“You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” – Patch Adams
Music therapists often work in palliative care contexts. They are usually part of a team of professionals whose aim is to improve the quality of life of patients facing serious illnesses and end-of-life situations.
What is palliative care?
According to the World Health Organization, it is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
Palliative care is about improving the quality of life. It should not be something scary. Music therapists improve the quality of life of patients through music experiences. These can cover all the “groups” of experiences, which include: recreative, improvisational, compositional, and receptive experiences. Music therapy helps process deep psychological issues that are associated with dealing with a life-threatening disease. It can also help physically with the pain that might be present.
Music Therapy Stories in Palliative Care
Sam’s Fans funds a music therapy position for the Nationwide Children’s Hospital’ (NCH) Hospice and Palliative Care team. Jessica Bogacik, the music therapist at NCH, demonstrates the power of music therapy in palliative care in four videos we released recently. Perhaps we can illustrate best how music therapy helps in this context through the four stories of Ben, Alex, Natasha, and Vanora:
Jessica started working with Ben when he went home after facing complications from a serious illness. One only has to see his smile in the video below to realize that Ben is actually having a good time in music therapy! And even though Ben is nonverbal, his mom relates how in music therapy he tries to sing. That is a good indication that music therapy is having an effect on him.
As Jessica says in the video, “When I start singing, when I take out my guitar, he lights up!” Ben received music therapy in a palliative care context, which allowed him to progress in his overall quality of life.
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Alex faces a rare disease called SETD5. It is associated with intellectual disability and other conditions. In Alex’s case, his mom asked for music therapy when they got started with palliative care. Oh, joy, the benefits of people knowing about music therapy is that they demand it and hospitals and institutions start to listen!
While music therapy is a time of joy for Alex, it has become, in words of his mom, “so much more than that.” Jessica has actually been able to help Alex with anxiety issues that he had, for example. She wrote a song and talked to Alex about what his fears are. Jessica relates how “this song, he was able to take it with him to school, and whenever he started feeling that, his aid knew, ‘let’s sing your song.’” He now turns to music whenever he is stressed out or down. It’s easy to see the impact music therapy has had on Alex!
You can actually hear from Natasha’s own words the importance that music therapy had in her palliative care journey. She wrote songs about friends who passed away for example.
“It has really helped me deal with the pain and the thought of that. I don’t know how to explain it, but it just makes me feel better.”
Because of her condition she has “known pain her entire life.” Music therapy for her helped deeply in a physical, emotional, and psychological way. It was palliative in the truest sense of the word, helping to ease the symptoms of her condition and giving her an outlet to deal with the psychological implications as well. When Jessica wrote a song with Natasha about a friend who passed away from the same condition as her, it gave Jessica an opportunity to talk about life expectancy and her own condition.
“I don’t know what would happen if Jessica wasn’t here.”
Vanora is missing a small part of her brain. The importance of music therapy for her comes from the words of her mom. Vanora’s mom was suspicious about music therapy at first. Luckily, she changed her mind after hearing and feeling her daughter “waking up” thanks to Jessica’s work.
“The music reached her and helped draw her out of her disease that keeps her closed inside of herself.” -Jessica
Vanora’s story is a good example of how palliative care is also about the family of the patient. Vanora’s mom got to see and hear a deeper part of her daughter thanks to how music therapy drew Vanora out.
Unfortunately, not all patients and families facing serious illnesses are open to palliative care.
“Hospice and palliative care are taboo in a lot of circumstances. People don’t want to think about their child’s life ending and when they hear the word palliative care and hospice, that’s the first thing they think of. But our goal in palliative care is to change that mindset. We’re not here for death. We’re here for life. You know, we’re here to improve the life of the family and make sure that it’s the best it can be for as long as it can be.”
To learn more about what Jessica does, check out this interview we had with her:
We hope that by sharing these stories, you may realize that palliative care doesn’t have to be something scary. It can actually be the least scary part in a fight against a serious illness. Would you consider support music therapy programs that serve seriously ill children like Ben, Alex, Natasha, and Vanora, making a donation of $10?
Thanks for reading and sharing!