4.11 The contribution of art therapy to palliative medicine

Art therapy is an umbrella term for a range of approaches that use visual art media within a psychotherapeutic relationship. Art therapy enables someone to explore personal issues by expressing thoughts, feelings, and other significant issues non-verbally, and thereby provides an alternative to spoken language, aiding better communication and symbolic representation. The art therapist’s task is to facilitate the patient’s expressive capacities, and help him or her reflect upon what they have produced, including their chosen media and style of working. Art therapy does not aim to distract or divert a person from their difficulties but through encouraging an experience of creativity these difficulties can be perceived and worked with in a new way. The purpose of art therapy is to empower the patient to develop and flourish on a personal level, even at the end of life.

The loss of control in many areas of patients’ lives is an inevitable consequence of illness, and one that art therapy aims to address. The physicality of art therapy, where an individual must actively engage with the materials to produce a picture or object, provides an experience that reinforces the person’s ability to make choices and their sense of their own vitality. The artwork represents not only something of the patient’s mental state but also, by capturing in its marks and traces the movement and pressure of the patient’s pencil, brush, or finger, it represents something of their physical condition too. This articulation through the artwork of the mind–body relationship is intrinsic to art therapy. It has been suggested that art therapy’s potency resides in this link (Borgmann, 2002; Collie et al., 2006; Siegel, 2009; Stern, 2010), so that art therapy is ideally placed to respond to the psychological effects of physical trauma (Gantt and Tinnin, 2009).

An important aspect of art therapy is that it provides an opportunity to express emotions that may feel unacceptable to the patient. The patient may have stifled feelings of anger, envy, and sadness for fear of upsetting their family or staff. In art therapy, pounding clay, pouring paint, and scribbling violently on paper gives the patient permission to express strong feelings, and the presence of the therapist ensures the patient is not left alone with their distress. Art therapy also allows for the development and expression of more positive feelings such as tenderness, hope, or beauty. The breadth of emotional expression possible through art therapy demands a working environment that provides confidentiality and in which the patient can feel free to be vulnerable. A separate therapy or quiet room designated for art therapy sessions is ideal. There is growing discussion regarding the therapeutic importance of creative spaces within palliative care settings. For example, Glenister suggests a link between the creativity that can be facilitated within such environments and optimal spiritual care (Glenister, 2012).

It is important to distinguish art therapy from creative arts activities (Pratt and Thomas, 2007; Hartley and Payne, 2008). Although there are some areas of overlap, art therapy and creative arts projects have different yet complementary functions within palliative care. Both engage the patient in actively using art media and provide a focus and sense of purpose. Both result in an increased sense of control, self-confidence, and make a positive contribution to patients’ quality of life. Creative arts projects may aim to help the patient produce artwork for sale, or to bequeath to relatives. Although the artwork produced in art therapy may on occasion have a similar outcome, its focus is different. As patients strive to express and explore their inner emotional landscape through their art there is no expectation that work should be aesthetically ‘good’ in a conventional sense, or viewed outside the therapy space. Consequently, the artwork may have a rough undeveloped quality to it.

The manner in which the artwork is made offers additional expression for the patient, and deepens communication with the therapist. The need to witness the patient’s art-making process is one reason for the therapist’s presence in the sessions. Although an aim of art therapy is to facilitate psychological adjustment by the patient to their changed health through this multifaceted communication, the permanent nature of the artwork means that its significance can continue to be unpacked from session to session and outside of the therapeutic relationship. Patients have been known to use their pictures to communicate with friends, family (Luzzatto et al., 2003) other patients in similar situations (Connell, 1998; Wood, 2005), and their doctors and other members of the interdisciplinary team.

Art therapists, artists in residence, and art tutors can and do work alongside each other in many establishments; their combination of skills is particularly effective where their differences are understood. While both encourage the patients’ creativity and improve the overall milieu of the health-care environment, art therapy works with the psychological and emotional needs of the patient, which includes their barriers to creativity and their difficulties with self-expression. It can be hard for a patient or a professional to know whether art therapy or recreational art is more appropriate. Most art therapists provide assessment sessions in which the patients’ needs may be discerned. Case 1 describes the dual functioning of art making in a palliative care setting showing the different roles played by art therapy and art activity for a woman with motor neurone disease.

Whilst working in a large London hospice I was introduced to Rosemary, who had recently been diagnosed with motor neurone disease. Having become paralysed down one side of her body and rapidly losing the power of speech she had expressed a wish to ‘paint her feelings’. She was, by the time I met her, using an electronic writer to communicate and only had the use of her right arm. Anything she ‘said’ was through the writer. Although unfamiliar with the use of art materials, she engaged in the process very quickly, allowing herself to paint freely. She began to look forward to ‘the unexpected’, which presented itself to her in each session, like the painting she referred to as her ‘Devastated Woodland—half dead, struggling for survival’ (Fig. 4.11.1). She was able to relate the image to her feelings about her own situation. Her ‘fun’ painting became a way to address serious issues around her encroaching illness. Through it she began to express her thoughts and feelings about the adjustments she had to make, not just physically, but psychologically. Through her images she was able to express her painful recognition of change and loss. With the loss of spontaneity and inflexion in speech, Rosemary’s painting became her ‘voice’. Her choice of materials would often indicate her tone and mood. On one occasion she chose bright, cheerful colours, but the black paper she used reflected her underlying melancholy, and the resulting picture helped her to recognize the tendency to ‘put on a cheerful front’ when all behind it was not well.

In the course of using art therapy to express difficult and painful feelings, Rosemary discovered another side to her image making. She began to paint alone in her room. This work took on a ‘painterly’ quality. She painted gardens resembling images from the Arabian Nights that contained a sense of richness and fertility. Staff and other patients would come and see what she had been doing each day, and her self-esteem increased considerably. Her images enabled her to become empowered at a time of increasing powerlessness and dependency. With the increase in Rosemary’s use of her newly found creative skills, it became important to differentiate between her ‘public art’ and her ‘private art’. She needed reassurance that she still had a private and safe space in the art therapy sessions where she could pour out what she called her ‘madness’. She seemed at this point to have moved into a third and what was to be the final phase of the art therapy sessions where, as her body deteriorated, the emotional floodgates opened. Fear, grief, anger, hatred, and despair appeared in the images before us. Her art therapy sessions provided the container necessary to hold the overwhelming grief she poured out in torrents. It was the coping strategy she needed in order to carry on throughout the rest of the day.

Art therapists work in a range of settings: patients’ own homes, prisons, day care units, specialist inpatient units, hospices, and private practice (Bell, 1998; Beaver, 1998; Wald, 2004; Waller and Sibbett, 2005; Oster et al., 2006; Agnese et al., 2012). People with a wide range of conditions including HIV/AIDS, rheumatoid illness, multiple sclerosis, cancer, dementia, and Niemann–Pick’s disease have been reported as benefiting from art therapy (Wood, 2004). The range of conditions and variety of settings in which art therapy is offered indicate something of the multiple contributions art therapy can make to patients’ care. Whilst recognizing this breadth of application, is it possible to discern which conditions or types of patients would benefit most? Since art therapy is a means of facilitating communication, it is particularly useful for patients, their family, or carers, who are having difficulty with usual modes of communication. Such difficulties can be physical, cognitive, emotional, or even spiritual in origin, and thus provide different starting points and ways of working for the therapist. Case 1 clearly illustrates how art therapy can extend a patient’s capacity to manage their emotions, and communicate with others despite physical decline. Similarly, the person with AIDS dementia may no longer be able to coherently discuss their fears and anxieties but may be able to use the qualities available in art to express themselves and relieve their frustrations. In this case, the art therapist may not focus on discussion or interpretation (Wood, 2002). By contrast, where there are emotional difficulties the therapist may well explore in depth the patient’s associations to their image and their behaviour. Coote illustrates this in her work with an attention-seeking patient where art therapy allowed the expression of bitterness and resentment, unrecognized aspects of the patient’s inner self (Coote, 1998). Connell gives an example of how art therapy was used to address and work through a patient’s spiritual struggles (Connell, 1998). The importance of spiritual aspects of art therapy is also discussed by Bell (2011). Trauger-Querry and Haghighi describe an approach using art therapy and music therapy in the reduction of pain (Trauger-Querry and Haghighi, 1999).

Young children, whose developing capacities for verbal expression limit their use of talking therapies, are an obvious group for art therapy, as art and drawing are more familiar means of self-expression (Teufel, 1995). Farrell Fenton, an art therapist with children and young people who have cystic fibrosis, suggests that art therapy works on two levels simultaneously: by providing a means of emotional catharsis while at the same time harnessing the young person’s coping strategies (Farrell Fenton, 2000).

Many factors including social status, educational levels, and ethnic backgrounds influence the patient’s comfort in expressing and addressing their emotional responses to illness with health professionals. In my experience of serving an ethnically diverse population, art therapy can be a welcome tool for patients negotiating their experiences of illness and treatment in a language and cultural setting that is not their own. Art therapy can strengthen their ‘voice’ and validate their experiences. While it is important to offer people from all cultural backgrounds access to art therapy, staff should be mindful of the complexity of their patients’ cultural values and the ways in which these may vary within groups. One example found in some orthodox branches of Judaism, Islam, and Christianity is the issue of aniconism, where making any representation of the human form is prohibited (Khan, 2012). While such beliefs do not preclude a person from participating in art therapy, understanding the religious and cultural underpinnings of their relationship with visual imagery is vital.

Art therapists usually work under the auspices of the counselling or psychosocial teams and as part of the wider multiprofessional palliative care team (Jones and Browning, 2009; Jones et al., 2013). Referrals to art therapy arise from a close consideration of patients’ needs by the team, and in cases where a patient requires emotional support but is unable or unwilling to access counselling, art therapy may be suggested. For example, I work as part of the patient and family support team in a specialist palliative care unit alongside counsellors, social workers, chaplains, and family therapists. Referrals can be made to anyone of us individually, or to our team itself for further assessment of the patients’ psychosocial needs. How the different disciplines of the palliative team work together is a matter for consideration, and in particular art therapy’s part in this. For example, should a patient have art therapy at the same time as counselling or other emotional/psychological therapies? Art therapy works at verbal and non-verbal levels and while it may be possible for an art therapist to work in conjunction with a counsellor or psychologist this must be based on careful assessment of the patient’s needs. It may be that someone begins with art therapy and then moves on to work with another discipline such as music therapy or chaplaincy. Coordination and communication amongst the professionals is key to successful outcomes for the patient.

Art therapists are often employed on fractional or sessional contracts, with the result that they may not always be able to attend team meetings. However, their contributions to patients’ care should be conveyed to colleagues in written form as patients’ records, in case reports and summaries. Where staff time is limited, art therapists, counsellors, and social workers do represent each other in team discussions to convey the emotional aspects of their patients’ care. In the United Kingdom, specific guidelines have been written to enhance an understanding of the role of sessional arts therapies staff (Pratt and Thomas, 2007).

Funding of art therapy is often a major problem. When there are constraints on funding for palliative care services these will often be felt by art therapists, whose contribution may be more readily considered disposable and ‘value-added’ rather than core to patient care. This issue of funding is probably the main challenge for art therapy in palliative care, since it can confine art therapists to fractional contracts which limit their work, and prevent access to the sorts of research and continuing professional development opportunities enjoyed by their medical, nursing, and allied health professional colleagues.

The hazards due to art therapy are minimal but the following pitfalls are worth mentioning. There can be a concern from some staff that the expression of feelings through image-making may unleash a flow of emotion that will overwhelm the patient and those around them. Usually, these concerns dissipate when it is realized that the processes and boundaries of art therapy prevent this from happening. The patient never fully relinquishes control, but through the manipulation of the art materials their usual defences can give way to more symbolic expressions of feeling states (see Case 2). The therapist’s skill in working safely and effectively ensures that difficult feelings are contained, addressed, and resolved.

The therapeutic value of art therapy may be undermined if the position of the art therapist in relation to the interdisciplinary team is not respected or clearly understood. One example of this can be seen when art therapy sessions are interrupted for procedures or questions that could be done at another time. Another example is where communication between the art therapist and their colleagues is not valued and there is an unnecessary replication of work with the patient or family.

Another hazard of therapeutic work, and indeed of all work in palliative care, relates to the emotional well-being of staff (Hardy, 2001). Therapists need to ensure that they themselves are adequately supported through the use of supervision, supportive teamwork, and possibly their own personal therapy. All these strategies have proved to be beneficial in guarding against staff burnout and inappropriate behaviour. Art therapy itself is often used for staff support and can facilitate a valuable level of creativity, communication, and expression in tired staff teams (Belfiore, 1994; Nainis, 2005).

On a practical level, the hazard posed to patients by the art materials does need to be considered. Most materials used in art therapy are non-toxic, but where materials could pose a risk (e.g. fixative) therapists ensure that usual health and safety precautions are taken. In cases where cross-infection between patients may be an issue it is standard practice that separate sets of equipment are used.

The anecdotal literature consisting of accounts by practitioners and patients themselves on the value of art therapy for people with life-threatening, -limiting, or terminal conditions suggests potential benefits of art therapy, which are outlined in Box 4.11.1 (Hill, 1948; Teufel, 1995; Pratt and Wood, 1998; Jones, 2000; Waller and Sibbett, 2005; Stein, 2006; Solomons, 2007; Malchiodi, 2012). Systematic research into art therapy is only just emerging as practitioners and academics begin to investigate its various interventions, outcomes, and therapeutic efficacy. A recent systematic review of studies on art therapy and the management of symptoms in adults with cancer took a close look at the research studies for this population (Wood et al., 2011). It found that most studies were small scale, had methodological limitations, and the disparities between definitions of art therapy and diversity of patient groups prevented evaluation. However, there was some evidence that art therapy might have a beneficial effect on reducing fatigue, tiredness, and psychological and spiritual distress, and in promoting coping. The authors concluded more work was warranted in exploring these benefits further. Since that review, newer studies have favourably evaluated the perceived helpfulness of art therapy to support those undergoing cancer treatment (Forzoni et al., 2010; Agnese et al., 2012) and the benefits of an art therapy intervention for terminally ill patients in hospital in Taiwan (Lin et al., 2012).

Adjusting to multiple losses (purpose, health, and social position), and facing one’s own mortality, is equally central to care of the elderly. There has been much work done by art therapists with this population who are often cared for outside of palliative settings. One UK-based study (Rusted et al., 2006) evaluated art therapy with people suffering from dementia using a control group design where the control situation was a standard day centre, mixed activity social group. The researchers found that there was a significant difference between the patients participating in art therapy and those in the control group.

Patients are referred to art therapy for a variety of reasons and at differing stages of their journey from diagnosis to terminal care. What is clear from many practitioners’ reports is that patients with life-threatening and terminal illnesses are motivated to make the most of the time they have left. There is evidence (Balloqui, 2005; Nainis et al., 2006) that even a single session can be of value, as Case 2 shows.

Robert, a man in his early 30s, was diagnosed with AIDS and was in hospital for respite care and symptom control. He had a detached and objective approach to his diagnosis and liked to be informed of all medical facts. When we met, he had announced to staff he no longer wished to discuss his condition.

Robert began the art therapy session by being somewhat surprised by the range of art materials available, and that we had a whole hour together. He said he was unsure about what to do, and I invited him to experiment with the materials to see what marks they made, and what he liked using. Robert said he was anxious about making a fool of himself and of making a mess; he wanted to do things properly. We talked about this initially in relation to his life outside the hospital, and then how he felt about making an image with me watching. Once we had acknowledged these concerns Robert began to draw.

Robert worked with some skill and concentration. As he worked he began to cry. Initially he was embarrassed, but did not stop himself. In fact he was glad to cry. He said that he had not realized he could still feel the things the drawing had brought to mind. He allowed himself to cry freely as he continued with his picture (Fig. 4.11.2). His starting point had been to draw an image of the leaves on the tree outside his bedroom window. However, despite attempts to draw autumn leaves he found himself only able to make them green. He noticed that he concentrated on the veins of the leaves, and made a link with his constant examination of his own veins, which he did to monitor his health. We talked about his green leaves being separate from the tree in the background, and his feelings of being plucked from the tree of life before his autumn years.

The tree he had drawn was beginning to blossom, and Robert felt very positive about it. The scene in the background was one that he had drawn several times before when he was a schoolboy. He remembered growing up in the countryside and talked of the dreams he had then for his adult life. Aspirations he regretted that would never now be fulfilled. Robert noticed that he had omitted a fence, which meant that the gate was useless. There seemed to be nothing separating him from the unknown place that lay beyond this field.

At the end of the session Robert reported feeling exhausted but light inside as though a burden had been lifted. This session had enabled Robert to connect with the grief he felt about having AIDS. Although we talked about some of the issues raised in the picture, the main focus was allowing him to feel and to cry. His announcement to staff indicated that he had gone as far as he could with words. This one-off session prompted a positive change in Robert that was noticed by hospital staff and his partner.

Palliative care aims to support not only the patient but also those who are close to them. Support is often provided at hospices for partners, spouses, children, and other family members and friends while the patient is ill and after the patient has died. Case 3 illustrates this.

‘Caroline’ attended the hospice’s carers’ support group during the final months of her older sister’s life. She found it helpful to talk with other carers about the stresses of giving up her home and time to support her sister, and Caroline acknowledged how easily she lost sight of her own needs. The art therapy element of the group provided the means by which Caroline could represent, reflect upon, and validate her feelings. She often used different media, drawing with traditional materials, photographing these drawings, and developing them digitally using her iPad. When Caroline’s sister died she continued to attend the group, on one occasion bringing with her a seedpod she had found when clearing out her sister’s belongings. Caroline used this as the basis for a picture, working both digitally and traditionally, and created a short animation. The animation represented the transformation of the seedpod, which scattered its seeds while Caroline glued it to the paper. What had begun for Caroline as a simple idea to characterize her sister’s love of natural objects became a powerful symbol, and part of her process of grieving. Caroline sang Gershwin’s aria ‘Summertime’ as the musical track for her animation; a song the sisters had enjoyed together, which had remained significant for her sister, and one played at the funeral.

Art therapy with the bereaved has been well documented over the past 20 years and in some settings has become an integral part of bereavement services (Simon, 1981; McIntyre, 1990; Pratt, 1998).

Art therapy is being practised in many parts of the world with adults and children living with life-threatening and terminal illnesses. There is a continuing recognition that art therapy does positively benefit patients, their carers, and the professional team. The flexibility of art therapy to address a wide scope of issues ranging from pain to a patient’s search for meaning makes it a valuable aspect of palliative care. To ensure that the benefits of art therapy are more clearly understood and that its efficacy is maximized there needs to be an increasing investment in research into this discipline.

Case 2: ‘Robert’ adapted with permission from Wood MJM, ‘Art therapy in one session: working with people with AIDS’, Inscape Winter 27–33, Copyright © 1990 INSCAPE.