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.

Follow JB Music Therapy on Facebook, Twitter, and YouTube.

Press Release – Death, Dying, and Grief: Avenues for Healthy Communication Help Children and Adults

BOOTHBAY HARBOR, Maine, June 29, 2015 /PRNewswire/ — Blazing new paths in the field of thanatology, Lynne Tobin, Andrea Warnick, and Katherine Murray spearhead distinctive programs for people to think, learn, and communicate about death, dying, and bereavement.

Lynne Tobin, a licensed professional counselor (LPC), works extensively with individuals and families during end of life journeys.

Tobin also facilitates group discussions on subjects as diverse as writing advanced directives, near death experiences, and views on life after death. “Death Cafe” discussions are held in local settings—a small restaurant, tearoom, or coffee shop—because she noticed “Participants feel more comfortable asking questions and sharing ideas in a casual environment.”

Tobin, in private practice in Boothbay Harbor, Maine, offers individual and group counseling, and specializes in anxiety and depression.  She advocates for patient-directed care in the state legislature and holds two masters’ degrees, one in education and one in counseling, and also studied thanatology at Hood College.

Andrea Warnick specializes in helping children who are experiencing the serious illness, dying, or death of someone they care about.

As an advocate for providing well-informed support for grieving children, Warnick counsels individuals, families, groups, and professionals. Her counseling and educational offerings include in person, webinars, and phone- and Skype-based counseling, making her accessible to clients throughout Canada, the U.S., and beyond.

Warnick is sought out by organizations for her dynamic presentation style and innate ability to help audiences feel at ease while exploring intensely difficult topics related to dying, death, and grief. Based in Toronto, Warnick received her master’s degree in thanatology from Hood College, adding to her credentials as a registered nurse.

Katherine Murray’s company, Life and Death Matters, opens channels of communication in palliative care and hospice for patients, families, caregivers, and professionals.

Murray’s life-long commitment to transforming palliative care through education and enlightenment is palpable in her prolific speaking, writing, and teaching.

Murray is a certified hospice palliative care nurse and a fellow in thanatology with a master’s degree in thanatology from Hood College; she recently released to the U.S. market the textbook and workbook: Essentials in Palliative Care: A Resource for Nursing Assistants. Murray’s blend of leadership, clinical and psycho-social expertise, along with her sense of humor, makes her a popular guest speaker for local, national, and international conferences.

Lynne Tobin, Andrea Warnick, and Katherine Murray are committed to action as champions of healthy communication in the field of thanatology. They are rewriting death education and blazing trails as death-doulas, blending compassion, insight, and professional expertise, to help people understand death—as a normal part of life.

 

Contact Lynne Tobin: Email; Facebook: Lynne Tobin LPC.

Contact Andrea Warnick: Website: andreawarnick.com; Facebook: Andrea Warnick Consulting.

Contact Katherine Murray: Email; Phone (Canada): (250) 652-6781 and toll free (Canada): (888) 788-6781; website:lifeanddeathmatters.ca. Books from Life and Death Matters are available on Amazon.com.

MEDIA CONTACT:
Lynne Tobin
(860) 966-3294
Email

Reflections on the 4th International Public Health & Palliative Care Conference 2015

In May 2015 I attended the Public Health and Palliative Care conference in Bristol, England. There were approximately 180 people who attended from around the globe.

There were many inspiring and innovative ideas for death education and death literacy, and many messages about compassionate communities providing care for the dying.

I found the following thoughts quite profound:

1. “Do not leave death to the experts.” – Allan Kellehear
2. “Remember that death is a social event with a medical component, not a medical event with a social component. The larger part of dying happens outside of the institution and professional care”. – Allan Kellehear
3. “End of Life Care does not begin with palliative care it begins with community. – Julian Abel
4. “Expand the team to include community as REAL partners, not just targets of care.” – Allan Kellehear
5. “Help people identify their “ring of confidence” including their friends, family and paid resources.”
6. “Put family cares/caregivers in the drivers seat, and find out what they want/need.” – Julia Verne

quote - death is a social event

Improve death literacy

One of the key messages of the Public Health Palliative Care conference was to improve death literacy. Interesting choice of words. What might that mean?

According to dictionary.com literacy can be defined as:

  1. the quality or state of being literate, especially the ability to read and write.
  2. possession of education: to question someone’s literacy.
  3. a person’s knowledge of a particular subject or field: to acquire computer literacy; improving your financial literacy.

To be literate means to be able to read and write, having or showing knowledge of literature, writing, etc. and having knowledge or skill in a specified field. Death literacy, then, may mean to be able to read and write about death, having knowledge of literature and writing about death, and having knowledge or skills related to death. I would suggest that death literacy is not only about being able to read and write about death and know about death, but also to be able to communicate about death.

In an active sense, being able to read or write does not help anyone if they are not willing to do anything with it, so I suggest that death literacy is the willingness to learn and communicate about dying and death. This is definitely a good goal for all of us!

Around the world groups are coming together to help people talk, write, create and understand more about death.

One of the projects I learned about while in England is The GroundSwell Project out of Australia. Their mission is to “develop innovative arts and health programs that create cultural change about death and dying, while championing others to do the same.” They value “creativity and innovation from unexpected places; intergenerational learning and sharing that enriches lives; collaboration and partnership that grows everyone; health promotion and community development for profound change.” Kerrie Noonan and her team are creative, they work outside the box, they are artistic, and they manage to reach a group of people that is not currently reached by hospice palliative care. Have a look at their website or follow them on Facebook and Twitter if you want to see some innovative ways to involve community. They celebrate a “Dying to Know Day” each August. I am thinking that I will find a small project to do in my circle in Victoria BC while they expand their community in Australia. If you want to join them also, get creative.

In previous blogs I have mentioned the “Death Cafe” as a place to meet and explore topics about death. One example of events where people gather to talk about death is sponsored by Hospice Northwest (Ontario, Canada). They have a wonderful event titled “Die-alogues”. Kathy Kortes-Miller, one of Canada’s leading death educators, introduced us to “die-alogues”. She tells the story of thinking that maybe only family or friends would attend, and her surprise when dozens of people turned up! Kathy writes, “Our standing room only events demonstrate that our community wants to engage and be active participants in learning about dying and death and supporting one another. ”

Do not leave death to the experts.

I am intrigued by this statement especially as people without professional degrees comes forward to care for the dying and bereaved. What can we learn from a fresh, “un-academic” perspective? What is the role of those without formal degrees in caring for the dying?  How can we learn to stand back and give space for emerging “death doulas” and “death midwives”,  etc. to participate? What do we need to learn about this? Can we practice a bit of “professional humility” as we learn to work outside of the “inter professional team”?

Expand the team to include community as REAL partners, not just targets of care.

I was impressed by the Murray Hall Community Trust in Dudley, England. This group formed in the early 90’s to help communities struggling in the area. Their mandate includes health and social care. Funding supports them to address a variety of needs – from child care to palliative and end of life care.

They designed services by listening to local people, and heard what the people wanted. They worked with domicillary care, debt counselling, etc.. They listened to the stories of the people, and helped them to develop solutions . A few years ago they heard Professor Allan Kellehear speak about compassionate communities and they said “This is what we do!”  A group of us who attended the conference were fortunate to tour their sites, and hear about their programs and learn from their experience.

“Remember that death is a social event with a medical component, not a medical event with a social component. The larger part of dying happens outside of the institution and professional care.” – Allen Kellehear

As a health care professional, I have thought – too often – that our team was a significant part of the dying person and family’s life.

In reality, most of the person’s living and dying does not include us, and should not include us. Hopefully when we are needed, we are there, and able to help, at pivotal times. During some periods of time, if we do our jobs really well, and if the disease progression is not complex and difficult, then we may not be part of their lives very long or very often.

“End of Life Care does not begin with palliative care it begins with community.” – Jules Verne

In her last weeks my mother kept repeating, ‘It takes a village to raise a child,… it takes a…. to care for the dying.” By the time she died she pulled her thoughts together, “It takes a village to raise a child and it takes a community to care for the dying”.  How can we help community to provide care with confidence?

Dr Deb Braithwaite routinely says, “This is not rocket science”.  We need to share with community that which we know, and  we need to make it simple not complex. And for those times when life and death are complex, we need to provide support and access to services.

Put family cares/caregivers in the driver seat, and find out what they want/need.

Help people identify their “ring of confidence” including their friends, family and paid resources. Family caregivers provide a huge service to those they care for, and they provide a huge service to our country. The financial value of their services, the unpaid hours of caregiving are immeasurable. There is research looking at the needs of the family caregivers. We need to listen and learn and respond.

 

If you’re interested in seeing some of the concurrent sessions, plenaries and conversations from the conference, have a wander through the Public Health Palliative Care Conference Youtube channel.

Did you attend #PHPC2015? Or do you have thoughts about my highlights from the conference? Feel free to add your links and suggestions to those that are here!

Three Big Reasons to Talk Now About Dying

[written by guest blogger Ann-Marie Gilbert]

3 Big Reasons to Talk Now About Dying

A few weeks ago the CBC dedicated an hour of their news show “The Current” to talking about end of life care. On the heels of the news coverage surrounding Brittany Maynard’s right to die, it seems appropriate to talk about death, dying, quality of life and dying with dignity. Are Canadians talking about their preferences for death and dying?  Dr. John You1  tells us that when Canadians are asked about their preferences, they generally prefer a care plan that does not include medical interventions.

“We actually went straight to pretty sick patients in Canadian hospitals as well as their family members and we asked them directly what their preferences would be for the kind of treatment they might want if they were to become really sick to the point of being life threatening. What they told us was they generally preferred a care plan that didn’t include resuscitation and other heroic measures and the majority wanted care that was focused on quality of life and comfort.” Dr. John You.

If you are one of those people that doesn’t want interventions, then this is the first reason for talking about your preferences.

Many of us will die after years of slow decline. What if you can no longer speak for yourself? That’s the second big reason.

Fortunately for Canadians there is The Speak Up Campaign from CHPCA. It provides a downloadable workbook to guide people through decision making for their own care at end of life care, death and dying. It encourages people to discuss these decisions and document their preferences, because there may come a time when we can no longer speak on our own behalf.

I’ll tell you a story of the Speak Up Workbook. My family and I used these resources a little over a year ago at Thanksgiving. We sat in a sunny dining room after breakfast, with our coffee cup and worked through the questions. Each of us wrote in our own workbook. We talked about our preferences for care, for Alternate Decision Makers and Advance Care Plans. Even funeral planning. Because no one was imminently dying the conversation was sort-of easy – it was hypothetical, calm, sometimes absurd and sometimes comical. I thought that was ok though, because these were tough topics to talk about, especially with your parents.

I was surprised by some of the answers others talked about. Whew it was a good thing we had talked together because there wasn’t any way I would have anticipated some of their choices!

It is now a year and a few months since we completed the Speak Up workbook together. Declining health in my parents prevents us from having this type of meaningful conversation now. That’s the third big reason to talk now about dying. I find comfort in knowing there is an Advance Care Plan in place to guide decision making. We know what they want.

If you are with family this holiday season or in the new year, consider taking time to talk about your preferences for death and dying with each other. Have a look at the Speak Up Workbook. Consider planning time to discuss it and work on it together.

It will be a priceless gift for you and for your family.

 

1 Associate Professor at McMaster University’s Michael G. DeGroote School of Medicine