A 35 year old woman, let’s call her Sarah, is estranged from her parents. After 20 years of no contact, Sarah receives a letter out of the blue from her mother – she writes to say ‘I’m dying of bowel cancer’. The mother divulges that there is a strong family history and the doctors have urged her to tell relatives to get bowel screening. This screening would be via the insertion of a tube and small camera through the rectum and up into the bowel that allows the surgeon to see and cut out any growths that look suspect.
The cancer news is devastating and Sarah is angry. She is angry at her mother for making contact. However, Sarah is estranged from her parents for very good reason; years of sexual abuse by both from a young age left her damaged, both physically and emotionally. The abuse only stopped when Sarah told a teacher at the age of 15; then the police were called. After Sarah’s parents were arrested, convicted and imprisoned she went into foster care, this was when her life started to turn around.
With an intense distrust of authority, Sarah was a loner. During the day she self-harmed; her nights were engulfed with insomnia. Despite her inability to connect with others emotionally, her foster parents helped to begin the healing process. They saved her; as she grew up she started to talk. Weekly therapy sessions (which continued into adulthood) gave Sarah the tools to cope again, to learn how to care. Finally, after 20 years, at the age of 35 she was starting to begin her life again. Then WHAM!
Bowel screening is a procedure that is invasive and, for Sarah at least, likely to be incredibly traumatic, with a risk of reactivating flashbacks and physical panic. How can Sarah ensure that the health professionals she sees for cancer assessment are compassionate, empathic and most of all, patient?
Alan Phillips, Head of Psychosocial Services at Alder Hey Children’s Hospital, in Liverpool, UK helps health professionals to work with patients who, like Sarah, have been sexually abused. Alan says “Assume that medical processes will be difficult. Claustrophobia may be an issue (e.g. MRI scans) and colonoscopies or mammograms may be traumatizing. Ask clients which parts of any testing or medical process they are likely to find difficult and discuss alternatives or ways to manage it. Recognise potential phobias associated with medical settings and how a sense of powerlessness can tap into previous victimhood.”
As any of us who have had a hospital consultation will know, it is often a one-sided dynamic, focussed on the diagnosis, the treatment and medical options. There may be an unequal exchange, where the doctor has the information – the power, and, if left unchecked, the patient can feel powerless. Yet, for a patient such as Sarah, who is vulnerable and fragile it is vital she is seen as a whole person, with a powerful life-history that will affect how she engages with the hospital. The health professional needs to ensure that Sarah is not re-victimised through an unequal dynamic, he/she needs to be aware that their white coat automatically gives them authority and status that pushes them into a dominant position, the corollary of this is that the patient’s status is weakened.
Getting the Message Across (2013) by Wiggins and Middleton (Eds) advises the health professional – STOP! The consultation should be about listening, understanding, caring and adapting. Each chapter is written by experts in their field and although written with the Clinical Genetics service in mind, it offers advice for ANY health professional. Chapters include holistic information about the following groups: clients affected by diverse sex development, clients who have intellectual disability, clients who have dementia, clients who are terminally ill or who disclose sexual abuse, clients who are Deaf or hard of hearing or who are visually impaired, clients who are from the Irish Traveller community, the Jewish community and the Pakistani Muslim community.
As for Sarah, she made the brave decision to find out more about her cancer risk. Thankfully, genetic testing revealed that Sarah was actually at low risk from developing bowel cancer and thus no screening was necessary. The thoughtful and sensitive input Sarah received from the health professionals in Clinical Genetics stayed with her – they treated her holistically and gave her the time and space to engage with testing services at a pace that worked for her. At first they did not know about the abuse, but because they had taken time to build a rapport and a relationship with Sarah, she felt comfortable sharing her history with them. This is what healthcare should be about – care, compassion and the treatment of all of us as individuals.
Alan Phillips’ chapter ‘Communicating with clients who disclose sexual abuse’ can be found in Getting the Message Across: communication with diverse populations in Clinical Genetics. Jen Wiggins and Anna Middleton (Eds) (2013) Oxford University Press: New York.
If you are also interested in exploring some ethical issues raised by genetic technology, you can find more information within our survey.