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The Effectiveness of Spikenard Essential Oil in the Management of Agitation and Distress in End of Life Care Project team: Caroline Hales (team leader), Beth Kelso, Mezzi Franklin, Jane O’Shea, Murray Fletcher and Margaret Beck Contact details: Caroline Hales: carolinehales@northdevonhospice.org.uk Duration of project: November 2014 – June 2016 Date report submitted for publication: April 2017 Keywords: Spikenard, essential oil, restlessness, terminal agitation, distress, end of life care Summary of project: This particular project took place at the North Devon Hospice, a hospice containing a seven bedded in-patient unit, in which approximately 60% of patients are admitted for symptom management and 40% are admitted for end of life care. The complementary therapy manager at the hospice attended a national conference for complementary therapists where she heard a presentation that claimed that spikenard, the essential oil, could, amongst many other things, help to alleviate symptoms of terminal agitation in the dying. Spikenard is a herb of the valerian family and is commonly used in Eastern and Ayurvedic medicine. It is classified as a hypnosedative and claims to soothe anxieties, installing a great sense of calm by harmonising the physical, emotional and spiritual, and assisting people in letting go of fear and old emotional wounds (Pereczes, 2005). The aim of the project was to establish whether spikenard essential oil could be used as an effective means of managing end of life agitation and distress, thus reducing the need for sedative medication to calm patients. If so then it could lead to an improvement in the patient’s experience, their quality of life; it could help them to make the best of their remaining time. During the project, the team engaged in various activities, including, creating a steering group, devising the protocol, the information leaflets, consent form, and assessments, applying to the ethics committee, organising workshops for engaging the staff on the inpatient team and forum theatre events. One of the biggest challenges was developing the IRAS application for ethical approval for the study and gaining consent for people to take part in a study when they were either very vulnerable because of their condition or lacked cognitive capacity. Unfortunately, no patients consented to take part in the study and therefore there is no formal evaluation data only anecdotal evidence. However, the benefits of undertaking the project have been the improved multidisciplinary team working and personal growth and development of the team. All of which will impact on improved patient care and experience in the long term. Introduction Terminal restlessness is a common symptom amongst patients who are dying, which can also be distressing for those who witness it. Experienced nursing and medical staff may recognise it very readily, but relatives and friends may never have come across it before and are often bewildered and distressed to see their loved one in such a state of agitation. It is often characterised by an

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apparent need to get up out of bed, to go somewhere, to do something, and all with an intense feeling of urgency. It often seems to compel the patient to do more than their strength and ability allows, putting them at risk of falling or of injuring themselves. It is believed that up to 85% of dying patients manifest signs of terminal restlessness (Chand, 2013). Those who care for people who are dying will first endeavour to treat any treatable causes of agitation. Possible causes of agitation in end of life care include opioid toxicity, a full bladder, drug interactions, organ failure, sepsis, intracranial pressure, metabolic changes such as hypercalcaemia, unmanaged pain, and more. Therefore, for example, analgesia might be administered in the first instance. A patient’s bladder may be examined, a catheter passed if deemed appropriate. All effort will be made to soothe the distressed patient, to calm their environment, to explain to their relatives what is happening and what they can do to help. Often, however, when all else fails, it is deemed necessary to resort to sedative medication. Commonly, medications such as haloperidol, levomepromazine and midazolam are used, and these can be very effective. It is considered entirely appropriate to give sedative medication to alleviate terminal restlessness, it is considered a kind and compassionate thing to do to alleviate the distress experienced. However, this use of sedation presupposes a certainty regarding the diagnosis of terminal agitation. Terminal agitation is identified as that which occurs within the last three days of life (Chand, 2013). It is not always possible to be absolutely certain and this means that sedation may be used prematurely. If it is used at the point at which a person has no possible hope of addressing any issues or concerns that may be troubling them, or of having useful and meaningful conversations, for example, then this would probably be considered acceptable and desirable. But supposing there is a chance of that person having even just one more meaningful exchange with a loved one, or seeing a blue sky, then that same use of sedation might be deemed entirely inappropriate. This is the dilemma faced by healthcare staff, even very experienced healthcare staff in a hospice setting, accustomed as they are to observing the signs of terminal agitation frequently. Therefore, the possibility of using an alternative to sedative medication, which could calm without sedating, would be very welcome. This project took place at the North Devon Hospice, a hospice containing a seven bedded in-patient unit, in which approximately 60% of patients are admitted for symptom management and 40% are admitted for end of life care. The complementary therapy manager at the hospice, attended a national conference for complementary therapists where she heard a presentation that claimed that spikenard, the essential oil, could, amongst many other things, help to alleviate symptoms of terminal agitation in the dying. Spikenard is a herb of the valerian family and is commonly used in Eastern and Ayurvedic medicine. It is classified as a hypnosedative and claims to soothe anxieties, installing a great sense of calm by harmonising the physical, emotional and spiritual, and assisting people in letting go of fear and old emotional wounds (Pereczes, 2005). Stiles (2014) states that its use calms the mind and nerves, enabling the person to feel more grounded and in control. It is helpful for balancing extreme mental and emotional states including depression, rage, confusion, hysteria, grief, loss, terror and panic. At present, there is little research evidence in humans pertaining to the use of spikenard and even less so in western medicine practices. In eastern medicine, by contrast, spikenard /Nardostachys jatamansi is widely used as an adjunct or sole treatment for a range of conditions such as depression (Prabhu et al., 1994; Metkar et al., 1999), insomnia (Takemoto et al., 2008; Cant sleep.org, 2014), epilepsy /convulsions, GI disturbances and menstrual irregularities (Singh et al., 2009) with good effect. Subsequently, there is no known research as to the use and effectiveness of spikenard for patients with terminal agitation/ restlessness, and this is therefore a new area for development and inquiry.

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Another impetus for this project was a relatively new clinical team leader of the hospice inpatient unit who was concerned that, although ‘management of terminal agitation in the North Devon Hospice is in accordance with accepted best practice in UK specialist palliative care, and closely follows published evidence-based guidelines, such as the Scottish Palliative Care Guidelines for Managing Severe Distress at the End of Life (NHS Scotland, 2014), the use of sedative medications might nevertheless sometimes deny patients the opportunity to have meaningful conversations and worthwhile experiences’. She therefore welcomed the possibility that spikenard might offer an alternative. When the team became aware of this, a small number of hospice inpatients were offered spikenard following consultation with the complementary therapist under a best interest decision (discussed on page 5). This happened in cases where low doses of benzodiazepines had not helped, when the patient had refused further sedation, or when family members did not want their loved one sedated by drugs. The route of administration was via inhalation and was non-invasive. A small adhesive patch was placed on the upper chest and one drop of spikenard oil applied to it every 4-6 hours with astonishing results. Almost all of the of patients who used spikenard oil in this way showed immediate calm and tranquillity with minimal agitation, which led to a more peaceful death without the need for increased dosages of benzodiazepines and antipsychotic drugs. So, there was a desire to formally evaluate the effects of the essential oil spikenard and an application was submitted and accepted to the Patients First programme at the Foundation of Nursing Studies (FoNS) to support this project. In addition, it was hoped that the project would lead to other outcomes. The mantra of the inpatient unit, since its opening ten years before, had been ‘patients first’, but this had been eclipsed by problems like long-term sickness, rapid successive changes, changes in management structure and so on. The team had become jaded and disconsolate, they were suffering from ‘change-fatigue’. It was hoped that the project might help to re-focus the team on their central concern: the patients. It might also re-ignite some pride in their work. And finally, the original clinical team leader left her role soon after the project started and new clinical team leader then became the project leader. This new clinical team leader was far less experienced so she saw the FoNS project as an opportunity to develop and she hoped that the project would provide her with the theoretical and practical experience of managing a project, of managing change, leading, facilitating, and seeing a project through. Aims and objectives The aim of the project was to establish whether spikenard essential oil could be used as an effective means of managing end of life agitation and distress, thus reducing the need for sedative medication to calm patients. If so then it could lead to an improvement in the patient’s experience, their quality of life; it could help them to make the best of their remaining time. In order to determine whether spikenard could be useful in this context, the project team made up of the ward sister, complementary therapist, a staff nurse and the learning and development lead, decided that they would conduct a pilot study which would entail offering spikenard to 50 patients and evaluating its effectiveness. This would be done in a formal way. A steering group made up of representatives from the ward, the senior nursing team, medical team and complementary therapy team was formed to consider what needed to be done and how they should go about it. They decided that they needed to:

Devise and work in accordance with a formal study protocol

Establish selection criteria

Gain informed, decision specific consent

Obtain ethics committee approval

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Provide necessary information, and opportunity to discuss, to elicit informed consent

Monitor effects

Record all information gathered accurately

Evaluate all data captured

Share findings Methods and approaches Several methods and approaches were used for this project:

1. Steering group (involved a team who devised the protocol, the info leaflets, consent form, and assessments, and who were responsible for the application to the ethics committee )

2. Workshops for engaging the staff on the inpatient team 3. Engaging key stakeholders in the hospice 4. Supporting staff when starting project 5. Forum theatre events

The steering group The steering group was open to anyone who wanted to join, it ended up comprising a clinical team leader and a deputy clinical team leader, a staff nurse, a healthcare assistant, the head of education, a consultant and a complementary therapy manager. A practical difficulty was simply getting everyone together at the same time. The consultant said the following about working in the steering group of a nurse led project:

‘Overall very positive. Gained new knowledge and skills in teamwork and management of change. Working with the steering group has provided an opportunity to work closely on a project with a multi-professional team and I believe the project has benefitted from the different professional backgrounds and perspectives. Most significantly the strengthened relationships have enhanced team-working outside of the project’.

Though the stated aim of the project was very much about using spikenard for end of life distress, it was every bit as much about developing, strengthening and focussing the whole team and learning how to facilitate collaborative change management. These skills will then be applicable in all sorts of other ways. What the steering group did: The steering group began by determining what needed to be done, how, when and by whom. They created a Gantt chart (see Appendix 1) to illustrate this. In fact, they created several during the course of the project. They never managed to achieve any of the timescale goals but the charts did nonetheless serve to focus and re-focus the group on what needed to be done. The steering group also did the following:

1. Devised a formal pilot study protocol 2. Established selection criteria 3. Designed a consent form 4. Applied for ethics committee approval 5. Designed an information leaflet for patients, relatives and staff 6. Decided on methods for monitoring the effects of spikenard 7. Selected and adapted an established assessment tool 8. Designed questionnaires for patients, relatives and staff 9. Decided how to collect and collate the data

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Positive outcomes of the Steering Group The FoNS workshops had demonstrated, above all, that several heads were better than one. During the process of working within the steering group it became apparent that different people brought different ideas to the table. It seems obvious but the way in which the steering group evolved into a productive unit illustrated this and became a key consideration for all future endeavours on the unit beyond the spikenard project: It has led to the formation of several working groups which replaced the former arrangement whereby link or lead nurses had championed certain aspects of care. For example, a tissue viability working group was formed and it included three registered nurses and two healthcare assistants. This meant that instead of just one solitary nurse being responsible for all that needed to happen about tissue viability on the unit, the work could be shared amongst several interested parties, each of whom brought their own experience and knowledge and ideas to the table and they could share all the work necessary to ensure best practice in this area. The protocol The project team were enthusiastic about the prospect of doing a pilot study involving spikenard to formalise its use as a treatment for end-of-life terminal agitation. The protocol (see Appendix 2) delineated precisely the process, listing each step from prescribing, to applying, to monitoring and evaluating the effects. The steering group decided that to take part in the pilot study, patients must have an ‘advanced life-limiting’ condition and be an in-patient on the inpatient unit for symptom management or end-of-life care, as opposed to being one of the hospice’s many community based patients. Also, all patients taking part in the study would need to give informed consent. Consent is an essential prerequisite of all nursing and medical interventions (NMC, 2015) but in palliative care things are sometimes done under the auspices of ‘best interest decision’, because the impetus is to manage and alleviate unwanted symptoms if at all possible, in a patient group who, by virtue of their condition, are often unable to give consent. For the study, however, and specifically in relation to the Integrated Research Application System (IRAS) application which required ethics committee approval, gaining informed consent was key. In order to give informed consent patients must necessarily have mental capacity, or, specifically, decision specific mental capacity, and they must be able to understand the English language, and have adequate hearing and/or sight in order to assimilate the necessary information. Exclusion criteria referred to any patients with an ‘advanced life-limiting’ condition admitted to North Devon Hospice for symptom management or end-of-life care who are not able to give consent. But this raised another ethical dilemma for the project team: they were very concerned not to compromise patients care by giving spikenard without consent but also very concerned not to compromise patients care by not giving it as in a best interest decision. Lengthy discussions then ensued regarding whether it would be possible to give spikenard to patients who were not in the study. Prior to the study, spikenard had been used, usually with the patient’s consent but sometimes according to what was deemed a best interest decision. It felt wrong that the project team was proposing to exclude any patient who was unable to give consent from a form of treatment that might help them, but in the end, they concluded that that was exactly what they should do, simply for the sake of clarity and only for the duration of the study. Gaining informed consent The steering group decided that to give informed consent the patient needed to have mental capacity, or, specifically, decision specific capacity. Any patient is assumed to have mental capacity unless proven otherwise. As well as mental capacity, patients would necessarily need to speak English, would need to have adequate hearing and/or sight, would need to be literate in order to read the information leaflet, and would need to be given time enough to discuss the project and ask

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any questions about it. The issue of informed consent was further complicated by the fact that that at the point at which patients would be likely to benefit from spikenard they would be at their most frail and would be unlikely to be able to give informed consent at this time. It was obvious therefore that written consent (see Appendix 3) would, ideally, need to be obtained on or soon after admission when there would probably be the best chance of patients being able to give informed consent. But since this would entail asking for consent for something that they would receive only when they were no longer able to give consent, this was likely to raise the subjects of prognosis, likely disease progression and what this could mean in terms of symptoms, deterioration, death, all of which they may not want to think of at this stage. This also added a complication when filling out the IRAS application. IRAS application for ethics committee approval It was considered that it would be best practice to seek the advice and sanction of the medical ethics committee, because even though spikenard is not a drug, it is a substance, and the team wanted to ensure that they were doing everything as well and as properly as they possibly could. To do this three of the project team completed an IRAS application form and submitted it electronically. It involved dozens of questions and involved extensive work. Once submitted there was a long wait before the Ethics Approval Committee met to discuss applications. When they did meet, they interviewed the project leader by phone and asked further questions about aspects of the application that they were unsure of. Although immediate feedback seemed fairly promising there was then still a delay of several months before official confirmation of approval was received. The Head of Education at the Hospice had this to say about her experience:

“I found the process of applying for ethical approval extremely complicated and comprehensive and this was a very steep learning curve for me. Whilst I appreciate that it is essential to ensure that any enquiry meets the highest and safest of standards to protect vulnerable patients, I had not realised the depth of enquiry that we were required to complete in order to be successful in our application. One of the most complicated issues was mental capacity. It was strongly felt that, should a patient find benefit from the application of spikenard for feelings of agitation and restlessness, this should continue to be offered if they were semi-conscious, or unconscious, and unable to give informed consent. This opened up a completely new section on the electronic application to IRAS. The challenge was in explaining that the individual would give written informed consent to be offered spikenard when they had decision specific capacity, and had found benefit from spikenard. On reflection, it was essential that so much detail was required in this section, because we were caring for such a frail and vulnerable section of society.”

The unexpected benefit from working through such a complex application system, was in team work and team support for each other, as well as engaging other healthcare professionals’ opinions to help complete the finished application. The information leaflet The project leader undertook to produce an information leaflet (see Appendix 7). This was to be for the patients, family and carers, and for the staff. The hospice communications team already had leaflet templates available and although they did not exactly fit the need they did help to focus the project leader on what precisely she wanted to convey. The information leaflet was designed to be given to the patient as the subject of the pilot study was introduced to them. If necessary the patient and any other interested parties could read it at their leisure, having been informed that they would have the chance to discuss it at a later point.

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Assessing end-of-life distress and agitation In order to assess end-of-life distress and agitation the project team decided that it was necessary to produce an End-of-Life Agitation Checklist (see Appendix 4). Drawing upon many collective years of experience they listed those signs that might signal to them that a person was experiencing end-of-life agitation or distress. Many of the signs that were listed, however, could not be exclusively associated solely with end-of-life experience, some of those signs might manifest, for example, if a patient was suffering from a biochemical imbalance. It was impossible to isolate any signs or symptoms of end-of-life agitation and distress that might not also manifest in other conditions. This led to the addition of a clause on the agitation checklist which would serve as a reminder that all other possible causes of a patient’s agitation and distress should first be considered and treated if possible and appropriate. Failure to identify any other possible causes might strengthen the suspicion that the patient was indeed nearing the end of their life, something that is difficult to predict with any degree of precision even for very experienced palliative care workers. Following on from the agitation checklist, the project team began to look at possible tools to assess the effectiveness of the use of spikenard as an intervention. None existed that were specifically designed for the assessment of patients with end-of-life agitation, but the Head of Education suggested that it might be possible to adapt the Painad (Pain Assessment in Advanced Dementia) tool. This contains a visual analogue scoring scale which could just as easily be applied to distress as to pain, and both patient groups were equally unable to express their problems verbally, which meant that in both cases assessment could only really happen by close observation of things such as facial expression and body language. The Painad assessment tool (see Appendix 5) was slightly modified and adapted to suit the purpose of the study. Qualitative questionnaire for patients, relatives and staff In order to develop a means of assessing the usefulness, or otherwise, of spikenard for end-of-life agitation, the steering group decided to adopt a phenomenological approach and use a questionnaire. This approach seemed to lend itself particularly well to a study which was primarily about people’s experience of spikenard within the study. According to Cresswell (1998, p 51); ‘a phenomenological study describes the meaning of the lived experiences for several individuals about a concept or the phenomenon’. With regards to the spikenard project, this would simply mean asking the patients who try using spikenard about their experience. However, given that the idea was to offer spikenard patches for end-of-life agitation and distress it was unlikely that many patients were going to be able to relate their experiences. The steering group therefore decided to ask the same kind of question to the relatives and staff (see Appendix 6), the idea being that once enough questionnaires had been completed, and the information collated, there would emerge certain common themes amongst all the experiences lived and observed, which would indicate whether or not spikenard could be of use for our stated purpose. Collecting and collating the data The idea of conducting a qualitative or phenomenological study was to capture and analyse the reported experiences of patients, staff and relatives with a view to establishing whether there is an element of shared or collective perception regarding the experience. As Cresswell (1998, p 52) puts it: ‘Researchers search for the essential, invariant structure (or essence) or the central underlying meaning of the experience’. This approach really requires those participating to jettison preconceptions and to focus only upon the experience itself. Once collated it is the job of the project team to analyse whether it can be said that any themes have emerged.

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Engaging the inpatient staff Having done most of the groundwork it then became imperative to engage the staff on the inpatient unit. To do this, two workshops for staff were planned. All staff were rostered to attend. The idea was that they would be given time and space in which to think without the usual interruptions and distractions. They were all asked to bring something in from home that represented themselves and their values. As each person in turn spoke about their objects the atmosphere became very emotionally charged. This was a powerful way in which to engage the team from the start. Next, a shared values exercise was undertaken, where a values clarification exercise (Manley, 1997) was completed in two small groups and then each group was asked to create something, using craft materials, anything from the garden, anything at all, to represent what was important to them about the work they do. This led to some extraordinary creations in the form of collages and a hat (see pictures below).

The team were then asked to verbalise the values that each element represented. In a care setting it is highly unusual for anyone to be given the opportunity to do anything creative, it seems almost as if it invites us to take something which is very important less than seriously. At the FoNS workshops though, and again at these hospice workshops, it became very apparent that engaging in creative activity led to more creative ways of thinking.

Some of the team were reluctant to engage, believing that they had no natural aptitude for creative tasks, but they did all participate, which led to a discussion about what mattered to each of them. There then followed a brief talk by the project leader and the complementary therapy manager, who explained what the project was about and this led to a claims, concerns and Issues exercise (Guba and Lincoln, 1989) in which the team were invited to share their claims (what was good) and their concerns about the project. These were then used to identify questions (issues) that the team set about finding solutions for. This was a useful exercise not only in terms of putting staff in the picture regarding the project and how it would work, but also because it elicited some really useful questions and solutions that had not even been thought of up until that point. After the workshop finished, at the suggestion of the FoNS facilitator, a short debriefing session was held where the project leader could receive some feedback and could reflect upon what had gone well, what had not gone so well, and what might be useful in other situations in the future.

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Engaging key stakeholders in the hospice Firstly, the steering group had to identify their stakeholders. Stakeholders were defined as anyone who had an interest in the project. Initially this was thought to be just those directly involved, such as the nurses, the doctors, the patients. Ultimately it was decided that this might include virtually anyone who worked for the hospice in virtually any capacity. It could be argued that anyone who worked for the hospice needed to know of any project that was going on because anyone may be questioned by family, friends, or neighbours or anyone who knows that they work for the hospice. It was therefore decided to position an information stall just outside the café at midday and to advertise the event by delivering flyers to each department, and by e-mailing every employee. The e-mail and the flyers included a crucial piece of information: a free bag of Maltesers would be given to anyone who came to the spikenard stall! The team made a display of giant poster boards behind the stall that would catch people’s eyes as they walked past on their way to lunch, and they filled baskets with bags of Maltesers, in their bright red, eye-catching packaging, which they placed on the stall alongside the information leaflets and the sample spikenard patches. Not surprisingly the stall attracted a lot of attention. The use of the Maltesers was a very good use of £30 of FoNS bursary money, and entirely appropriate as it represented the kind of creative thinking, thinking outside of the box, the FoNS organisation promotes. The stall was manned by three members of the steering group who answered questions and talked to anyone who would listen. Around 50-60 people came to the stall. People seemed genuinely interested and pleased that we were doing it. This in turn, when fed back, had a positive effect on the inpatient team. Supporting the team at the start of the project: Following on from the workshops, and given that there was a considerable time lapse between them and the launch of the project, there was an obvious need to support the team who were going to be involved in the project. Firstly there were the folders in which were all the relevant information and documentation. Secondly, during the first week after the launch of the project, key members of the steering group made sure that they were available by being present on the unit as much as possible to help and to answer any questions that might arise. It soon became apparent, however, that it may have been optimistic to imagine that the team would be able to recruit fifty patients within the allotted time-scale. During initial steering group discussions, it seemed very likely that there would be a number of people who would welcome the opportunity to try something that might help to relieve their symptoms without necessitating the administration of sedative drugs. What the steering group failed to anticipate was that the prerequisite discussion, with patients and relatives, would necessarily entail introducing the possibility of experiencing distressing symptoms some time in the future that most people probably would not have thought about. Most people worry that they may experience pain, most do not think of agitation and restlessness as potential symptoms unless they have witnessed someone else at the end of life. Therefore, the conversation that needs to occur in order to introduce the idea of spikenard for their symptom management, not only introduced the idea of frightening symptoms but also the inescapable fact that at some point they were going to die. Given that the steering group advocated having this discussion soon after admission to the hospice, which is already a frightening time patients, this would probably not be a particularly easy conversation to have. Forum theatre events In order to prepare staff and equip them with the skills to have a potentially difficult conversation about using spikenard at end of life, the Head of Education suggested using Forum Theatre as a means of demonstrating how this kind of conversation might best be conducted. Forum Theatre originated in Brazil, at the instigation of Augusto Boal, who introduced it to help oppressed people to work out their own ways of resolving some of their problems. The idea is that two people enact a certain scene and then the audience are invited to comment upon what they have observed, and to

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suggest how they think that actors might do things better. Eventually the process leads to members of the audience being invited to participate by taking the place of one of the actors and enacting their own suggestions for improving or resolving situations. This is a brilliant way of facilitating people to find a different or a better way to go about things, but it does require a skilled ‘director’ who understands the process and makes it safe for those who participate. In the case of the spikenard project, it served a triple purpose: it enabled a useful discussion in a new and memorable way, it brought members of the team together to work on an issue, and, finally, because those people were actively involved in the process of exploring how best to discuss spikenard, distressing symptoms and dying, soon after admission, there was a greater likelihood that they would buy into the suggested strategies for having those conversations. Outcomes To date unfortunately no patients have agreed to take part in the study. Several patients have agreed to think about it. This has meant the project has not progressed as had been anticipated. Discussion What did go well and why? The workshops provided something that the FoNS facilitator referred to as ‘headspace’. This meant time away from the inpatient unit, in a safe place, with ground rules that allowed people to speak freely and honestly, time in which to think without distraction, to express ideas, to hear the ideas and thoughts of others, to get to know other team members better, to feel part of a process that is working towards a solution, to own that solution. Subsequently the project leader/clinical team leader and deputy clinical team leader applied the same principles to something they called ‘development days’. They explained to the team the they were going to use a technique that they had experienced at the FoNS workshops in London which entailed considering their subject in three ways: firstly as individuals, so each person jotted down their own thoughts: secondly, in pairs, so that they could see the potential benefits of working with another person who might come up with things they had not thought of; and, thirdly, working with whole group ,which illustrated just how productive putting several heads together could be. Discussing issues amongst themselves was something that the inpatient team did all the time. But this usually occurred in the busy office, with people drifting in and out of the conversation, some talk leading to action, some just repetitive and unproductive. The same principles of sharing knowledge and of working collaboratively were then also applied to working groups on the inpatient unit. These replaced the lone link nurses who had hitherto shouldered all the responsibility for leading in their chosen aspect of care. The workshops also led to an understanding of the value of incorporating creative activities into an otherwise very serious workplace to free people’s creative thinking. The Maltesers display at the stakeholders’ roll-out was an example of this, it would never have been thought of if that creative process had not begun. It may have seemed quite random to the casual observer but it was contrived to attract maximum attention to the project. The project leader, who was also relatively new to the role of clinical team leader, and the deputy clinical team leader, were given several opportunities to facilitate group work and group discussions in a safe and supported way, under the supervision, initially, of the FoNS facilitator, and this gave them both the confidence to go on and facilitate the aforementioned development days, amongst other things. Perhaps naturally, the project leader tended to anticipate that the team would react negatively to the introduction of something that would entail an increased amount of time-consuming documentation. In fact, the team asked a lot of very pertinent questions, some of which the steering group had not even thought of, and at no point did they seem negative or obstructive about the project. In this case, it was very valuable to have the FoNS facilitator as an outside

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supporter who could point this out to the project leader. This kind of negative thinking could inhibit facilitators from even attempting certain things with their teams, so is far from constructive. Having this brought to her attention whenever she fell into this way of thinking really helped her to quash this tendency. The process of analysing what has happened after an event has also proven extremely useful to the clinical team leader and deputy. They were taken through the process of reflecting specifically upon what had gone well about a session, what had not worked so well, what they would do differently next time, and so on, as opposed to perhaps just expressing how the experience had made them feel. It seems obvious that there would be some benefit from this but it was not something that they were previously in the habit of doing. They came to understand that different things were likely to work better in different situations, and thus gained the confidence to give different things a try. There were many practical skills acquired along the way, from leaflet design to ethics committee application. The steering group became adept at identifying other people who could help with aspects of the project, and actually got better at asking others for help. All that they learnt from their involvement in the project will be transferable to other areas of their work. Lastly, the project was introduced to the team at a time when there were staff shortages and everyone was struggling with the workload, and it was felt that the team needed something beyond their day to day work to reinstate a sense of pride and achievement. Interestingly it seems that doing a job well daily, even getting constant acknowledgement and gratitude for doing that job well, seems to become something that is taken for granted after a while, and therefore there seems to be a need to do something out of the ordinary from time to time. The project offered the chance for some team members to assume responsibility for certain aspects of the study, and responsibility could be another motivating factor. During the project, the team created the protocol, the assessment and evaluation tools, and the information leaflets, they also created information display boards, held and attended workshops, wrote reports, applied for ethics committee approval, gave oral presentations, and all sorts of things that would not usually necessarily occur within a normal working day at the hospice. All of these things contributed to the personal and professional growth of the individuals undertaking them. From the start, the project was thrown open to the team, anyone could join the steering group and participate in whatever was going to happen. Only a few did, though most remained interested, from a safe distance, and were all, in theory, willing to take part by doing the assessments and discussing the project with patients and relatives. So why were they motivated to do something that was not compulsory in the context of an exceptionally busy period of rapidly introduced change? Could it be that as well as the possibilities of pride, sense of achievement, responsibility and personal growth, another significant factor was that team members saw the chance to do something out of the ordinary? Perhaps the very same people who might resist change when it is imposed upon them could be open and receptive to a project like this? Or could it be the methods and approaches that were used that enabled the team to have some time to think about offering choice for people at end of life? It is unclear what motivated the team however the spikenard project appeared to be something that most of the team were keen to investigate. What did not go well and why? Because the project has so far been unable to recruit any patients who are willing to consent to participate it has not succeeded in meeting its primary aim of evaluating the effectiveness, or otherwise, of spikenard, although the benefits in terms of learning from the whole process have been great. The FONS facilitator stressed from the outset that projects need not be completed within the stated timescale of eighteen months, but in this case, because ethics committee approval

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had been sought, and because the ethics committee had required a time limit for the intended project, to go beyond this would mean that the team would then be doing so without the continued approval of the ethics committee. Since they had decided at the start that ethics committee approval was necessary it would seem inappropriate to continue with the project beyond the circumscribed time. This does not mean that patients would be denied the chance to try spikenard in the future, only that it could not happen within the parameters of the study. Another recurring problem throughout the project was the misjudgement of potential time-scales involved in almost every aspect. Several Gantt charts were produced, few of the allotted tasks were ever achieved on time, and the charts were only useful to serve as reminders of what yet needed to be done. At virtually every stage of the project the project leader was probably unrealistic about what could be achieved because of course these projects occur in the context of busy clinical settings in which a multitude of other things compete for time and attention. During the initial stages of the project, the steering group undertook the bulk of the tasks deemed necessary as preliminaries for getting the project started. For example, they designed information leaflets, questionnaires, assessment tools, and so on, all of which took much time and discussion. Whilst all of this was going on the wider team had little or no involvement. They received occasional progress updates at team meetings but on the whole, were disenfranchised. Later, during the long period during which ethics committee approval was awaited they were once more uninvolved for several months. These were relatively unproductive times as far as the project was concerned, times when opportunities to engage the whole team were probably missed, especially for further workshops. The workshops that did eventually take place clearly demonstrated to the project leader that the team, when given the chance, could contribute usefully and meaningfully, and though most had chosen not to join the steering group, they may nevertheless have been able to help with the design of some of the documents, for example. The project leader learnt from the workshops that she did facilitate, that team members were more likely to sign up to something if they were involved in its development. What the project team would have done differently If ever the team were to consider embarking on a similar endeavour, they would avoid any project that necessitated ethics committee approval, as this very lengthy process impeded the development of the project as a team effort. With hindsight, they were over ambitious in their estimate of how many patients they could include in the study within the given time-frame; they would either attempt to recruit fewer patients or give themselves far more time in which to complete their study. Finally, they would have thought more carefully about how to spend the bursary from the Burdett Trust as they could possibly have spent it more usefully on employing bank staff to backfill someone to do the necessary work for the project. Recommendations

1. Spikenard essential oil, and its effectiveness in managing agitation and distress at end of life, is worthy of further investigation

2. Prospective FoNS project applicants should choose a subject that really matters to them and their patients and will improve their care but which does not require ethics committee approval

3. The spikenard project team will continue to use the adapted Painad assessment tool when using spikenard patches for patients

4. The spikenard project team will be more systematic in the ways in which areas of symptom management are monitored and evaluated in the future.

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Conclusion During the course of this project the team have:

1. Formed a steering group 2. Devised and worked in accordance with a formal study protocol 3. Established selection criteria 4. Designed a consent form 5. Learnt about decision specific consent 6. Applied for and obtained ethics committee approval 7. Designed an information leaflet 8. Selected and adapted assessment tools and agreed upon methods for monitoring effects 9. Attended and facilitated workshops 10. Engaged with key stakeholders 11. Run some forum theatre events to enable staff to have difficult conversations 12. Designed qualitative questionnaires for patients, staff and relatives 13. Learnt the value of working together and sharing ideas 14. Learnt the value of using a more creative approach to problem solving 15. Formed working groups and held development days as a direct result of the learning from

the FoNS workshops From the outset the FoNS facilitator made it very clear that the main focus should not be solely upon the end results of the projects but rather upon the processes involved throughout. There has been much learning and personal development as a result of the team’s involvement in this project, the skills that have been acquired can be applied to almost any future endeavours relating to improving patient care; all of the skills and techniques acquired are transferable. There were many things that could have been done better or differently but these have undoubtedly been outweighed by the benefits of all the learning that came from participating in the project. References Cantsleep.org (2017) Jatamansi Review. Retrieved from:

http://www.cantsleep.org/reviews/jatamansi.html (Last accessed 18the July 2014). Chand, S. (2013) Dealing with the dying patient – treatment of terminal restlessness and agitation.

The Pharmaceutical Journal. Retrieved from: http://www.pharmaceutical-journal.com/learning/learning-article/dealing-with-the-dying-patient-treatment-of-terminal-restlessness-and-agitation/11119466.article (Last accessed 3rd April 2017).

Cresswell, J.W. (1998) Qualitative Inquiry and Research Design. Thousand Oaks, California: Sage Publishing.

Guba, E. and Lincoln, Y. (1989) Fourth Generation Evaluation. Newbury Park, California: Sage. Nursing and Midwifery Council (2015) The Code. NMC: London. Manley, K. (1997) A conceptual framework for advanced practice: an action research project

operationalising an advanced practitioner/ consultant nurse role. Journal of Clinical Nursing. Vol. 6. No. 3. pp 179-190.

Metkar. B., Pal. S.C., Kasture. V. and Kasture. S. (1999) Antidepressant activity of Nardostachys jatamansi DC. Indian Journal of Natural Produce. Vol. 15. pp 10-13.

NHS Scotland (2014) Scottish Palliative Care Guidelines End of Life Care – Severe Uncontrolled Distress. Retrieved from: http://www.palliativecareguidelines.scot.nhs.uk/guidelines/end-of-life-care/severe-uncontrolled-distress.aspx (Last accessed 3rd April 2017).

Pereczes. K. (2005) The Spikenard Experiment. Retrieved from: http://www.impish.uwclub.net/spikenard.htm (Last accessed 3rd July 2014).

Prabhu. B., Karanth. K.S. and Rao. A. (1994) Effects of Nardostachys jatamansi on biogenic amines and inhibitory amino acids in the rat brain. Planta Med. Vol. 60. pp 114-117.

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Singh, A., Kumar, A. and Duggal, S. (2009) Nardostachys jatamansi DC. potential herb with CNS effects. Asian Journal of Pharmaceutical Research and Health Care. Vol. 1. pp 276-290.

Stiles. K.G. (2014) Aromatherapy Powerful Sedative – Spikenard. Retrieved from: http://www.kgstiles.com/articlespikenard/ (Last accessed 3rd July 2014).

Takemoto. H., Ito. M., Shiraki. T., Yagura. T. and Honda.G. (2008) Sedative effects of vapour inhalation of agarwood oil and spikenard extract and identification of their active components. Journal of Natural Medicine, January, Vol. 62. No. 1. pp41-46.

Acknowledgements: The project team would like to thank Charlotte Emery, the original team leader, and Beth Kelso, the Complementary Therapy Team leader, for coming up with the idea and, in Charlotte’s case, for applying to the Patients First programme. They would also like to thank Mezzi Franklin, Head of Education, for all her hard work and especially for all the work involved in the Ethics Committee Application. Also Jane O’Shea, Murray Fletcher and Margaret Beck who all contributed in many ways, via the steering group and the workshops, and supported the project lead throughout. The inpatient team was receptive and willing to help when opportunities arose, and the Director of Care, Rachel McCarty, also supported the project team Finally, a big thank you to Jo Odell, the FoNS facilitator, who helped immensely and from whom the team have learnt a great deal.

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Appendix 1: Gantt chart for Spikenard Pilot Study June 2015-June 2016

Activity Key worker Complete by June July Aug Sept Oct Nov Dec Jan Feb March April May June July Aug Sept

Identify key roles in group

Steering group 1 Month

IRAS ethical approval + supporting docs.

Mezzi, Caroline 1 month

Roll out to staff team Jo Odell, Caroline, Murray, Beth

2 month

Cross care window IT 2 months Roll out to wider team ?Jane, ?Suze 3 months Hospice wide roll out Caroline,

Mezzi, Margaret

4months

Start using Spikenard Inpatient team 5months Completion of pilot use of Spikenard

12months

Information gathering ?Margaret, Jane

Report to FoNS Caroline Every 6 months Oral presentation to FONS

Caroline, Mezzi, Margaret, Jane

12 months

Celebration event BU team 15 months

Key Monthly tasks planned

Task completed

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Appendix 2: Summary of Protocol Study Objectives The aim of the pilot study is to establish what are the likely benefits, if any, of applying Spikenard patches for patients at end of life who are experiencing agitation and distress.

Overall Design and Plan of Study The study will explore the possible benefits of using Spikenard to alleviate symptoms of agitation and distress for patients at end of life. Patients to be include in the study will be given an information leaflet and the opportunity to discuss with the nurses and doctors further information concerning the study. They may then decide whether they wish to take part.

Informed Consent Individuals who decide they wish to be included in the study will be required to sign the consent form. The consent form includes a clause, and an additional signature, for the person to agree continued consent to the treatment should they lose decision specific capacity due to reduced consciousness. It also includes a clause to consent for the information to be shared with the patients’ General Practitioner. A consent form is included with the Spikenard information.

Study Population The study population will include patients with advanced life limiting illness who are admitted to North Devon Hospice for symptom management, or end of life care Male and female patients within the ages of 18-110 years Sample size = 50

Inclusion criteria Any patients with advanced life limiting illness admitted to North Devon Hospice for symptom management or end of life care who are able to give informed consent.

Exclusion Criteria Any patients with advanced life limiting illness admitted to North Devon Hospice for symptom management or end of life care who do not have decision specific capacity.

Subject selection All patients who meet the inclusion criteria.

General Ethical Considerations Patients will sign a written consent form before being included in the study. Confidentiality will be respected at all times. Permission to store information on the North Devon Hospice database, and hard copy record system, will be sought. Pseudonyms will be used in any written information/ reports relating to the study, and future publications.

Study Procedures. 1. Participating patients will be involved in the study for the duration of each of their In-Patient Unit stays. 2. Consent to be involved in the study will be obtained. 3. The Spikenard patch will be prescribed by the Medical Officer. 4. If the patient shows signs of agitation and distress, the Spikenard patch will be offered. 5. It will be applied to the patient’s chest wall by the nurse or Medical Officer. 6. Time of application will be documented on the prescription chart. 7. Observations using a revised version of the PAINAD assessment tool will be performed prior to applying the

Spikenard patch, and 10 minutes after application. If there is no perceived benefit reported by the patient from the application of the Spikenard patch after this time it will be removed and alternative means of managing symptoms through medication will be considered.

8. The Spikenard patch will remain in place for four hours. 9. Regular observations will continue at a minimum of each hour for four hours. 10. The Spikenard patch will be removed and disposed of in a yellow bin after four hours. 11. The patient’s symptoms of agitation and distress will be reassessed and further Spikenard patch will be offered if

required. 12. If a localised reaction to the skin surrounding the Spikenard patch is observed the patch will be removed

immediately. 13. An evaluation questionnaire will be completed by the patient if possible and relatives if possible, and staff.

Post Study Procedures 1. Findings from the pilot study will be collated and presented in a report to the Care Quality Working Group. 2. Information will be cascaded to Hospice staff .

The pilot study will be written up and submitted for publication in an appropriate Healthcare Journal

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Appendix 3: Participant consent form Title of Project: The effectiveness of Spikenard in the management of agitation and distress in End of Life Care

Please initial box

1. I confirm that I have read the patient information sheet dated ……………..for the above project. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily.

2. I understand that my participation is voluntary and that I am free to withdraw at any time

without giving any reason, without my medical care or legal rights being affected.

3. I understand that relevant sections of my medical notes and data collected during the project may be looked at by individuals from the North Devon Hospice Project team. I give permission for these individuals to have access to my records.

4. I understand that the information collected about me will be used to support

other research in the future, and may be shared anonymously with other researchers.

5. I agree to take part in the above study.

Name of Participant Date Signature Name of Person Date Signature taking consent When completed: 1 copy (original) to be kept in care record and 1 copy to be held in project file

6. I agree to the information concerning this study to be sent to my General Practitioner Name of Participant Date Signature Name of Person Date Signature taking consent

7. If I find the application of Spikenard helps my feelings of agitation and distress and I lose decision specific capacity I wish to have this offered to me as per protocol.

Name of Participant Date Signature Name of Person Date Signature taking consent

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Appendix 4: End of life agitation checklist PATIENT NAME…………………………………………………………………..DoB…………………………………. Is the patient distressed and exhibiting any of the following symptoms? *tick in box next to all those that apply* SYMPTOM YES NO

Change in individual’s behaviour

Change in facial expression “Rabbit in the headlights”

Inability to concentrate

Inability to sleep

Picking at clothing or sheets

Constantly on the move

Hallucinations

Paranoia

Acute onset of confusion

Disorientation

Heightened anguish or anxiety

Distressed vocalising

Aggression

Inability to relax

OTHER: please state……………

Have other possible causes been considered, reversed as appropriate and or excluded? YES / NO (delete as appropriate) If yes, please state what they were? * If NO then patient should be excluded from project until this has been done*. *Possible causes to consider include: OPIOID TOXICITY, PAIN, DRUG INTERACTIONS, FEVER, SEPSIS, UTI, RESPIRATORY INFECTIONS, HYPERCALCAEMIA, RAISED INTRACRANIAL PRESSURE, CONSTIPATION, RETAINED SECRETIONS, CEREBRAL IRRITATION, HYPOXIA/DYSPNOEA, POST ICTAL IRRITATION, SEVERE CONFUSION AND DROWSINESS, CAUSED BY PRIMARY OR SECONDARY TUMOUR, SPIRITUAL / PSYCHOLOGICAL DISTRESS, URAEMIA, ANAEMIA Does patient have mental capacity? YES / NO (delete as appropriate) Can the patient consent? YES / NO (delete as appropriate) If NO can a family member consent? YES / NO (delete as appropriate) If NO is it necessary to take a best interests decision? YES / NO (delete as appropriate) Patient recruited onto project? YES / NO (delete as appropriate)

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Appendix 5:Pain Assessment in Advanced Dementia (PAINAD) Scale Items* 0 1 2 Score

Breathing independent of vocalisation

Normal Occasional laboured breathing. Short period of hyperventilation.

Noisy laboured breathing. Long period of hyperventilation.

Negative vocalisation

None Occasional moan or groan. Low-level speech with a negative or disapproving quality.

Repeated troubled calling out. Loud moaning or groaning. Crying.

Facial expression Smiling or inexpressive

Sad. Frightened. Frown. Facial grimacing.

Body language Relaxed Tense. Distressed pacing. Fidgeting.

Rigid. Fists clenched. Pulling or pushing away. Striking out.

Consolability No need to console Distracted or reassured by voice or touch.

Unable to console, distract or reassure.

Total **

*Five-item observational tool (see the description of each item below). ** Total scores range from 0 to 10 (based on a scale of 0 to 2 for five items), with a higher score indicating more severe distress and agitation (0 = no distress and agitation to 10 = severe distress and agitation). Breathing

1. Normal breathing is characterised by effortless, quiet, rhythmic (smooth) respirations. 2. Occasional laboured breathing is characterised by episodic bursts of harsh, difficult or wearing respirations. 3. Short period of hyperventilation is characterised by intervals of rapid, deep breaths lasting a short period of time. 4. Noisy laboured breathing is characterised by negative sounding respirations on inspiration or expiration. They

may be loud, gurgling, or wheezing. They appear strenuous or wearing. 5. Long period of hyperventilation is characterised by an excessive rate and depth or respirations lasting a

considerable time. Negative vocalisation

1. None is characterised by speech or vocalisation that has a neutral or pleasant quality. 2. Occasional moan or groan is characterised by mournful or murmuring sounds, wails or laments. Groaning is

characterised by louder than usual inarticulate involuntary sounds, often abruptly beginning and ending. 3. Low level speech with a negative or disapproving quality is characterised by muttering, mumbling, whining

grumbling, or swearing in a low volume with a complaining, sarcastic or caustic tone. 4. Repeated troubled calling out is characterised by phrases of words being used over and over in a tone that

suggests anxiety, uneasiness or distress. 5. Loud moaning or groaning is characterised by mournful or murmuring sounds, wails or laments much louder than

usual volume. Loud groaning is characterised by louder than usual inarticulate involuntary sounds, often abruptly beginning and ending.

6. Crying is characterised by an utterance of emotion accompanied by tears. There may be sobbing or quiet weeping.

Six steps\pilot\resources\step 2\pain…. Page 1 Facial expression

1. Smiling is characterised by upturned corners of the mouth, brightening of the eyes and a look of pleasure or contentment. Inexpressive refers to a neutral, at ease, relaxed, or blank look.

2. Sad is characterised by an unhappy, lonesome, sorrowful, or dejected look. There may be tears in the eyes. 3. Frightened is characterised by a look of fear, alarm or heightened anxiety. Eyes appear wide open. 4. Frown is characterised by a downward turn of the corners of the mouth. Increased facial wrinkling in the

forehead and around the mouth may appear. 5. Facial grimacing is characterised by a distorted, distressed look. The brow is more wrinkled as is the area around

the mouth. Eyes may be squeezed shut. Body language

1. Relaxed is characterised by a calm, restful, mellow appearance. The person seems to be taking it easy. 2. Tense is characterised by a strained, apprehensive or worried appearance. The jaw may be clenched (exclude

any contractures).

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3. Distressed pacing is characterised by activity that seems unsettled. There may be a fearful, worried or disturbed element present. The rate may be faster or slower.

4. Fidgeting is characterised by restless movement. Squirming about or wiggling in the chair may occur. The person might be hitching a chair across the room. Repetitive touching, tugging or rubbing body parts can also be observed.

5. Rigid is characterised by stiffening of the body. The arms and/or legs are tight and inflexible. The trunk may appear straight and unyielding (exclude any contractures).

6. Fists clenched is characterised by tightly closed hands. They may be opened and closed repeatedly or held tightly shut.

7. Pulling or pushing away is characterised by resistiveness upon approach or to care. The person is trying to escape by yanking or wrenching him or herself free or shoving you away.

8. Striking out is characterised by hitting, kicking, grabbing, punching, biting or other form of personal assault. Consolability

1. No need to console is characterised by a sense of well being. The person appears content 2. Distracted or reassured by voice or touch is characterised by a disruption in the behaviour when the person is

spoken to or touched. The behaviour stops during the period of interaction with no indication that the person is at all distressed.

3. Unable to console, distract or reassure is characterised by the inability to sooth the person or stop behaviour with words or actions. No amount of comforting, verbal or physical will alleviate the behaviour.

Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the pain assessment in advanced dementia (PAINAD) scale. J Am Med Dir Assoc. 2003;4:9-15. Excerpted from Frampton K. “Vital Sign #5”. Caring for the Ages 2004; 5(5):26-35. & copy; 2004 Lippincott Williams & amp;Wilkins. All rights reserved. Reprinted with permission. American Medical Directors association, 10480 Little Patuxent Parkway, Suite 760, Columbia, MD 21044 (800) 876-2632 or (410) 740-9743 Fax (410) 740-4572 e-mail: webmaster@amda.com.

Appendix 6: Spikenard Pilot Study Patient Questionnaire Patient 1.Can you tell me about your experience of having Spikenard Essential Oil Patch used for your feelings of agitation and distress?( Patient ) 2.Can you tell me about your experience of having Spikenard Essential Oil Patch used on (Insert Patient Name here) for feelings of agitation and distress? (Relative ) 3.Can you tell me about your experience of Spikenard Essential Oil Patch on (Insert Patient Name here ) for feelings of agitation and distress? (Clinical Staff member)

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Appendix 7: Patient Information leaflet

What is Spikenard?

Spikenard is an essential oil which has been in use for a very long time. It is obtained from the roots of two species of a plant called Nardostachys and has been used in aromatherapy for a wide number of purposes; we are offering it to you for its calming effect.

You are welcome to ask us questions at any stage of the treatment or afterwards.

Why is it needed? Sometimes people feel restless and agitated, particularly as they approach the end of their lives. We think that Spikenard may help to make people feel calmer, more peaceful and relaxed. Currently, when appropriate, we use medications to help people who are restless and agitated. As well as helping to make you feel calmer, these medications can sometimes also make you feel very sleepy, so you are no longer able to communicate effectively with your friends and family. Spikenard may be less sedating for you.

Sometimes agitation and restlessness can be caused by many different things, such as pain or a full bladder. We would try to address all other possible causes before trying Spikenard.

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What does it involve? If you are given Spikenard it will be given to you in a measured dose on a small self-adhesive patch which we will place on your chest. It is easy to apply, whether you are sitting, lying or standing and it only takes a few seconds. Once it has been placed on to your chest you will smell it, and you will inhale it through your nose. This is how it can start to give you some benefit. It has a distinctive musky smell. It takes approximately 10 minutes before we know if it is working effectively for you. If it doesn't appear to have worked sufficiently after that time and you are still restless and agitated, we will offer you other appropriate medication instead.

What are the alternatives? If you are not using Spikenard, alternative treatments for restlessness and agitation are conventional medications. These can be administered orally or by injection to help relax or sedate you. These can be very effective. Some have side effects like sedation. We would also try to manage your symptoms in other ways, such as sitting with you, talking to you, soft music, hand massage. Even if you decide not to have any of the interventions offered, we will still try to find ways in which to help you

and make you as comfortable as possible.

Special preparations Spikenard requires no special preparation. We have purchased it from a trusted and reliable supplier who applies the organically and ethically sourced Spikenard in pre-measured doses to small, sealed sticky patches, similar to those used for ECG tests. We can then place one of these patches onto your chest if you would like to try it. There are no known medical conditions that would exclude you from using Spikenard.

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How will I feel during the treatment? You will probably begin to feel more relaxed within a short time of the patch being applied. There are no known side-effects but if you feel that you are experiencing anything that you think may be a side-effect then please let us know. If you are mobile, you will still be able to move around freely while the patch is on.

How will I feel afterwards? You may continue to feel calm and relaxed even after the patch has been removed. There are no particular problems or unwanted after-effects associated with Spikenard.

What happens after the treatment? After you have tried using Spikenard we will ask you some questions such as, how it made you feel, whether it helped. We may also ask your friends

and relatives if you are unable to tell us.

We will continue to offer you Spikenard for any further episodes of agitation and distress that you may experience. Should you wish to continue to use Spikenard in your own home we will supply you with further patches.

We will inform your GP that you have tried Spikenard and if you wish to continue using it.

What are the risks? There are no known risks. Spikenard oil is non-toxic, non-irritating, and non- sensitizing. It has been widely used in aromatherapy for its calming effect, and it has no known complications.

Aftercare You will not require any aftercare beyond the removal of the patch.

Whilst you have the patch on you can still have any other symptoms treated or managed. It will not prevent you from

having medicines or treatments to help manage your pain, for example, and you can do anything else that you need to do such as going to the toilet, or having a drink. We may cover it with a waterproof dressing, however, if you want to have a bath or a shower.

Follow up We will want to know whether you found this treatment helpful and will therefore want to ask you some questions about it, if you feel able to answer.

Further information Please ring us on the Bedded Unit to speak to any of the nurses or the doctor. Or you can ask to speak to our Complementary Therapy Team Leader. The Bedded Unit North Devon Hospice Deer Park Newport Barnstaple North Devon EX32 OHU 01271 344248 www.northdevonhospice.org.uk

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References The Complete Guide to Aromatherapy by Salvatore Battaglia, second edition. Other formats If you need this information in another format such as computer disk, large print, high contrast etc, please contact the Marketing and Communications office at North Devon Hospice on 01271 344248. We welcome your feedback North Devon Hospice aims to provide high quality services to our patients and their families. If you have a comment or compliment about a service, a treatment or your experience with us, please speak with one of our team or alternatively complete the ‘Compliments, Concerns & Complaints’ leaflet which is available at Deer Park and to download from our website. North Devon Hospice North Devon Hospice is a local charity providing specialist care and support to patients and families affected by cancer, or other life-limiting illnesses. We

believe in being there for all the family and all our care is provided completely free of charge.

It costs over £4m a year to provide all of the care we do and only 25% of our costs come from the NHS. This means we need to raise over £3m from scratch every year through the support of the local community. Produced June 2015 by North Devon Hospice