the hospital is not allowed to share details regarding who the donor of the organ was, nor let the family of the donor know who has received the organ. While this may seem to be a weird thing, Dr. Rajendra Kumar explains that this is done to prevent extortion, feuds or unwanted emotional attachment at a later stage between the donors and the recipients. The same policy is followed in some countries in the West as well.
However, there have been instances where the recipients have put two and two together and managed to find their donors and thanked them profusely, and still to the day maintain cordial relations.
Dismal Figures
“In Spain, there are 40 donations that happen per million, whereas in India, the number is at a dismal 0.8 donations per million. In Karnataka, there were 84 donations in the last year, whereas in Kerala there were only 8 donations. This is hurtful, as there is potential for 4000-5000 donations in Karnataka itself. Even on the donation share front, while in Andhra Pradesh there is a healthy trend of 60% donations coming from the Government Hospitals and the remaining 40% from Private Hospitals, in Karnataka there is no donation from the Government Hospitals, and 100% of the organ donations come from Private Hospitals. In this regard, the MOHAN foundation is trying to spread awareness as much as possible. However, there are still many hurdles to overcome” laments Dr. Chinnadurai.
Not at all cheap!
The cost of harvesting organs from donors is usually borne by the hospital or through some agencies/schemes/CSR. However, the cost of a transplant is really high, with the recipients having to pay about 8 lakhs for a kidney transplant and about 20 to 30 lakhs for a liver transplant. In addition to this, there is a lifelong cost of immunosuppressant medication which would be around 3000 per month, more so in the case of Kidney transplant patients.
This could be a deterrent factor both in terms of donors, who may fear that they may have to bear the additional costs of harvesting, as well as recipients who may not be able to afford expensive transplants, and would rather stick to other temporary methods if available, such as dialysis.
Government Support
All the doctors who I spoke to acknowledged the fact that while it could be better, there is indeed positive support provided by the government and there is a willingness from their end to help with regard to organ harvesting and transplantation. Some of the doctors opined that the Tamil Nadu Government takes the highest and most personal interest in this regard.
In Karnataka, a body called Jeevasarthakathe is established under the Department of Health and Family Welfare, which helps oversee the entire process. They also have a facility where interested donors can pledge their organs online by visiting http://jeevasarthakathe.karnataka.gov.in.
“We function as the assisting body for organ donations in Karnataka. If a hospital has any requirement of organs for transplant, they contact us and we do the needful. In case we have an organ which is harvested and there is no need for the organ within Karnataka, we co-ordinate with the South Zone Regional Organ and Tissue Transplant Organizations (ROTTOs) so that in case there is a need in some other state, we can facilitate the transport of the organ. In case there is no need within the South Zone ROTTO, we co-ordinate with the national body, NOTTO who then look for organ requirements across the country.” said Dr. Kishore Phadke, MD, DABPN(USA) who happens to be the convener of Jeevasarthakathe.
Donor-Recipient ratio mismatch
In India, there is an extremely huge waiting list of patients looking for organs. As the organs cannot be pre-harvested and stored, it is a very long wait till they find the right donor. Multi-organ transplant recipients tend to get first preference, followed by patients who require just single organ transplants. In the case of single organ transplants, the recipient order is chosen by means of an alphabetical progression from the waiting list. On very few occasions, criticality takes precedence over this order. First come, first serve is followed in India, in line with the wait-listing policy, which most doctors feel is not always the right way, as there may be someone lower in the list for whom the specific organ is a better match, which would lead to greater life expectancy.
Improving awareness – The need of the hour
“It all lies in the mindset of the community and their reluctance to accept change. In the West, particularly in the UK where I have practiced for long, it is more of a culture there. There is a feel-good factor associated with organ donation, which is somewhat missing here.” opines Dr. Garud Chandan, Intensivist at Fortis Hospital, Bannerghatta Road.
On being asked if he thinks this scenario will change in the near future, and what steps need to be taken to ensure it, Dr. Garud Chandan says “This is indeed possible with increased support from the government, the media and the celebrities. We have time and again seen that people tend to respect and mimic their favourite celebrities. Even when the media does some campaign, for example, NDTV’s Greenathon or Cleanliness campaigns, we have seen such a massive change, there is a shift in the mindset of the people, they begin to feel that them being a part of this movement is something cool. That is what is required.”
Where there is a will, but no way
It has been noticed that although there are brain dead patients whose families are willing to donate the patient’s organs, there are many instances where they are unable to do so due to the lack of facilities. Take for example NIMHANS where the largest number of brain dead patients are admitted or brought in. Due to the lack of beds and an organ harvesting centre in NIMHANS, Bowring or Victoria, a lot of patients are asked to shift to some other hospital to harvest their organs. Considering the Bangalore traffic, there is no chance that the patient can be brought in within the golden hour and often passes away in the ambulance itself. Thus, a large number of organs that could have been harvested to save lives have gone waste.
Is incentivization the key?
To combat the low rates of organ donation, wouldn’t it be ideal if there was some concession or incentive provided? While it may seem the most sensible thing to do, most of the doctors I spoke to were of the firm opinion that it should be discouraged as it is unethical and may lead to misuse.
Most common transplants
As there are a large number of kidney failure patients and those undergoing dialysis in India, the kidney is the most sought-after organ for transplants. This is also boosted by the fact that this procedure is relatively cheaper compared to other transplants. The other most sought-after organs include the liver, heart, pancreas, and lungs, in that particular order.
Success rates and a story of challenge
Due to advancements in procedures, the success rates of harvesting and transplants have gone up, with over 80-90% success rates. Dr Garud Chandan recollects a challenging incident where a 17-year-old kid was declared brain dead and was hemodynamically unstable, but miraculously his team managed to stabilize the patient and harvested the kidney, liver and heart valve. By this procedure, two people ended up receiving kidneys and a new lease of life.
Situation in the United States
Speaking on the occasion of a workshop organized by Aster RV Hospital on the challenges in organ donation, harvesting and transplanting, Dr Prakash Rao, the keynote speaker who has facilitated over 8,800 lives (which amounts to almost 3 a day in his longstanding career!), also indirectly impacting the lives of 88,000 of their kith and kin, explained the situation in the US where he currently works.
“The organ procurement fee in the US comes up to 36,000 dollars per organ, so it is by no means a small amount. However, the presence of a robust OPOs network (Organ Procurement Organization) facilitates better allocation and utilization of resources. There are 58 OPOs, 269 transplant centres and 884 transplant programs in the United States. This is in stark contrast to India, where the numbers can be counted using the fingers on our hands. Although these OPOs don’t have regulatory powers, they do have a strong say in the way the government passes or implements acts and legislations.” He mentioned much to the awe of the doctors present there.
Dr. Prakash who works closely with UNOS (United Network for Organ Sharing) Organ Procurement and Transplantation Network feels that the message that the doctor is only trying to help and save lives is not communicated clearly in India, and hence the general apprehension towards organ donation.
In the US, however, there is an upper age limit for organ donation, wherein people aged 76+ are not eligible to donate their organs even if it is in a pristine condition. Even in other cases, the choice of receiving organs remains the call of the recipient totally, and the doctors can only suggest and provide advice. Dr Prakash says there have been times when people have rejected organs from older donors fearing lower life expectancy after transplant, and have chosen to wait indefinitely for an organ, while still undergoing dialysis or other procedures based on what organ needs transplanting.
The Infinite Loop
The process in the US is quite structured. If there is a brain-dead patient, the first call from the donor’s family goes to the Organ Procurement Organization. This is when the OPO takes over and co-ordinates the entire process. They sort out everything from calling the relevant hospital, processing the harvest and matching it to a recipient. This is made easier due to the fact that there is a robust IT network present, and a lot of things are digitized/automated.
In the case of patients in India, the first call from the donor’s family is made to the nearest hospital (which may/may not be a part of a government network like NOTTO (National Organ and Tissue Transplant Organization or a regional body like Jeevasarthakathe). The hospital then needs to co-ordinate with such organizations, who will provide contacts of other hospitals who require organs. Thus, this process becomes a lengthy and complicated loop, which can be detrimental considering that the organs need to be harvested as soon as possible from the donor.
Opt-in vs Opt-out
But then all is not hunky-dory in the US, as there are a lot of apprehensions about the Opt-Out system which they plan to implement, where every person above the age of 18 becomes a donor automatically unless he/she chooses to opt-out. This is prevalent in many other countries of the west including Spain, Austria, etc. There are fears or rather myths among the public that should one choose to become a donor, any visit to the hospital could lead to your parts being harvested without your consent. This is why many people refuse to sign their consent for donation.
However, seen solely in terms of figures, a voluntary Opt-in system in developed countries shows a donation consent rate of a meagre 12% or lower. In developing countries like India, this is much lower. In contrast, countries following the Opt-out system like Austria have shown a donation consent rate of 99.98%, even though it is considered as deemed consent.
Habits as opposed to health
While in no means promoting smoking or drinking, there have been instances as mentioned by Dr. Chinnadurai where successful transplants happened from donors who were smoking 20 cigarettes a day for 40 years and yet the lung was in a good condition, and people who have been drinking regularly for the last 30-40 years and yet the liver was in a good condition. This does open scope for donation among people indulging in these habits, provided they do stop these habits a few years prior to donation.
Organ Donation Concerns
While this concern isn’t quite applicable in brain dead people, there are always qualms as to why a living person is donating the organ. Whether it is truly out of an altruistic motive or whether there is a hidden agenda behind the donation, be it under the pressure of someone else, in search of money, in order to inflict self-harm, etc. In this regard, researchers in Germany have come up with and implemented a tool called the ELPAT donor psychosomatic analysis tool, which provides a detailed insight into the mindset of the donor. Unfortunately, something like this hasn’t quite been implemented in India as yet, but one can always be hopeful.
An unbelievable, moving incident
“What we do is quite powerful, the only challenge lies in communicating this to the layman, and that is where the true success lies,” said Dr Prakash as he began narrating a real-life incident that occurred at one of the summits he attended in the US. This may sound like a script from a movie, but read on!
“There was this summit on transplantation where a mother of a young US soldier who had lost his life in the Afghan War was present on the stage. One of the recipients who was also on the stage happened to narrate how he got a new lease of life thanks to the heart of a soldier who was serving the US Army. On hearing this, the lady began inquisitively questioning the guy as to when he received the transplant, which happened to be the same day that she had donated her son’s organs. She quickly put two and two together and realized that it was her son’s heart that was beating in the recipient. Meekly, she requested him if she could place her ears on his chest and hear the heartbeat, to which the recipient obliged.
On placing her ears on his chest and listening for a few seconds, she drew back, went to the mic and told the audience which was waiting with bated breath, astonished at what had transpired that she heard her son’s voice in those heartbeats, telling her – Mom, you can stop grieving now, for I am in a much better place.” Dr. Prakash continued “I kid you not, despite the entire hall being filled with top surgeons and doctors with a lot of experience, there was not a single person there that day without moist eyes, with every person in the room reaching out for a tissue.”
While incidents like this may be rare, it is undoubtedly a fact that by means of donating organs, you are giving a new lease of life to somebody struggling somewhere out there in the world, and this can only bode well for you. As they say – Karma is always watching!
The author would like to place on record the assistance provided by Dr Taranath Kamath, Critical Care Specialist at SSNMC Super Speciality Hospital, RR Nagar, Bangalore, and Stephen Pradeep Kotian, PRO, St Martha’s Hospital for their valuable contribution in terms of networking and reaching out to the relevant doctors for this article.
Dr Tharanath
Dr Stephen P Kotian
