Sexuality in end-of-life care: Who should start the discussion?

By Andria Bianchi

In December 2017, Canada’s federal government called on the Minister of Health to create a framework for palliative care. This call to action was motivated by an increasing need to provide good palliative care services for people living with serious and life-limiting illnesses. Palliative care is a patient-centred approach that has been shown to improve individuals’ quality of life by offering effective pain and symptom management and helping people have a good end of life experience that is in keeping with their goals, values, and beliefs. Palliative care can be offered in various settings, such as in hospitals, long-term care facilities, hospices, and in one’s home.

One topic that is seldom discussed as a part of what it means to provide end-of-life services in public settings, however, is that of sexuality. Although sexuality can be of considerable importance to individuals’ quality of life (which is an important part of providing patient-centred and end-of-life care), it is a taboo topic that is often overlooked.

Sexuality can be defined in different ways. A broad definition of sexuality “encompasses identity, gender roles and orientation, eroticism, pleasure, and intimacy” (Moynihan and Bober, 2017). As stated in one of the few articles considering sexuality and end-of-life care, Margaret J. Redelman says that sexuality is “vital to many people’s self-concept and a sense of personal integrity… [which] sustains adaptability and resilience enabling ability to cope with adverse circumstances.” Sexuality can also be an “intimate form of communication that helps relieve suffering… in the face of life limiting illness” (Hordern & Currow, 2003). A patient’s sexual interests will differ depending on their age, the nature of their relationships, the severity of their illness, alongside other personal preferences based on present life circumstances.

Irrespective of the potential benefits of sexuality and its relation to individuals’ quality of life, discussions about sexuality/sexual preferences rarely occur when it comes to providing holistic end-of-life care. As stated by Sue Lennon, perceptions of sexuality and end-of-life “often come with the tag line ‘but it’s probably the last thing on their minds’” (Lennon, 2016). The topic of sexuality and intimacy are often medicalized in healthcare, where discussions around fertility, contraception, erectile dysfunction, and menopausal statuses are discussed and a broader definition of sexuality is rarely employed (Hodern, 2007).

The idea that sexuality may be pertinent to individuals’ quality of life in end-of-life contexts was explored in a 2008 study by Lemieux et al. The study examined what the term ‘sexuality’ meant to palliative patients with advanced cancer and considered whether they would be comfortable discussing sexuality with healthcare providers. The results of this study indicated that “[s]exuality continues to be important at the end of life, especially for those who experience it as a way of connecting with their partner” (Lemieux, et al., p. 632). Although sexuality was determined to be an important part of many individuals’ end-of-life circumstances, “several barriers to experiencing this were noted in the palliative care unit and hospice care,” thereby preventing patients from engaging in a fulfilling sexuality at the end of their lives. Some of the barriers to experiencing sexuality were: lack of privacy, shared rooms, uninviting physical spaces, intrusion by staff, and bed sizes. While the physical barriers may be challenging to alter in organizations that are operating under increasing fiscal constraints, some of the non-physical barriers (e.g. intrusion by staff) can potentially be overcome by having discussions with patients.

All of the participants in Lemieux’s study “felt that [sexuality] should have been brought up as a part of their care” (Lemieux, 2008, p. 633). The participants suggested that clinicians should approach the topic with professionality, transparency, and in a forthright manner in order for their sexual preferences to be discussed and accommodated. This suggestion was reinforced by Lennon, who said that “the majority of patients are happy to talk about ‘it’ (or at least would not be offended if asked). They do however want the health professional to open the conversation” (Lennon, 2016).

Based on these studies, it seems that patients are willing and wanting to discuss sexuality when receiving palliative care in hospitals, hospices, and long term care units… but they want clinicians to commence the discussion. Sexuality is a moralized topic that may be challenging to discuss, and while I do not anticipate this article to necessarily alter clinical practices, I do hope that it encourages those working with patients who have serious and life-limiting illnesses to consider what it would mean to discuss sexuality as a part of providing patient-centred care.

Andria Bianchi is a Bioethicist at the University Health Network, a PhD Candidate at the University of Waterloo, and a board member of the Canadian Bioethics Society.