Make it happen, We will wait

The moment their daughter stepped out of the bus to cross the road, she was hit by another bus, and the vacation turned into a tragic nightmare.

She was rushed to PGI Chandigarh and admitted in the ICU, but CT head scan revealed that she had suffered severe head injuries which were beyond repair. Once that was clear, the Intensivist approached family members and explained the situation to them. He told them their daughter was brain-dead and that her condition was irreversible. There was no hope.

After giving the prognosis to the family members about the condition of the patient, the intensivist made a call to me (the transplant coordinator) and asked me to counsel the family members about organ donation. So many people out there have so many questions about what happens at this point. What do you tell them? What does the family have to do? What is involved? How long with the process take?

To give you some idea of what is discussed at this point, below is a synopsis of the dialogue I had with the father of the girl.

Coordinator: (After introduction with family members): Have you and the family understood the condition of your patient?

Yusuf: Yes Madam, the doctor has explained to us that my daughter is brain-dead and there is no chance of survival. She is maintained artificially on ventilator. Without ventilatory support she is no more and she can be kept on ventilator till her heart stops.

Coordinator: Do you have any further questions that I can answer?

Yusuf: Madam, are you sure that my daughter is dead or she is in coma? Who knows some miracle will happen and she will wake up. Please do not stop her treatment and try your best if anything can be done to save her.

Coordinator: I am sorry to say but she is not in coma she is brain-dead. There is no treatment for brain-death available in the whole world. Brain-death is death and there is zero percentage chance of her recovery. Please don’t worry as the treatment is not stopped at any point in the hospital even though we know that her prognosis is poor.

Yusuf: Madam, please you suggest us what can be done in this condition?

Coordinator: There are three options which are available for you. First, if you want to wait like this while she is on ventilator till her heart stops, you can wait. We will do our best to keep her alive. Once her heart stops, we will prepare her death certificate and body will be send to mortuary for post-mortem which will be done in the presence of investigating officer and then will be handed over to you by investigating officer only.

Second, if you want to take her home in this condition i.e. LAMA (leaving against medical advice). We will not stop you, but no death certificate will be provided in that case to you by our hospital as patient is not declared dead. Patient will be discharged with LAMA summary. Patient may pass away on your way to home and you have to get her declared dead and get death certificate from municipal corporation. Moreover, if you want to take accidental claim, then that will not be possible unless you get her post-mortem done.

Your third option is that you can consider helping other patients who are not able to lead normal life due to organ failure by donating your daughter’s organs. You can give several people a second chance to live through your daughter. Organ donation can be done only if she will be declared brain-dead else her treatment will be continued as such.

Yusuf: I want to know that if doctors know that she is dead then why she is kept on Ventilator?

Coordinator: It is not ethical to remove the ventilator or life support before declaring her
dead. Unlike natural death, there is separate procedure for declaring brain-death. A committee will be formed by Medical Superintendent of the hospital, which comprises of four Doctors for brain death declaration. The committee will perform two sets of tests, six hours apart. First set of testing is for identification of brain-death and second testing is for confirmation of brain-death.

Yusuf: After declaring her dead, will she be removed from the ventilator?

Coordinator: As per the Transplantation of Humans Organs Act (THOA), we can only remove the life-support after brain-death declaration, if family members are willing for organ donation. Else she will be kept on ventilator as long as her heart beats.

Yusuf: She is my daughter Madam, why cannot you hand over her body directly to me instead of handing over to investigating officer? What if we do not want post-mortem and do not want to take her LAMA?

Coordinator: Yusuf I know how you are feeling right now, but this is medico-legal case and it’s the rule to hand over body to investigating officer and body will be released from hospital only after post mortem. There is no other way out. Post-mortem is a legal document to know the cause of death. Even if you want to file a case against the bus driver and want accidental claim, in both cases, post-mortem report will act as evidence. If you want to take her LAMA, you can it’s totally your decision.

Yusuf: Can you please suggest us what can be done?

It’s entirely your choice. You can consider organ donation. Once she will be declared brain-dead, and you give your consent for organ donation, there will not be any hindrance to the legal proceeding of your case.

Yusuf: That is the most difficult decision Madam. We want to go for brain-death declaration but for organ donation we are not ready yet?

Coordinator: It’s totally your decision and we respect that. We can arrange for brain-death
Declaration and if in case she is declared brain-dead you can make decision about whether you want to go for organ donation or not with your family members.

Yusuf: How long will this whole procedure take? From brain-death certification to organ donation?

Coordinator: Brain-death will leads to several physiological changes in the body. There will be loss of temperature control, increase in urine output which leads to hypotension (low blood pressure) and increase in sodium levels. First we need to correct all these and only then can we declare the brain-death. Temperature correction and blood pressure correction will take few hours but if sodium levels will be too high, it may take a day or two.

After all the corrections, brain-death certification will be done which will take another six hours. But if the team will not be able to declare her dead in the first testing, like she will not be able to tolerate tests due to hemodynamically instability, then they will abort the first Committee and they will revisit again after 24 hours of observation. If she is declared brain-dead and you are willing to donate her organs, then we will call the recipients and matching will take another 10 to 12 hours.

In case we need to share her organs with other hospitals then it will add on to another few more hours. Organ retrieval takes around 6 hours if multiple organs are involved. In total the whole procedure may take three or four days or less depending on how the patient does.

Yusuf: Why are these corrections in the body necessary if doctors know that she is dead? Why can’t you just declare her brain-dead?

Coordinator: For declaration of brain-death, the patient should have normal temperature, normal blood pressure and sodium levels else she will not be able to tolerate the tests to be performed for brain death declaration. It will be unethical to sake the life of your patient just for performing these tests. Moreover these corrections are necessary to keep the organs functioning in case you make your mind for organ donation.

Yusuf: So whose permission to do you need?

Coordinator: As per law, in case of major (age above 18 years) next of kin whosoever is available in the hospital can give consent for organ donation in presence of one witness. But in case of minor (age below 18 years) one parent must give his or her consent on Form No. 8 of the THOA Act, in the presence of two witnesses. The organs including corneas and other tissues are mentioned in the form and only those organs and tissues that you tick on, will be donated. Your written consent for donation will be taken only after brain-death declaration.

Yusuf: Who will the organs go to?

Coordinator: Organs will be allocated as per the waiting list of the hospital. If the recipients will be available in our hospital then we will call our recipients as per our waiting list. In case we do not have recipient in that blood group, we will immediately put those organs for sharing at the regional and national level.

Yusuf: Madam, I want to know how early my daughter’s body will be handed over to us as our family members in Uttar Pradesh are getting anxious about her condition, and we need to inform them so they can come here for last rites?

Coordinator: Our team is trying their best to do all the corrections as soon as possible but we cannot give you the exact timings. Let us proceed with the first brain-death certification. As I have already told you that sometimes committee will not be able to declare brain-death due to various reasons then again you have to wait. We will keep you informed but we can’t commit the timings of handing over body to you. We know it’s difficult but please bear with us if you can. If you can’t then we understand fully.

Yusuf: If you will hand over the body in the evening then how we will manage with our rituals?

Coordinator: In that case you can keep the body in the mortuary in our hospital and we will release it early morning the next day so you can perform all the rituals on time. In case you are planning to take her body to Uttar Pradesh, embalming can be done so that it will not smell and body will be kept for 5 days.

Yusuf: Madam, does donating organs interfere with the legal proceedings of the case?

Coordinator: Organ donation will not interfere will the legal proceedings of your case. As this is medico-legal case, a police NOC will be obtained to make sure that organ donation has nothing to do with cause of death.

Yusuf: Thanks madam for providing us with all the information. Please arrange for brain-death certification and till the time we will make our decision for organ donation.

After 48 hours, Tarmeen was declared brain dead and her father agreed to donate her organs to save other lives. It took us two days for sodium correction and there was no recipient for heart and liver at PGIMER Chandigarh. The national Nodal Agency NOTTO, looked around the country for other recipients and found them, but unfortunately the recipients at other hospitals later backed out. This whole process took another 24 hours. On fourth day, we were able to retrieve the kidneys and save two lives. We handed over Tarmeen’s to her family, whose kindness and patience had overcome their sense of heart-breaking loss.

Her father later told me that through the entire time he felt that his daughter was sending him signals to go a head with her organ donation, and he fully coperated with us through out the procedure. He told me clearly, “Madam, make it happen, we will wait.”

We have published a new article on our blog, “Make it happen, We will wait.” by Rajinder Kaur.

“Is she going to make it doctor?” We hear this constantly from bereaved families who go on to donate the organs of their loved ones. What do families in these terrible times need to know about their choices? And what can they expect if they go ahead with the donation?