Sexuality in palliative care
- Timothy J Moynihan, MD
Timothy J Moynihan, MD
- Associate Professor of Medical Oncology
- Mayo Clinic College of Medicine
- Sharon L Bober, PhD
Sharon L Bober, PhD
- Assistant Professor of Psychiatry
- Harvard Medical School
Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing serious illness. The primary tenets of palliative care are symptom management; establishing goals of care that are in keeping with the patient’s values and preferences; consistent and sustained communication between the patient and all those involved in his or her care; psychosocial, spiritual, and practical support both to patients and their family caregivers; and coordination across sites of care. Palliative care aims to relieve suffering in all stages of disease and is not limited to end of life care. (See "Benefits, services, and models of subspecialty palliative care".)
Sexuality is an important issue for some patients nearing the end of their life as well as their sexual partners, and yet this is a subject that health care professionals often do not address [1-3]. Sexuality is intrinsic to a person's sense of self throughout the lifespan [4,5], and it can be a vital form of expression that helps to relieve suffering, offer meaning, and maintain interpersonal connection in the face of life-limiting illness . Sexuality does not refer to just a physical act but more broadly encompasses identity, gender roles and orientations, eroticism, pleasure, and intimacy. It is experienced and may be expressed through thoughts and feelings in addition to behavior . This topic will review issues related to sexuality in palliative care. A more in depth discussion as to the general approach to patients with sexual dysfunction is presented elsewhere. (See "Overview of male sexual dysfunction" and "Evaluation of male sexual dysfunction" and "Sexual dysfunction in women: Epidemiology, risk factors, and evaluation".)
SCOPE OF THE PROBLEM
Although there are few data on sexuality for patients who are undergoing palliative care, there appears to be a high prevalence of sexual dysfunction in this population [8-11]. In addition, the frequency and type of sexual dysfunction among patients in palliative care appears to vary by the underlying disease process [10,12-17]. Representative findings on the scope of this issue are given below:
●In one study of 65 patients admitted to an acute pain and palliative care unit, 86 percent considered sexuality important enough that they wanted to talk about it with a knowledgeable clinician .
●In another study of over 400 patients with heart failure, 59 percent reported sexual dysfunction .To continue reading this article, you must log in with your personal, hospital, or group practice subscription. For more information on subscription options, click below on the option that best describes you:
- Howlett C, Swain M, Fitzmaurice N, et al. Sexuality: The neglected component in palliative care. Int J Palliat Nurs 1997; 3:218.
- Katz A. The sounds of silence: sexuality information for cancer patients. J Clin Oncol 2005; 23:238.
- Redelman MJ. Is there a place for sexuality in the holistic care of patients in the palliative care phase of life? Am J Hosp Palliat Care 2008; 25:366.
- Ginsberg TB, Pomerantz SC, Kramer-Feeley V. Sexuality in older adults: behaviours and preferences. Age Ageing 2005; 34:475.
- Bretschneider JG, McCoy NL. Sexual interest and behavior in healthy 80- to 102-year-olds. Arch Sex Behav 1988; 17:109.
- Hordern AJ, Currow DC. A patient-centred approach to sexuality in the face of life-limiting illness. Med J Aust 2003; 179:S8.
- World Health Organization. Sexual Health. Available at http:/www.who.int/reproductive-health/gender/sexual_health.htlm.
- Ende J, Rockwell S, Glasgow M. The sexual history in general medicine practice. Arch Intern Med 1984; 144:558.
- Pauly I, Goldstein S. Prevalence of significant sexual problems in medical practice. Med Aspects Hum Sex 1979; 48.
- Vitrano V, Catania V, Mercadante S. Sexuality in patients with advanced cancer: a prospective study in a population admitted to an acute pain relief and palliative care unit. Am J Hosp Palliat Care 2011; 28:198.
- Hoekstra T, Lesman-Leegte I, Luttik ML, et al. Sexual problems in elderly male and female patients with heart failure. Heart 2012; 98:1647.
- Anderson H, Ward C, Eardley A, et al. The concerns of patients under palliative care and a heart failure clinic are not being met. Palliat Med 2001; 15:279.
- Demirkiran M, Sarica Y, Uguz S, et al. Multiple sclerosis patients with and without sexual dysfunction: are there any differences? Mult Scler 2006; 12:209.
- Wasner M, Bold U, Vollmer TC, Borasio GD. Sexuality in patients with amyotrophic lateral sclerosis and their partners. J Neurol 2004; 251:445.
- Stolp-Smith KA, Carter JL, Rohe DE, Knowland DP 3rd. Management of impairment, disability, and handicap due to multiple sclerosis. Mayo Clin Proc 1997; 72:1184.
- Kettaş E, Cayan F, Akbay E, et al. Sexual dysfunction and associated risk factors in women with end-stage renal disease. J Sex Med 2008; 5:872.
- Santos PR, Capote JR Jr, Cavalcanti JU, et al. Quality of life among women with sexual dysfunction undergoing hemodialysis: a cross-sectional observational study. Health Qual Life Outcomes 2012; 10:103.
- Rouanne M, Massard C, Hollebecque A, et al. Evaluation of sexuality, health-related quality-of-life and depression in advanced cancer patients: a prospective study in a Phase I clinical trial unit of predominantly targeted anticancer drugs. Eur J Cancer 2013; 49:431.
- Taylor B. Experiences of sexuality and intimacy in terminal illness: a phenomenological study. Palliat Med 2014; 28:438.
- Lemieux L, Kaiser S, Pereira J, Meadows LM. Sexuality in palliative care: patient perspectives. Palliat Med 2004; 18:630.
- Kutner JS, Kassner CT, Nowels DE. Symptom burden at the end of life: hospice providers' perceptions. J Pain Symptom Manage 2001; 21:473.
- Sargant NN, Smallwood N, Finlay F. Sexual history taking: a dying skill? J Palliat Med 2014; 17:829.
- Kelemen A, Cagle J, Groninger H. Screening for Intimacy Concerns in a Palliative Care Population: Findings from a Pilot Study. J Palliat Med 2016; 19:1102.
- Hawkins Y, Ussher J, Gilbert E, et al. Changes in sexuality and intimacy after the diagnosis and treatment of cancer: the experience of partners in a sexual relationship with a person with cancer. Cancer Nurs 2009; 32:271.
- Gamel C, Davis BD, Hengeveld M. Nurses' provision of teaching and counselling on sexuality: a review of the literature. J Adv Nurs 1993; 18:1219.
- Ross PE, Landis SE. Development and evaluation of a sexual history-taking curriculum for first- and second-year family practice residents. Fam Med 1994; 26:293.
- Merrill JM, Laux LF, Thornby JI. Why doctors have difficulty with sex histories. South Med J 1990; 83:613.
- Tsimtsiou Z, Hatzimouratidis K, Nakopoulou E, et al. Predictors of physicians' involvement in addressing sexual health issues. J Sex Med 2006; 3:583.
- Zilbergeld B. Group treatment of sexual dysfunction in men without partners. J Sex Marital Ther 1975; 1:204.
- Lindau ST, Schumm LP, Laumann EO, et al. A study of sexuality and health among older adults in the United States. N Engl J Med 2007; 357:762.
- Reese JB, Keefe FJ, Somers TJ, Abernethy AP. Coping with sexual concerns after cancer: the use of flexible coping. Support Care Cancer 2010; 18:785.
- Park ER, Bober SL, Campbell EG, et al. General internist communication about sexual function with cancer survivors. J Gen Intern Med 2009; 24 Suppl 2:S407.
- Taylor B, Davis S. Using the extended PLISSIT model to address sexual healthcare needs. Nurs Stand 2006; 21:35.
- Annon J. The PLISSIT model. J Sex Educ Ther 1967; 2:1.
- Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006; 31:58.
- Modonesi C, Scarpi E, Maltoni M, et al. Impact of palliative care unit admission on symptom control evaluated by the edmonton symptom assessment system. J Pain Symptom Manage 2005; 30:367.
- Sturesson M, Inga-Britt Bränholm . Life satisfaction in subjects with chronic obstructive pulmonary disease. Work 2000; 14:77.
- Lloyd-Williams M. Is it appropriate to screen palliative care patients for depression? Am J Hosp Palliat Care 2002; 19:112.
- Chochinov HM, Wilson KG, Enns M, Lander S. Prevalence of depression in the terminally ill: effects of diagnostic criteria and symptom threshold judgments. Am J Psychiatry 1994; 151:537.
- Paice JA, Penn RD, Ryan WG. Altered sexual function and decreased testosterone in patients receiving intraspinal opioids. J Pain Symptom Manage 1994; 9:126.
- Paice JA, Penn RD. Amenorrhea associated with intraspinal morphine. J Pain Symptom Manage 1995; 10:582.
- Rajagopal A, Vassilopoulou-Sellin R, Palmer JL, et al. Symptomatic hypogonadism in male survivors of cancer with chronic exposure to opioids. Cancer 2004; 100:851.
- Mirin SM, Meyer RE, Mendelson JH, Ellingboe J. Opiate use and sexual function. Am J Psychiatry 1980; 137:909.
- Schubert MA, Sullivan KM, Schubert MM, et al. Gynecological abnormalities following allogeneic bone marrow transplantation. Bone Marrow Transplant 1990; 5:425.
- Roberge C, Tran M, Massoud C, et al. Quality of life and home enteral tube feeding: a French prospective study in patients with head and neck or oesophageal cancer. Br J Cancer 2000; 82:263.
- Manne S, Badr H. Social relationships and cancer. In: Support Processes in Intimate Relationships, Davila J, Sullivan K (Eds), Oxford Press, 2010. p.240.
- Cort E, Monroe B, Oliviere D. Couples in palliative care. Sex Marital Ther 2004; 19:337.
- Nathorst-Böös J, Flöter A, Jarkander-Rolff M, et al. Treatment with percutanous testosterone gel in postmenopausal women with decreased libido--effects on sexuality and psychological general well-being. Maturitas 2006; 53:11.
- Buster JE, Kingsberg SA, Aguirre O, et al. Testosterone patch for low sexual desire in surgically menopausal women: a randomized trial. Obstet Gynecol 2005; 105:944.
- Braunstein GD, Sundwall DA, Katz M, et al. Safety and efficacy of a testosterone patch for the treatment of hypoactive sexual desire disorder in surgically menopausal women: a randomized, placebo-controlled trial. Arch Intern Med 2005; 165:1582.
- Simon J, Braunstein G, Nachtigall L, et al. Testosterone patch increases sexual activity and desire in surgically menopausal women with hypoactive sexual desire disorder. J Clin Endocrinol Metab 2005; 90:5226.
- Goldstat R, Briganti E, Tran J, et al. Transdermal testosterone therapy improves well-being, mood, and sexual function in premenopausal women. Menopause 2003; 10:390.
- Barton DL, Wender DB, Sloan JA, et al. Randomized controlled trial to evaluate transdermal testosterone in female cancer survivors with decreased libido; North Central Cancer Treatment Group protocol N02C3. J Natl Cancer Inst 2007; 99:672.
- Bauer M. Their only privacy is between their sheets. Privacy and the sexuality of elderly nursing home residents. J Gerontol Nurs 1999; 25:37.
- Skinner D. Intimacy and the telephone. Caring 2001; 20:28.
- SCOPE OF THE PROBLEM
- Partner's perspective
- PERCEIVED BARRIERS
- TAKING A SEXUAL HISTORY
- EVALUATING SEXUAL DYSFUNCTION
- Addressing sexual health
- Issues specific to end of life care
- ADDRESSING THE PARTNER'S NEEDS
- TREATMENT OF SEXUAL DYSFUNCTION
- Specific interventions
- - Hormonal manipulation
- - Discontinuing medications
- - Addressing range of motion
- - Importance of privacy
- - Multidisciplinary care