This presentation is a resource developed as part of a face to face education event or workshop.

The target audience is health and social care professionals in roles providing palliative and end of life care

The author has agreed to share the work to enable best practice in the provision of end of life care Addressing intimacy and sexuality

Thursday 8th November 2018 Alex Moseley Outline of today

• Introductions and warm-up • Sexuality and intimacy • The impact of illness • Starting the conversation • Break • PLISSIT (and EX-PLISSIT) • 5 Ps of Sex and the circular model of sex • Scenarios • Recap, questions and close Creating a safe space for our work

• Confidentiality • Share what you are comfortable with • Participate • Ask questions • We are all experts and yet none of us know everything! • One person at a time • Respect each others’ opinions even if don’t agree • Be conscious of time and what may need to be handled today The A-Z of Sex! Sexual Health

Sexual health is a state of physical, mental and social well-being in relation to sexuality. It requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. http://www.who.int/reproductivehealth/topics/sexual_h ealth/sh_definitions/en/ Intimacy: definitions

Is about depth – of seeing and experiencing who our partners are – the deeper and more vulnerable aspects – and them seeing and experiencing us in that way too.

How comfortable do you feel in expressing who you are, your desires, your needs, your sorrow, pain and pleasure, with someone else?

There are different elements of intimacy, including: *Intellectual *Emotional *Sexual Research findings

From Morrissey et al. (2018): • Sexuality and intimacy play an important role at every stage of life • Sexual and intimate expressions are still important to people with terminal diseases • Physical contact is invaluable for people during end-of-life transitions • Sexual activity is sometimes too narrowly defined as or a small range of related activities Research findings • Sometimes our cultural norms and myths get in the way of talking about sexual needs • We can often avoid discussions surrounding sexual expression in end-of-life care • People often report asking their physicians sexual questions, but many times important questions do not get asked • Medical providers often ignore the potential need for sexual expression, especially at the end of life. Reflecting on your own values

‘The process of working with clients who are at the end of life can trigger a clinician’s own positive and negative memories of the deaths of people they have cared about, including assumptions about sexuality and personal fears of death and dying’. (Morrissey et al, 2018)

There is a need to be aware of our own habitual ways of thinking about sexuality, the end of life, and aging.

What’s right for them may not be what’s right for you! Impact of disease, illness, disability on sexual functioning

Think about four phases:-

•Sexual desire (feeling turned on or “horny”) • (physiological response- excitement, passion, , lubrication etc) •Plateau (more intense excitement) • (release of pooled blood in sex organs and muscle tension)

Think about the patients you care for…what emotions, conditions, diagnosis, symptoms, treatment can affect them and their sexual functioning? Starting the conversation

How comfortable do you feel being able to start a conversation with patients about their /bodies?

Very comfortable>Not comfortable at all https://www.psychiatryadvisor.com/practice-management/improving-provider- education-regarding-sexual-health/article/629446/ Permission

How can you make the patient feel comfortable and feel like they have permission to speak about something difficult or intimate? Permission

• How can you make the patient feel comfortable and feel like they have permission to speak about something difficult or intimate?

• Not just about what you communicate verbally – is about body language and the signals you give off • Allowing time, ensuring confidentiality, privacy, trust • Patients should be able to choose who they disclose to • Terminology, language, understanding eg agree who they mean by ‘family’ • Use of cue questions (questionnaire) • Provide space for grief, anger, distress – stay with them • Acknowledge needs of sexual partners • Acknowledge culture, upbringing, class &/or sexual background • Include sexuality in family care plan with client’s consent Starting to talk • Naming and normalising the difficulty/awkwardness eg

‘It is really common to feel anxious when talking about the the most personal and intimate parts of our lives. Some people find it awkward but that it is useful.’

• Other patients I have spoken to have said…

• Exploring intention ‘If we were to talk about sex and your relationship… What would you hope would come out of our conversation?’

• What might be difficult to talk about.. For your patient and for you? Asking questions about sexual history

• How would they describe their sexual relationships, if any? • What has the impact been of their illness/treatment on… • …Their body and sexual function? • …How they feel about themselves and their partner? • …Their relationship (if any)? • Does it feel as though something has changed in their sexual lives? If so, what? • Are they able to talk to their partner about their feelings? • Do they feel able to investigate alternative ways to be sexually intimate? • Is there anything that we could talk about or get information on that would be useful? Limited Information

• Supply the client with limited and specific information • This may include disease specific information eg effect of treatment(s) on sexual function • Use clear, nontechnical language • Address any myths or misconceptions • Normalise eg possible changes in sex drive or expression • Provide limited, non-expert education eg on sexual changes due to medication, on alternatives to penetrative sex Sex does not have to mean babies, intercourse or People have sex for any or a combination of reasons.

Cormier-Otano (2011) (referenced in Laffy (2013)) outlined the ‘Five Ps of Sex’ :

1) Pleasure (feel-good, inner chemistry) 2) Play (fun, expression, escapism and creativity) 3) Procreation (existential needs, meaning, contributing) 4) Parallelism (a parallel experience of matching with another, being in unison) 5) Palliating effect (to relieve or lessen pain, alleviate stress, to rebalance) A circular model of sex

Touching

Penetration Thrusting

Talking Eye Contact

Genital contact Fondling

Kissing Holding

Caressing Copyright: Laffy, (2013) Specific Suggestions

• Provide specific suggestions to help patients adapt to changed body & sexual health • Working with the • May require more advanced knowledge/skills based on experience & additional training Intensive Therapy

• Refer client to other professionals with expertise in specific areas • Intervention for most complex interpersonal & psychosocial issues. • Used for patients with specific issues eg /abuse, trauma • Important to involve a worker or trained therapist • Have a list of referrals in your workplace EX-PLISSIT Model

• Permission giving at its core • Requires asking the patient to review the interaction and give the opportunity to express any further worries or concerns • Requires professional to reflect, challenge own assumptions and extend knowledge • Developed by Sally Taylor and Bridget Davis (2006) Dealing with Complex Situations

• There can be tension between supporting human rights (eg the right to privacy and family life - Human Rights Act (1998), article 8) and acting within legal frameworks and professional codes of conduct

• Each situation needs to be assessed on its own merits and risk must form part of it

• Seek the views of key people and seek specialist advice where appropriate

• Approaches should be person-centred and personalised, rather than based on assumptions and stereotypes Scenario A A woman with dementia and intermittent capacity lives in a care home. Her husband wants to be intimate with her when he visits and she seems to accept this. Scenario B

A resident with capacity starts a relationship with another resident who also has capacity and is married with a partner at home. Scenario C A resident who is disabled and physically unable to care for himself asks a staff member to assist him with . Referral options? Helpful strategies… a recap

1. Name the embarrassment/awkwardness.

2. Normalise anxieties and make clear that this question may have come up before.

3. PLISSIT and EX-PLISSIT models

4. Ask ‘what would you hope would come out of a conversation about…?’ Helpful strategies… a recap

5. Ask ‘What might be difficult for us to talk about?’

6. Know your referral pathways, and your limits, and have resources to hand

7. Check in how the conversation has been; affirm.

8. Seek support, especially with any complex situations. Questions References

A) Morrissey, K A, Bower K L, Seponski, D M, Lewis, D C, Farnham A L, Cava-Tadik, Y. (2018). A Practitioner’s Guide to End-of-Life Intimacy: Suggestions for Conceptualization and Intervention in Palliative Care. OMEGA— Journal of Death and Dying. Vol. 77(1) 15–35

B) Stausmire, J M. (2004). Sexuality at the end of life. American Journal of Hospice & Palliative Care. Vol. 21(1) 33 - 39

C) Royal College of Nursing (2011). Older people in care homes – sex, sexuality and intimate relationships. A RCN discussion and guiding document for the nursing workforce.

D) Laffy, C. (2013) LoveSex: an integrative model for . London, Karnac Books. Kindle edition.

E) Does a hospital bed impact on sexuality expression in palliative care? British Journal of Community Nursing. Vol 14 (1) 122 – 126.

F) Cormier-Otaño, O. (2011). Intimacy, desire, asexualities. Unpublished paper.