This paper was first presented by Tim Appleton to a meeting "Clinical IVF Forum: Current views in assisted reproduction" heldin Manchester, March 1990. The papers were published under that title, edited by Phillip L. Matson and Brian A. Lieberman, published by Manchester University Press, 1990, pp93-101. It has been modified and extended for use on this website. It is offered in the hope that it might help both the psychologist/counsellor and the patient.
Infertility is a major health care problem affecting between 5 and 9% of couples of child-bearing age. The stigma of infertility leads to stress and tension within the family and often leads to marital and sexual problems, mental dis-harmony, divorce and a sense of isolation which is hard to bear.
A couple who have experienced infertility and the eventual relief that successful treatment brings wrote in a letter to the Daily Telegraph “The sorrow of infertility for a happy couple can be compared with the sorrow of bereavement. The ‘funeral’ starts when a couple first learns the results of tests which reveal that a problem exists. It continues with surges of hope that a miracle might happen. The sorrow is private, real, and often taboo; failure at any point is always painful.”1
The sense of failure already exists when a couple present themselves for treatment. They have been reminded of that failure daily as they keep records of temperature and the onset of menstruation is a cruel reminder that yet one more cycle has elapsed without success. They see themselves as being separated from their family and friends who do have children. Our whole society is based on the family unit. Shopping becomes a nightmare when the shops are geared to cater for the baby, the growing child, the school year. They cannot escape the sense of failure, they are left out - they are on their own. They have already failed in their own eyes- they are very vulnerable - and this sense of failure can dominate their whole lives. “Sometimes I just long to empty my head of all the feelings of hurt, resentment shame, anger and bitterness that seems to build up inside" said one patient.
We all have to cope with failure from time to time in our lives. Often failure is due to something we have done which results in things ‘going wrong’. At other times it is because we have failed to do something as effectively or thoroughly as we should have done. We may have failed our driving test, for example, because we pulled out in front of another driver who had the right of way or we failed because we hadn’t learnt the highway code. We can see where the fault lies and do something about it before the next attempt. Or it may have been plain bad luck because the examiner was in a bad mood. Whatever the cause it is probable that either we say it was bad luck, and that the chance of that happening again is slight, or we admit the fault and prepare for next time. Failure is transitory, and it is unlikely to dominate our lives. But there will be times when we may have to admit that we are not “very good at some things”; we learn to be realistic in our expectations.
Patients who present themselves for treatment for sub-fertility do have very high expectations. Many clinics have found that patients’ expectations of success are considerably higher than the success rates which were quoted at their initial consultation. There is a subconscious reluctance to admit that they might very well be among the unsuccessfully treated patients although it is still clear that failure is more likely than success. Headlines in the press “The Miracle Generation”, which heralded the bOOth baby born as a result of IVF at Bourn Hall Clinic, raises the expectations of those referred for treatment. A success rate of 15-25% means that the failure rate is 75-85%. Clinicians and nurses spend a lot of time trying to underline the high chances of failure. But the tensions are so high in those circumstances that couples don't hear everything that is said to them - we have all experienced the tension of the doctor's or dentist's waiting room and come awy trying to list all the points which have been made, and frequently we miss many of them.
No one likes to think about failure when embarking on a new venture. There can be very few medical programmes where emotions are so hi hi charged and where the failure rate consistently exceeds the success rate. It is the duty of all concerned with assisted reproduction programmes to be realistic with themselves and with their patients, and to provide clear written information which can be referred to after a consultation. Many couples will not be able to cope with the prospect of failure and we should help them to consider the alternatives - including adoption and coming to terms with childlessness. Treatment can fail at many stages - induction of ovulation, oocyte retrieval, fertilization, cleavage, implantation. Failure is potentiated by all that IVF demands of the person - financial, emotional, fear coupled with courage and determination. The Human Fertilisation and Embryology Bill before the UK Parliament recognised the need for counselling, and the Government White Paper3 which preceeded the Bill acknowledged the need for independent counselling:
“Counselling is a key element in the provision of any infertility service - it is distinct from discussions with a doctor of treatment proposed and should be carried out by somebody different.”
Both documents suggest that the prime role of couselling is to prepare couples for the treatment ahead, to discuss all the alternative available (including adoption), to ensure that they understand the implications of treatment with donor gametes and that proper consent has been obtained.
But Counselling must go much further than this; it should be a continuing process which starts before treatment is considered, is available throughout and extends beyond clinical contact. Michael Jacobs provides a useful insight into counselling when he says:-
“Counselling does not ignore the obvious, but seeks to reach behind it. It requires the giving of sufficient time to help a person in distress to uncover and reach behind some of the less obvious and less acceptable feelings and thoughts which contribute towards unhappiness and dissatisfaction, it is an approach which has isolated certain factors in caring relationships and stressed them, while at the same time played down other factors such as giving answers, expressing sympathy, or actively trying to change the circumstances which appear to contribute towards that distress ... it is above all an approach which tries to understand what goes on inside people, and how internal difficulties can stand in the way of change rather than looking at external factors or external solutions."
Counselling should be available to help couples through those times of failure and distress. Two of the most traumatic points of failure are failure in fertilization and the return to menstruation which results from a failure in implantation. Couples feel isolated, confused and helpless. Their first reaction is often to ask ‘what went wrong?’, and our reply may have to acknowledge “we may never really know.” But it does help to discuss their treatment with their clinician and with the climical embryologist who will be the only person who has seen the embryos and can explain their asessments. The idiopathic (unexplained) situation is always the most difficult to bear. Failure is often easier to bear when we can pin point a reason for that failure, if we are expecting it, or if we have been prepared for it. But it does help to hear where failure might have occured and that human reproduction on its own is very unsucessful when compared with animals. This means that the counsellor must be fully conversant and understand the science behind infertility. It's no excuse for the counsellor to concentrate solely on the psychology and to exclaim that they cannot cope with the science!
A couple’s second reaction may be one of grief, shame, anger or other emotion which may not express itself in words. There is often a very real sense of grief surrounding failure. In grieving a person needs time to lick over their wounds but within the confines of a crowded clinic many will try to suppress their emotions. Anger is often suppressed but comes to the surface in other ways. Sometimes the anger is directed at others because they feel inadequate; often it is directed towards the self - a feeling that you have let somebody down. A man who has just heard that the eggs had not fertilised said:
“I feel so angry at myself. My wife was the one who had to have all the injections, had to have the operation to recover the eggs - mine was the easy part - now I have let her down, I feel so angry.”
It may be tempting for the counsellor to shrug-it-off, to sympathise, when what we really need to be doing is to help them resolve their anger, even perhaps confront them with it. It is tempting to hold back when we should speak. Those involved in counselling may be tempted to withdraw when the patient may need that pain to be brough into the open.
Let us now look at some actual cases and experiences:
CASE 1: A colleague asked me to see a couple who felt that they might not be able to cope with the stres of the IVF programme. They had experienced a series of miscarriages. After listening to them for some time it became clear that they were ‘putting on a brave face’ for each other. Something I said brought floods of tears to the woman and a very obvious expressionof hostility from the man which nearly resulted in violence. It was the woman who restrained her husband and then both were able to admit that this was the first time they had allowed their grief to find expression, and that they needed to be able to mourn the loss of those pregnancies.
There will be many times when counsellors feel completely helpless. Patients might wonder why they should contact the counsellor - what possible good can it do? Is there something wrong with them which needs approaching a counsellor? What can a counsellor possibly do or say which will help a person in despair? One reaction is to talk too much in the hope that some ‘solution’ will present itself. It is perhaps at times like this when one is reminded of the saying “make sure that the brain is operating before engaging the mouth.” Just being there with a person in distress, waiting, being prepared to listen, sharing in that helplessness, may often be the best support we can give waiting together for the anxiety to drop.
I want to turn to the difficult question of coping with failure. We have already seen that it is much easier to cope with failure when we can see a definite reason for that failure, or when we see ways in which we can directly influence that situation by our own actions. It is that much more difficult to turn failure into success when circumstances are either beyond our control or where there is no clearly definable reason why, for example, treatment is classed as a failure. Much will depend on our perception of the word failure. That perception may well be very different in those who are supplying the treatment to the patients and in those who are being treated. Those providing treatment in assisted reproduction must be careful not to transfer their perception of failure onto their patients. What may be a disappointment to the clinician/scientist (and which may clearly affect their statistics) may be the starting point where a couple is able to move forward in a positive way even though the starting point is one of failure. A revue of the clinical experience, looking at the way in which a couple responded to the drugs, how the embryologist graded the sperm, seggs, embryos etc may give some clues as to how to adjust future treatments. It may help to look at some further cases.
CASE 2: A couple treated by IVF in a private clinic, could only afford one cycle of treatment. Three eggs were retrieved, all three fertilised and showed normal cleavage, and three embryos were replaced. Unfortunately a pregnancy did not result. They were obviously disappointed but some time later phoned to say that at least they knew that his sperm had successfully fertilised her eggs. They felt that they had done all within their limited financial resources, and they could now accept the situation and concentrate on their love for each other. They felt that they would have been unable to move forward if they hadn’t “given it all they could.”
It would have been very easy to start discussing the ‘next moves’ with them on day 15 when they had heard the hCG results - to talk to them about the statistical chances of success, that nature on its own only achieves a success rate of 25%, to suggest that it might be worth trying again, and so on ... when what they really needed was time to come to terms with the situation and someone who would listen and wish them well. I am sure they would always retain some element of regret, but it was a decision which they could live with.
There is often considerable merit in delaying decisions after experiencing failure. This is particularly so when a couple have just heard the results of a drastic sperm count, or that fertilization has failed; they need time together, to recover from the shock, before even contemplating the next step, particularly if this is likely to involve the use of donor sperm. A deliberate break enables people to talk things through in the privacy of their own surroundings and more often than not they will approach counselling having talked through most of these issues themselves and our task is one of re-assurance and re-enforcement.
CASE 3: A couple who had had 6 IVF treatment cycles, without any signs of success had made a remark in passing “If we are to continue we shall have to sell the house, and buy something smaller, to raise the money for further treatment.” It was at this point when I felt that a thorough review of the situation was required and invited them to meet on a Saturday away from the clinic, either in their home or mine. They chose to visit me, and in the event that was a ‘lucky’ choice.
After reviewing their previous cycles of treatment with them (and previously with a clinical colleague) it seemed to me that perhaps one partner was very much keener to continue with treatment than the other; I was still not sure which was the keener. After struggling for sometime I put it to them quite bluntly “Are you really keen to continue? When was the last time you really talked this over between yourselves? It seems to me that the drive to continue is much stronger in one of you!” I suggested that I should take our two dogs for a walk and leave them together for a while - hence the ‘lucky choice’ of venue, the dogs played a vital part.
On returning I was met with a smiling couple who put my mind at rest - he had been pressing her to continue because he felt that it was his duty to provide the financial resources to make it possible, while she was acquiescing because she felt that she should support her husband’s ‘determination’. Both were relieved to know that the other was fed up with continuing and wanted to “get on with the rest of their lives!”.
It would have been very easy to try to persuade them that there was no reason why they might not eventually be successful - for there was no clinical reason which obviously precluded that option. We can all quote instances when the reverse would be true; when we have been tempted to suggest that ‘enough is enough’; it’s becoming an obsession; that surely ‘ten’ attempts really was enough. Then something inside us (call it helplessness, intuition, a still small voice) made us keep our mouths shut and a healthy baby was born in the next cycle.
CASE 4: A couple who had been through several IVF cycles without a pregnancy had asked to have an opportunity to review their situation with a senior clinician and a counsellor. We both spent some time with the couple not knowing what their decision would be. After some months we received these comments from the woman: “I have decided not to go ahead with treatment ... since our meetings I have thought hard and long, talking with my husband, family and friends - frequently hopelessly muddled. I believe we have reached a resolution with which I can live ... it is a positive and life-enhancing decision involving a re-committment to my work as a teacher, and a channelling of my energies towards a strength rather than a weakness.” A strong reminder that we often receive strength after having struggled through weakness.
It is not often that I use my clerical background and to use biblical quotations but St Paul in his 2nd Letter to the Corinthians said:
“I am content with my weakness, and with insults and hardships, persecutions and agonies I go through.. For it is when I am weak that I am strong.”
The role of counselling is not to tell patients what to do but to help them process their own emotions by providing them with the time, space and a suitable environment. There are no easy answers, no quick panaceas.
CASE 5: A woman who had been through 4 IVF cycles without a pregnancy, phoned to say that they were not pursuing further treatment. They had found that they would never regret having tried and the experience had brought them closer together. They did not want IVF to dominate their lives and felt that they would try to adopt a baby or toddler who could benefit from the stronger love they now experienced. They did not feel that they had failed at all. No one can claim credit for decisions such as theirs except to hope that somewhere and sometime during our contacts with them we may have been able to help them to make their own decisions and it does not matter that we are unable to postively make that assertion or not.
On many occasions counsellors may only discover that they have been of some assistance some time later when a chance remark “I would never have continued if you had not helped me through that terrible time” encourages the counsellor to continue. At other times we will never know.
Sometimes our remarks may have stimulated anger.
CASE 6:A couple had been referred to me for counselling by the clinic involved and by their GP. The GP had suggested that perhaps the woman need perhaps the hlp of a clinical psychologist or even psychiatric therapy. I kept an ope mind.
However soemthing I said (and I am not sure to this day what!) made her exteremly angry - almost violent and she shouted and banged on the wall of my small room. I apologised and suggested that perhaps she needed stronger help psychologically than I felt competent to give and that I would be happy to refer her a colleague with more experince of psychological therapy. That made it worse and she stormed out of the room back to their car. Her husband apologisde and remarked "I don't think you will be seeing us again. I felt I had let them down and made my way to my own car only to find it was parked next to theirs and a heated discussion was clearly in progress inside that car. I crept away.
It took over an hour before they finally left and I was able to decently (or cowardly) leave.
About three weeks later I received a phone call in the evening at home. It was this very distressed woman. She introduced herslelf and ssaid "perhaps you remember me! I wont be pursuing any treatment. I just wanted to thank you" andshe promptly rang off.
We may not be able to adequately evaluate or quantify the effectiveness of counselling: we cannot judge its cost effectiveness, we will never be able to attach a “productivity figure” against that time we spend in meeting with people in distress. That should not matter. Common humanity suggests that we do everything in our power to help people in their distress, paricularly where it affects their whole life, even their health and certainly their relationships are put under strain.
1 Adapted from a letter from Hugh Henderson to the Daily Telegraph, June 6th 1985.
2 extract from a letter in ‘Child-Chat”#42, The magazine of the support group “CHILD”, 43 St Leonards Road, Bexhill on Sea, E.Sussex, TN40 1JA; Telephone01424 731 858
3 Human Fertilisation and Embryology: A framework for legislation. Presented by the Secretary of State for Social Services. Cmnd 259, Her Majesty’s Stationary Office, London, November 1987. The Human Fertilisation and Embryology Act became Law in 1990 and most of its provisions implemented in August 1991. It has since had several revisions
4 After Michael Jacobs in “Still Small Voice”, SPCK, London 1982.
Tim AppletonDecember 2000