Doctoraat: Sexuality and intimacy during terminal illness: a qualitative multi-method study about the experiences of patients and partners, and the role of palliative care nurses

Introduction

Living with terminal illness is probably a stressful and upsetting experience for most people. Patients living with the awareness that the end of life is approaching experience their life as increasingly unpredictable, are in an unconquerable struggle to maintain control (Rydahl-Hansen, 2005), commonly experience substantial pain (Weiss, Emanuel, Fairclough, & Emanuel, 2001), and suffer from clinical depression (Breitbart et al., 2000). Partners, in turn, often suffer by worrying about the imminent loss of their partner and about their ability or inability to continue their role as caregiver (Manne & Badr, 2008; McLean, Walton, Rodin, Esplen, & Jones, 2013). A terminal illness also affects a couple as a unit, rather than only the isolated individuals. The couple must cope together with additional challenges such as anticipatory grief, role and lifestyle changes and changes in responsibilities. Furthermore, they need to negotiate difficult choices regarding end-of-life care, and have to talk about the ill partner's legacy(Manne & Badr, 2008; McLean & Jones, 2007; McLean et al., 2013; Tie & Poulsen, 2013). When the end is nearing, patients and their partners also wish to say goodbye, to spend time with each other, and sometimes to resolve longstanding conflicts (Sherman, 1998; Zaider & Kissane, 2009). 

It has been shown that quite a lot of couples are particularly vulnerable to relational difficulties as the patient’s health starts to deteriorate during terminal illness (Persson & Sundin, 2008). More specifically, in one study, 33 to 50% of patients and their partners reported experiencing relational distress during the terminal illness of one of the partners (McLean & Hales, 2010). From a couples’ perspective, successful adaptation may not be dependent on the physical circumstances of the terminal illness, but rather on how well the couple integrates illness, and relational challenges in this stage of life (Manne & Badr, 2008). One of the relational challenges patients and partners have to face together and integrate into their lives are changes in their intimate and sexual relationship. This implies that healthcare providers working in palliative care should be able to support couples who have difficulties with their intimate and sexual relationship. Although the holistic philosophy of palliative care – which considers both patients and close relatives as the unit of care – encourages healthcare providers to address intimacy - and sexuality-related issues, healthcare providers indicate difficulties doing so, due to their lack of knowledge and skills (Higgins, Barker, & Begley, 2006).