An Integrative Review of Sexual Health Issues in Advanced Incurable Disease

Abstract

The sexual health needs of people with advanced incurable diseases are underexplored and under assessed by health care practitioners and under studied by researchers. The loss of sexual health can impact a person's overall quality of life and well-being. This integrative review of the literature presents the current state of the science and was conducted to identify and summarize publications in the professional literature related to the sexual health needs of people with advanced illness. A systematic search of 18 databases for studies conducted between 1960 and April 2012 in the English language that focused on the sexual health needs of people with life-limiting illnesses was conducted. Findings document that studies regarding the sexual health of patients with life limiting illnesses are generally narrative reviews, expert opinions, or exploratory in nature. Of the 30 possibly relevant abstracts and titles identified, there was only one prospective or case control trial focusing on sexual health in this population thereby offering the practitioner little research evidence to inform clinical practice. Increasing our understanding of the sexual health needs of people facing the end of their lives is crucial if we are to conduct appropriate assessments and initiate relevant treatments. Further prospective research is required to assess and establish the sexual health concerns of people along the disease trajectory of incurable illness as well as those imminently facing the end of their lives.

Introduction

Sexual health needs are an underrecognized concern of people with life-limiting illnesses and rarely assessed or investigated by clinicians.¹ The loss of sexual health can impact the patient's overall quality of life and well-being; for terminally ill patients, maintaining sexuality and intimacy with a partner often continues to be a vital part of life^1–3 (sexual intercourse is often a small component of sexuality; intimate touching or being held can be a form of communication or a coping strategy in anticipatory grieving).⁴ For those caring for people facing the end of their lives, understanding the individual's meaning of sexuality and knowledge regarding interventions to promote sexual health and intimacy are vital components of holistic care. While there are varied definitions of sexuality and intimacy in the literature,^5,6 this paper utilizes the World Health Organization's (WHO) definition of sexuality as “the integration of the somatic, emotional, intellectual, and social aspects of sexual being, in ways that are positively enriching and that enhances personality, communication, and love.”⁷ Sexual expression is individually determined and can evolve during the transition phases of a terminal disease secondary to individual psychological and physical changes.^3,8–12 The purpose of this integrative review was to identify and summarize the literature related to assessment and interventions regarding sexual health needs for people with advanced incurable disease and to identify gaps and priorities for future studies.

Methods

Search strategy

A comprehensive, systematic, integrative¹³ literature review was conducted in April 2012 (see Table 1) and limited to the years 1960 through 2012. The goal of this review was to summarize the theoretical and empirical literature related to the sexual health of people living with life-limiting illnesses.¹³ The initial searches yielded 2828 possible citations (see Table 2). Selection for full-text reviews was informed by the protocol research question. (What is documented in the literature regarding the sexual health needs/concerns and sexual health assessment/interventions for people with advanced incurable disease?)¹⁴ Eighty-eight publications progressed to full-text review and were independently reviewed according to protocol inclusion criteria; 30 met the criteria for inclusion and are reported here by type of publication.

Table 1.

Search Terms

Table 2.

Search Strategy

Group 1: One-page summaries, commentaries, and abstracts (n=2)

This group consisted of two abstracts; one assessed factors influencing quality of life for hospice patients,¹⁵ and the other was a commentary regarding maintaining sexual health.¹⁶ While sexuality and intimacy were documented as relevant by terminal cancer patients and their spouses, these authors suggest that the concern for survival and cure may obscure sexuality and alter sexual activity in the marital relationship.¹⁵ A commentary by Taylor¹⁶ offered areas of consideration to help dying patients affirm and maintain their sexuality. Issues were discussed of appearance, need for physical encounters, ways to provide intimacy for both the patient and the partner, and when to seek consultation from other disciplines.

Group 2: Systematic reviews (n=3)

A systematic review of the unmet needs of cancer patients by Harrison¹⁷ documented that sexuality was the least frequently investigated health domain. These authors noted that unmet sexual health needs were prevalent during the treatment phase with little resolution in the posttreatment and survivorship phases. This issue was further documented by Blagbrough¹⁸ regarding barriers to assessment of sexual needs. Practitioners seemed to assume that sexual desire was no longer present during hospice care and avoided discussing sexual needs based on their level of comfort or made assumptions based on culture, gender, and sexual orientation.¹⁹ Harding¹⁹ reviewed needs, experiences, and preferences of sexual minorities receiving hospice care and noted that perceived fear of discrimination may prevent disclosure of sexual orientation to health care professionals.

Group 3: Qualitative studies (n=7)

The identified qualitative studies explored issues dealing with sexuality and intimacy in terminally ill people with cancer and their partners (n=5).^2,20,21 One interviewed palliative care practitioners²² and one documented interviews with both patients and practitioners.²³ DeVocht²³ interviewed cancer patients and their partners as well as health care professionals. Identified themes were the need for closeness or intimacy with the partner,²⁰ changes that occur in sexual expression,² and perceived increase in quality of life through sexual expression. Interviews highlighted barriers to sexual expression for hospice patients, such as hospital beds,²⁰ which prevent partners from sleeping together, and institutionalized care, which can eliminate privacy and interfere with sexual expression.² Gilley²¹ presented a case in which the practitioner cared for a married couple where one of the partners was terminally ill. The case illustrated changes in the quality of the sexual relationship and provided examples of expressions of intimacy in the marriage dyad. Assessment of the sexual health needs of the patients and their partners were the focus of Wells's study.²² Interviews documented the practitioner's self-reported difficulties assessing sexual health even while acknowledging that assessment would facilitate the patient's ability to express his or her needs.¹¹ Professionals that did address patient's sexual concerns reported that patients were not offended by this discussion.²³

Issues related to gay, lesbian, bisexual, and transgender (GLBT) individuals at the end of life were explored by Rawlings,²⁴ who reported that there were experienced barriers to sexual health secondary to negative social attitudes. Some subjects reported that they felt pressure to disclose their sexual orientation, while others indicated that they have specifically sought out “gay friendly” practitioners.

Group 4: Descriptive studies (n=17)

Most of the identified publications were either descriptive or opinion articles. These publications consistently documented that people have the desire and the need to be touched as they approach death^{1,4,8,10,12,25–27} and are open to discussing their needs for intimacy with both their partners and health care practitioners.^1,9,28,29 Although not all people feel comfortable discussing their sexual health needs, those whose needs go unmet may develop issues with self-esteem, stress, and depression.⁸ The benefit of positive sexual health for people at the end of life may be finding peace, contentment, and acceptance.⁸

Communication between the patient and the health care professional is an important factor in facilitating the assessment of sexual health needs, although there is disagreement as to who should initiate this discussion.²⁹ Patients may not ask these questions because they assume health care professionals will initiate this discussion with them.^1,30 Park²⁸ reported that oncology practitioners acknowledge not discussing sexual health issues with patients during the course of treatment; Matzo¹ reported that most hospice nurses do not ask their patients about issues related to sexuality or intimacy. Patients, in turn, want the opportunity to discuss their sexual needs with their health care provider.¹ Assessing the patient's needs by obtaining a sexual history and asking pertinent sexual health questions are important components to identifying sexual health needs.^1,31

Many people verbalize a need for intimacy but are faced with barriers, both psychological and physiological, to expressing their sexual health needs. The major psychological issues that emerged in the literature focused on physical self-image and altered body image.^{10,27,32–34} When combined with an underlying psychological issue, altered body self-image may lead to the development of sexual dysfunction.³² Galbraith¹¹ documented similar psychological issues in men with cancer and altered sexual function. Men with cancer of the reproductive organs may face challenges with body image issues and sexual functioning despite an interest in maintaining sexual intimacy.^11,32 Decreased erectile functioning due to surgery or radiation may alter their ability to function sexually or change their manner of sexual expression.³¹

Rothenberg and Dupras³ assessed sexual health from a psychological point of view, utilizing Kübler-Ross's theory of five stages of death. Qualitative data were gathered during sexology consultations with terminally ill people. The authors theorized that initially the patient may deny that he or she is experiencing sexual problems or having poor sexual performance (Stage 1: denial and isolation). In Stage 2 (anger) the patient admits no longer being able to engage sexually as he or she once did and anger surrounding this loss may be displaced onto the partner or caregiver. The authors suggest that it is in this stage where the practitioner can educate the patient and the partner regarding ways that intimacy and sexual expression can be incorporated into daily life in order to enhance relationships. In Stage 3 (bargaining) the patient may ask for forgiveness and more time, often promising to cease sexual behavior, which may be perceived as disapproving to God. Stage 4 (depression) is where the patient can no longer deny the illness and may grieve loss of sexual health and expression. Stage 5 (acceptance) includes accepting new limitations and individualized self-expression of sexuality if the patient has had the time and help to work through the previous stages.

Physical barriers to sexual health were reported for hospice patients and included fatigue, pain, and issues of incontinence.²⁸ A documented environmental barrier was the use of hospital beds for hospice patients.²⁷ Hospital beds facilitate personal care and comfort, but they can interfere with intimacy and sexual expression.

Group 5: Quantitative studies (n=1)

One quantitative study focused on sexuality at the end of life.³⁴ Vitrano and colleagues conducted a study with advanced cancer patients (n=65) assessing their feelings and attitudes regarding sexuality after diagnosis.³⁵ Over half of the patients still felt attractive despite their diagnosis, and almost half felt that sexuality was important for their psychological well-being. However, only 7.6% were still sexually active. Most patients expressed the importance of communicating their sexual needs with experienced professionals.³⁴

Conclusions

Assessing the sexual health needs of people who are facing the end of their lives is crucial if health care professionals are to recommend appropriate interventions that can contribute to the resolution of identified sexual health problems. Many factors contribute to the lack of assessment and treatment standards in the area of sexual health in palliative care. These include a paucity of relevant and scientifically rigorous studies, health care practitioner discomfort with discussing sexual health issues with their patients, and patients themselves not asking about their sexuality concerns. The literature documents that there are numerous barriers to sexual expression in late-stage disease, that including alterations in body image, the use of hospital beds in home hospice, and uncontrolled symptoms (e.g., fatigue, pain, incontinence). The majority of the current research is qualitative in nature, but this work sets the stage for much needed future quantitative and qualitative studies. Prospective research is required to establish the science related to relevant assessment strategies, efficacy of interventions, and the outcomes of interventions related to maintaining sexual health for patients with advanced incurable diseases including those in the final months of life. Health care practitioners have a responsibility to initiate assessment of changes in libido and sexual expression for individuals in their care, including those with advanced incurable disease who are facing the end of their lives.

Footnotes

Acknowledgments

This research was supported in part by a grant from the Oncology Nursing Society. The authors wish to thank Shari Clifton, associate professor and head, Reference and Instructional Services at the University of Oklahoma Robert M. Bird Health Sciences Library, and her staff of reference librarians for consultation on search technique and strategy and tireless efforts in locating hard-to-find full-text articles.

Author Disclosure Statement

The authors have no competing financial interests to disclose.

References

Matzo

, Hijjazi

. If you don't ask me… don't expect me to tell: A pilot study of the sexual health of hospice patients. J Hospice Palliat Nurs, 2009; 11,5:271–283.

Lemieux

, Kaiser

, Pereira

, Meadows

. Sexuality in palliative care: Patient perspectives. Palliat Med, 2004; 18,7:630–637.

Rothenberg

, Dupras

. Sexuality of individuals in the end-of-life stage. Sexologies, 2010; 19,3.

Hordern

, Currow

. A patient-centred approach to sexuality in the face of life-limiting illness. Med J Australia, 2003; 179,6 Suppl:15.

Sadovsky

, Nusbaum

. Sexual health inquiry and support is a primary care priority. J Sex Med, 2006; 3,1:3–11.

Robinson

BBE

, Bockting

, Simon Rosser

, Miner

, Coleman

. The Sexual Health Model: Application of a sexological approach to HIV prevention. Health Educ Res, 2002; 17,1:43–57.

Defining Sexual Health: Report of a Technical Consultation on Sexual Health. Geneva, Switzerland: WHO Press, 2002.

Redelman

. 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; 25,5:366–371.

Mercadante

, Vitrano

, Catania

. Sexual issues in early and late stage cancer: A review. Support Care Cancer, 2010; 18,6:659–665.

10.

Rice

. Sexuality in cancer and palliative care 1: Effects of disease and treatment. Int J Palliat Nurs, 2000; 6,8:392–397.

11.

Galbraith

, Crighton

. Alterations of sexual function in men with cancer [Review] Seminars in Oncology Nursing, 2008; 24,2:102–114.

12.

Stausmire

. Sexuality at the end of life. American Journal of Hospice & Palliative Care, 2004; 21,1:33–39.

13.

Whittemore

, Knafl

. The integrative review: Updated methodology. Journal of Advanced Nursing, 2005; 52,5:546–553.

14.

Tricco

, Tetzlaff

, Sampson

. Few systematic reviews exist documenting the extent of bias: A systematic review. Journal of Clinical Epidemiology, 2008; 61,5:422–434.

15.

Lion

. Sexuality of the Dying: What Dying Participants, Their Spouses and Their Caregivers Teach Us about the Sexuality of the Dying. Indiana University, 1990.

16.

Taylor

. Understanding sexuality in the dying patient. Nursing, 1983; 13,4:54–55.

17.

Harrison

, Young

, Price

, Butow

, Solomon

. What are the unmet supportive care needs of people with cancer? A systematic review. Supportive Care in Cancer, 2009; 17,8:1117–1128.

18.

Blagbrough

. Importance of sexual needs assessment in palliative care. Nursing Standard, 2010; 24,52:35–39.

19.

Harding

, Epiphaniou

, Chidgey-Clark

. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: A systematic review. J Palliat Med, 2012; 15,5:602–611.

20.

Palm

, Friedrichsen

. The lived experience of closeness in partners of cancer patients in the home care setting. International Journal of Palliative Nursing, 2008; 14,1:6–13.

21.

Gilley

. Intimacy and terminal care. J R Coll Gen Pract, 1988; 38,308:121–122.

22.

Wells

. No sex please, I'm dying: A common myth explored. European Journal of Palliative Care, 2002; 9,3:119–122.

23.

de Vocht

, Notter

, de Wiel

. Sexuality and intimacy in palliative care in the Netherlands. Palliative Medicine, 2010; 24,2:215.

24.

Rawlings

. End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. International Journal of Palliative Nursing, 2012; 18,1:29–34.

25.

Wasow

. Human sexuality and terminal illness. Health Social Work, 1977; 2,2:104–121.

26.

Cort

, Monroe

, Oliviere

. Couples in palliative care. Sexual and Relationship Therapy, 2004; 19,3:337–354.

27.

Bowden

, Bliss

. Does a hospital bed impact on sexuality expression in palliative care? Br J Community Nurs, 2009; 14,3:122–126.

28.

Park

, Norris

, Bober

. Sexual health communication during cancer care: Barriers and recommendations. Cancer J, 2009; 15,1:74–77.

29.

Levett

. How to tackle impaired sexuality in oncology and palliative care patients. European Journal of Palliative Care, 2011; 18,1:34–38.

30.

Rice

. Sexuality in cancer and palliative care 2: Exploring the issues. Int J Palliat Nurs, 2000; 6,9:448–453.

31.

Krychman

, Pereira

, Carter

, Amsterdam

. Sexual oncology: Sexual health issues in women with cancer. Oncology, 2006; 71,1–2:18–25.

32.

Galbraith

, Crighton

. Alterations of sexual function in men with cancer. Semin Oncol Nurs, 2008; 24,2:102–114.

33.

Shell

. Sexual issues in the palliative care population. Semin Oncol Nurs, 2008; 24,2:131–134.

34.

Vitrano

, Catania

, Mercadante

. Sexuality in patients with advanced cancer: A prospective study in a population admitted to an acute pain relief and palliative care unit. Am J Hospice Palliat Med, 2011; 28,3:198–202.