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Assessing the Impact of Serious Illness on Patient Intimacy and Sexuality in Palliative Care

Open ArchivePublished:April 22, 2019DOI:https://doi.org/10.1016/j.jpainsymman.2019.04.015

      Abstract

      Context

      Palliative care (PC) clinical practice guidelines recommend providers assess the impact of illness on intimacy and sexuality. Previous studies around sexuality and intimacy in patients with advanced illness have largely focused on patients with a cancer diagnosis in the outpatient setting. Little is known about such impact of illness on inpatients receiving PC consultation.

      Objectives

      To assess the impact of patient illness on intimacy and sexuality through use of a screening tool and brief clinical questionnaire in hospitalized patients receiving PC consultation.

      Methods

      Between January 2016 and May 2017, palliative social workers at three hospitals asked patients to report the level of impact that their illness(es) had on intimacy and to describe the impact. Data were analyzed using descriptive statistics and chi-square analysis. Qualitative data were analyzed using constant comparison methodology.

      Results

      Among the 97 PC patients screened for intimacy concerns, the majority were female (57.7%), African American (71.1%) and on average 57.9 years of age. Most (91.7%) reported that they had not been previously asked about how their illness had impacted their intimacy. Nearly half (48.4%) reported that illness had moderately or significantly impacted their intimacy; these patients tended to be younger and in a current relationship (P < 0.05).

      Conclusion

      Patients with advanced illness commonly report negative issues regarding intimacy and sexual health. Incorporating routine screening into PC consultation may be warranted.

      Key Words

      Introduction/Background

      Palliative care (PC) aims to improve quality of life for patients with a serious illness. A comprehensive palliative assessment includes exploring a patient's physical, psychosocial, emotional, and spiritual needs.
      • Cagle J.
      • Bolte S.
      Sexuality and life-threatening illness: implications for social work and palliative care.
      • Cagle J.
      • Osteen P.
      • Sacco P.
      • Jacobson J.
      Psychosocial assessment by hospice social workers: a content review of Instruments from a National sample.
      One aspect of this assessment includes addressing sexuality and intimacy needs. However, research shows this is an area often excluded from a palliative assessment.
      • Cagle J.
      • Bolte S.
      Sexuality and life-threatening illness: implications for social work and palliative care.
      • Cagle J.
      • Osteen P.
      • Sacco P.
      • Jacobson J.
      Psychosocial assessment by hospice social workers: a content review of Instruments from a National sample.
      • Gallo-Silver L.
      Sexuality, sensuality, and intimacy in palliative care.
      In one study, 90% of nurse respondents indicated they do not routinely assess for sexual health.
      • Matzo M.
      • Hijjazi K.
      If you don't ask me…don't expect me to tell. A pilot study of the sexual health of hospice patents.
      Intimacy can include physical and emotional closeness, sexual interactions, and communication of thoughts/feelings.
      • Cagle J.
      • Bolte S.
      Sexuality and life-threatening illness: implications for social work and palliative care.
      • Cagle J.
      • Osteen P.
      • Sacco P.
      • Jacobson J.
      Psychosocial assessment by hospice social workers: a content review of Instruments from a National sample.
      • Gallo-Silver L.
      Sexuality, sensuality, and intimacy in palliative care.
      • Matzo M.
      • Hijjazi K.
      If you don't ask me…don't expect me to tell. A pilot study of the sexual health of hospice patents.
      • Kelemen A.M.
      • Cagle J.G.
      • Groninger H.
      Screening for intimacy concerns in a palliative care population: findings from a pilot study.
      The World Health Organization defines sexuality as “a central aspect of being human throughout life encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy, and reproduction.”
      World Health Organization
      Sexual and reproductive health: defining sexual health.
      Barriers to these conversations include the clinician's fear of being intrusive, misconceptions about the importance of sexuality and intimacy within this patient population, and lack of training on how to have these discussions.
      • Cagle J.
      • Bolte S.
      Sexuality and life-threatening illness: implications for social work and palliative care.
      • Cagle J.
      • Osteen P.
      • Sacco P.
      • Jacobson J.
      Psychosocial assessment by hospice social workers: a content review of Instruments from a National sample.
      • Gallo-Silver L.
      Sexuality, sensuality, and intimacy in palliative care.
      • Matzo M.
      • Hijjazi K.
      If you don't ask me…don't expect me to tell. A pilot study of the sexual health of hospice patents.
      • Lemieux L.
      • Kaiser S.
      • Pereira J.
      • Meadows L.
      Sexuality in palliative care: patient perspectives.
      Evidence suggests that patients want to talk about intimacy and sexuality, have important concerns that are not being addressed, and prefer their health care team broach the topic.
      • Kelemen A.M.
      • Cagle J.G.
      • Groninger H.
      Screening for intimacy concerns in a palliative care population: findings from a pilot study.
      • Lemieux L.
      • Kaiser S.
      • Pereira J.
      • Meadows L.
      Sexuality in palliative care: patient perspectives.
      • Den Ouden M.E.M.
      • Pelgrum-Keurhorst M.N.
      • Uitdenhaag M.J.
      • DE Vocht H.M.
      Intimacy and Sexuality in women with breast cancer: professional guidance needed.
      • Taylor B.
      Experiences of sexuality and intimacy in terminal illness: a phenomenological study.
      • Taylor B.
      The impact of assistive equipment on intimacy and sexual expression.
      The current National Coalition for Hospice and Palliative Care Clinical Practice Guidelines indicate that a social assessment include “[t]he effect of illness or injury on intimacy and sexual expression”.
      National Consensus project for quality palliative care
      Clinical practice guidelines for quality palliative care.
      Previous studies around sexuality and intimacy have largely focused on outpatient settings with a cancer diagnosis; little is known about the impact on inpatients with advanced illness(es).
      • Bartula I.
      • Sherman K.A.
      Screening for sexual dysfunction in women diagnosed with breast cancer: systematic review and recommendations.
      • Hordern A.J.
      • Street A.F.
      Communicating about patient sexuality and intimacy after cancer: mismatched expectations and unmet needs.
      • Flynn K.E.
      • Reese J.B.
      • Jeffery D.D.
      • et al.
      Patient experiences with communication about sex during and after treatment for cancer.
      • Grove R.
      An analysis of the constant comparative method.
      Our previous single-center study focused on hospitalized patients receiving PC consultation and concluded that a majority of patients had not previously been asked about intimacy or sexuality yet illness significantly or moderately impacted intimacy.
      • Kelemen A.M.
      • Cagle J.G.
      • Groninger H.
      Screening for intimacy concerns in a palliative care population: findings from a pilot study.
      This multisite study was designed to build on this previous work to better understand the importance of sexuality and intimacy within an inpatient PC population.
      • Kelemen A.M.
      • Cagle J.G.
      • Groninger H.
      Screening for intimacy concerns in a palliative care population: findings from a pilot study.

      Methods

      We conducted a multisite study to assess the impact of patient illness on intimacy and sexuality through use of a screening tool and brief clinical questionnaire. The study took place across three hospitals located in the Baltimore-Washington region: a Level 1 trauma center, an urban academic hospital, and an urban community hospital. Data collection occurred between January 2016 and May 2017. Consistent with the case-mix of PC services across the study sites, a majority (32.7%) of cases had a primary diagnosis of cancer, followed by end-stage cardiac disease (17.2%) and end-stage pulmonary disease (11.8%). All methods and procedures were reviewed and approved by the institutional review board at the lead author's affiliated institution. The study sample consisted of adult patients aged 18+ years who were capacitated (determined by clinical judgment of the primary hospital teams), receiving inpatient hospital-based care, and had been referred for PC consultation. Patient characteristics, such as gender, race/ethnicity, and principal diagnosis, were obtained from the medical record. Data on relationship status, intimacy impact on personal well-being and on relationship status, and whether intimacy had been discussed by other clinical providers were reported by participating subjects.
      Self-reported rating of how much the patient's intimacy had been affected by the illness (0 = none, 1 = little, 2 = moderately, and 3 = significantly) and specific issues/concerns were collected using the screening tool during PC initial or follow-up consultation. The tool used the term “intimacy” and if patients were allowed to define the meaning of intimacy in the context of their illness. A subsequent open-ended question was used to determine how intimacy had been affected. Responses, including direct, verbatim quotes from the patient, were documented by the PC social worker in detailed clinical notes. Notes also included clinician impressions.
      Two authors (A. K. and H. G.) reviewed electronic medical records of each patient to determine if they survived three months after discharge. If information was not found in the electronic medical record, the lead author searched public record and called facilities where patients were discharged.
      Descriptive statistics appropriate to the measure (means and standard deviations for continuous data; frequencies and percentages for categorical data) were used to summarize sample characteristics. Independent t-tests and chi-squared analyses were used to identify differences in self-rated impact (responses of “no” or “little” vs. “moderate” or “significant”) of one's illness on intimacy based on sample characteristics. Similar difference testing was used to compare patients at the end of life (EOL; i.e., determined retrospectively as those patients who died within three months after screening) vs. those who were not at the EOL (i.e., those still living beyond three months after screening). A subsequent post hoc analysis of variance was conducted to help explain observed differences in patient mortality across medical centers.
      Qualitative data from the intimacy screening tool and clinical notes were coded for thematic content using the tenets of the constant comparison method.
      • Grove R.
      An analysis of the constant comparative method.
      An initial coder (J. Cagle) reviewed the data, identified preliminary themes, and developed a coding dictionary. Two additional coders (A. K. and H. G.) used the preliminary themes and data dictionary to refine and confirm coding decisions. Select patient quotes and excerpts from clinical notes are provided to give case-based exemplars of the identified themes. Qualitative findings are stratified based on patient intimacy impact rating to allow for a thematic comparison of patients reporting that the illness had little/no impact on intimacy in patients who reported a moderate/significant impact.

      Results

      As Table 1 displays, among the 97 PC patients screened for intimacy concerns, the majority were female (57.7%), African American (71.1%), and on average 57.9 years of age (SD = 16.2). The prevailing primary diagnosis was cancer (41%) and 39.2% died within three months of being given the intimacy screening tool. A large majority of patients (91.7%) reported that they had not been previously asked about how their illness had impacted their intimacy before the PC consultation. Just less than half (48.4%) of the sample reported that illness had moderately or significantly impacted their intimacy.
      Table 1Patient Characteristics for a Multisite Study of Intimacy Concerns in Palliative Care (N = 97)
      CharacteristicDescriptive Statistics, N (%)
      Age, yrs
       18–3913 (13.0)
       40–4914 (14.0)
       50–5922 (22.0)
       60–6929 (29.0)
       70–7911 (11.0)
       80+10 (10.0)
       Missing1 (1.0)
      Gender
       Male41 (42.3)
       Female56 (57.7)
      Race/ethnicity
       African American69 (71.1)
       Caucasian22 (22.7)
       Other race/ethnicity6 (6.2)
      Relationship status
       Married/partnered30 (30.9)
       Widowed8 (8.2)
       Boyfriend/girlfriend/engaged8 (8.2)
       Single37 (38.1)
       Divorced/separated13 (13.4
       Missing1 (1.0)
      Principal diagnosis
       Cancer42 (43.3)
       Congestive heart failure18 (18.6)
       Other condition21 (21.6)
       Sepsis/infection6 (5.2)
       Chronic obstructive pulmonary disease/respiratory failure8 (8.2)
       Missing3 (3.1)
      Died within three months of admission?
       Yes38 (39.2)
       No50 (51.5)
       Missing9 (9.3)
      Site
       A14 (14.4)
       B55 (56.7)
       C28 (28.9)
      Intimacy impact rating
       None30 (30.9)
       Little19 (19.6)
       Moderately20 (20.6)
       Significantly27 (27.8)
       Elected not to respond1 (1.0)
      Intimacy previously discussed?
       Yes5 (5.2)
       No89 (91.7)
       Missing3 (3.1)
      Intimacy conversation helpful?
       Yes79 (81.4)
       No8 (8.2)
       Ambivalent/unsure4 (4.1)
       No response/not asked3 (3.1)
       Missing3 (3.1)
      Younger patients were more likely to rate the impact of the illness on their intimacy as moderate/significant (see Table 2). More specifically, those reporting a moderate/significant impact were on average 10 years younger than patients reporting none/little impact (52-year-olds vs. 62-year-olds, respectively; P = 0.002). Respondents who were currently in a relationship with a significant other were also more likely to indicate that their illness was having a moderate/significant impact on their intimacy (P = 0.028). For example, only 13% of those who were widowed reported a moderate/significant impact compared with 70% of married/partnered patients. Illness impact was associated with whether the patient had had a previous conversation with a health care provider (P = 0.024). Although few patients (n = 5; 5.2%) reported having had a previous conversation about intimacy with a health care provider, all (100%) of these patients reported that the illness had a moderate/significant impact on their intimacy.
      Table 2Self-Reported Impact of Illness on Intimacy by Patient Characteristics (N = 97)
      CharacteristicImpact of Illness on IntimacyP-value
      % None/Little% Moderate/Significant
      Age, yrs0.019
       18–3938.561.5
       40–4935.764.3
       50–5936.463.6
       60–6951.748.3
       70–7980.020.0
       80+90.010.0
      Gender0.227
       Male43.956.1
       Female56.443.6
      Race/ethnicity
      P-values reported despite low cell counts for chi-squared tests.
      0.219
       African American53.646.4
       Caucasian52.447.6
       Other race/ethnicity16.782.3
      Relationship status
      P-values reported despite low cell counts for chi-squared tests.
      0.028
       Married/partnered30.070.0
       Widowed87.512.5
       Boyfriend/girlfriend/engaged50.050.0
       Single59.540.5
       Divorced/separated58.341.7
      Principal diagnosis
      P-values reported despite low cell counts for chi-squared tests.
      0.521
       Cancer50.050.0
       Congestive heart failure38.961.1
       Other condition57.142.9
       Sepsis/infection50.050.0
       Chronic obstructive pulmonary disease/respiratory failure75.025.0
      Died within three months of admission?0.757
       Yes48.651.4
       No52.048.0
      Site0.115
       A76.923.1
       B49.150.9
       C42.457.1
      Intimacy previously discussed?
      Fisher's exact chi-squared test.
      0.024
       Yes0.0100
       No54.545.5
      Intimacy conversation helpful?0.188
       Yes46.853.2
       No57.142.9
       Ambivalent/unsure1000.0
       No response/not asked66.733.3
      Missing cases were excluded from all bivariate analyses. Statistically significant results (P < 0.05) are highlighted in bold. Percentages may not total 100% because of rounding.
      a P-values reported despite low cell counts for chi-squared tests.
      b Fisher's exact chi-squared test.
      The comparison of patients at the EOL vs. those who were not at the EOL resulted in only one statistically significant association—the site of care (see Table 3). A larger proportion of patients who were screened at Hospital Site “A” died within three months of the intimacy screening (63%), compared with Sites “B” (35%) and “C” (33%, P = 0.045). A post hoc analysis found that the patient population at Site “A” was substantially older than those from Sites “B” and “C.” In the study sample, the average patient age at Site “A” was 70 years (SD = 11), compared with a mean age of 58 years (SD = 17) at Site “B” and 53 years (SD = 15) for Site “C” (P = 0.005 for the omnibus analysis of variance test; P < 0.05 for both Bonferroni's post hoc evaluations comparing Site “A” to Sites “B” and “C”). The impact rating did not statistically differ based on proximity to death (P = 0.757). In both groups, over three-quarters reported that the intimacy discussion was helpful, 77.8% for EOL patients and 89.8% for patients who were alive beyond three months after screening (note: percentages reported here are based on column totals, which are not shown in Table 3). A slight majority of EOL patients (52.6%, also a column total) reported that their intimacy had been moderately/significantly impacted by their illness.
      Table 3Differences Between Patients Who Died Within Three Months After Screening vs. Those Still Alive
      CharacteristicDied Within Three Months After Screening?P-value
      N = 50, % NoN = 38, % Yes
      Age, yrs0.929
       18–3941.758.3
       40–4961.538.5
       50–5960.040.0
       60–6958.341.7
       70–7954.545.5
       80+55.644.4
      Gender0.499
       Male61.138.9
       Female53.846.2
      Race/ethnicity
      P-values reported despite low cell counts for chi-squared tests.
      0.334
       African American61.338.7
       Caucasian42.957.1
       Other race/ethnicity60.040.0
      Relationship status
      P-values reported despite low cell counts for chi-squared tests.
      0.576
       Married/partnered50.050.0
       Widowed40.060.0
       Boyfriend/girlfriend/engaged62.537.5
       Single65.734.3
       Divorced/separated46.253.8
      Principal diagnosis
      P-values reported despite low cell counts for chi-squared tests.
      0.119
       Cancer48.651.4
       Congestive heart failure76.523.5
       Other condition47.652.4
       Sepsis/infection40.060.0
       Chronic obstructive pulmonary disease/respiratory failure85.714.3
      Site0.045
       A37.063.0
       B65.334.7
       C66.733.3
      Intimacy previously discussed?
      Fisher's exact chi-squared test.
      0.456
       Yes56.143.9
       No75.025.0
      Intimacy impact rating0.757
       None/little59.140.9
       Moderate/significant55.844.2
      Intimacy previously discussed?
      Fisher's exact chi-squared test.
      0.456
       Yes56.143.9
       No75.025.0
      Intimacy conversation helpful?
      P-values reported despite low cell counts for chi-squared tests.
      0.200
       Yes61.138.9
       No25.075.0
       Ambivalent/unsure66.733.3
       No response/not asked33.366.7
      Missing cases were excluded from all bivariate analyses. Statistically significant results (P < 0.05) are highlighted in bold. Percentages may not total 100% because of rounding.
      a P-values reported despite low cell counts for chi-squared tests.
      b Fisher's exact chi-squared test.
      As Table 4 shows, among patients who provided an intimacy impact rating of little/none, we identified one overarching commonality and six main themes, which emerged from the qualitative data. In general, findings from clinical notes suggest that patients reporting little/no impact of the illness on intimacy also tended to have little or no pre-existing interest in sexual intimacy. For example, “I'm not doing ‘that’ right now, so that's not a worry” (<65-year-old female, EOL status unknown). Nested within this overarching commonality of diminished interest in intimacy, patients also shared six thematically grouped reasons for their limited, or nonexistent, interest: 1) a focus on recovery; 2) being older; 3) being sexually inactive; 4) past sexual trauma; 5) a lack of energy/low libido; and 6) body image concerns. Many attributed their lack of interest in pursuing intimacy to the fact that they were concentrating on improving their health and wanting to get better. Multiple patients also reported that they were not currently sexually active. This was largely due to not having a partner, for example, because of widowhood, separation, or divorce. Multiple older respondents (N = 4) indicated that they were “too old” to be interested in sexual intimacy. Table 4 describes the remaining themes, including subthemes with specific examples from patient quotes and excerpts from clinical notes.
      Table 4Qualitative Themes, Subthemes, and Descriptions of the Impact of Illness on Patient Intimacy
      Themes and SubthemesExemplary Quotations
      Subsample 1

      Respondents Reporting the Illness Had Little/No Impact on Intimacy
       Limited interest/desire due to the following:
      Focus on recovery“I'm not thinking about that now. I need to get better” [<65 yrs, F, EOL]
      Being older“Sex is no longer a part of my life. I'm too old for that” [65+ yrs, M, unknown EOL status]
      Being sexually inactive
      By choicePatient is working on herself and not interested in a relationship [<65 yrs, F, not EOL]
      No partnerPatient has not dated in many years [<65 yrs, F, EOL]
      Widowed“My husband died 10 yrs ago so I'm no longer intimate” [<65 yrs, F, not EOL]
      Past sexual traumaPast trauma; no intimacy since high school [65+ yrs, F, not EOL]
      Lacking energy/libido“I do not have the energy for all that anymore" [65+ yrs, M, EOL]
      Body image concerns
      Catheter“I have a catheter” [<65 yrs, F, not EOL]
      LesionsPatient expresses concerns regarding body image due to skin lesions. [<65 yrs, F, EOL]
      Subsample 2

      Respondents Reporting the Illness Had a Moderate/Significant Impact on Intimacy
       The desired level of intimacy was limited by the following:
      Symptoms
      Pain“I have trouble moving my body because of the pain” [age unknown, F, not EOL]
      Dyspnea“[Intercourse] is over soon because of my breathing” [<65 yrs, M, not EOL]
      Stress/strain“[After the diagnosis] everything was exacerbated by stress” [<65 yrs, F, not EOL]
      Treatments/equipment
      Devices“Who would want to be with me like this?”; pointing to implant [<65 yrs, M, not EOL]
      Ostomies“The [colostomy] bag ‘kills the mood’” [<65 yrs, M, EOL]
      Side effectsDifficulties related to patient's confusion due to treatment toxicity [<65 yrs, F, EOL]
      Hospital bedPatient has to sleep in a hospital bed in a different room [<65 yrs, F, EOL]
      A relationship breakup“[The illness/surgery] led to my relationship ending in some ways” [65+ yrs, F, not EOL]
      Impaired ability
      Being bed boundPatient has been bed bound for three months [65+ yrs, F, EOL status unknown]
      Erectile dysfunctionPatient is self-conscious regarding erectile dysfunction [65+ yrs, M, EOL]
      EOL = end of life (i.e., died within three months of receiving the intimacy screening); M = male; F = female.
      Direct patient quotes are indicated with quotation marks. Other excerpts are from clinical notes. Some patient information has been obscured to protect patient identity.
      Individuals who reported that their illness had moderately/significantly impacted their intimacy generally reported having an interest/desire for intimate contact (a prominent overarching commonality) but also shared that disease-related issues created multiple barriers. Five main themes were identified as barriers to intimacy. Specifically, these barriers were 1) symptoms (e.g., pain, dyspnea); 2) treatments or medical equipment (e.g., ostomies, single occupancy hospital beds); 3) stress/strain; 4) relationship dissolution (i.e., a breakup) connected to the illness; and 5) impaired ability (e.g., erectile dysfunction).
      Several patients described a yearning for physical intimacy and/or affectionate human contact. After reporting that his illness had significantly impacted his intimacy, one patient expressed, “I long for sexual intimacy” [>65-year-old male at the EOL]. Another patient who reported a moderate impact of the illness on her intimacy shared that “People do not touch me. No one touches me anymore” [<65-year-old female, not at the EOL]. Although intimacy was often interpreted by patients as a form of physical sexual expression, multiple patients remarked that, for them, intimacy also included nonsexual displays of affection, such as hugging and snuggling. One patient commented, “I think of intimacy as holding hands, cuddling, et cetera. I do not miss sex anymore, but it was good while it lasted” [>65-year-old male, not at the EOL]. Some patients had not previously recognized that their intimacy had been negatively affected by the illness. For example, one patient shared, “This really bothers me—I didn't even notice the problem until we started talking about it, but now I see it is a problem” [<65-year-old male at the EOL].

      Discussion

      In our sample, the presence of a serious or life-threatening illness was shown to impact patient intimacy to at least some degree in over two-thirds (68%) of cases; and a clear majority of patients (81%) reported the screening conversation about intimacy concerns was helpful. Among EOL patients, a majority (53%) expressed that their illness had moderately/significantly impacted their intimacy; and 78% found the conversation helpful, suggesting that intimacy remains important even with a prognosis of just months to live. PC clinicians should recognize that patient illness occurs within a larger social/relational context. Intimate relationships begin, evolve, and dissolve even in the face of serious illness. Furthermore, our qualitative data show that the presence of disease disrupts patient intimacy in a wide variety of ways, including by burdensome physical symptoms, overwhelming levels of stress and strain, treatments or equipment that complicate physical intimacy, impaired functional capability, and contributing to relationship breakups. Consistent with previous findings, these data also suggest a need for assessing sexuality and intimacy concerns for PC patients. Even patients who reported little or no impact on their sexuality and intimacy largely found the conversation helpful, perhaps, allowing space to process this loss was valuable. It is important for clinicians to be aware of any distress that might be caused by initiating the conversation, as it may bring up issues that patients or partners previously ignored.
      Patients who were younger and partnered were more likely to report a moderate or significant impact on intimacy, a finding that differed from our previous study.
      • Kelemen A.M.
      • Cagle J.G.
      • Groninger H.
      Screening for intimacy concerns in a palliative care population: findings from a pilot study.
      This might be explained because intimacy is sometimes interpreted as only relevant within the context of couplehood or only for younger or middle-aged adults.
      • Yoo H.
      • Bartle-Haring S.
      • Day R.
      • Gagamma R.
      Couple communication, emotional and sexual intimacy and relationship satisfaction.
      Another possible reason is that, compared with our previous pilot work, this study had greater analytic power to detect statistically significant associations.
      Additional study is needed to identify and test interventions designed to address concerns related to intimacy that are appropriate for PC populations. For the themes identified in Table 4, even patients who reported intimacy having little or no impact still had important concerns, which could be further explored. For example, individuals reporting past sexual trauma might benefit from a therapist referral. Or individuals with body image concerns (ostomy bags, catheters, skin lesions, etc.) could have tailored interventions to address those concerns.
      The intimacy screening used in this project did not explicitly assess a patient's desire for intimacy or sexual contact nor how that level of desire was affected by illness. Our qualitative results suggest that these elements are clinically relevant. Thus, future study should examine how the manifestation of disease influences patient libido and their preferred level of intimacy.
      Although not a primary objective of this project, results also demonstrated that the intimacy screening can be easily implemented by multiple clinicians working at three different hospital sites. More evidence, however, is needed to better understand optimal implementation strategies, including training for screeners and effective interventions to address intimacy problems and concerns. We suspect that, given the general feelings of discomfort with bringing up this topic, more education is warranted for clinicians on how to bring up the subject, facilitate discussion, and explore possible, viable interventions.
      Results should be considered with respect to project limitations. Data came from patients receiving care at one of three urban hospitals located within the same general geographic region. Thus, findings may have limited generalizability. We determined patients to be at EOL if they died within three months after discharge, but we could have used hospice eligible (less than six months) to categorize EOL patients. However, it was not feasible for our clinical team to track patient mortality beyond three months after screening. Reports that the intimacy conversation was helpful may be inflated because of a lack of blinding. Data were collected by the clinician who facilitated the conversation, and thus, patients may have been subject to social desirability bias. In addition, we allowed patients to define what intimacy means to them, and future studies could provide a more concrete definition of either intimacy or sexuality. Finally, data regarding the gender of patient's intimate partner were not collected as part of this study. Future research is needed to explore whether experiences of intimacy are similar for both same-sex and heterosexual couples.

      Conclusion

      Intimacy and sexuality are core dimensions of patient quality of life that are often overlooked in PC settings.
      • Cagle J.
      • Bolte S.
      Sexuality and life-threatening illness: implications for social work and palliative care.
      • Gallo-Silver L.
      Sexuality, sensuality, and intimacy in palliative care.
      Our data show that patient intimacy is critically threatened when serious illness occurs and that most patients—even those at the very EOL—want to talk about issues related to sexuality and intimacy with PC providers. Hence, PC teams could consider including an assessment of relevant sexuality and intimacy concerns as a routine part of a comprehensive psychosocial assessment and collaborate to develop care plans that address pertinent patient concerns.

      Disclosures and Acknowledgments

      The authors have nothing to disclosure.

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