“Let’s talk about it”: Are patients too old and sick to think about sexuality and intimacy when faced with a life-limiting illness?
A guest blog post by Brigitte Karle, Clinical Nurse Educator (CNE), Neringah Hospital
Neringah Hospital is a 19-bed dedicated palliative care inpatient unit situated in a leafy suburb of the Upper North Shore of Sydney. The Inpatient Unit provides palliative and supportive care to meet the needs of patients who are suffering from a life-limiting illness.
Part of holistic health care is the recognition that humans are sexual beings. The World Health Organization recognises sexuality as a central and life-long aspect of being human. [1] Sexuality describes sexual feelings, thoughts, attractions and behaviours towards others. It also includes gender identities and roles and sexual orientation.
Evidence tells us that the sexual needs of patients receiving palliative care are often not met. [2-4]
At Neringah, we decided to investigate what the gaps were in our practice and how we could improve. The prompt for this was a conference presentation on intimacy and sexuality at end of life attended by one of our staff, and staff discussions around the awkwardness and embarrassment of a staff member who surprised a young long-term resident “having a cuddle” with his wife.
We devised a questionnaire for small cohorts of patients and staff. Responses from the five patients were in line with research findings: that they would like to have a health professional acknowledge their sexual needs and that none of them had ever had a conversation about this in their disease journey.
The staff respondents included nurses, doctors, occupational therapists, physiotherapists, social workers and pastoral carers. It was encouraging to see that 34 (95%) staff responded. While they said they were comfortable discussing sexuality, only 15% had ever discussed this with a patient. The survey further showed that most of the staff felt that if the patient didn’t address the issue, then it wasn’t a problem.
As found in the study by Hordern and Currow (2003) [4], our staff struggled with the concept that elderly, very unwell patients continue to be sexual beings. We also found that staff felt constricted by “cultural” barriers, that is, “it is not our culture to discuss sexual matters”. Another barrier identified was that the environment was not conducive to discussions about sexuality.
A program was devised to educate the staff about sexuality and intimacy in palliative care. We used the PLISSIT model described by Annon in 1976) [5] and followed the Stepped Skills approach of de Vocht et al. (2011). [3]
We then identified Spotters and Champions. The Spotters were staff who would find cues for holding a conversation about intimacy or sexuality (e.g. any person who had a partner, or who expressed loneliness) but didn’t feel confident to start the conversation. This is where the Champions came in. Champions were staff who volunteered for and embraced this new role and felt comfortable approaching this subject. The Champions’ received education formally (from the social worker and staff specialist who had training in this area) and informally (as part of our in-service training for all staff by the social worker and the educator).
We then turned our attention to addressing a response from the staff survey – the need to “provide environmental support for patients and their partners”. We designed a very simple sign, and patients and their partners were given a whiteboard marker so that they could write on this laminated sign and display the exact times they wanted private time. Staff understood that this time was sacrosanct. We also used companion beds. These are single beds that attach to our hospital beds.
We have had very positive responses from this initiative. Patients and their partners have been very grateful for this opportunity to spend quality time alone with their loved one. In a thank you letter, one of the relatives of a patient noted the importance of “Whenever dad reached his hand out, my mother’s hand was there.” We presented this initiative to a consumer group, which consists mainly of surviving spouses, and the overwhelming response was: “We would have loved to have had this opportunity.” The post-education survey showed that staff had a better understanding of the sexual needs of patients.
Challenges of changing staff and building sustainability are being addressed by ongoing education and training of staff.
Overall, this project has identified and fulfilled a need, and confidence has grown amongst staff in the area of conversations about sexuality. We believe that it has expanded our ability to provide holistic care of the patients and their partners at this very important time in their life. We hope that we are able to provide patients and their partners with opportunities to be comfortably intimate, so that the surviving partner does not regret that they were unable to have this “just one more time.”
You can read more about this project at Let’s Talk About It and view the PDF of the poster presented at the 2017 Adelaide PCA conference below.
References
- World Health Organization. Defining Sexual Health. Report of a Technical Consultation on Sexual Health (28–31 January 2002). Geneva: World Health Organization, 2006.
- Cagle JG, Bolte S. Sexuality and life-threatening illness: implications for social work and palliative care. Health & social work. 2009;34(3):223-33.
- de Vocht H, Hordern A, Notter J, van de Wiel H. Stepped Skills: A team approach towards communication about sexuality and intimacy in cancer and palliative care. Australas Med J. 2011;4(11):610-9.
- Hordern AJ, Currow DC. A patient-centred approach to sexuality in the face of life-limiting illness. The Medical journal of Australia. 2003;179(6 Suppl):S8-11.
- Annon JS. The PLISSIT Model: A Proposed Conceptual Scheme for the Behavioral Treatment of Sexual Problems. Journal of Sex Education and Therapy. 1976;2(1):1-15.
Brigitte Karle, Clinical Nurse Educator (CNE), Neringah Hospital
For further evidence around intimacy and sexuality for older Australians visit the palliAGED Evidence Summary and Practice Points.