Background: There is a paucity of research considering sexuality and intimacy in palliative care. It is therefore unclear whether palliative care professionals have a role in addressing these issues with patients and their partners.
Aim: To understand people's experiences of sexuality and intimacy when living with a terminal illness.
Design: A Heideggerian hermeneutic (interpretive) phenomenological study was undertaken. Data were collected using one-to-one conversational interviews. An iterative approach to analysing the narratives was used to reveal shared meanings.
Setting/participants: A total of 27 patients and 14 partners of patients with either cancer or motor neuron disease were recruited from outpatient, community and hospice inpatient units. All participants were aware that the illness was life-limiting.
Findings: When someone is living with a life-limiting illness, their coupled relationship is also dying. In their being-towards-death-of-the-couple, patients and partners of patients with motor neuron disease and terminal cancer experienced connecting and disconnecting within their coupled relationship. Becoming-apart-as-a-couple was experienced as loss of spontaneity, as lack of reciprocity and as rejection. This was influenced by a range of factors including medical treatments, disfigurement and the disabling effects of equipment. Some participants experienced re-connecting through becoming-closer-as-a-couple, although this was not always sustained.
Conclusions: This study sheds new light on people's experiences of sexuality and intimacy when living with a terminal illness. The ethos of holistic care requires palliative care professionals to provide opportunities for patients and their partners to discuss any concerns they might have about their coupled relationship and to understand the meanings symptoms have for them.
Keywords: Cancer; Heidegger; couple; motor neuron disease; palliative care; partner; phenomenology; sexuality; terminal illness; terminally ill.