Abstract
A good fertility clinic is about more than success rates, and a good fertility specialist has an understanding of fertility problems which goes beyond the clinical aspects of patient care. It is easy to overlook the patient’s perspective in the rush to learn about the latest evidence-based scientific developments in fertility treatment, but good quality patient care is not simply a matter of telling patients what you think is best for them and providing that service.
A good fertility clinic is about more than success rates, and a good fertility specialist has an understanding of fertility problems which goes beyond the clinical aspects of patient care. It is easy to overlook the patient’s perspective in the rush to learn about the latest evidence-based scientific developments in fertility treatment, but good quality patient care is not simply a matter of telling patients what you think is best for them and providing that service.
This is something that the UK regulator, the Human Fertilisation and Embryology Authority (HFEA), has recognised. The Authority’s 2014 Annual Conference titled ‘Putting the patient at the centre of what we do’ marked the start of a new strategy to ensure that the patient perspective played a key role in decision-making for the future. The HFEA’s plans include making patient views on their experiences at fertility clinics part of the ‘Choose a Clinic’ website tool which helps patients to find a clinic that is right for them. This means that the way in which patients’ needs are met by individual clinics and clinicians in the United Kingdom will become more visible and public.
Although national average success rates for in vitro fertilisation (IVF) in the United Kingdom have risen gradually from 14% in 1991 [1] to 25.8% in 2012 [2], the majority of individual treatment cycles are not successful and the best possible care for patients must involve supporting them through the realities of unsuccessful treatment as well as helping them to pregnancy. The value of emotional support was highlighted by a Danish study of more than 2,000 patients in 2003 which explored the importance of patient-centred care to fertility patients. It concluded, ‘A supportive attitude from medical staff and the provision of both medical and psychosocial information and support should be integral aspects of medical care in fertility clinics [3].’
In order to offer patients the best possible care, it is first important to understand how people feel when they arrive at the fertility clinic. In 1997 the UK’s National Infertility Awareness Campaign (NIAC), now known as Fertility Fairness, carried out a survey of 980 patients to try to find out more about their experiences of fertility treatment [4]. The results clearly show the emotional impact of fertility problems. Respondents had experienced a wide range of negative emotions, including tearfulness, depression, isolation, anger, inadequacy, guilt, shame and loss of libido. More than half of those who reported very negative feelings had also experienced elation and excitement at times, reflecting the ups and downs of fertility treatment, often described as an ‘emotional rollercoaster’. One in three said that their fertility problems had strained their relationship, and worryingly one-fifth of those who responded said that they had experienced suicidal feelings.
The NIAC survey found that feelings of depression and isolation were common to 94% of the fertility patients who responded to the survey. At Infertility Network UK, we regularly hear from patients that they feel lonely and cut off from their friends as a result of their fertility problems. As one female patient explains,
When we started trying, just a few of our friends had children, but by the time we were doing the IVF everyone had them, and some people had more than one. It wasn’t as bad for my husband, but I felt really excluded because all the other women were talking about things I didn’t know about, and going to places you couldn’t go without a baby [5].
For couples who find themselves unable to conceive, the world around them can appear completely family-orientated and they may feel that it is hard to escape reminders of what they cannot achieve. It can colour every aspect of life, as one female fertility patient explains:
When I wasn’t getting pregnant, I used to wake up and the first few seconds you think, “Oh it’s a sunny day,” and then all of a sudden the reality would hit you, “hang on, I am still going through infertility.” It was desperately painful and really depressing when everyone around you was pregnant and having babies [6].
Certain times of year such as Christmas, or family events like christenings, can become particularly difficult to deal with. Fertility patients may also put off doing things as they hope that they may be pregnant soon – so applying for a new job or promotion, going away or moving house may be delayed and as time goes on it can start to seem as if an entire life has been put on hold.
As the NIAC survey found, feelings of anger and frustration are a common response, with 84% of those who took part experiencing these emotions. Women often report that they find it difficult to deal with other people’s pregnancies and pregnancy announcements, and may then struggle to reconcile the negative emotions pregnancy provokes. A female patient discusses her feelings of jealousy:
Every day I go to work in fear of an announcement about someone being pregnant. I really don’t know how I am going to cope with it. I struggle seeing people in the street who are pregnant, I have to not even look at them. I feel like it’s turning me into a really horrible person [6].
The sense of time passing can be particularly acute for women who are concerned about their biological clocks, and this is often exacerbated by the feeling that they are left waiting all the time – waiting for appointments, waiting for tests, waiting for results, waiting for treatment. This may add to the frustration, and couples can feel that they are on a conveyor belt and have lost control of their lives, as one female patient explains:
We’d done three cycles consecutively, and by the third one I was like another person… I felt as if I was sitting on the sidelines of my life watching it go by, with absolutely no control over anything. I couldn’t play any part in it at all [7].
For some people, this may be the first time they have come up against what appears to be a totally insurmountable problem in their lives.
Infertility does still carry a sense of stigma, and it is easy to underestimate how important childbearing can become to the sense of self for those who are longing to start a family. Both women and men may start to feel that not being able to conceive means that they have somehow failed. The NIAC survey found that 72% of respondents had experienced feelings of inadequacy and 62% felt a sense of guilt or shame. One woman who had been through fourteen full cycles of IVF treatment unsuccessfully said she was left feeling a complete failure:
Although my brain knows it’s not my fault, my heart still says I have failed. I’m sure this is true for lots of women in the same situation. I know it’s not true, and I know it’s illogical, but a woman who can have children seems a better woman in some way than I am [7].
It is not just the emotional difficulties which couples face that can cause them problems, but more practical financial troubles too. Figures from the HFEA [2] show that just 41% of IVF cycles in the United Kingdom are funded by the National Health Service with the majority of couples paying for their own treatment. At Infertility Network UK, we regularly hear from couples who are borrowing money, building up credit card debt, remortgaging or selling their possessions to pay for treatment. There have even been some attempts to raise funds online following examples from the United States of crowdfunding for IVF [8].
Understanding how patients feel is important if you are to offer the best patient-centred care, and there are some key areas that can cause problems. One of the simplest ways that clinicians can make a difference is by helping to ensure that patients are fully informed about their fertility problems and about any treatment that may be offered to help. Although talking to a patient in a lay-friendly jargon-free manner during consultations is vital, absorbing so much new information can be difficult and it is important to back this up with good written information which people can take away to consider in more depth. Patient information evenings or days can be a helpful way to reinforce the points that you want to ensure patients have understood, and to give wider information about the services you offer.
The Internet is awash with fertility advice, and the best way to ensure that your patients do not get swamped by inaccurate information is to direct them towards reliable sources. You only need to take a brief look at any internet fertility forum to see that fertility patients are using them to ask questions about their fertility and treatments, and patients are offering one another all kinds of medical advice; a quick trawl can find patients advising on issues such as the best protocols for poor responders, dosages of drugs for IVF and whether others should have their levels of Natural Killer Cells tested. This is clearly far from ideal, and yet it happens because patients do not always feel able to access information elsewhere. The better the information they receive from the clinic, the less likely patients are to seek out other opinions elsewhere.
What can make it very difficult for patients is the fact that fertility specialists do not always seem to agree themselves on what is effective treatment. Patients today do not just need to negotiate a path through a treatment cycle but also need to make sense of the different information given by different experts in the field: should they pay extra for time-lapse, embryo glue, immunology testing, endometrial scratch, intralipids… ? The list of additions to standard treatment which could possibly boost their chances of success can appear endless, as one patient explains:
The consultant said “You can decide what sort of treatment you want, these are the costs.” It was like, here’s the sweet shop and if you have some money, you can have what you like [6].
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