The dream is very real

The quest for a Child:         Counselling

INTRODUCTION

"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" (Human Fertilisation and Embryology 1987). The Warnock Report also recognized the need for counselling (Warnock Report 1987). But what is Counselling? " It is above all a way in which the counsellor provides a means of resolving issues and there by understand what goes on inside people, and how internal factors can stand in the way of change" (Jacobs 1987). Counselling tries to isolate factors, to bring them into the open so that we can understand our emotions and be comfortable with our decisions. It never actively seeks to provide answers, but is there to help individuals and couples to find their own solutions and respects their decisions. It is a 'process' by which we can help those in distress explore and understand the circumstances and pressures which affect our lives. "It is an approach which seeks behind the obvious...it tries to reaching a more satisfactory adjustment to their particular situation, and it requires time and space to achieve the Environment for this to take place."

It is above all a way in which the counsellor provides a means of resolving issues and thereby reaching a more satisfactory adjustment to their particular situation, and it requires time and space to achieve the environment for this to take place. Patients suffering from infertility face many choices which may be affected by the attitudes of their immediate family, the society and culture within which they live, religious beliefs, and by their own attitudes and anxieties. The essence of good counselling is to enable those seeking help to make their own decisions, to "meet them where they are and not where we think they ought to be". Some of their pressures and worries may be unrelated to their actual treatment (i.e. other areas of their lives - those may need to be addressed as well.

Treatment, which may suggest donor gametes, embryos or surrogation, will need particular care, sensitivity, and attention. All couples for whom donor gametes may be necessary should receive independent counselling. Counsellors will need time to explore the implications for the couple, the future of the family, the fact that the child is of a different genetic origin to either or both parties, the ethnic or religious background, the legal situation - now clearly defined under the Human Embryology & Fertilisation Act (1990).Sufficient time and space must be allowed to enable all parties to face the realities of donation. Patients will need help in understanding the nature of confidentiality ... should they tell other members of their families ... should they, or must they, tell the child the nature of its conception ... will the law require them to tell the child (regulations under the Act do not allow identifying information to be disclosed) ... secrets are difficult to hold and many couples find that bearing secrets interferes with the "openness" which they seek in their relationship ... the child might find out indirectly, more as a result of what is not said rather than what is and that could be hurtful ... should donors be anonymous ... or is it acceptable that brother can donate to brother, sister to sister, or friend to friend.

THE SCALE OF INFERTILITY AND THE DISTRESS

Infertility is a major health care problem which has very definite physiological, psychological, and sociological implications. The World Health Organization defined infertility as "a failure to conceive after unprotected intercourse for a period of one year". A significant number of these will still fail to conceive after two years of unprotected intercourse, and it may be several years before a couple realizes that a real problem exists. It has been estimated that between 5 and 9% of couples of child-bearing age in the United Kingdom have a problem in having a baby. Some estimates suggest that this might mean 40-80 million worldwide. Very often their General Practitioner may well have suggested they keep on trying...try this...try that...is the usual recommendation from G.P and well meaning friends. What may have seemed 'convenient' in the early days of their relationship now becomes a nightmare. "When are you two going have a baby ?" is a question they dread and try and avoid so much so that they will shun social events to protect themselves from distress. The prayers in the wedding service for the "gift of children" and the injunction to be "fruitful and multiply" are remembered with bitterness. Couples suffering from infertility are continually reminded of their situation. Each month when the woman returns to menstruation is a sharp reminder that yet another month has gone by...there are only 13 chances of conception in each year assuming a menstrual cycle of 28 days, less if her cycles are longer.

The daily measurement of a woman's waking temperature - used as an indicator for the day of ovulation - becomes a sickening chore they dread. Our whole society is based on the family unit. Simple tasks which we take for granted become painful - almost every shop is stocked with goods for the baby or young family; the major store proudly display their `back to school' reminders with displays of school uniforms, badges, satchels and useful kits for the classroom; the infertile couple is excluded from this ritual. On one side of the shopping mall is 'Mothercare' on the other a 'Early Learning Centre'. They dodge the prams and push chairs; watch with envy the shopping trolley with the small child sitting at the back; they see the neighbors washing lines sagging under the weight of nappies, small socks and underwear; they watch their friends fill the car with all the paraphernalia that goes with a visit to the seaside or a day with grandma. The infertile couple are left out - they are on their own. The stigma of infertility often leads to stress and tensions within the family. They avoid their close friends. It can lead to mental disharmony, to marital and sexual problems, divorce and in some cultures to ostracism from the wider family unit. The suffering is very real. A couple who have experienced infertility and the eventual relief that 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 the 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." [2]

The average G.P has little time or expertise to provide practical help to the infertile couple. Advice 'to be patient' only prolongs the agony until the time comes when they are too old to consider adoption and the likelihood of successful treatment at specialized clinics is becoming lower. The menopause seems just around the corner and fears that 'she will run out of eggs' or that if a pregnancy does occur the child will be abnormal are only too common. Hopefully society will be more aware of the scale of infertility that G.P's will refer couples for expert help earlier than in the past. It is not uncommon to meet couples who have been 'trying this and that' for 10-15 years - some even longer. Some recent pages in the pages of 'Child Chat' the newsletter of the support group Child had these comments from couples suffering from infertility [3]:-

"Although it is mid-October, suddenly everybody is talking of Christmas, the shops are stocking up on and displaying their Christmas goods. For us Christmas is a very painful time and brings with it a feeling of dread. It only seems to heighten your childlessness. Although you enjoy buying and wrapping presents for the children of friends and relatives, a voice inside you is screaming - `It isn't fair...we should be doing this for our own children"

Sometimes it is the reaction of society which shows a fundamental misunderstanding of some of the problems. We find it difficult to understand that someone who has had a child can be infertile now. The letter continues:-"Infertility is a difficult subject to discuss at any time, but there is a certain understanding for those who never have had children. When I tell people that I am infertile they cannot understand because I already have one child. When I explain the circumstances and that I am desperate to have another child, the usual reply is 'At least you do have a child - you should be thankful for that'. This gives me tremendous feelings of guilt for even wanting another, when some couples have none at all."

What we cannot tell from that letter is the reason for her 'current' infertility. It is possible that there is now a failure to ovulate or that the condition of the fallopian tubes has deteriorated. Perhaps she has developed antibodies to sperm or perhaps she was sterilized, now regrets it because her husband has died or she has remarried. Perhaps the problem is not on her side at all but on her partner’s side - poor sperm or even none at all.

Whatever the reason it is clear that conception through intercourse appears impossible and her distress very real. But given limited resources within a state funded health service someone may have to decide on priorities....that doesn't mean we leave her without help - counselling is just as important for those who have reached the 'end of the road' as for those who do not know who to turn to for help. Another couple has expressed feelings of guilt for wanting a second child as brother or sister to one born as a result of In Vitro Fertilization - IVF. Their guilt is not because they want a second child but because they feel they would be depriving the existing child by bringing it up as an `only child'. They had repeatedly tried further attempts at IVF without success. Their guilt, that they have failed the existing child, is in danger of being transferred onto that child. They are concentrating on their weakness rather than on their strengths. Infertility can dominate the lives of the infertile. One person confessed:-

"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 me".

Many have found that their relationship with other couples is under strain; their friends have become pregnant when they themselves have failed ... how can they continue with the friendship with the awkwardness which exists when they meet ...do they avoid each other, or skirt around the problems ...often the greater anxiety is with the lucky couple and the unlucky ones can't understand why the are being avoided, or vice versa. Some couples are able to cope with their infertility, come to terms with it, support each other and remain solidly together. Other have less strength in their relationships and find that they cannot be 'unified' in the absence of a child.

"Individuals, who during their younger years have seen their future selves not only as husbands or wives, but as parents, have to make tremendous psychological adjustments to their infertility. They face not only a loss of self as the kind of person they would have become, but loss of image as a family, and with it the kind of life they would have led". [4]

The new reproductive technologies which have resulted from the work which led to the birth of the first test-tube-baby on July 25th 1978 have raised new hopes for the millions of infertile couples around the world. In this country alone it has been estimated that a million couples of child-bearing age suffer from infertility. It is not just the `High-Tec' methods of treatment, such as IVF and GIFT which have benefited from this technology. A better understanding of the processes of human reproduction has meant that many of the simpler methods, such as timing of intercourse, artificial insemination, and induction of ovulation using hormones and other drug therapies, have all improved. Bourn Hall Clinic was founded by Patrick Steptoe and Robert Edwards in 1980 on the site of a Tudor Family Hall. Initially the wards, theaters and laboratories were in a maize of 'Porta-Cabins' but in 1988 the new clinical block and renovation of stables and cottages were completed. Since its foundation more than 5000 babies had been born as a result of IVF at Bourn Hall and over 300,000 worldwide.

In the United Kingdom there are only a few clinics treating patients under the National Health Service and that means long waiting lists and selection because of limited resources - over 1900 couples are waiting for attention at one clinic alone and will have to wait four and a half years to be seen by a consultant.. Several other clinics within district general hospitals are able to offer treatment with patients paying a contribution towards the facilities and some area health authorities and GP practices are beginning to contract the treatment of a limited number of NHS (National Health Service - UK) patients at private clinics - but that is the tip of the iceberg. Most patients therefore will have to pay at least a proportion of the costs of treatment - this may vary from £350 to as much as £2500, and in some cases the cost of hormones and drugs may add a further £600 to the bill. This inevitably means that treatment for many people will stretch their limited resources - often beyond their means. This adds an additional burden to their anxiety and distress.

Where health care resources are scarce difficult decision have to be made – that will inevitably mean that some treatments are available in some areas and priorities will differ. That does not help the plight of the childless. There seems to be little justice when termination of pregnancy may be funded whilst those who desperately seek a child are denied care unless they are will to bear the heavy costs themselves.

In the USA many healthcare insurers will not cover fertility treatment – it may depend on the attitude of the individual State. Justice and equity suggests that all should have equal access to medical care but this would mean stretching limited resources beyond what many might feel is acceptable. Each New announcement in the press or on television brings hope to many but for many others it will also potentiate their distress. The availability of treatment may have come too late for them, they have already reached menopause; they may not be able to afford it; or they may have doubts about whether such treatment is ethically or morally acceptable - the 'lobby of religions' frequently has a direct or indirect influence on their anxiety.

Counselling can help individuals and couples to make adjustments to their life styles, help them maintain the strength in their relationships and equip them to make the choices which are right for them. It can also help them to empty out all those feelings of anxiety, hate, anger, and dissatisfaction which can so easily build up in each of us. Sometimes it is enough that there is somebody who has the time and understanding and who is able to listen effectively - to allow the emotions to pour out. At other times counselling in particular areas may need particular counselling skills and counselors will need sufficient humility to know when we should refer couples to somebody with more experience. A person who knows where to seek that help can be a very valuable member of any team treating those who are infertile. At the same time if counselors have managed to develop a good relationship with a couple it may be more effective for the counselor to seek advice than to refer the couple onto yet another person.

"Counselling is a key element in the provision of any infertility service...counselling should be distinct from discussions with a doctor of any treatment he proposes and should be carried out by somebody different, preferably by a qualified counselor" [5]

The Warnock Report [6] emphasized the need for counselling when they said in their comments to the UK Government:

"We recommend that counselling should be available to all infertile couples, and third parties, at any stage of the treatment, both as an integral part of the National Health Service provision and in the private sector. We recognize that there may not be sufficient counselors trained in this field at present, but feel that it is possible for counselors in other fields to adapt their skills to deal with infertility".

This paper may help those with experience in counselling methods to understand the clinical and scientific background to the infertility and to help those who do have the working knowledge of infertility to understand the role of counselling in this highly emotive area. The parish priest, teacher, social worker, family doctor and other community welfare workers are in a unique position to assist in the counselling role particularly when a couple has to come to terms with their childlessness. At the same time clinicians should not feel that there role is threatened by the involvement of the counselor.

This paper may help all who are concerned with infertility to understand the problems which infertile couples face and equip them with sufficient insight to join in that counselling role. We will often need to take on the care of those for whom treatment is not possible or for whom treatment has failed - failure is still more likely than success. Support will be needed to help them adjust to the realization that they have done everything in their power in exploring all the possibilities. Perhaps the time has come to enable them to concentrate on other aspects of their lives - but that will not be easy. The attitude of the Roman Catholic Church has done little to help in this respect and many other areas we shall find a similarly absolutist approach to the treatment of infertility:-

"Sterile couples must not forget that `even when procreation is not possible, conjugal life does not for this reason lose its value. Physical sterility in fact can be for spouses the occasion for other important services to the life of the human person, for example, adoption, various forms of educational work, and assistance to other families and to poor or handicapped children" [7]

Although that comment seems to show a lack of compassion and understanding there may be times when we as counselors feel we need to help infertile couples come to that realization, that there is more to life than infertility. Treatment, or further treatment, may not be the right solution. Recently I was involved in counselling a couple who had asked to review their situation. They had asked for an opportunity to talk over their lack of progress with myself as counselor and with one of my clinical colleagues. Neither of us made any attempt to influence their decision - we didn't know at the time whether our time together had been useful or not - that is not until we received this comment:-

"I have decided not to go ahead with the treatment offered to me. Since our meetings I have thought long and hard, talking with family and friends - frequently hopelessly muddled. I believe I have reached a resolution with which I can live, my decision is a positive and a life-enhancing one involving a recommitment to my work as a teacher, and a channeling of my energies towards a strength rather than a weakness. Should I become pregnant I would adapt accordingly - meanwhile there is work to be done." [8]

That decision clearly did not come easily but the outcome for her was one which she was comfortable and one she could apply with confidence. A successful outcome does not necessarily imply successful clinical treatment. The role in counselling is to help people process their emotions and to arrive at a situation with which they feel comfortable and with which they can live a full life. We need to continually remind ourselves that we are treating "people who are infertile" rather than just "treating infertility". That distinction should underline the point that care goes beyond clinical treatment; that must mean a concern for the whole welfare, with all the stresses and strains that their infertility imposes upon them. Often they will bring with them other concerns which maybe a direct result of their infertility or be totally unrelated to it: these too must be our concern if and when they come to the surface.

Counselling can be the means which will enable people to uncover those emotions which we all try to hide and which give rise to dissatisfaction and distress. And at the same time counselors must be aware that they can add to the burdens by imposing on others anxieties which do not already exist. Counselling must be informed to be effective and can easily become a hindrance and waste of time if it is uninformed or used without a thorough experience in counselling skills and an up to date knowledge of reproductive medicine But what do we mean by counselling ? The term counselling is used in many different contexts. It is often taken as meaning "I asked for their consent" or "I told them the facts". These are certainly a vital part of the 'patient's rights' which certainly include education, support, and information and which is frequently well catered for by nurses, nurse counselors and other health-care professionals who come into contact with the patients. Those roles, while being important, are I believe quite different from the role of counselling. Yet it is highly probable that the counselors will need to ensure that these particular needs have been adequately catered for since a considerable amount of distress is grounded in an inadequate understanding of the facts. Counselors also need to have an independence which may sometimes mean that they must pursue the "cause of the patients"; take, if you like, their side in the pursuit of their 'peace of mind'..

"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 the less obvious and less acceptable feelings and thoughts which contribute to 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." [9]

We all have to learn to listen more carefully so that we can help others more effectively. Counselling can only be really effective when we have heard the needs of each individual cry...there are no rigid formula to follow...each cry will be different...each approach will be individual, and a careful watch for body language may provide a valuable clue to the direction, or change of direction, which must be adopted.. Counselors within a clinical situation must be a part of the team so that they can listen to both patients and staff; they should be respected by that team so that they can play their part in formulating new protocols as new advances are made. At the same time it is vital that the counselor keeps him/her self informed and up to date. It is only by informed counselling that we shall be able "seek behind the obvious". At one time there was little that a childless couple could do to seek effective help – the new technologies have changed that. In the past the cause of infertility was always assumed to the fault of the woman. That too has changed. We now know that male factor infertility is the biggest single cause of infertility. But that does not imply impotence. Childless women often share their problems with other women but few men want to share their problems with other men - his infertility has been associated with impotence, particular in some parts of the United Kingdom. In some cultures childlessness is considered to be grounds for divorce. In many cultures it is the woman who is blamed even when tests have clearly shown that there is a male 'factor' present.

Progress in the treatment of infertility has meant that we can tackle problems which seemed insurmountable just a decade ago. It has raised alarm bells in our society! Is technology is moving ahead too fast? We cannot ignore the concerns shown by different groups in our society and we must be careful not to dismiss lightly the concerns of those who differ from our own - their concerns are often transferred onto the couples who are seeking our help and we may need to help them uncover those concerns. We will need to use a pragmatic approach which puts the modern technology into perspective without forgetting the dream which infertile couples experience. For some those dreams will be realized but for many the dream will not come true. Our care must be for them all not forgetting those for whom the treatment has been successful but who may still need support and counselling. REFERENCES

(1) Tim Appleton, Counselling in Assisted Conception; An analysis of counselling 768 patients between December 1988 and August 1991(2) Hugh Henderson; adapted from a letter to the Daily Telegraph June 6th 1985.(3) Child Chat - Issue No 42. The magazine of CHILD, 367 Wandsworth Road, London SW8 2JJ(4) Dr. Cecilia Brebner, Psychiatrist, quoted by Thomas Prentice, Science Correspondent of The Times, April 8 1986(5) The Government White Paper "Human Fertilization and Embryology"; A framework for legislation. Presented by the Secretary of State for Social Services. cm259 HM Stationery Office, November 1987(6) Report of the Committee of Enquiry into Human Fertilization and Embryology; Chairman, Dame Mary Warnock DBE. Presented by the Secretary of State for Social Services. Cmnd.9314. HM Stationery Office July 1984(7) Pope John Paul II, Apostolic Exhortation Familiaris Consortio 14:AAS 74 (1982) 97(8) Comments from a patient after counselling.(9) After Michael Jacobs in "Still Small Voice", SPCK, London

The Psychology and Counselling group of ESHRE (European Society for Human Reproduction and Embryology) are in the process of drafting guidelines on Infertility Counselling. A group of 16 experts from around Europe and one from New Zealand, have met twice to work on this project. The first meeting was in Brussels towards the end of 1999 and the other in Berlin in February 2000. The report is in the final stages and will be presented to the executive committee of ESHRE towards the end of the year. It is hoped that it will be available over the internet

Tim Appleton March 2000/2005