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Harsha Deshmukh

Organ and tissue transplantation is one of the major medical success stories of our time. Well over a million people worldwide have had their lives saved or their quality of life improved by an organ transplant. One of the most important links in the process of getting organs for transplantation is obtaining consent for organ donation from the family. No matter how successful we are in identifying and maintaining donors, organs will be obtained for use only if the family agrees to organ donation. It is therefore necessary to plan this approach so that it proceeds with quality and consistency resulting in higher rates of consent.
Take into consideration the needs of the donor family. Initially they are tense about the outcome of the patient when he is in the ICU. Then they will experience extreme grief when they lose their loved one. When faced with the option of organ donation they have some doubts and concerns about the same. Recognising these different needs and responding appropriately is the challenge for the transplant coordinator. The short term as well as long-term success of this programme relies on this ‘family management’.
A trained transplant coordinator who may be a doctor, nurse or medical social worker must receive an early reference for all potential donors. This, provides suf?cient time, to build a rapport with thefamily and evaluate who in the family is the decision maker. It is important to continually provide the family with information on the condition of the patient so that they are better prepared for the death when it occurs. Finally when request for organ donation is made, whatever their decision regarding organ donation, this decision must be respected.
When brain death is con?rmed it is mandatory that the treating physician tells the family about it. Ensure that the person who has to give consent is there along with the person who is identi?ed as the ‘decision maker.’ Death must be conveyed unequivocally leaving no doubts or hopes in the family’s mind. Statements like - ‘He is almost dead.’ ‘his brain is dead but his heart is still beating.’ can be very confusing. Avoid words such as ‘life’ support. Refer to the patient in the past tense. Request for organ donation must never be made at this time. Give them time to come to terms with what has happened.

It is necessary to understand the stages of the grieving process that the family will go through. These are as follows -
  • Anger - they may be angry about delays in admission or treatment.
  • Denial - they may not believe that their loved one is no more.
  • Depression and
  • Acceptance.
    One must never make the approach for organ donation when the family is in anger or denial stage. After sometime when the family has come toterms with the death the transplant coordinator can approach the family for organ donation.
    Whilst talking to the family the following points can be kept in mind. Be empathetic. Tell them that you understand how they feel. Be a good listener and listen to all that they have to say, even if they are complaining. Understand that this is normal and do not justify or be defensive, just listen. Boost donor image by saying that the person must have been very helpful by nature, one who thought of others ?rst. Talk about those who can be helped (recipients) if they donate and if they had been in a similar situation, you would have helped them too. Tell them that this is an opportunity few people get - to be able to give life after death. Make them realise that others who have donated have found it gratifying. It gave some meaning to their own loss and so were able to overcome some of their grief.
    Allow time for them to consider organ donation. Help them to overcome whatever doubts they may have. They may doubt that a certain religion does not support organ donation. Explain that every religion encourages giving and helping others, and organ donation is exactly that. Reassure them that the organ retrieval will be done with full respect to the body and there will be no pain involved. If they agree to donate, keep them informed aboutthe organs that will be taken and the time it will take. Inform them about delays, if any. Make sure they are comfortable and help them until the time of discharge. However, if they do not wish to donate, gently ask them their reasons. Appeal one more time but then accept their decision. Respect their decision and help them until they are discharged.

    It is important that they leave on a positive note. Though they may not decide favourably this time,
    next time they may do so.
    Keep in touch with donor families and inform them about those who bene?ted because of them. Give general information like age and sex of the person, not specific information like name and address of the patients. This is meant to be confidential. If they wish to contact each other i.e. donor family and recipient it must be done through the transplant coordinator. Call them occasionally and check how they are doing. Offer grief counseling whenever they wish. Send them a death anniversary card to show that you remember and care. Honour the donor families on donor’s day which is celebrated each year on 30th November. They are the true heroes of this programme.
    Organ and tissue donation is entirely dependent on the altruism of ordinary members of the public. Their generosity must be welcomed and appreciated if we are to save lives and if we are to develop a world class service. We must build public confidence that the service is based on ethical principles and that their life saving gift is respected and received with gratitude.

    Abernethy and colleagues showed that 20 mg of sustained release morphine daily improved dyspnoea scores by 7-10%, without respiratory depression or serious side effects. The authors state that the use of opioids in the management of intractable breathlessness has been controversial.

    BMJ, 2003; 327 : 523.

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