Giving comfort, meaning and focus to a life can bring solace to a family’s funeral service and provide a voice for the dying. We meet three inspirational professionals spending final days with people on the cusp of life and death.
Many people think about the music they would like played at their funeral, but few go on to write and record a song that celebrates their life as a legacy for their loved ones. This is what Tom Crook encourages patients with terminal illnesses to do at Sobell House Hospice in Oxfordshire, through his work as a music therapist.
Music therapy is a relatively young profession, but it is increasingly used in fields such as education and healthcare to support the physical, mental, emotional and spiritual wellbeing of everyone from young children to people at the end of their life.
Tom explained the universal nature of music: “We are all musical beings; we respond to music and it can evoke emotional memories. The impact of a serious illness can be overwhelming and some people find it difficult to talk about, but music is another way of exploring those feelings. In this musical relationship they can put these thoughts, feelings and worries into a song and tell their loved ones how they feel, as well as leave some sort of legacy for them.”
After many years working as a session musician and recording with well-known artists, Tom felt he wanted to use his music to help people and was drawn to musical therapy. He studied at the University of the West of England and during the course took a placement at Sobell Hospice, which changed his perceptions of end of life care.
He explained: “I thought a hospice would be a gloomy place, but as soon as I walked through the door my ideas changed and I could see it was all about life and living.”
Music therapy has been used at the NHS-run hospice for the last 30 years and, now a full-time member of staff, Tom uses a wide range of instruments and recording equipment to support patients.
“It’s about using music in a useful and helpful way. Sometimes there aren’t the words to talk about death and dying, or psychological issues, and music and song can bridge that. If people have an interest in music then that helps me build a therapeutic relationship with them – music is the conduit to the therapy.”
Although it’s about music, Tom’s therapy always starts with conversation.
“In this psychological setting we could discuss many different things such as a life review,” he said.
“We talk about existential issues, fears around their prognosis or perhaps look back and talk about difficulties they experienced in the past. It’s all client-led and I facilitate the process by working with the patient to express their thoughts, feelings or insights in a musical form, often guiding patients into writing songs, which is very productive and interesting.
“I recently worked with a 90-year-old gentleman who lived in rural Oxfordshire all his life, working on farms. In his reflections he would talk about nature and changes in the weather, and through these stories a song developed. He used the seasons as a metaphor for his life and the outline of his story, but what he was really doing was a strong piece of life review work. He is saying, ‘This is what I did, I was here, remember me’ – and a song is a good way to achieve that.”
The therapy process allows the patient an insight into the things that matter to them in their lives, which, in turn, contributes to their confidence, self-esteem and relative wellbeing, and also gives them a sense of agency.
Tom explained: “There is a great deal of loss associated with major illness, as many people cannot do the things that have often given them a sense of purpose and enjoyment in the past – whether that’s working, driving or playing sport.
“The music and songwriting process gives them something they can do and achieve. It gives them some control over their life in a situation that seems out of control because of their illness.”
As well as being able to review their life and look back on important moments, the therapy also has the potential to be an important legacy for the patient.
Tom added: “I’ve been to funerals where the recording of the songs we’ve created has been played. It gives the family something to remember their loved one by and also gives them an insight into how they felt as they came towards the end of their lives.”
There are other ways Tom can help people, such as the recording work he is doing with a man who has a terminal illness and wants to record bedtime stories for his young son to listen to when he is gone. Tom has been helping him with the recording and has created a music backing track and sound effects to make it fun for his child.
While music therapy creates a welcome distraction from a patient’s illness, Tom says the involvement with music also has powerful neurological and analgesic benefits for the person.
Tom explained: “It’s well-known that when we sing together or listen to music brain releases serotonin, dopamine and endorphins – ‘happy chemicals’ that lift mood and promote happiness. That’s why a mother will instinctively sing to a baby as part of the bonding process.
“Music also has an analgesic effect and I’ve worked with patients whose PRN (pro re nata or ‘when required’ dose) morphine use has reduced while they were undergoing music therapy.
“I’m lucky in my role at the hospice as I can start my relationship with a patient from a more positive place compared to a doctor or nurse, who will be talking about symptoms and the diagnosis. My first question could simply be ‘What was the first song you and your wife danced to at your wedding?’. That means I can build a therapeutic relationship around something as simple as an Elvis Presley song.”
Songs of Solace
Singing is a powerful way to connect with people, as Kate Munger found in 1990 when she was comforting her friend Larry as he lay in a coma, dying of HIV/AIDS. She admitted she was terrified to sit by his bedside, so she did what she always did when she was afraid: she sang a song to give her courage.
She sang for two and a half hours and it gave her the inspiration to create the Threshold Choir to bring comfort to those at the threshold of life and death.
Since 1990, the Threshold Choir has spread around the world to more than 250 communities, including seven ‘chapters’ in the UK.
Commenting about that experience on the Threshold Choir website, Kate said: “It comforted me, which comforted him. I felt as if I had given generously of my essence to my dear friend while I sang to him. I also found that I felt deeply comforted myself, which in turn was comforting to him.”
This story inspired Natacha Ledwidge, a singer, artist and OneSpirit Minister based in London, to start her own Threshold Choir in the city four years ago. She and her colleagues use singing to bring rest, comfort and joy to people near death, as well as celebrate other significant threshold events in people’s lives such as births and marriages.
She said: “When I heard about the choir I thought ‘this sounds amazing’, because I wanted to find a way of being able to use the power of music to help people and be of service.”
Rather than singing modern popular songs, the choir specialises in simple meditative melodies, as Natacha explained: “I’ve always enjoyed singing meditative songs such as the French Taizé style of simple repetitive chants in two or three-part harmony or rounds, which is designed to take you to a place of deep connection and bliss. This is similar to singing mantras from the East, which also brings you into a place of balance, harmony and love. These styles of singing are deeply healing so, whether you are doing it from a faith or not, these types of songs take you to a place of deep peace and connection.”
Natacha and her colleagues can also draw on a large repertoire of songs specifically written for threshold singing by other choirs around the world, which are available on the Threshold Choir website.
The Heart Of London Threshold Choir practise twice a month and will often sing in groups of two to four people at the bedsides of people who are very sick, as well as those who are close to death, either at the Marie Curie Hospice in Hampstead or at their homes.
Natacha said: “For example, we visited a lady at her home where her family had gathered in the living room. Although she was very ill, she greeted us and said she was really looking forward to having us and even insisted that she put her hearing aid in before we sang.
“We tell people that we are not singing as a performance – we are here to sing to accompany you and it’s our greatest honour if you relax enough to fall asleep. Most of our songs are very short, so their repetition is conducive to rest and comfort. And that’s just what this woman did – you could see her going in and out of sleep and looking very relaxed.
“We sang for 20 minutes and the family was there receiving the songs also. For some it brought tears and I also believe a strong sense of connection to each other. I am comforted by the thought that when she died two days later, the lady managed to die in relative peace and that maybe we played a part in helping her let go.”
After months of treatment at Great Ormond Street Hospital, the family of a dying child asked if they could take their son outside to breathe fresh air before he passed away. Senior Chaplain Dorothy Moore Brooks and the multi-disciplinary team at the London hospital helped to arrange for the family to have some private time on the hospital’s roof garden so they could have their wish, and create a memory they would have of their child for the rest of their life.
Since its formation in 1852, Great Ormond Street Hospital has been dedicated to finding new and better ways to treat childhood illnesses and today has an international reputation for its medical research and pioneering procedures. Working alongside the team of surgeons, doctors, nurses, psychologists and family therapists is the hospital’s Chaplaincy and Spiritual Care Service, which provides support for children and families.
Dorothy is an ordained Anglican Minister and Deputy Leader of the Chaplaincy and Spiritual Care Service, which includes six full-time Chaplains and six volunteers from different faiths. They visit the wards talking with children and families on a daily basis to see if they can be of assistance, either in a spiritual context or by listening to people’s concerns.
Dorothy said: “Great Ormond Street Hospital’s motto is ‘The child first and always’ and that is an important point of reference for any words or religious act we offer. No matter how sick the child is, we never presume that he or she cannot hear or engage with what is happening.
“We’re here for people of all faiths, and also none. We believe that everyone has spiritual needs, whether they have a religious expression of that or not.
“Families also need support when they have a very sick or dying child as they are trying to deal with perhaps the toughest experience of their lives. Our role is simply to walk alongside them during their journey, to listen to them and help them sometimes make sense of it.”
The Chaplaincy team is an integral part of the hospital’s service. As it is included in the weekly multi-disciplinary ward meetings, where health professionals and psychosocial teams review the needs of children and families, those in need can be referred to Dorothy and her colleagues.
In addition to the support of the Chaplaincy team, the hospital’s ornate Victorian chapel is also an important place of solace for families, as Dorothy explained: “The chapel is a really wonderful place of peace and calm – it’s a real oasis for our families. People turn up there and say: ‘Can I talk to somebody?’ or ‘Can you come and visit us on the ward?’ and we are delighted to help.”
In the case of end-of-life situations the team will arrange a quiet area on the ward, like a private room or the bereavement suite on the intensive care ward, for the family to be with their child for either religious rituals or just to be alone with them.
She said: “These are places where the family can spend time with their child and make memories. If a baby has been born premature it’s sometimes the first time they have been able to hold their child, and we can organise for our hospital colleagues to take photographs or make mementos by taking hand and footprints.
“These may appear like small things but in fact they have a profound impact on the families.”
The Chaplaincy team continues to support families after the death of a child, conducting funerals in the chapel, and there is a book of remembrance for every child who has died at the hospital, which is hugely popular with families.
Dorothy added: “Seeing their precious child’s name in that book certainly meets their needs. And once a year, we have an annual memorial service for all the families who have lost a child and we get about 400 people at that service. There are families who have been coming to this event for the past 20 years, so it is a valuable way to remember their children.”Tags: care, choir, Dorothy Moore Brooks, dying, Great Ormond Street, hospice, hospital, music, Natacha Ledwidge, therapy, Threshold, Tom Crook