1. Robyn Reid MND SCW

2. Sexuality and palliative care Health care professionals may make assumptions based on age, partner or status about sexuality HCP’s are not expected to go beyond their comfort level HCP’s are expected to be able to listen to concerns about sexuality with empathy and non-judgement HCP’s must be able to give permission to clients to grieve any loss and discuss concerns related to sexuality and sexual health

3. Sexuality Sexuality is a subjective, internal experience. It involves complex physical, psychological and biological components Sexuality is not static but rather is part of the individual’s on-going life changes. Each person has her or his own individual concept or agenda of sexuality.

4. Sexuality Sexuality is closely linked to intense emotions, self- image, and self-consciousness. Suffering from sexual problems is subjective and is the result of a mismatch between the desired and the experienced sexual life.

5. Sexuality and palliative care The helpful HCP: is able to listen carefully and actively, is open to and interested in the patient’s concept of love and sexuality, is able to respond to complex emotions such as shame is able to respect and not be judgemental of the patient’s sexual practices.

6. “Sexuality is much more than the act of sex; it is the need to be held, to be intimate and ultimately to feel loved.”

7. Sexuality Physical processes: the physiology of the human sexual response. Psychological processes: desire, arousal, body experience, self- perception, gender identity Social processes: interaction with the partner, social norms, etc. Disturbances on one level will also affect the others, so these processes cannot be dealt with in isolation. Brandenberg and Bitzer (2009)

8. Sexuality and palliative care Factors impinging on sexuality in palliative care Treatments Drugs, chemotherapy, radiotherapy which may affect tissues, function, cause impotence Symptoms Muscle spasm, pain, paralysis, difficulty communicating, fatigue, nausea, respiratory function, wounds, secretions, dementia

9. Impact of illness on intimacy and sexuality “I’ll miss her body as well, the sex, the caresses, the kisses. Just recently half of her face has gone numb and lost all feeling. I kiss it now and she can’t feel it … I hate thinking that bits of her are already gone from me’” -account of the husband of a 28-year-old patient with adenocystic carcinoma.

10. Intimate Marked by close acquaintance, association, or familiarity. Relating to or indicative of one's deepest nature Essential; innermost: the intimate structure of matter. Marked by informality and privacy, very personal; private. Of or involved in a sexual relationship. A close friend or confidant.

11. Intimacy in palliative care Palliative care work is an intimate arena-more so than many other types of work-deals with dying which touches people deeply-intimate by its very nature. How do we create intimacy to help clients tell us their concerns? (Sex and death the two taboos..) How do we as health professionals deal with/manage being intimate with people in this field?

12. Sexuality and palliative care Psycho-social Changes in role-spouse to carer Time-appointments, visitors, burden of care Privacy Emotional distress, anger/resentment, grief, fear Intimacy may confront dying and future loss Body image issues Environment Equipment –tubes, NIV, Beds, wheelchairs

13. Sexuality and palliative care The invasiveness of non invasive ventilation etc

14. Taylor B. Davis S. (2007)

15. Ex-PLISSIT: The Extended PLISSIT Model Permission-giving (not just normalising) Limited Information Specific Suggestions Intensive Therapy Reflect Review (Davis & Taylor, 2006)

16. Permission giving Most people experiencing sexual problems can resolve them if given permission to be sexual, to desire sexual activity and to discuss sexuality. Talking can be therapeutic Validate concerns and allow them to be ‘heard’ Empathy and capacity to listen even when you might not know the answers Ask questions about changes in intimacy when changes occur that may impact upon it

17. Permission giving How is your relationship with your partner? How has... affected you as a couple? Some people find that it impacts upon their sexual relationship. Is there anything you would like to ask me about? Using significant changes to initiate discussion. Eg –the move to hospital bed, wheelchair, loss of movement in arms or legs, specific symptoms How do you think this will affect your relationship? How will you manage this? Feel about this?

18. Limited information Some people with muscle spasms find some sexual positions more comfortable than others Many people experience impotence as a side effect of this drug. Is this something you have experienced? Having a hospital bed has many advantages but it may also impact on your relationship as a couple.

19. Specific suggestions Pain-suggest that analgesia is taken before sexual activity and that this occurs at a time of day when they are least tired Suggest alternative sexual activities Suggest alternative ways of communicating love and affection

20. Specific suggestions Warm baths can reduce muscle spasm and help with sexual activity Sign language for I love you when there is no speech. Some sexual positions are more physically demanding than others. Sufficient sleep and respite

21. Specific suggestions Treat underlying conditions such as depression. Feel connected and foster intimacy in other ways. Having time out from caring role to have time alone or have fun to reassert relationship connection other than carer.

24. Intensive therapy Intensive therapy can be offered at any stage Recognise your own strengths and limitations and refer on to a peer or expert: Psycho-sexual therapy, Relationship counselling Urology Gynaecology or continence advice etc

25. Review Once the topic has been discussed don’t assume that sexuality has been fully addressed Seek the client’s perspective and provide further permission-giving to discuss how things are going since the last conversation

26. Discussing sexual issues Be purposeful but provide a context Don’t make assumptions/don’t stereotype Ask questions Avoid value judgements Address relationships Ask when you don’t understand a term Address confidentiality/privacy