PORTRAITS IN PALLIATIVE CARE
Art therapist Sarah Tevyaw on expression through visual arts for those at the end of life and in bereavement
听鈥�It鈥檚 so amazing the purpose that art brings to those at the end of life.鈥�
By Devon Phillips. Sarah Tevyaw, art therapist and creative and compassionate soul that she is, employs听all forms of visual art with people living with terminal illness as well as those in bereavement. Art therapy is used to reduce pain and anxiety, facilitate communication, leave a legacy, create connections and just have a wonderful time! From memory boxes, hand sculptures, paintings, knitting and building bird houses, there is no limit to what people, including those who are visually impaired, can create. 听I met with Sarah in Montreal, Quebec.
Q: How is art therapy used in palliative care?
础:听 In many ways! When I first started to work at the West Island Palliative Care Residence (WIPCR), we actually were not sure how art therapy would be used. They had never had an art therapist work there before. Part of my role is to teach people how art can be used. Even though people are spending their final days at the Residence, there is still potential for new beginnings. 听For people who may be agitated or who are restless and need to relax, I may bring in art materials to help them refocus their attention on something other than their pain. Other times art is used as a way to leave a trace, a legacy, so I have made memory boxes with patients, helped people write letters, record sounds, voices or images to leave for someone close to them. A big part of what I do is work with patients and their families to create hand sculptures as a form of a legacy in a very physical and visual form.
Art therapy deals with the visual arts- it could be anything from painting, drawing, or fabric and textiles. I think what鈥檚 different about art therapy from art education or art as recreation is that it鈥檚 really about the relationship and creating a safe holding space for people to explore something they have never tried before. It鈥檚 a different way of making art.
Q: You mentioned that when you came on board at the WIPCR, it was a new program. Why did they decide to have an art therapist as part of the team?
A: I was really interested in palliative care so I approached the volunteer coordinator at the WIPCR. At first we were not sure how art therapy could be offered when people are at the Residence for such short periods of time听听 潭听听 a few hours, a few days, a few weeks maybe. So after volunteering for a few months the Director approached me and said, 鈥淚 think this is a program that we really need to integrate and recognize its value,鈥� so we held fundraisers, and by the second year, the art therapy became a permanent core program and is now recognized as an important way for people to make meaning of their experience.
Q: What is a hand sculpture?
A: This is a way two people can do a sculpture together, often a patient and a family member such as a mother and daughter or a husband and a wife. Sometimes we meet people who have been married for 50 or 60 years, so a hand sculpture may be a meaningful project for them. I invite them to start thinking about how they have held hands together. Do they hold hands while they are sitting in the car, walking down the street, sitting on the couch?听 What are their favourite memories of holding hands and what is the positioning of their hands? This gives them the opportunity to feel one another. They may not have done that in a while or maybe they have done that all the time at the bedside. Then they put their hands in this jelly that I mix and that takes an exact mold of their hands, every detail, every mark, every scar, even the marriage ring.听 And then after they remove their hands, I pour in plaster and that becomes the sculpture so it鈥檚 really an exact replica.
Q: What feedback do you get from people who have had hand sculptures done?
A: The process is just as important as the final object. Sometimes the process is very difficult for people. They spend a really intimate time together and I have heard people say things like, 鈥淚 am not ready to let go.鈥� 听But when they see the final sculpture, it鈥檚 extremely meaningful. Most of the time it is kept in the patient鈥檚 room until they die and it becomes a focal point for anyone who comes into that room and something for them to share with the nursing staff or the volunteers. They decide with their partner or their child where the sculpture will be placed and how it will be used.听 People have mentioned that after the death, it becomes such an important object in their house. I get notes and cards from people just saying how important it is to have this sculpture. It is so different from a photograph- it is so real, three dimensional, and so meaningful.
Q: And what are memory boxes?
A: Memory boxes can take many different forms and they can be done while the person is at the end of their life, or with a family member or even a child after the death. We can use any box, like a shoe box, something that is recycled or found, or something that is precious. We fill the box with things that are important to them. If it is someone living with a terminal illness and they would like to pass on a message to their children, it can be hard for people to know where to begin. So sometimes I鈥檒l give people little cards with cues like, 鈥淥ur favourite holiday was when鈥�,鈥� or, 鈥淩emember the time when鈥�,鈥� and this stimulates conversation and helps them reminisce about what is meaningful to them.听 The boxes can include cards, letters, maybe music as well or an object that they wanted to leave to their child. I have seen the boxes filled to their absolute max where there is no room left. I have made memory boxes with kids and adults after the parent or spouse had died and it鈥檚 a way to remember them, a way to make space for them in their life.
Q: So art therapy can help someone who is at the end of life and it can also help someone who is bereaved. Does the approach change for these different populations?
A: 听The approach is adapted because everyone is unique. At the end of life, you adapt whatever you are offering to the person鈥檚 energy level, what they are able to do, and sometimes the things they want to make will be very different than someone who is bereaved. Regarding bereavement, most of the time I work with kids who are bereaved because they have lost a parent or a grandparent. Kids naturally gravitate to art.听 It is such a natural way to express what is going on. I always remind the parent or whoever brings them that the child is not going to be forced to do the art听 and they are not going to be forced to talk, but often how they feel comes out through the process of making the art. Things come up and we have the opportunity to work through it.
Q: Tell me about the children鈥檚 bereavement group. Is this held through the WIPCR?
A: The children鈥檚 bereavement group started last year at the Residence and it is offered to any family that has come through the WIPCR or who is in the community- so it is available to any child who has experienced the death of a parent or grandparent.
Q: What is special about art in terms of being able to express yourself? What would be the merits for it versus talk therapy?
A: For both people living with a terminal illness and for those who are bereaved, sometimes we are not ready to talk about it and sometimes we cannot find the words to express what is going on. Art is a visual language. It doesn鈥檛 need to be interpreted. Art gives people the opportunity to express anything that is going on through an image.
Q: Can art therapy be useful for people who are unable to speak?
A:Absolutely. At the residence, sometimes people at the end of life will come in with a brain tumour or metastases that have affected their ability to speak. I will bring in art materials and it鈥檚 amazing to see what can happen in terms of communication, whether we draw something out and have a story or a type of visual conversation. I have also worked with people who do not speak English or French, so you communicate with visual symbols, colours and cues, or we may just laugh and have fun as we create a kind of conversation on paper. I have also offered art therapy to individuals who were living with ALS or other neurodegenerative terminal illnesses and they are on intubated so they did not have the ability to speak anymore. With these patients we used assisted technology and eye-tracking systems so they can create and speak using a visual means. We set up a computer using a mouse tracker in which their eyes follow the movement on a computer. They can create the art that way. Just amazing!
Q: What do people at the end of life want to achieve by doing art?
A: I think that the most common thing is to leave a trace behind, a footprint, a fingerprint, a story, an image. I think it鈥檚 very difficult to leave this world not knowing if you are going to be remembered or for how long. There are so many ways in which art can help you leave a trace, whether that鈥檚 a permanent trace that you know will be there long after you are gone, or it may be something that will only be there for one season, or only for a few weeks. Leaving a trace 听is helpful for people who are leaving this world. We don鈥檛 know where they are going next but we can make symbolic reminders that they were here.
Q: Is it different working with people who were very involved in arts, either professionally or as a hobby?
A: Yes, it鈥檚 different! Often when I introduce art therapy, the first response that I get from those who were not involved in art is, 鈥淥h, I am not an artist. I can鈥檛 even draw a straight line!鈥� So part of my job is to open them up to different ways of making art. But when I meet artists it can be difficult in a different way although there is a large spectrum of responses. While art had a very significant role in their lives before their illness, as they were diagnosed with cancer and their illness progressed, their artistic abilities might have changed and they may feel embarrassed or ashamed of what they are able to create now versus before. That鈥檚 one scenario. Other times people are so happy to hear that there is an art therapist.听 Maybe they hadn鈥檛 made any art in the past year because they have been too ill but now that they are settling in to the residence, they are happy to finally use those tools again.
Q: When you work with someone at the end of life, how do you organize the time you have to work together when time is so precious?
A: I usually try to spend as much time as I can with each person. Art therapists often work in more clinical settings where we would have more structured one-hour sessions. 听I can remember when I first started doing art therapy with people with terminal illnesses, I did not have a watch and I kept thinking 鈥淚 should probably be timing these sessions and making sure that I give each person an hour.鈥澨� Then I realized that that wasn鈥檛 important and that I should just give the time that each person needs. There are always going to be limitations but often when I see someone that may be the only time I see them. I don鈥檛 know if we are going to be able to continue our project tomorrow and I certainly don鈥檛 know if we are going to be able to continue our project next week. So I make sure that we do as much as we can at that moment and that may mean spending 20 minutes with someone or it may mean spending two hours.
Q: How do you manage the comings and goings of people with whom you connect intimately though the art therapy process?
A: 听
They are definitely intimate connections and I think everyone at the Residence would say that some people affect them more than others. It鈥檚 really an honour to meet every single individual and to work at the Residence. I use art as well as a way to reflect how much all these people have changed my life, just all those special moments and special interactions. I write, embroider, sew and paint. I worked on an embroidery of a tree as a way to capture all of these experiences as well as to thank each individual I worked with. The trunk of the tree was made out of parts of people鈥檚 initials. Others I would embroider into a root if I they were particularly grounded. Other people symbolically represented a branch, others were leaves, sometimes it was a flower under the tree, sometimes it was cat beside it. Every time someone would die, I would add another stitch to the tree. It was amazing to see how all these people came together, united in the end, to create this tree.
Q: How wonderful! You said all the people have affected you and changed your life. How so?
A: I am so happy at the Residence. It鈥檚 an absolute privilege to work there and it鈥檚 incredible to work with the patients, the families, the children, and find ways to connect with them. Sometimes it鈥檚 a simple as knitting with someone. I am often reminded how the knitting is really secondary and what is important is what happens while we are knitting. We talk and share stories and we forget about things as we knit. These are incredible experiences and I don鈥檛 know how you would get them any other way.
I am affected every day by those special moments spent together. I have learned how to appreciate every moment of life. I can remember working with people with limited or no mobility or who no longer had the ability to speak or could no longer eat. And when I would leave at the end of the day and would be sipping my coffee, I would notice how amazing it tasted. My time with people at the end of life has given me a more mindful approach to how I live.
Q: In your experience, do men and women equally appreciate and benefit from art therapy?
A: Yes. Part of my responsibility is finding ways to meet the needs of both men and women. Just recently I spent time building a bird house with a man who had a lot of experience doing this. In my approach, I am definitely not the expert. I am amongst a lot of teachers who have so much to share as each person who comes into the residence has so much experience and knowledge. This person taught me how to build a birdhouse.听 It was incredible process and we were able to install it at the residence so that he could see it from his room and watch the birds nest.
Q: You have certainly won them over at WIPCR! The Director feels the benefits have been so obvious that other people need to know about art therapy.
A: Because art is visual people can see what is created 听潭听 it鈥檚 on paper, there is colour, form, there are people鈥檚 hands- so it鈥檚 a really special way to capture those moments.
Even if someone cannot see and there is art going on around them, there are the sounds and the smells, those are reminders of important things in our lives. When I think about some of the men that I work with, sometimes I just bring in wood if I know this person was a woodworker, or I bring in things that are familiar, like leaves from outside or wood cuttings because people respond to these smells.
Q: So you even work with people who are visually impaired?
A: Yes, absolutely. For example, I worked with a woman who had never made art and was completely blind as a result of her illness. She made a necklace for her granddaughter. She made the beads from scratch out of clay, painted them herself in her grandaughter鈥檚 favourite colour, strung them herself and we hid them in the drawer the whole time she was at the hospice so it would be a surprise. We often worked on the necklace in the dining room at the Residence, the staff would see her creating and were so amazed that she was able to do this even despite her loss of vision.
Q: Does the art give purpose?
A: Often this is true. When living with a terminal illness, at times it may feel as though the illness has taken control of your body and has changed the roles you had in your family or in your community and you don鈥檛 know what your purpose is anymore. Often art brings focus to your day and purpose to your life. I believe that some of the people that I have worked with would have died in a different way if not for the art therapy. Instead of giving up, they continued and sometimes they were so determined to finish what they were creating that that became their purpose. And they do, at times they will finish it days or even hours before they die.
Q: Looking to the future, how do you see your role as an art therapist evolving?
A: I know I want to continue working at the Residence, no doubt in my mind about that, but I鈥檇 also really like to be able to extend these services into the community. Only 30% of the population has access to palliative care, and only 30% of those people have access to art therapy services so there are a lot of people who are dying at home or elsewhere who are not offered the opportunity for making hand castings or memory boxes.
I am grateful to be at the WIPCR and that the Director Teresa Dellar was open to integrating art therapy services. We are doing a great job at the hospice but I think there is a real need for these services in other places. Some hospitals have music therapists but it might only be one music or art therapist for 300 or 400 people. Art and music therapy need to be recognized as equally important as other psychosocial services.
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