Living organ donation

Living organ donation is exceptionally generous and altruistic, and has been repeatedly described as perhaps the most meaningful act that one human can carry out for another. While the impact of such an act can of course be incredibly rewarding on both a spiritual and emotional level, the potential psychological implications and consequences are often overlooked in the process of meeting exacting technical requirements.

Before surgery is carried out, much focus is placed upon the living donor – they receive considerable attention, they­ are well cared for and they have their needs met. After surgery however, the focus shifts and the experience of the donor can then be seen as insignificant in comparison to the healing and well-being of the recipient. For some donors – it is this sense of absolute abandonment that is more difficult to recover from than the physical wounds.

By making the deeply personal and selfless decision to donate, a donor is placing the needs of another above their own. As a result - whether consciously or sub-consciously - it can then become a challenge for them to talk without restriction about their own feelings or struggles for fear of making themselves a priority. The outcome of having nowhere or no way to outlet these feelings is often significant – in some cases developing into depression, anxiety, anger and even grief.

Organ donation is a magnificent branch of medicine that has generated new understandings of life, death and human ethics – and among all of this, it’s easy to forget that such an act produces incredibly strong emotions in all involved – recipient and donor.

This fact-sheet is for those who are considering donation, or who are, living donors - as well as for those around them who wish to provide support. It covers the basics of organ donation along with a detailed exploration of possible psychological effects and ways to combat, manage and overcome them.

What is living organ donation?

Organ donation is the procedure of donating organs or tissue to someone in need of a transplant, and may help to either save, or greatly improve the health and life of another individual.

Most transplants are carried out with the organs of a deceased individual who has given consent for this to happen during their lifetime (or consent is sometimes granted by next of kin after death) – but despite this huge act of kindness from so many – there are still significantly more people waiting for an organ transplant than there are suitable donors.

Organ donation facts

According to NHS figures, between the start of April 2011 and the end of March 2012, 3,960 organ transplants were carried out in the UK, thanks to the benevolence of 2,143 donors. In spite of this however, in November 2012 more than 7,593 individuals were still waiting for transplants.

This shortage of donors means that patients face a long wait before a match is found – a length of time that proves fatal for three individuals on the waiting list every day. 

It is because of this scarcity that an increasing number of people are choosing to donate organs when they are still alive. The motive for this in most cases is to restore the health and prolong the life of a person we love – a partner, a family member or a friend (though it is possible to give an organ to someone whom you have never met).

Living donation can only go ahead if both the tissue type and the blood group of the donor and recipient are compatible – but generally speaking the success and survival rate of organs from a living donor are on average, higher than those donated from someone who has died.

What organs can come from a living donor?

Though parts of various organs such as the lung, liver and pancreas can be transplanted from living donors, the organ most commonly given is the kidney. This is because it is possible for a healthy person to continue to lead a totally normal life with just one kidney.

As touched on briefly in the above, a kidney from a living donor will last longer (on average) than one donated by someone who has died. Research into survival rates shows that in transplants with a kidney from a living donor, 94% of recipients will still be alive five years after the transplant and 85% will still be alive ten years after the transplant. In contrast, in transplants with a kidney from a donor who has died, 85% will still be alive five years after the transplant and 61% will still be alive 10 years after the transplant.

It is statistics such as these in combination with the knowledge that the wait for a suitable donor is likely to be a long one, that leads some individuals to want, or feel compelled, to step forward as a live donor.

Parameters and assessment

The shortage of organs available for transplant worldwide has unfortunately fuelled the commercial trade of human organs. This practice is illegal in all countries, with the exception of Iran, yet the problem of trafficking is widespread and continues to grow. Attempts to legalise this procedure have been made by a number of countries – though have been consistently rejected – usually on the grounds that payment for organs is likely to take an unfair advantage of the most vulnerable groups in society, will undermine philanthropic giving and will further fuel profiteering and human trafficking. The topic is certainly the subject of much debate.

Here in the UK, the Human Tissue Act 2004 and the Human Tissue (Scotland) Act 2006 provide the legal background for guidance. Currently, live donations are regulated and overseen by the Human Tissue Authority (HTA), who ensure that:

• no donors are pressurised to donate an organ
• no financial exchange is made for the donation (as mentioned previously, this is illegal).

Becoming an organ donor

When we hear that someone we love is suffering and at risk, and we know we might be able to do something which could reduce and minimise their pain – it may seem like an easy call. You shouldn’t however, underestimate the magnitude and ripple effect of the decision you are about to make. After all else is considered, you need to make sure that you are 100% comfortable with your choice.

If you are considering becoming a live donor, consider the below.

Physical and practical considerations:

• Would the donation impact you financially? You should check with your employer to see if you are eligible for sick pay for the time you are off. If not, consider your potential loss of earnings and the impact this may have on yourself and your family.
• What is your profession? Some branches of police, fire and military departments do not accept individuals with one kidney for example. Will your decision to become a live donor impact your future career prospects or direction in any way? You should also think about and investigate your health and life insurance coverage and whether this may increase your premium.
• Do you have a physically demanding job or are you physically active in your spare time? Often, post-transplant it is recommended that live donors avoid certain sports that pose a high risk of collision, in order to avoid damaging the remaining organ.
• Are you a healthy weight? If you are medically ‘overweight’ you may be asked to shed excess pounds before the transplant can take place.
• Are you located near to what will be the transplant centre where the donation will happen? If not, consider the logistics of having to travel to a distant centre. How much will travel expenses, accommodation etc. cost you during this time?
• Do you have personal obligations that will still need to be carried out whilst you’re in recovery? For example, even something as simple such as the day-to-day care of your young children could become difficult.
• Are you a smoker? If so you may be required to quit before the donation can take place.

Emotional considerations:

• What are your personal feelings towards organ donation, and do you feel you are armed with enough information to make the decision?
• What are the personal risks and benefits?
• What is your relationship to the recipient? If for example, you have a fraught relationship with the person to whom you are considering donating, it is important not to develop unrealistic expectations that your act of kindness may improve the situation.
• What will you feel like should the recipients body reject the organ?
• How will you feel if the recipient is not as grateful as you had hoped and this in turn, puts strain on the relationship – will you be able to cope?
• Do you feel that you could handle the post-transplant recovery, which can often be painful? Post-op, depression and anxiety may also develop. Are you prepared both emotionally and financially to cope with this and seek psychological therapy if the need arises?
• Do you have a strong support network in place? During this time you will require both practical and emotional support, do you feel that those around you could offer this, or will their attention potentially shift to the recovery of the recipient?

Before the surgery takes place, you will need to prepare practically and emotionally for both the donation and the recovery period. This is not a decision to be taken lightly, so if you’re unsure of anything you may benefit from discussing your thoughts and feelings with a qualified counsellor or psychotherapist. Talk therapy provides you with a unique opportunity to share your inner most thoughts and concerns about becoming a living donor in an environment completely free from judgement. Whilst a professional therapist will not be able to issue specific advice on the ‘right decision’, the process will allow you to explore the situation, moving you towards what you feel to be the right decision for you.

The psychological impact of organ donation

Whilst of course the physical recovery of live donation is likely to result in a level of discomfort, the potential psychological impact should not be overlooked. Post-operation, live donors may be more vulnerable to the following:

• acute stress disorder
• anxiety
• anger and hostility
• depression
• disappointment
• grief
• post-traumatic stress disorder (PTSD).

It seems both incongruous and unfair that such a selfless act intended to benefit another could have a negative impact on the donor, yet this is what happens in a number of cases. Common reasons for the development of psychological problems include the following:

1. A sense of abandonment
   A sense of desertion is relatively common in living donors, after the attention placed upon them before the operation shifts to the well-being and recovery of the recipient after the operation.
   
   
2. Grief 
   Donating an organ is not like giving away a treasured possession or lending someone something precious, you are giving away a part of yourself forever. Occasionally, a sense of losing the ‘whole self’ can trigger a period of grief, like a woman might grieve after a mastectomy or an individual might grieve for a lost limb. 
   
   
3. Painful recovery
   If the surgery and recovery are more painful and prolonged than anticipated, this can set in motion a domino of further concerns. If an extended period of leave from work is required for example, this can lead to both financial strain and feelings of resentment towards the recipient. 
   
   
4. Adverse outcome
   Unfortunately, not all transplants are successful and the body may reject the organ, or the organ may fail. If the recipient does not regain their health, or if they die, feelings of failure, grief, sadness and anger are likely to set in.

How can counselling help?

While the body is healing for the first few weeks after the operation, it is perfectly natural to feel fatigued and lower than usual. However, if these feelings prevail and begin to intensify over time to the point where your ability to function is significantly impaired, it may be that these symptoms are indicative of a larger problem. 

If you are concerned about your emotional well-being and have recognised that your symptoms are beginning to impact your daily life, it’s time to ask for help.

Counselling is a form of talk therapy that can provide living donors with extra emotional support and an opportunity to voice their inner most thoughts in an environment free from judgement.

Donating an organ is a life changing experience that is bound to generate a number of complex emotions that are difficult to cope with alone. A counsellor or psychotherapist will provide you with that much needed support, and will help you to explore and understand your feelings to allow a way forward.

Making the right decision

If you are in the early stages of researching the pros and cons of becoming a living donor, speaking with a counsellor could help you to balance both the practicalities and emotional factors to ensure the right decision is made. This can be an extremely stressful time, reinforced by feeling obliged to conform to the pressure and expectations of family and friends without addressing your own needs.

Counselling at this early stage can help you to ensure you are making the best and most well informed choice for you.