15 Palliative and supportive care
The approaches to palliative and supportive care are holistic; they differ in philosophy from curative strategies in that they focus primarily on the consequences of a disease rather than on its cause or specific cure – they are pragmatic and multidisciplinary, with very little distinction between palliation and support (National Council for Hospice and Specialist Palliative Care Services [NCHSPCS] 2000). This chapter gives an insight into palliative and supportive care, together with the use of essential oils. With the help of aromatherapy, people have enjoyed a quality of life better than they might otherwise have experienced.
Although originally written for those with cancer, the definitions of palliative and supportive care ‘…can be used for people with any life-threatening illness.’ (National Council for Palliative Care [NCPC] 2002)
Supportive care helps patients and their families to cope with cancer and its treatment – through the process of diagnosis and treatment, to continuing illness, possible cure or death and into bereavement. (NICE 2004). Where cure is not an option, care is focused on helping them through the difficult times ahead and maintaining optimum independence with the best quality of life possible. Supportive care is an integral part of palliative care.
Palliative care involves the total care of patients with advanced progressive illness which no longer responds to curative treatment. It is needed when the best quality of life for them and their families becomes the most important issue, and where the management of pain and other symptoms, and the provision of psychological, social and spiritual support, are paramount. Palliative care neither hastens nor postpones death: it merely recognizes a patient’s right to spend as much time as possible at home, and pays equal attention to physical, psychological, social and spiritual aspects of care wherever the patient is (World Health Organization [WHO] 1990).
Palliative and supportive care does not see the patient in isolation but as part of a family unit – whatever that family unit might be. Many patients die in residential care where members of staff and other residents are part of the ‘family’: indeed, they may be the only ‘family’, and therefore experience the loss themselves. Those providing day-to-day care and support to patients and carers are facing the reality of death – it is often forgotten that they too need support.
Aromatherapists could teach a simple massage technique to these people – even the patient – to give them the opportunity to give and receive caring touch. It can be a transforming experience, as so often the loved ones feel helpless in not knowing how to show they care, or are frightened of ‘doing the wrong thing’. Similarly, the patient often feels s/he is giving nothing in return for the love and care shown, and being able to participate in a simple massage can make a world of difference.
End of life care – the definition suggested by the NCPC states that: ‘….all those with advanced, progressive, incurable illness….’ should be given such care. When this final stage begins is difficult to determine as it depends on many factors, not least on individual personal and professional points of view and the nature of the condition.
Palliative and supportive care requires the expertise of a multidisciplinary team whose members include doctors, nurses, physiotherapists, occupational therapists, social workers, clergy, counsellors, complementary therapists etc., but to be effective it must be tailored to the needs of patients and their families. Often both palliative and supportive care are provided by the patient’s family and other carers, and not exclusively by professionals (NICE 2004). The aromatherapist, even if treating a patient independently, is still part of the team and should recognize the importance of keeping the team informed of his/her part in the patient’s care.
Until now, palliative and supportive care has been largely confined to those with cancer – at least 50% of all patients in the UK with this condition will have had such care at some time in the course of their illness (Addington-Hall 1998). However, in developed countries more people die of chronic circulatory and respiratory conditions such as chronic heart disease (CHD), stroke and chronic obstructive pulmonary disease (COPD). Few palliative care services have focused on their needs or those of others with non-cancerous life-limiting conditions when they near the end of their life (NICE 2003; Ahmedzai 2006; Gore et al. 2000).
The ageing population is increasing rapidly – it is estimated that by 2033 in the UK, 23% of the population will be over the age of 65 (Office of National Statistics 2009). Many, if not most, will have two or more coexisting chronic conditions that will significantly impair their quality of life. Palliative and supportive care has now broadened to include all those with life-limiting conditions, notably:
• a ‘life’ pattern which can fluctuate quite markedly both in the individual and from person to person, e.g. there may be periods of remission, exacerbation or stability, or there may be a slow progressive decline; nevertheless, people may also appear fit and well with little or no change to their way of life
Below are some examples of distressing symptoms caused directly or indirectly by the disease or its treatment and commonly encountered in palliative care. Most, except possibly those marked with * can be helped or alleviated in some way by the essential oils listed alongside the individual symptoms in Appendix A II on the CD-ROM. More detailed information on the emotional aspects can be found in Aromatherapy and Your Emotions (Price 2000).
There is some evidence to show that aromatherapy massage can help relieve anxiety and aid relaxation (Hadfield 2001, Imanishi et al. 2007, Wilkinson et al. 2007). When patients are experiencing severe anxiety and panic there are many calming and sedative essential oils to choose from, such as Chamaemelum nobile [Roman chamomile], Canarium luzonicum (elemi) Cananga odorata [ylang ylang], Citrus aurantium var amara per. [orange bigarade] and
Case 15.1 Pain relief
Jane is married with school-aged children and worked as a cleaner. At 47 years of age a small lump was growing on her right hip. She was diagnosed with neurofibrosarcoma and received radiotherapy followed by chemotherapy.
Jane has now developed bone metastases in the hips, ribs and sternum, and is aware that her disease is incurable. She attends NHS day hospice one day per week for supportive and palliative care; she has increasing pain and tenderness over her sternum and shoulder. Sleep was poor because of the pain despite medication of fentanyl patch 25 mg, diclofenac 50 mg and morphine liquid 10 mg for breakthrough pain.
Jane slept for a half hour, and on waking she felt relaxed and had less pain, telling the day hospice manager and her husband (with a smile) how much better she felt. Jane has a compress applied weekly at the day hospice and has a blended lotion containing the above oils plus Lavandula angustifolia to apply daily at home on areas of pain and to aid sleep. This intervention was simple and gave effective symptom relief.
Citrus reticulata (mandarin] (also see Appendix B.9 on the CD-ROM). The patient can be asked to choose the aroma they find the most pleasing from a small selection of single oils, and/or a blend of two or three.
Patients can be given a 10 mL bottle of the chosen oil/s blended in a carrier to use themselves on pulse points during periods of anxiety. If they feel a panic attack pending they can inhale the oils from an inhaler stick or a tissue – many patients have experienced a reduction in anxiety simply by inhaling their chosen oil. Elaine Cooper has worked closely with a clinical psychologist in oncology and palliative care where she works in an NHS palliative care team, with referrals requesting to aid relaxation and reduce anxiety with aromatherapy, and there have been some outstanding results with some patients.
Essential oils chosen most frequently are Rosa damascena [rose otto] Citrus aurantium var. amara flos [neroli], Boswellia carteri [frankincense], Lavandula angustifolia and Chamaemelum nobile [Roman chamomile].
Being confronted with their own mortality often makes a person turn inwards and question their innermost thoughts, beliefs and values in an attempt to make sense of what is happening. The less a person is able to do physically, the more time they have for thinking, which can lead to much anguish and torment. Aromatherapy treatment may afford help in spiritual care, bringing comfort and peace in the form of deep relaxation. Patients may then be able to focus on their own spirituality. Essential oils that would help here are those which are both uplifting and soothing, analgesic and/or tonic to the heart, relieving any fears, e.g. Boswellia carteri [frankincense], Chamaemelum nobile [Roman chamomile], Citrus bergamia [bergamot], Lavandula angustifolia [lavender], Ocimum basilicum [sweet European basil] and Origanum majorana [sweet marjoram] (Price 2000; Tisserand 1992).
For the patient and their family, social problems and issues arise from the changes and adjustments that have to be faced in their relationships and daily life, whether they are temporary or permanent.
Case 15.2 Fungating lesion
This patient, who took pride in her appearance, had cancer of the vulva, with local spread causing a fungating lesion in her left groin. She was very distressed by this, due to its appearance and the malodour, of which she was very conscious and tried to disguise it with perfume.
The aromatherapist discussed the use of essential oils to disguise odour and the patient was happy for any help she could get. Oils were chosen together, selecting the aromas she liked. The aromatherapist advised the use of more than one oil to increase the efficacy through synergy. The essential oils chosen were:
The patient was provided with a 5 mL bottle of each and instructed to use two drops on a tissue to inhale as needed, or tuck it into her clothes near to the wound. Written instructions were also provided.
fact that pain may remain intractable if mental and social factors are ignored.
Pain is a warning of actual or potential tissue damage or pathology and creates some muscle tension (guarding) to protect the area. It elicits an arousal and an emotional response, and is modified by mental state and emotions (Marieb 1998). Most people with pain usually become anxious about the possible implications; this leads to more muscle tension, and muscle tension increases the pain that increases the emotional response, and so on, each perpetuating the other into a vicious circle that can become a spiralling process (McCaffery & Beebe 1989).
Massage with analgesic essential oils brings its own benefits, but if massage is not advisable the application of essential oils in a lotion – or with a compress or spray – can also bring a reduction in pain.
Factors to be considered that might be contributing to the pain include inflammation, tension, swelling or nerve involvement etc. A significant reduction in pain may possibly be achieved by using the following.
Oils containing esters and sesquiterpenes, which are generally regarded to be anti-inflammatory, antispasmodic and calming, making them very useful for pain, include Chamaemelum nobile [Roman chamomile], Lavandula angustifolia [lavender] and Citrus aurantium var. amara (fol) [neroli].
|Threshold lowered by:||Threshold raised by:|
|Relief of symptoms|
Reduction of anxiety
Elevation of mood
Pogostemon patchouli [patchouli] and Commiphora myrrha [myrrh] are also anti-inflammatory, and Lavandula angustifolia [lavender] and Zingiber officinale [ginger] are useful for their analgesic properties.
From observing, listening and talking to patients over many years, Sue Whyte believes that the principle of the pain spiral may apply to other physical symptoms the patient may experience. Similarly, their general outlook on life will contribute to their mood and confidence; the coping strategies they use – and their personality – do not usually change because they are ill, although they may subsequently do so. The effects of the close, subtle interplay between the physical, psychological, social and spiritual aspects should never be underestimated. Any negative factors in the person’s life will lower their tolerance level to symptoms, whereas positive ones will raise it. Most people, when in low spirits, find that everything seems to be worse; likewise, when feeling full of the joys of spring, they can cope with anything. Illness is no different. However, even the most cheerful and positive of people can be knocked off balance and succumb to physical symptoms that nothing seems to ease. For example, feeling sick all the time – made worse by the sight, smell and sometimes even just the thought of certain things – can be a major problem for some patients, making them more anxious and distressed.
In Chapter 8, Price discusses the effects that essential oils have on the emotions, which may or may not be a placebo response: according to Tisserand, if a smell is appealing, it soothes the mind (Tisserand 1992 p. 99). Placebo or not, if the experience of aromatherapy is pleasant and relaxing, even for a short time, it will surely have some beneficial effect on the patient’s mood and morale long enough to interrupt the vicious circle, thus helping them relax (Hadfield 2001), enhancing factors that raise a person’s tolerance level to their situation. This has a dual effect: