Addressing sexuality and intimacy in people living with Parkinson's during palliative care and at the end of life

Hypersexuality

Impulse control disorder has been characterised by Ceravolo et al (2009) as:

Characteristics of hypersexuality are described as a fixation with sexual thoughts, continual demands and desires for sexual practice and regular use of sex lines, contact with sex workers and internet pornography (Vitale et al, 2011). This can have a profound effect, with a devastating impact on a couple's relationship, causing distress, guilt and loss of trust and, in some cases, safeguarding concerns when risk-taking behaviour occurs. Hypersexuality is reported in 4.3% of Parkinson's patients (Cooper et al, 2009). Although this is recognised mainly in younger people with Parkinson's, it can also occur in older people and be under-reported (Weintraub et al, 2015). Because this is now a well-publicised and highlighted potential side effect of Parkinson's medication (Moore et al, 2014b; Ambermoon et al, 2011) it has become common practice in recent years to discuss the possible side effects, particularly ICDs, when commencing any medication for Parkinson's, but especially dopamine agonist medication. This should occur at the diagnosis stage of Parkinson's, where written and verbal information should be provided, using a validated tool available on the Parkinson's UK website (Grosset et al, 2010), and should be revisited at each clinic appointment. ICDs, as a side effect of medication, can potentially occur at any stage in the Parkinson's trajectory.

A Parkinson's nurse specialist would routinely screen patients at each clinic appointment to see whether drug therapy has potentially caused this side effect. Patients are encouraged to contact the nurse between clinic appointments if this occurs to ensure medication can be altered accordingly and alleviate the side effect. Because this has become the norm in professional settings, it is not seen as a taboo and patients are empowered to openly discuss the issue, with the professional initiating the conversation at every clinic visit or telephone consultation.

Sexual dysfunction

Sexual dysfunction in Parkinson's is a common occurrence (Chaudhuri et al, 2014) and may include a number of issues such as erectile dysfunction, loss of libido, vaginal dryness and anorgasmia (Bronner, 2011), with several studies identifying the necessity for further research in this field (Martinez-Martin et al, 2011; Gallagher et al, 2010). This NMS may also be poorly recognised because patients are embarrassed to mention the subject in conversation with professionals. This may skew the results in both quantitative and qualitative research studies that have attempted to address this. This problem is also identified in ethnic minorities whose culture prohibits discussion of sexuality (Khoo, 2009).

The main determinants for sexual dysfunction in Parkinson's have been identified as age, severity of the condition and depression (Rees et al, 2007), but Parkinson's symptoms can affect sexual function across the disease trajectory (Bonner, 2011). Sexual dysfunction can be a significant concern in other neurological diseases such as multiple sclerosis (MS) (Foley and Beier, 2015) and in long-term conditions such as diabetes (Várkonyi and Kempler, 2014) and heart failure (Schwarz et al, 2008), and is also associated with ageing. As Parkinson's is more prevalent in the over-50s, it is not uncommon for people to develop more than one comorbidity, which could increase the probability of sexual dysfunction occurring. Increased polypharmacy may also be a contributing factor because medications such as antihypertensives, antidepressants, cholesterol-lowering drugs and antipsychotics, to name a few, can impact on sexual function (Morrissey et al, 2018).

The literature concentrates on the physical aspects but generally disregards the impact of the emotional expression and intimacy a couple may lose with Parkinson's (Martin, 2016). The ability to touch or hold hands becomes more difficult due to tremor, rigidity, lack of dexterity and dyskinesia. The loss of facial expression reduces the ability to smile and laugh. The ability for emotional connections through communication is impaired by speech difficulties and couples may be unable to kiss owing to sialorrhoea (excessive saliva/drooling). Night sweating, rapid eye movement (REM) sleep behavioural disorder or urinary incontinence, common in Parkinson's, can impact on the ability for partners to sleep together, again affecting the closeness of a cuddle or touch. Parkinson's thus has a huge impact on a person's identity and personality, with natural expressions of sexuality and intimacy either impaired or lost. This can be compounded by apathy, depression and anxiety. The impact of these losses creates sadness and grief not solely for the patient but also their partner and loved ones. Table 1 includes further symptoms that can contribute to this. Although these symptoms are often discussed in a clinical setting it is unusual for a patient to identify these as an impact on their sexual connectedness. These discussions would usually be addressed as a medical issue and managed as such with medication to improve symptoms or referrals for speech and swallowing assessments, for example.

The Parkinson's PDQ-39 questionnaire (Moore et al, 2002) has been designed for Parkinson's patients to self-complete to identify and measure their health state and wellbeing, and has been the subject of validation and feasibility studies. Sexuality is not adequately addressed in this (Moore et al, 2002), despite Parkinson's symptoms impacting on sexual function across all stages of the disease (Bonner, 2011).

Reasons for unmet needs

Palliative and end-of-life care has historically been seen as a provision for people with a diagnosis of cancer. Only in recent years has access to hospices and palliative care services been open to increasing numbers of people with progressive neurological conditions at the end of life and earlier in the disease trajectory (Boyd and Murray, 2010). This has been driven by Department of Health (DH) policies (DH) (2005; 2008) and clinical governance documents in England (NHS England, 2014; NICE, 2017a; National Council for Palliative Care (NCPC), 2011), and numerous other evidence produced by charities such as Parkinson's UK. Owing to multifaceted challenges and fluctuations in neurological long-term conditions, it is evident that collaboration is required between palliative care specialists and neurology services, with input required at various times along the disease trajectory.

Unfortunately, a significant proportion of the public still equates hospice and palliative care with people with cancer, despite political drivers to improve on this (NCPC, 2011). This may coincide with service users who have progressive neurological conditions not discussing all their unmet needs because clinic appointments remain medically oriented and time specific, or patients assuming that it is not appropriate to discuss this subject in this setting.

A clinic assessment may not be truly holistic, with certain aspects of a patient's condition overlooked and seen as taboo in relation to end-of-life care, with symptom management being the primary concern. Failure to acknowledge sexual and intimacy needs can adversely impact not only the patient's wellbeing in regards to increased stress, low self-esteem and potential depression, but also their partner, who may also have taken on the role of main carer.

Intimacy is not only affected by illness and medication management. Little thought is given in consultations on how equipment in both hospital and community settings may impair physical contact. Taylor (2011) studied this issue and concluded that the use of single beds and the need to avoid stairs by sleeping separately downstairs from a partner limits physical contact, as do modified chairs, bed rails, medical equipment, and communication aids such as lightwriters. A lack of privacy can also affect the ability of a loved one to have close contact. This is supported by Bowden and Bliss (2009) who suggests consideration should be given to the design of hospital beds.

Intimacy and sexual expression is of major importance (Hand et al, 2010; WHO, 2019b) and contributes to quality of life. However, it is a neglected part of nursing care (Lindau et al, 2011; East and Hutchinson, 2013). The WHO (2010) suggests nurses should be at the forefront of delivering sexual health advice through sensitive conversations, empathy and establishing trust. The emphasis is often placed on the physical aspect of the sexual act, but sexual expression and intimacy are just as an important human behaviour, requiring openness in communication, facilitating physical and emotional connectedness and interpersonal interaction. Poor assessments by nurses and open discussion are lacking not only for people with neurological conditions but also across many medical conditions (Magnan et al, 2006). The rationale for this may be multifaceted. Patients can feel embarrassed due to the nature of this discussion, or have the impression that professionals will not understand sexual diversity. There may be cultural, social or religious reasons for non-discussion. Health professionals frequently acknowledge the importance of sexuality for their patients by completing generalised questionnaires, but have struggled to action this (Blagbrough, 2010) which in part may be due to their own beliefs (Redelman, 2008), assumptions or responses to positive answers on questionnaires.

Health professionals working with people with multiple sclerosis have acknowledged there was an unmet need in this area and produced a toolkit for MS nurses (Astbury-Ward, 2007). The toolkit allows an open conversation between patient and health professional. Questions can be instigated by health professionals via a questionnaire but can be acted on by information and signposting available within the toolkit to address issues of concern without a delay or referral to other services. This may have been instigated because MS occurs in the younger population, whereas in Parkinson's the cohort are seen as older. This practice does not appear to be followed in other neurological disorders (Marsden and Botell, 2010) or cancers (Wang, 2018) despite the literature highlighting the need to discuss sexuality and intimacy with patients (Marsden and Botell, 2010; Wang et al, 2018). Research into sexuality and intimacy in terminal illness has been overlooked (Taylor, 2014). This is similar in other long-term progressive chronic conditions, including Parkinson's. There are no recommendations in the recently reviewed NICE (2017b) guidelines for Parkinson's, with Martin (2016) stating that research is warranted in Parkinson's.

Reasons for the absence in addressing this unmet need are multifactorial. The vast majority of literature states that patients do not highlight this unmet need because they believe the health professional should be instrumental in initiating the topic (Stausmire, 2004; Leung et al, 2016; Dyer and das Nair, 2013). When questions are posed by patients they are frequently not addressed (DeLamater, 2012), with health professionals potentially feeling vulnerable, embarrassed, or out of their depth in such conversations. This was found across all adult age groups. Most respondents would have welcomed an open conversation with their health professional (East and Hutchinson, 2013; Gleeson and Hazell, 2017).

Over the years, several sensitive topics of conversation in a consultation could have been perceived as taboo—bowel actions, end of life and sexual relationships (Redelman, 2008). In Parkinson's assessments, bowel actions are now routinely discussed throughout the disease trajectory because patients are well informed of the importance of managing their symptoms and the efficacy of medication, with educational material available. In recent years, proactive national initiatives, such as leaflets and booklets published by the Dying Matters charity to encourage open discussions regarding end of life (https://tinyurl.com/dying-matters-info), are beginning to break down the barriers to communication (Travers and Taylor, 2016), not only in a clinical environment but in the public domain. However, sexuality continues to not be on the national radar, or acted on in clinical practice, despite evidence of its importance.

Sexuality and intimacy play a pivotal role at every stage of life (Butler and Lewis, 2002), with intimate expression imperative at end of life (Nyatanga, 2012), but are often overlooked by health professionals, despite documentation to identify and address the issues. Although this is a sensitive topic, there is overwhelming qualitative research suggesting patients are open to having such discussions with very few declining (De Vocht et al, 2011; Kelemen et al, 2016), and with many patients developing closer relationships during ill health (Morrissey et al, 2018; Gardner, 2008). Patients do not perceive the discussion as too intrusive and do not have a preference for the gender or age of the professional with whom they would discuss it (Hordern and Street, 2007a).

Studies have shown that people receiving palliative and end-of-life care continue to value sexual thoughts and feelings (Lemieux et al, 2004), and resilience, emotional connection and intimacy are important (Hordern and Currow, 2003). This remains important in older people (Bauer et al, 2016), with Lindau et al's (2007) research revealing sexual activity can continue into a person's eighties. This research involved interviews with 3005 people, with almost equal numbers of men and women, and there was also a 75% response rate to self-reported questionnaires using validated tools. The researchers concluded that men especially remain sexually active, although in declining numbers due to poor health. This research was limited to certain sexual questions and self-reporting and concluded that further research was required (Lindau et al, 2007).

In light of such research, why is sexuality/intimacy such a difficult topic to address in clinical practice? Gleeson and Hazell (2017) concluded that the most frequent reason for professionals failing to discuss the subject was because it was not the presenting symptom. In some respects, attitudes by professionals towards this topic could be perceived to have not moved forward from the Victorian era when sexuality and sexual expression were not considered topics for discussion in public (Hall, 2013).

There is also stigma attached to sexuality in older people (Syme, 2017), with the implication that sexuality should not be an issue in this age group. Prejudices and assumptions are made by health professionals in relation to patients' age, sex, diagnosis, culture and partnership status (Hordern and Street, 2007b; De Vocht et al, 2011), without necessarily consulting with the patient first. It is crucial not to assume all patients are married or in a regular relationship, but to address the subject of whether support and advice is necessary with all patients. This has been recognised by the Nursing and Midwifery Council (NMC) Code (2018), which states that nurses should avoid making assumptions about people and recognise their diversity and individual choice. Consideration should also be given to cultural diversity in the UK, because not all cultures have open communication about sexuality within families or in their education.

Part of nursing's philosophy requires nurses to demonstrate a desire to promote patient wellbeing. In this context, sexuality and intimacy can impact on other aspects of a patient's quality of life in a positive way by reducing sensitivity to pain, improving cardiovascular health, and reducing depression (Syme, 2017) and anxiety.

Education and the nurse's role

Education in relation to sexuality may not be provided in the nursing syllabus, potentially impacting on nurses' perceived ability in clinical practice to respond to patients' concerns (Kotronoulas, 2009). A person-centred approach is paramount from the initial consultation with a patient, alone or with their partner. Proficient communication skills are key to enable the patient to feel safe and gain trust in the partnership. It is of paramount importance that conversations are evidence based and communicated in terminology understood by the patient and that cultural sensitivity is respected (NMC, 2018). Engaging patients in sensitive conversations requires accomplished conversational techniques (Parry et al, 2014). Even if the topic of sexuality is addressed, the health professional may fail to understand the most concerning factor for the patient.

St Christopher's Hospice in London has been innovative in leading the way in educational days for health professionals, providing consistent training programmes to assist in improving their knowledge and skills in addressing sexuality with patients (Cort et al, 2004). This should be expanded to educational days on sexuality in hospitals and community settings for professionals and signposting them to consider online learning via the e-learning website for end-of-life care (e-ELCA).

Nurses are expected to work within their clinical competence (NMC, 2018). Addressing or initiating conversations on sexuality and intimacy can be uncomfortable (Hordern and Street, 2007a) as they may feel their clinical knowledge and skills in this field are inadequate, with a lack of information available to signpost on to appropriate services. Various information booklets are available regarding sexual relationships for patients via Parkinson's UK or other Parkinson's-related websites and cancer websites such as Marie Curie. However, in practice, it is usually not part of routine discussion in clinical appointments to review the information available with patients or reflect on whether this has been helpful. The assumption is that patients will instigate the conversation if this area is still of concern or seek referral through their GP to a specialist psychosexual counsellor.

Models of care

On critiquing the literature, it is apparent that several models are available to assist in improving conversations with respect to sexuality but lack of research hinders the validity and reliability of any one tool (Smyth, 2018). Despite the availability of models they are seldom used in practice (Wang et al, 2018). The most frequently used is the Extended PLISSIT model (Taylor and Davis, 2006; 2007) adapted from the original PLISSIT model by Annon in 1976. This model has been endorsed for use in palliative care (Cort et al, 2004). Annon's model designed four levels of consultation with a patient:

The extended version recognised that there was a further requisite when reviewing and reflecting on each phase of discussion to ensure that information had been provided and needs met prior to further discussions. This helps with building a therapeutic relationship between health professional and patient. It was also deemed essential to ask for permission from the patient to continue with this approach at each consultation. In using this model approach, the health professional is encouraged to review and reflect on their own clinical practice and beliefs to ensure that their own biases, attitudes and judgements are not imparted to the patient.

The aim of the model is for health professionals to feel confident in initiating a conversation on sexuality and intimacy with a patient by seeking permission to discuss the subject and portraying it as permissible to talk about in a non-judgemental way with open-ended questions (Higgins et al, 2006). Through each level the model provides guidance for the professional on how to help steer the conversation. It also encourages the health professional to reflect on their own knowledge and experience to enable them to recognise their own limits of expertise and facilitate referrals to a specialist in this field, if required. This model may be of benefit with people living with Parkinson's because it has already been trialled in people with MS (Astbury-Ward, 2007) and motor neurone disease (Marsden and Botell, 2010). Box 1 provides a sample of a proposed discussion.

Adapted Extended PLISSIT model for use in assessing sexual health in people with Parkinson's

Permission: initiate conversation with patient by using open-ended questions, eg: ‘Would it be OK to ask you some questions about how Parkinson's or medications may be affecting/impacting on your sexual health/intimacy?’

‘If you are currently in a relationship, would it be acceptable for your partner to attend these appointments with you to discuss concerns that may be impacting on your relationship and what is important to you?’

Limited information: the health professional would provide brief education on how Parkinson's can impact on sexual health/intimacy. The health professional would also review any medications that interfere with sexual function and intimacy

Specific suggestions: depending on replies to open-ended questions, the health professional can tailor an individual care plan to assist the patient and provide solutions to specific concerns, making care person centred and holistic. Concerns may alter over time with disease progression, with further concerns raised

Intensive therapy: if there are ongoing issues that cannot be resolved, then the health professional may feel their knowledge/skills are insufficient to progress further. In such cases, the health professional should seek permission to refer on to a counselling specialist in this field

Machin (2014) suggested that, to assist with moving forward with dealing with loss and grief, there are three components to the consultations: construction, deconstruction and reconstruction. Initially, the nurse will need to help the patient to tell their story and acknowledge their loss. This will lead on to assisting in exploring this story and processing how the patient's emotions impact on this loss, with then addressing ways to help the patient move on and adjust to their loss. This thought process should be considered when addressing sexuality and intimacy conversations.