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Why
Relatives say 'No' to Organ Donation
Dr Magi Sque
Senior Lecturer, School of Nursing and Midwifery, University of Southampton
‘As someone who is new to your organization I would like to say I have the utmost admiration for the things you do collectively and also for your ambitious targets. I wish you well!
I would like to address the current state of organ donation in the UK today and cement the importance of relative refusal against this background, what literature is available and why family members choose not to donate organs of their deceased relatives. Along the way I will attempt to offer some context and explanation of some of these reasons – human behaviour does not exist in a vacuum, but exists in a social context that in turn has historical roots. There are also issues about the definition of ‘death’ which appear to impact on the relative’s decision making ability, and issues about communication and care of families and patients in hospital.
The current waiting list for transplant surgery is 8000 with over 5000 of these waiting for a kidney transplant. During the UKT National Potential Donor Audit which was carried out between April 2003 and May 2005, it was established that 94% of families who were potential donor families were approached. This research showed that there was a 40% refusal rate across the UK for ventilated heart beating donors and this rises to 70% for the Afro/Caribbean, Asian and African population. This later figure is important because we know this population has a pre-disposition to high blood pressure and diabetes which can lead into kidney failure and this high refusal rate makes it harder to match for transplantation.
I am concerned that, although Rosie Winterton (Minister in the Department of Health) highlighted the need for more research into why relatives refuse permission for organ donation, very little research has actually taken place. Why is this? Well, I think most research takes place in the medical arena and perhaps this is why the psychological and social processes remain poorly understood. I also find that families that decline to donate are hard to access; records of them are not been kept, at least not prior to the UK Potential Donor Audit.
I have tried to pull together some of the main issues relating to this high rate of refusal to try to illustrate some of the strong common recurrent themes. The first and most important of these is where families have not known the wishes of the deceased. It appears that putting their name on the ODR is not always enough. Family discussion must also take place. Where family discussion about organ donation had taken place, and families are left confident of what is required of them, this changes the emphasis for relatives from having to make a decision to facilitating the wishes of the deceased.
We also know that where other family members are present this assists the decision maker, and that family conflict made things more difficult. Some families perceived the process to be mutilation of a body rather than an act of surgery and this runs in line with our natural culture that is intolerant of young death and abhors the mutilation of a body.
Families are necessarily approached about organ donation when their grief may be all encompassing and their thinking and concentration a problem. Also, in order to facilitate organ donation, relatives are asked to accept a death certified by brain based criteria – brain stem death as death. Brain stem death transcends society’s perception of death where a body is pale and cold. The potential donor, maintained on a ventilator, may not appear to be dead; they look rested, unscathed and warm, and their chest moves as if breathing. Not only are the relatives asked to accept the situation as ‘death’ but they are asked to agree to the removal of the very vital organs which maintain life.
In a 3 year study that we carried out for the British Organ Donor Society (BODY), the importance of communication and care was highlighted by one mother who chose not to donate the organs of her son.
She said ‘We had the most appalling seven days in hospital while he had surgery, no one was ever available to talk to us and on one occasion I saw the sister tell the surgeon that we wanted to speak to him and then saw him leave the ward. I had to ambush him in the corridor and he was just incapable of communicating. We just never knew what was going on – in fact I read about the diagnosis in a text book and learned more in 5 minutes than I had learned on the ward in 4 days!’
So to conclude, one possibility of increasing donation rates may primarily be a matter of the effort and enthusiasm of the health professionals involved, and their ability to illicit agreement from a bereaved family. We also need to think about the variables of the decision maker.
And certainly one of the things we found in the work that we did for BODY was that children were becoming increasingly involved in decisions about donation; certainly their opinions were taken into consideration and it was discussed with them and as yet we have no information about how children actually fit in with this world of transplantation, what does a child of 9 think about organs and transplantation? So there is a whole area of research that needs to be opened up; how in fact are children being involved in these issues and how does this affect the behaviour of the health professionals and other family members?
Organ donation, I feel, should be considered the choice of all medically appropriate individuals as part of good bereavement care. Something that we tend to forget is that out of the 600,000 people that die each year in the UK presently less than 800 will be organ donors, therefore the family who has organ donation discussed with them is unlikely to meet anyone else who has had that experience. So there are no role models for their behavior. We also need to look at the children and we need to further look at families of non heart beating donors. At the moment we have no current information about this in the UK.
We suggest that a National study to explore the reasons why relatives say 'no' to organ donation should shed further light on these important issues. Relatives need to walk away from the donation discussion feeling positive about their decision and knowing that if they had to do it all over again they would do exactly the thing. It is a responsibility of everyone working with the family to ensure that this happens whatever their decision about donation.
Question 1: Yes we need more organ donors but do you think that there is a case for doing this the opposite way around, whereby when children are born they have the option to opt out of donating organs? I believe in some countries it’s the norm that they will donate organs unless they have opted out the scheme?
Dr Sque: I certainly think one of the things we need to do is: to get children fairly early, we need to educate children about donation and, in some of the families I have worked with, they have given the donation because they had remembered that the potential donor as a child brought home a card from school saying they wanted to be an organ donor and this may be several years later that the mother remembers that this young person had wanted to be an organ donor.
Question 2: How do you feel about having two signatures on the donor card; the next of kin for instance? You’re saying that 10% of relatives don’t agree to donation and yet we are given to believe that if you’re on the National Organ Donor Register you should be allowed to donate. Also, I understand that under the Human Tissue Act next year relatives will not be allowed to go against the wishes of the deceased, but it will be a brave surgeon who goes against the wishes of a relative.
Dr Sque: In Ireland this second signature system already exists and I think this is a very good idea. The HTA actually says that a family has no right to veto the wish of the deceased, but as donation is not obligatory we are back in the same situation really.
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