Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

We have sexual education, but not reproductive education: approach from an humanisation perspective

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Bionews recently published a letter from a British teenager in which she pointed out – from a subjective point of view – the necessity of reproductive education at schools. She said to receive sexual education with a clear: “don’t have unprotected sex: you may risk an unwanted pregnancy, a sexually transmitted disease or even both”, and adds “this message, however, ignores many important aspects of sexual and reproductive health”.

I agree with all her statements. Working on Patient Experience in the sector of reproductive medicine has always given me the possibility to talk with a lot of patients that have one thing in

common: they all need a fertility treatment due to their age. They have always put their work first and thought that getting pregnant would actually be easy. Another key factor is the so called biological clock. In this regard the author of the letter states that “fertility doesn’t simply fall from the sky from one day to another, but there are several factors that can hamper reproduction, even before the age of 35”.

Whenever I stated in private that they nowadays teach us how not to have children instead of how to have children – because of the beliefs that conceiving children is reduced to sex – at some point I even was told that those “where ideas created by Ratzinger”. I think this is why I liked this teenager’s letter and why I am so glad that such a young person raised this point.

If sexual education contributed to the liberation of women in the past, nowadays it threatens to lock them up in room. It is thus necessary to promote a reproductive education that can help making crucial decisions, not only regarding children, but also regarding what kind of work and labour relations we actually want.

The social meaning of reproduction
Our idea of children and reproduction has changed considerably since the appearance of contraceptives, in fact, it is no casualty that these methods appear amidst the counter-cultural conflict against patriarchal roles that link reproduction and parenting exclusively to the woman.

anticonceptivosWe must not lose sight that this process coincides in time with another major process: the incorporation of women into wage work as a mean for households to access consumer products only affordable for families with more than one income. This massive incorporation to work has certainly been a key element to achieve more equal relationships, family and social relations.

However, most companies have perceived the fact that women have children as a problem ever since. They have put many obstacles to reproduction: layoffs, difficulties in recruitment, career development obstacles… so many, it was necessary to legislate the raising corporate sexism: maternity leave, lactation permits, reconciliation policies, etc. Some years ago, in the automotive company I used to work for, I proposed the person I considered to be the ideal candidate for promotion to which I got the answer “forget it, she has children and will not do extra hours”

Hence, from a social perspective, reproduction can be seen as an objective economic problem for women who want to pursue a professional career; furthermore, the image of a young mother is still related to the 60’ housewives.

Medicalisation of sex and pregnancy
There is a real and objective difficulty in becoming mother before the age of 35 – 40 due to the professional issues of having children before the age of 30. Not to mention the social issues, as a young mothers or parents are automatically associated with values from a time in which women were subordinate to a family role.

Although we think we are free to make crucial decisions regarding parenting, in practice there is such great social constraint that the fertility rate continues to decrease in Western countries (also in Asia and South America) to the point of having reversed the demographic pyramid.familiy discrimination

In fact, at the Master’s Degree on Human Fertility of the University of Alicante and IVF-Spain and the joint conferences of both institutions to raise awareness onreproductive health, students manifest in most cases their desire of becoming mothers at the age of 30-35, but are unaware of the wear the ovarian reserve suffers, as well as of other problems associated with fertility.

Assisted reproduction was originally conceived for treating the blockage of the fallopian tubes, but in almost 40 years of existence it has become the solution for all women and couples that focused on their careers. At IVF-SPAIN, more than 80% of women undergo treatment due to advanced age and only a small group undergoes a fertility treatment due to medical reasons. As a fertility clinic specialised in such cases our data is biased, but colleagues from other clinics confirm a percentage between 50% and 70%.

Apple and Facebook currently offer to pay for their employees to preserve their eggs (a technique originally conceived for women undergoing chemotherapy) and to delay motherhood. This is definitively a step in the wrong direction as it hinders reproduction and obliges them to put corporate interests in first place.

Infertility has become a social illness. Moreover, we can actually speak of a cultural factor, as in the financial capitalist societies we live in corporations are the actual creators of culture. These corporations create the values we internalise, as seen in the last post  as described by Richard Sennett and trhe oocyte conservation for female workers shows.  Thus a “structure of feelings” is created, as defined by Raymond Williams out of which we cannot think and feel.

In our culture being efficient and productive is well above other values such as friendship or family, as rightly observed by the Korean philosopher Byung-Chul Han in “Fatigue Society” and the Agonia del eros-Edit-2“Transparency Society”. These late capitalist values have been interiorised up to a point where, according to Han, we exploit ourselves without the need of a third party. It is no casualty Han also wrote about the “Agony of the Eros” and how the purchase of goods has replaced love and seduction. In the end, reproduction has its origin in the Eros and we have subordinated it to productivity and consumption.

In the end, economic freedom has proven to be a trap that has taken away reproductive freedom. For couples, conception has become a big technological uterus, where the mysteries of life, as well as affection and intimacy in sexual relations give way to hormone treatment, precise technological processes and embryo cultures.

Reproductive education
Can we talk of dehumanized reproduction? Medicalised reproduction not necessarily implies a dehumanized reproductive process, as long as the couple undergoing treatment has the support of family and friends, and if the clinic is patient-centered and not a technological factory. What dehumanises reproduction is its subordination to the consumption of goods and efficiency.

discimination-against-family-responsibilitiesTo reverse this situation it is thus necessary – as appropriately pointed out in the letter to Bionews – to receive an adequate and solid reproductive and sexual education. In first place because when being aware of the fragility and reproductive constraints of both men and women (40% of treatments are due to a male factor), people will have the necessary information to take more accurate decisions regarding their future professional career; they will also be able to claim a better balancing of work and family life, etc.

Secondly, we need to consider the costs of the model for labour relations. We know it creates poor quality employment; we know it goes against the country’s competitiveness; however, it is also causing a severe demographic reduction and consequently the ageing of the country’s population.

Ultimately, a solid reproductive education (including the aforementioned social and labour aspects) would erase the conception of motherhood being old-fashioned, and give women and couples the freedom to choose when they actually want to form a family.

Patient centeredness: humanisation of assisted reproduction
When we talk about the humanisation of reproduction, we do not exactly mean, as customary in previous posts, to put the patient at the centre (of assistance), but rather to let the patient make decisions regarding their reproduction, relationship, family and work. What can assisted reproduction clinics do in this regard?

Assisted reproduction centers practice a quite humanised medicine despite their great technological arsenal (as private clinics they must fight for every single patient). Boutique clinics on one other hand provide personalised attention; large clinic groups offer more depersonalised, however not necessarily dehumanised medicine.

On the contrary,  thanks to reproductive medicine, many people who previously were not able to form a family due to biological or social reasons now can do so (single women or gay couples). It can be said that without reproductive medicine, the actual and new family models would not be so widespread. Additionally, reproductive medicine can help to preserve fertility and of people suffering diseases, such as cancer or lupus.

But beyond making reproductive techniques available for people or groups who could not access motherhood or parenthood, there are several things reproduction clinics can do create a more individual-centered society.

Patient centeredness is fine, but whenever taking care of professional staff
According to the Beryl Institute true patient experience lies within the professional personnel who attend the patients at the clinic. This means that should the professional staff not be given i am the patient experienceadequate working conditions, then the clinic’s patient experience will lack in quality. Thus, the clinics must provide and ensure decent working conditions, as well as to facilitate and support its employees’ decision towards patients.

Business, but not commercial exploitation
Reproductive clinics are mostly private and there is nothing wrong with that; however, we must set limits. In the previous post we mentioned that both public and private healthcare systems are not consumer items and that not considering them as such is what differences a business from a commercial exploitation. But, who am I to ask a patient if she is preserving her fertility due to health issues or due to her job? Or even to judge if she made the right decision? Nevertheless, as a clinic it is up to me to search (or not) for that patient profile.

Reproductive education
Fertility clinics play a key role at this point. With a 15% of infertile couples (2% of them attending fertility clinics), we can conclude that this market is big enough to not encourage women and couples to postpone motherhood/parenthood. The dissemination of knowledge at schools and universities, as well as on blogs and social networks could complement sexual education already taught at schools. In addition, educating youth with honesty and helping them to freely make a decision regarding their reproduction by means of information will be of great benefit. Sooner or later those 15% of girls and boys who received that will suffer from some kind of fertility problem. Which fertility will they choose in the end? I would opt for the patient centered clinic that cared for me when it had nothing to win.

Autor: Carlos Bezos Daleske

Siento curiosidad por todo lo relacionado con personas y organizaciones, especialmente en salud. Me gusta trabajar con personas y con su capacidad de innovación y co-creación. www.iexp.es I feel very curious about everything related to people and organizations, especially in healthcare. I enjoy working with people and their ability to innovate and co-create. www.iexp.es

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