Advertisement

Sexuality and Intimacy

  • Agnes HigginsEmail author
  • Geralyn Hynes
Reference work entry

Abstract

A primary goal of palliative care is to provide “active total care” and improve quality of life of the person and their family. As sexuality is an integral part of the uniqueness and personality of every human being, failure to acknowledge this aspect of an individual in the palliative care context implies failure to acknowledge personhood. Navigating changes in sexual function and relationships is challenging for all people; however, for people who have a diagnosis of life-limiting illness, there are extra challenges and losses. Despite living in the “shadows of impending death,” evidence suggests that the expression of sexuality and the need to connect in an intimate way continues to be an important part of people’s lives, even in the last weeks and days of life. This chapter explores the impact of life-limiting illness on sexual expression and provides some guidance to practitioners in responding to people’s needs. The chapter moves beyond the binary division of gender and heterosexual relationships to discuss the needs of people who identify as LGBT and those who experience disenfranchised grief. While sexuality and sexual expression is a positive force in many people’s lives, for others, it is a source of trauma and distress, and palliative care practitioners need to be aware of issues, such as sexual trauma and sexual disinhibition, and be in a position to create a safe accepting space, where people feel safe, validated, and supported.

References

  1. Abbott-Anderson K, Kwekkeboom KLA. Systematic review of sexual concerns reported by gynecological cancer survivors. Gynecol Oncol. 2012;124(3):477–89.CrossRefGoogle Scholar
  2. Aerts L, Enzlin P, Vergote I, Verhaeghe J, Poppe W, Amant F. Sexual, psychological, and relational functioning in women after surgical treatment for vulvar malignancy: a literature review. J Sex Med. 2012;9(2):361–71.CrossRefGoogle Scholar
  3. Almack K, Seymour J, Bellamy G. Exploring the impact of sexual orientation on experiences and concerns about end of life care and on bereavement for lesbian, gay and bisexual older people. Sociology. 2010;44(5):908–24.CrossRefGoogle Scholar
  4. Black B, Muralee S, Tampi RR. Inappropriate sexual behaviors in dementia. J Geriatr Psychiatry Neurol. 2005;18(3):155–62.CrossRefGoogle Scholar
  5. Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: a systematic review, thematic synthesis and modelling of the literature. Palliat Med. 2016;30(8):730–44.CrossRefGoogle Scholar
  6. Carpentier MY, Fortenberry JD. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature. J Adolesc Health. 2010;47(2):115–25.CrossRefGoogle Scholar
  7. Cartwright C, Hughes M, Lienert T. End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex. 2012;14(5):537–48.CrossRefGoogle Scholar
  8. Chen LP, Murad MH, Paras ML, Colbenson KM, Sattler AL, Goranson EN, et al. Sexual abuse and lifetime diagnosis of psychiatric disorders: systematic review and meta-analysis. Mayo Clin Proc. 2010;85(7):618–29.CrossRefGoogle Scholar
  9. Cort E, Monroe B, Oliviere D. Couples in palliative care. Sex Relationship Therapy. 2004;19(3):337–54.CrossRefGoogle Scholar
  10. Dyer K, das Nair R. Why don't healthcare professionals talk about sex? A systematic review of recent qualitative studies conducted in the United Kingdom. J Sex Med. 2013;10(11):2658–70.CrossRefGoogle Scholar
  11. Feldman DB, Sorocco KH, Bratkovich KL. Treatment of posttraumatic stress disorder at the end-of-life: application of the stepwise psychosocial palliative care model. Palliat Support Care. 2014;12(3):233–43.CrossRefGoogle Scholar
  12. Frankl VE. Man’s search for meaning. New York: Pocket Books; 1963.Google Scholar
  13. Frankl VE. Man’s search for ultimate meaning. Rider: London; 2011.Google Scholar
  14. Fredriksen-Goldsen KI, Kim H-J, Barkan SE, Muraco A, Hoy-Ellis CP. Health disparities among lesbian, gay, and bisexual older adults: results from a population-based study. Am J Public Health. 2013;103(10):1802–9.CrossRefGoogle Scholar
  15. Gilbert E, Ussher JM, Perz J. Sexuality after breast cancer: a review. Maturitas. 2010;66(4):397–407.CrossRefGoogle Scholar
  16. Gilbert E, Ussher JM, Perz J. Sexuality after gynaecological cancer: a review of the material, intrapsychic, and discursive aspects of treatment on women’s sexual-wellbeing. Maturitas. 2011;70(1):42–57.CrossRefGoogle Scholar
  17. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15(5):602–11.CrossRefGoogle Scholar
  18. Higgins A. All of me: embracing sexuality as a dimension of care in: Cooper J, Cooper D, editors. Palliative Care-Mental Health London: Radcliffe Publishing; 2012. p. 126–46.Google Scholar
  19. Higgins A, Gill A. Substance misuse: gender sensitive practice beyond binary divisions. In: Cooper DB, editor. Ethics in mental health-substance use. Oxford: CRC Press; 2017.Google Scholar
  20. Higgins A, Barker P, Begley CM. Hypersexuality and dementia: dealing with inappropriate sexual expression. Br J Nurs. 2004;13(22):1330–4.CrossRefGoogle Scholar
  21. Hordern AJ, Street AF. Let’s talk about sex: risky business for cancer and palliative care clinicians. Contemp Nurse. 2007;27(1):49–60.CrossRefGoogle Scholar
  22. Kotronoulas G, Papadopoulou C, Patiraki E. Nurses’ knowledge, attitudes, and practices regarding provision of sexual health care in patients with cancer: critical review of the evidence. Support Care Cancer. 2009;17(5):479–501.CrossRefGoogle Scholar
  23. Lemieux L, Kaiser S, Pereira J, Meadows LM. Sexuality in palliative care: patient perspectives. Palliat Med. 2004;18(7):630–7.CrossRefGoogle Scholar
  24. Lindau ST, Surawska H, Paice J, Baron SR. Communication about sexuality and intimacy in couples affected by lung cancer and their clinical-care providers. Psychooncology. 2011;20(2):179–85.CrossRefGoogle Scholar
  25. Low C, Fullarton M, Parkinson E, O'Brien K, Jackson SR, Lowe D, et al. Issues of intimacy and sexual dysfunction following major head and neck cancer treatment. Oral Oncol. 2009;45(10):898–903.CrossRefGoogle Scholar
  26. Macpherson C. Childhood abuse uncovered in a palliative care audit. Palliat Support Care. 2009;7(4):481–6.CrossRefGoogle Scholar
  27. Maddineni SB, Lau MM, Sangar VK. Identifying the needs of penile cancer sufferers: a systematic review of the quality of life, psychosexual and psychosocial literature in penile cancer. BMC Urol. 2009;9(1):8.CrossRefGoogle Scholar
  28. Manne S, Badr H. Intimacy processes and psychological distress among couples coping with head and neck or lung cancers. Psycho-Oncology. 2010;19(9):941–54.CrossRefGoogle Scholar
  29. Marie Curie. Hiding who I am” The reality of end of life care for LGBT people Marie Curie. 2016. [Internet]. Available online: https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2016/reality-end-of-life-care-lgbt-people.pdf.
  30. Matzo M, Ehiemua Pope L, Whalen J. An integrative review of sexual health issues in advanced incurable disease. J Palliat Med. 2013;16(6):686–91.CrossRefGoogle Scholar
  31. Nazareth I, Lewin J, King M. Sexual dysfunction after treatment for testicular cancer: a systematic review. J Psychosom Res. 2001;51(6):735–43.CrossRefGoogle Scholar
  32. Pan American Health Organization, World Health Organisation, editor. Promotion of sexual health: recommendations for action. Antigua Guatemala, Pan American Health Organisation/World Health Organisation; 2000.Google Scholar
  33. Paterson C, Robertson A, Smith A, Nabi G. Identifying the unmet supportive care needs of men living with and beyond prostate cancer: a systematic review. Eur J Oncol Nurs. 2015;19(4):405–18.CrossRefGoogle Scholar
  34. Quinn GP, Sanchez JA, Sutton SK, Vadaparampil ST, Nguyen GT, Green BL, et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin. 2015;65(5):384–400.CrossRefGoogle Scholar
  35. Radosh A, Simkin L. Acknowledging sexual bereavement: a path out of disenfranchised grief. Reprod Health Matters. 2016;24(48):25–33.CrossRefGoogle Scholar
  36. Rawlings D. End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. Int J Palliat Nurs. 2012;18(1):29–34.CrossRefGoogle Scholar
  37. Reese JB, Keefe FJ, Somers TJ, Abernethy AP. Coping with sexual concerns after cancer: the use of flexible coping. Support Care Cancer. 2010;18(7):785–800.CrossRefGoogle Scholar
  38. Reese JB, Sorice K, Beach MC, Porter LS, Tulsky JA, Daly MB, et al. Patient-provider communication about sexual concerns in cancer: a systematic review. J Cancer Surviv. 2017;11(2):175–88.CrossRefGoogle Scholar
  39. Saunders CM. Templeton prize speech. In: Saunders CM, editor. Cicely Saunders: selected writings 1958–2004. New York: Oxford University Press; 2006. p. 157–62.CrossRefGoogle Scholar
  40. Sountoulides P, Rountos T. Adverse effects of androgen deprivation therapy for prostate cancer: prevention and management. ISRN Urology. 2013;2013:1–8.CrossRefGoogle Scholar
  41. Taylor P. Understanding sexuality in the dying patient. Nursing. 1983;13:54–55CrossRefGoogle Scholar
  42. Taylor B. Experiences of sexuality and intimacy in terminal illness: a phenomenological study. Palliat Med. 2014a;28(5):438–47.CrossRefGoogle Scholar
  43. Taylor B. Sexuality, intimacy and motor neurone disease: matters of concern. Br J Neurosci Nurs. 2014b;10(5):242–51.CrossRefGoogle Scholar
  44. Traa MJ, De Vries J, Roukema JA, Den Oudsten BL. Sexual (dys) function and the quality of sexual life in patients with colorectal cancer: a systematic review. Ann Oncol. 2012;23(1):19–27.CrossRefGoogle Scholar
  45. Tucker SR, Speer SA, Peters S. Development of an explanatory model of sexual intimacy following treatment for localised prostate cancer: a systematic review and meta-synthesis of qualitative evidence. Soc Sci Med. 2016;163:80–8.CrossRefGoogle Scholar
  46. Wadham O, Simpson J, Rust J, Murray C. Couples’ shared experiences of dementia: a meta-synthesis of the impact upon relationships and couplehood. Aging Ment Health. 2016;20(5):463–73.CrossRefGoogle Scholar
  47. Wallbank S. The empty bed: bereavement and the loss of love. London: Darton, Longman & Todd Ltd; 2010.Google Scholar
  48. Wilmoth MC. Life after cancer: what does sexuality have to do with it? 2006 Mara Mogensen Flaherty memorial lectureship. Oncol Nurs Forum. 2006;33(5):905–10.CrossRefGoogle Scholar
  49. World Health Organisation (WHO). Transgender people and HIV. Geneva: WHO; 2015.Google Scholar
  50. Wornell D. Sexuality and dementia : compassionate and practical strategies for dealing with unexpected or inappropriate behaviors. New York: Demos Medical Publishing; 2014.Google Scholar
  51. Wygant C, Bruera E, Hui D. Intimate partner violence in an outpatient palliative care setting. J Pain Symptom Manag. 2014;47(4):806–13.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.School of Nursing and MidwiferyTrinity College DublinDublinIreland

Personalised recommendations