Before I met her, I thought I was aware of FGM and the relevant legislation. I also realised it had never crossed my mind that I would be having a conversation about it, at the bedside of a dying woman.
When I consulted Google to find out how others in the hospice setting had responded to similar situations I felt very alone. If my contemporaries have dealt with the issue they haven’t written about it where I could find it.
I already knew FGM is an extremely harmful practice. The government has made it clear that political or cultural sensitivity must not get in the way of uncovering and stopping this terrible form of abuse – the law applies to everyone.
This means palliative and end of life care settings are not, and should not be, exempt. Fair enough, but when faced with a situation how on earth did I, and we as a hospice, respond?
The patient was a Muslim woman with a diagnosis of metastatic cancer, admitted to Trinity’s Inpatient Unit for end of life care. She had a wide network of supportive women in her life, particularly a sister who stayed with her at the hospice. They were both born in a country known for a high prevalence of FGM.
Her condition deteriorated quickly and she needed full care. A senior nursing sister found me one day to quietly tell me that a staff nurse and healthcare assistant had reported that whilst washing the patient they observed evidence that she had undergone FGM earlier in her life. The information shocked me. What also struck me was that we knew our patient’s sister had a daughter under 18.
I worked my way through best practice guidelines and legislation. I would have to raise this with her relative to safeguard her niece and other female children in the family. The fantastic NSPCC FGM helpline talked me through the guidelines when reading them alone was not enough. The local authority was clear about the statutory requirements but there was very little understanding about what it meant in an end of life care context.
From the available information and talking with colleagues, I worked out what we absolutely had to do. We needed to sit with our patient’s sister, share the nursing teams’ observations and explain the law regarding FGM in the UK. Then, as sensitively as possible, we needed to ask about her own health needs and if her daughter, other female children or vulnerable females in the family, had been or were going to be cut.
What I deliberated on, and what made this intervention distinct in a palliative care setting, was the timing. Our patient was actively dying, had been unconscious for some days and had stopped eating and drinking. How could we bring this up with her closest family member at this time? If she had also endured FGM, the conversation would feel even more traumatic at an already emotionally demanding moment.
I reflected on this a lot, on the train home, watching TV, trying to sleep. Having worked in palliative care for eight years, I am not unaccustomed to conversations others would instinctively shy away from.
Despite this, my supportive team and the NSPCC helpline, I knew this would be one of the most difficult conversations of my career. I knew I had to do it right. Not just because it was my responsibility, but because it was a much bigger issue and by addressing this now, it may stop another girl, another generation, going through what my patient had.
I can still recall that conversation with her sister. My colleague Mika and I sat down with her – Mika had been providing carers counselling for some time so knew her well. Between us, using more appropriate language then ‘FGM’, we explained what the nurses had noticed.
We gently told her that we are aware that she may also have had this done to her and offered information and the option of referrals to health and counselling services. I explained the law around FGM and our requirement to refer cases where it has occurred in children or vulnerable adults.
Her sister immediately told us their story. Without us asking, she assured us that her daughter had been raised in a different culture to the one the sisters had been raised, and cut, in, and would not be going through any FGM rituals. It took a lot of reassurance that we were not going to report the sisters’ experiences unless she wanted us to.
We apologised for having to bring this up at such a difficult time but thankfully, and mainly thanks to her relationship with Mika, she understood. We spoke for a while about how supported she felt at the hospice and how she had grown to see us all as part of the wider family.
Her sister died a few hours later.
So a relatively ‘good’ outcome from our conversation? I would probably say so. Would I have done anything differently? No. Would I have made a referral to children’s services and/or the police had we found out children in the family had been cut, or there were plans to have them cut? Without hesitation.
And my learning from this, my advice to other professionals working in palliative care: always have FGM on your radar.
Female patients, from countries with high prevalence rates, with female children in the family – are all indicators FGM may have occurred, or may occur in the future. The NSPCC FGM helpline can help talk things through. Research the most appropriate language, know the law and have leaflets for support services to hand.
The NSPCC FGM helpline can be contacted on 0800 028 3550 free, anonymous and operates 24/7.
For more information about the UN’s international FGM awareness day visit the UN website