Music Therapy in Hospice and Palliative Care | Gwen’s Story

Guest blog post by Jennifer Buchanan of JB Music Therapy – a Canadian company based in Calgary, Alberta. “Our mission at JB Music Therapy is to transform lives through excellence in clinical practice and education by bringing music into the foreground. JBMT has been providing music therapy services since 1991. We offer personalized programs for individuals coping with brain injury, mental health issues, learning challenges, dementia, palliative care, addictions, long-term care, autism, as well as youth at risk.”

 

The Music Therapist’s primary aim is to assess, identify and provide music experiences that will evoke the greatest positive response from individuals and groups in the areas of: comfort, communication, self and social expression, mood, motivation and perception of self-worth.

Music Therapy is the study and practice of how music affects people.  Our music therapists use music as their primary intervention when working with all population groups.  The music therapists will incorporate singing, vocalizing, instrument improvisation, exploration of unique sounds and other sensory and sensitive experiences.  Tempo, timbre, melody, harmony, pitch and genre of music are always considered – with the primary aim of supporting the needs of the clients/patients by easing anxiety/stress, opening doors to communication, engaging  and creating opportunity for inclusive social interactions.

Integrating music with supportive care of the dying is becoming more common in hospice and palliative care programs.  Our clinical work has indicated that music therapy in Palliative Care can:

  • Help to Decrease Anxiety.
  • Help with General Feelings of Discomfort.
  • Address Spirituality
  • Enhance Quality of Life.

A certified music therapist is a graduate of a Canadian Association for Music Therapy recognized music therapy education program.  Music Therapist Accredited (MTA) is given to music therapists who have completed their education (undergrad or masters) in music therapy, a 1000-hour internship, and have passed the Certified Board of Music Therapist’s exam.

 

Gwen: will you remember me?

            Being aware of your personal soundtrack can have some profound consequences.

For Gwen, music enabled her to become all that she could be just a month before she would die. Gwen, a fifty-five-year old blonde beauty, sat in a warmly decorated room near the window. Sixteen months prior, she was diagnosed with cancer. Now she sat in a hospice room near the outskirts of town. She was a model patient going through many rounds of chemotherapy and radiation. After her initial diagnosis and for several months, her family and friends were not aware of her cancer. Gwen would rarely ask for help. The care staff were just around the corner and would often enter her room to check on her. Except for occasional pain medicine she would smile at them and say, “I’m okay.’ Her husband had passed away many years before and she would often say she was glad he went first as this would have been very difficult for him.

She never expected the breast cancer to metastasize at such a rapid rate until she heard those fateful words, “There is nothing more we can do for you but give you a comfortable place to rest.” She had dreaded telling her only daughter and her sister the news. When she told them, they both broke down in tears and were soon making sure the doctors had done everything they could. Now in hospice, Gwen did all she could in her fragile state to prepare her loved ones for the inevitable.

When I was introduced to Gwen, she was wearing a colorful head scarf that covered what was once blond hair. Pictures of her and her family were all around the room, interspersed with colorful paintings and drawings.

“Come, sit close to me, I have been expecting you,” she said.

She pointed to the chair next to her chair by the window and rested her hand on my shoulder as I sat down. She turned slightly and in a sweet, gentle voice said, “I have had a lot of time to process what is happening to me, and understand I must die. I am worried about my daughter, Hailey, and my sister Julia. They are very angry. She took a deep breath and said, “They are not accepting that this is happening to me or to them.” She brushed a few strands of what was left of her hair away from her eyes and said, “I need you to help me.”

She pointed to several pieces of art around the room that she had created over her lifetime. She spoke of how her daughter was as passionate about painting as she was. “It’s in the genes,” she assured me and mentioned to me her sister had started taking lessons over the past few years. She told me that she had some ideas of how to integrate art and music while also helping her daughter and sister come to the understanding that she is going to die—and soon.

Just as my grandmother had a plan years earlier reaching into a desk drawer for my grandfather’s favourite song, Gwen’s plan also rested in the desk drawer she had asked me to open. “Take out the small stack of papers.”

I looked at the ten songs in front of me.

“Will you please play the songs on your guitar on Saturday and meet us here precisely at 2:00 p.m.?”

Before I had the chance to say, “I don’t work weekends,” her blue eyes crinkled and she touched my shoulder again. I would change my weekend plans.

That Saturday, I had the songs prepared and arrived precisely at 2:00 p.m. Her daughter and sister were sitting on either side of her. She asked me to sit in the corner on a chair. Once we were all in place she sat up a little further in her bed. She started by saying, “Thank you for coming.” She then turned to her daughter Hailey and her sister Julia and said, “I invited you here today because we need to say goodbye.” Silence. “I know that this is hard for you as it is for me, so I came up with an idea that could perhaps help all of us. Hailey will you please go into the side closet and take out the piece of canvas I asked Julia to bring last week.”

Hailey slowly walked over to the closet, opened the door, and brought the canvas that had been leaning against the wall inside. “Julia will you please reach into that top drawer and bring out the pastels that one of the nurses brought for me.” Julia walked to the end of the bed and opened the top drawer where the pastels were. There were many colors.

Once the two women were back on either side of Gwen, they heard her speak again. “I have asked Jennifer to play ten songs today. During the first song I am going to start drawing and when the song ends I am going to pass the canvas to you Julia and you are going to continue the picture adding in whatever the music brings to your mind.

“When the second song is finished then you will pass the canvas to Hailey who is going to continue from where you left off. We will pass the canvas back and forth after every song for the first nine songs and then relax and reflect during song number ten. The tenth song is a special song I have selected for the three of us.”

Julia and Hailey stared at Gwen not saying a word. Gwen’s determination was clearly visible on her face and to say anything would break the spell she had on all of us. Hailey passed the canvas to Gwen and reached into the box on Julia’s lap to select a couple of pastels. I took a deep breath. When Gwen looked at me and nodded slightly I started to play. I could not see what was being created on the canvas, but I could definitely see a transformation happening on the faces of the three women. The canvas did what it was supposed to—passing between each family member at the end of each song. No tears were shed, just a change of focus and an occasional smile as they passed on their contribution.

We sang many powerful songs. What a Wonderful World. Lean On Me. You’ve Got a Friend. Soon it was time for the last song. I was nervous as I strummed the first few chords as I knew there would be no more pastels on the canvas, only reflections of what was created. The highly emotionally charged song Gwen selected as the last piece was Louis Armstrong’s, “Wonderful World.”

Gwen put a few finishing strokes on the canvas and then held it up for each of them to look at. The tears they held back released and two arms went behind Gwen in an embrace as they gazed at the piece of art they created. I finished the last words and put my guitar down quietly. Gwen passed the canvas in my direction as both her daughter and sister’s faces were now embedded in both of her shoulders. I carefully put the canvas on a high shelf looking down on them so it could dry. It was a beautiful meadow with flowers of many colours. I left the room so the women could say goodbye.

Gwen had set the intention of using her life’s music soundtrack as the backdrop to already powerful relationships. It was a non-verbal means of sharing herself and her heart, and those songs allowed her to say a touching goodbye.

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Keeping Our Compassion Alive – What Works?

by Françoise Mathieu, M.Ed., CCC. Compassion Fatigue Specialist

As a compassion fatigue specialist, I have the privilege of travelling across North America each month, meeting helping professionals of all stripes: nurses, social workers, physicians, police officers, lawyers, and a myriad of others who work in high touch situations with individuals with complex needs.

Sometimes I’m offering a lunchtime keynote, and in other instances a half or full day workshop. During these trainings, participants explore the many-layered challenges of their jobs, exploring their struggles with insufficient resources, inadequate pay, secondary trauma exposure, compassion fatigue and the risks of burnout. Working in this field can be tough when there isn’t enough to go around, and we acknowledge that in our work together.

Understandably, overwhelmed and depleted helping professionals also want solutions when they come to our training and they frequently ask challenging questions: “can we prevent this?”, “What about my workplace, aren’t they responsible for providing a healthy work environment?”, “What can I do when my case-load has doubled in the past three years?”

During the first decade of my work as a trainer, I was a bit at a loss when faced with these queries. I knew that self-care was probably a good idea for everyone, and that managing better work-life balance and getting a handle on debt – so that you could reduce your working hours – was certainly a good plan, but I was not able to find much hard data on what truly worked to combat huge case-loads and regular exposure to very difficult trauma stories. I started hearing from many frustrated and frankly just plain angry employees who were drowning in work and felt unable to see a light at the end of the tunnel. Managers also started approaching me, asking “what can we do to support our staff?”

So, in search of answers to these pressing questions, I went back to the drawing board and had a renewed look at the research. Luckily, some new solutions started to emerge. Of course, I was not the only person on this search – there is now a movement afoot to try and explore ways to make this challenging work sustainable for staff and agencies. How do you support and protect your child pornography investigator? How do you make sure that the pediatric cancer specialist stays healthy and hopeful? The answer, it appears, lays in a multi-pronged approach where personal, professional and organizational strategies all have a role to play.

The Choices you Make

As an individual, you must take responsibility for your own self-care and for the strategic alliances you form at work. Are you priding yourself on working all day without eating a healthy lunch? Do you watch four hours of Netflix at night, going to bed far too late and fuelling yourself with caffeine to get through the day? Do you spend your breaks with the most negative person in your workplace, engaging in pointless office gossip? These choices are yours to own, and although it may seem hard to believe that eating a nutritious midday meal has anything to do with sustaining your compassion, remember that none of us can focus properly on our clients’ and patients’ needs, and maintain our energy if we are not properly fuelling ourselves.

There is of course so much to be angry about in our flawed system: poverty, discrimination, injustice, office politics, unfair rules, etc. All of us could spend most of our days engaged in the BMWs (bitching, moaning and whining), but how productive is that, in the end? In my workshops I refer to the BMWs, as a fake workout, where we have the illusion that we are working on resolving the problem, but we’re really just watching an exercise video while eating a bag of chips.

Key Professional Strategies

Professionally, having access to timely and good quality debriefing and supervision has been found to be crucial, particularly for those of us who work with complex, high trauma-exposed caseloads. I have written an article on best steps to debrief without retraumatizing one another.

If you have not yet done so, making sure that you are trained in what is called “Trauma-informed care” is highly protective as well. Trauma-informed refers to the process where we learn about the impact of trauma on our patients’ and clients’ behaviours, choices and ways of making meaning of the world. It can help us see solutions where we previously only saw their frustration, sabotage and failure to get better.

What can organizations do?

New research suggests that some of the most effective organizational strategies reside in providing staff with more control over their schedule, and a reduced exposure to trauma. Having the ability to interrupt your workday to take your child to her doctor’s appointment, and then return to work, being able to work from home once in a while and having the choice of which shifts you take. Research also suggest that managers need time to grow into their roles and more training in learning how to supervise staff.

The CARE4YOU Conference

In my work in the compassion fatigue field, I saw a growing need for connection and for a forum where helping professionals could gather and share best practices, network, provide support to one another and celebrate the work that we do. This gave rise to the annual compassion fatigue conference, now called “Care4You” which has been held every June in Kingston, Ontario for the past five years. The themes of the event are to Learn, Connect and Refuel. The conference sells out every year, and is filled with helping professionals from all walks of life: personal support workers, nurses, paramedics, physicians, and so many more.

At the end of the day, what matters most in this challenging and rewarding work that we do, is connection with others. That is almost impossible to do when we are too depleted or too angry to talk to one another. The solutions are complex, but first and foremost they require for us, as individual helpers, to make some difficult but important decisions about what kind of a professional we are going to be, even when working in impossible circumstances.

What are Compassion Fatigue and Vicarious Trauma? Watch the video

For more information about the June 9-10, 2015 CARE4YOU conference: www.cfconference.com

Françoise Mathieu is the director of Compassion Fatigue Solutions

 

Reflections from the Beach in Thailand

Happy New Year to friends and colleagues!

Ted and I are in Thailand visiting his brother, sister in law and their granddaughter. We had a week with Art and Aree, enjoying their farming community about five hours north of Bangkok. After seeing and being so impressed with their farming, we left for a small island, south east of Bangkok, near the Cambodian border.

reflections from the beach in thailand

Ko Kut (also spelt Ko Kood)  was a wonderful place to regroup and relax. The island has a dozen or so resorts, a few small restaurants, and some dive shops. Approximately 5,000 residents live on the island.

We swam, lay on the beach, lay under palm trees, hiked to a waterfall and swam some more.

reflections from the beach in thailand

Ted’s brother and family joined us for a final few days of play. We loved our time with them. Wonderful to see the two brothers talking and joking together. Wonderful to be with Aree and her granddaughter Calami and explore and swim together.

We are now headed to Cambodia for the last week of the adventure. Will visit the ancient Angkor Wat temple and explore that area.

It is interesting to me that, after a few weeks of relaxing, I had two very strong dreams about people dying. One was a person who is very dear to me, the other was a dream of a professional experience registering a young woman for hospice.

I am usually a very lively dreamer. I dream nightly. I dream many times a night. Ted teases me sometimes and says, “No wonder you are tired, you have travelled the world in your dreams!” My dreams are not prophetic. Some of my dreams are very vivid. I dream about many things. Sometimes I dream of death… but not usually twice in a short time.

Over the years I have talked, read about, heard about, and experienced “SURVIVOR GUILT” – the guilt that people feel when they are alive, and their loved ones, or the ones they care for, are dying.  Well, I am not burdened this holiday with “Survivor Guilt”, but have found myself  burdened with “Holiday Guilt”.

“Holiday Guilt” – the acute awareness that we are on a lovely long sandy beach and that, no matter how deserving we are of this holiday, there are incredible amazing wonderful hard-working caregivers: Personal Support Workers, Health Care Assistants, Continuing Care Assistants who are working their butts off, and who are not here on their holidays!

On a rationale level I know that we have worked soooo hard. The new book and resources have taken so much time and energy and focus. I have felt glued to a desk and a pen for the last few years. I know that when we booked this long awaited for holiday it felt perfect and so deserved. So why, when I thought about writing about the holiday on Facebook or on a blog, did I feel so guilty? Somehow, it just felt wrong that we are here, and the amazing caregivers are not.

I will consider this as we go into our last week of holidays.

We are thankful for Kim who is watching over the office while we are gone.  As this year comes to a close, in just an hour here in Thailand, I wish you well. I give thanks for the opportunity to be a hospice palliative care nurse/educator. I give thanks for the incredible people who teach me, the dying, the caregivers, educators, and colleagues. Happy 2015… may we learn and grow together!

Warm regards from  Thailand,

Kath

 

 

 

Refuel… pull out the picnic blanket and enjoy some nature

Illustration by Joanne Thomson for the new text, "Integrating a Palliative Approach: An Essential Resource for Personal Support Workers" Coming in October 2014

Illustration by Joanne Thomson for the new text, “Integrating a Palliative Approach: An Essential Resource for Personal Support Workers” Coming in October 2014

It is normal that caring for the dying will touch you and change you. As Rachel Naomi Remen says,

The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet. Kitchen Table Wisdom, page 52.

Self-care is important to maintaining health for all caregivers, and is especially important for those who care for the dying. There are consequences, both positive and negative, to providing palliative care. For example, being with people during their dying process may enhance your appreciation of simple things, increase your empathy and strengthen your appreciation for people facing the challenges of dying. These benefits not only increase your capacity to provide care, but they may inspire you to face your own challenges with a new strength and determination.

On the negative side, there may be times when the work and the sorrow you witness leave you grieving, sad and feeling exhausted. You may find yourself grieving the person’s losses as though they are your own family. You may feel guilty that you are mobile while they are immobile, and living while they are dying. These may be negative effects of caring for the dying.

Francoise Mathieu, Compassion Fatigue Specialist, organized a wonderful conference, “CARE4U” in Kingston earlier this month.I was thrilled to be able to attend. A number of excellent speaker, including Dr. David Posen, who spoke on “Stress, work-life balance, and burnout – under the microscope”.  Sylvie Dagenais-Douville – AKA the “Laughter Yoga lady” spoke of course on laughter.  Francoise provided sessions where you could “learn, connect or refuel” building on the idea that it is those three things that most help you to fight compassion fatigue.

Refuel

Refuel sounds easy, but it is interesting to me, after months of writing, that it is harder than it sounds. I turned 57 this year. And was thrilled to announce “57 born in 57!” It sounds rather magical to me. SO, my goal for the year is to enjoy 57 fabulous fun refueling activities… and to put aside 57 minutes a day to refuel. Please feel free to follow up with me!

Not being the best at putting aside this time, or being the expert on self care… I invited Francoise to contribute to the chapter on self care in the next text…. written specifically for Personal Support Workers. (To be launched in October…. )

Francoise suggests that you need to choose strategies that are meaningful to you and provide you with energy. The strategies need to be scheduled into your life regularly enough to keep you fueled up. The important part of refueling is to make the effort even though sometimes you do not feel you have time or energy. In fact, it is when you do not feel you have time or energy that these strategies are most important to your well being. Prioritize and participate. Sometimes it is most helpful to call on your social support network to work together on refueling.

This list below identifies ways to refuel. It is not comprehensive, and does not provide instruction. If an idea interests you, then explore the idea using books, websites and courses to guide you.

Eat food that nourishes you

You are often very busy during the day so it is easy to fall into the pattern of grabbing a quick bite on the fly. Prepare healthy, easy-to-eat nutritious snacks in advance, take them to work and enjoy them throughout the day. Avoid turning to sugar and carbs for a quick fix. (I say this as I dream of my favorite dark chocolate ice-cream!)

Drink water

Drinking water is a bit like having a shower – it cleanses your insides similar to a shower cleansing your outside. Water increases energy, relieves fatigue, helps to cleanse your body of waste and boosts the immune system. Keep a water bottle with you at work. Develop a habit to drink water between clients and at breaks.

Move regularly

Move for at least 30 minutes a day! Have a look at this fabulous fun, quick video to understand the return on investment… the highest return is in the first 30  minutes each day! If you work in isolation you may find it helpful to meet with someone else to exercise. If you work in a group, you may have a need to exercise on your own. If you provide heavy physical care, attend a fitness class to strengthen the muscles that you are using regularly at work, or get a group together to hire a personal trainer to provide you with an exercise regime that will prevent injuries.

Sleep well

Sleep well and sleep long enough. Integrate “sleep hygiene” habits in the hour/s before you go to bed: go for a walk, have a warm bath, pray or meditate, read a soothing book, listen to calming music, shut down back lit screens at least an hour before bed. If you work night shifts, or have difficulty sleeping, research additional strategies to help you get the best sleep possible.

Be in nature

Being in nature and even seeing nature, (including trees and green space) helps to reduce stress and improve health.

The pack is on my back…. I breathe the fresh air… walk the first steps of the trail… and already life is better.

I sit by the ocean, the waves lapping at the shore… I sense … I am energized.

Stretch

Stretching can increase flexibility, range of motion, circulation and energy level. Stretching can reduce stress, muscle tension and lower back pain. Learn to stretch and then take your stretching to work!

Laugh

One of my favorite songs is from Mary Poppins. “I love to laugh, long and loud and clear, I love to laugh…… it’s getting worse every year!” What a fabulous song! I do love to laugh! The relatively new field of ‘laughter yoga’ helps people obtain the benefits of laughter through laughter exercises. What might start as fake laughter soon becomes real laughter. Years ago I read that ‘laughter is internal jogging’ and I am sure that this is one form of exercise that I can get hooked on! Sylvie led the entire group in a wonderful session of laughter yoga and I am convinced!

It was a great two day conference. I came away refreshed, inspired, and having learned a bit more about ways to take care.

Thanks Francoise!

PS It may be possible to get Francoise to come to Vancouver or Victoria to do a workshop… if you are interested, email me… Kath