Bidding farewell with music - Hospice care in the United States
“I like working with people and helping them,” says Emma von Weissenberg, who is accustomed to interacting with terminal patients in hospice care and often also with their family members.
But her first week in this new job was heavy going.
“There was so much emotion involved that it just washed over me like a giant wave. I was living in a new place, my parents had gone home after helping me relocate, I had just started a new job in a new occupation, and people were dying around me. It made me wonder what I’d gotten myself into. Fortunately, I’ve had a really wonderful team, including my mentor and my boss.”
Music therapy is rooted in medical research and uses music as an interaction tool. A music therapist must have a wide range of psychological knowledge and competence.
Depending on the patients’ condition and preferences, von Weissenberg might make music and sing with them or write songs with them. Her work with patients in hospice care has been wide-ranging albeit stressful at times, considering the situation of the patients and the grief of family members that she has had to encounter a lot.
::
How does a Finn end up in a job like this in the USA?
In von Weissenberg’s case, she was exposed to both psychology and music from an early age. Born into a family of psychotherapists, she was encouraged to take up music as a child: she began studying the cello at the Sandels Music School and later developed a deeper appreciation for music and art in the Children’s Chorus of the Finnish National Opera. Later, she embarked on professional voice studies in rhythm music, and in 2018 her academic path led her to one of the most distinguished music schools in the USA, Berklee College of Music in Boston.
“At Berklee, I had to select a major subject pretty quickly, and there was very limited time for free musical growth, finding your own voice and relaxed voice studies.”
Although von Weissenberg had always enjoyed singing and performing, Berklee provided a reality check. The everyday life and working conditions of a performing musician did not seem like a feasible option. She began to consider calming down her environment for creating and performing music, so as to leave space for her own creativity. She enrolled in a music therapy course, where she immediately felt at home.
“I appreciate deep reflection and want to grow as a person, and I also want to get close to people. I feel fortunate that I’ve found a profession that fits my interests like a glove, combining my passion for music and singing with person-centered therapy work.”
A music therapist’s degree includes a minor in psychology. Because music therapy often proceeds from a multi-theory basis, whether a psychodynamic or a cognitive-behavioural approach, these studies cover all the key theories. Many graduates seek out further training and studies, but in the USA one can be licensed as a music therapist at the Bachelor level, having completed an internship and having been awarded the relevant certificate (MT-BC).
“When music is your tool, the various schools of therapy blend and blur into your work, with the focus shifting according to the goals and needs of the clients, of course. Physiotherapists work with movement, we work with music.”
Music therapy does not require clients to have previous musical skills, and it can be provided as individual or group therapy.
“Music therapy can be receptive, i.e. based on listening and perhaps reflecting on the lyrics of songs. Active music therapy always involves the clients doing things, such as singing, playing an instrument, writing songs or lyrics and improvising.”
Having completed her studies, von Weissenberg had to complete an internship. She was fortunate to find a position in hospice care in Florida. That opportunity translated smoothly into a career path.
“Most internships do not pay anything, but hospice care fortunately does, and this job came with a scholarship. People aged over 65 are covered by Medicare, and health care organisations are provided with funding for this important work.”
::
::
In the USA, hospice care is not provided in separate dedicated facilities; instead, it is a care concept taken to the patient. For a patient to qualify for this, two physicians must issue a certificate stating that if the patient’s current condition or illness progresses as prognosed, the patient has six months or less to live.
“What I like especially is that the organisation where I worked is extremely holistic, taking the overall psychosocial needs of individuals very well into account. Our physician was the director of the organisation. We also had nurses, social workers specialising in bereavement, music therapists and a Chaplain.”
Once a patient’s status has been confirmed, they are asked whether they want the services of a music therapist. The process is entirely voluntary, and this ensures that the therapists will be working with motivated patients. In the case of a patient with a memory disorder or one who is otherwise cognitively unable to communicate, the question is presented to their family members.
“Generally, everyone wants to have us involved. The only ones who have refused were musicians themselves. I’ve thought about whether I’d want to have music therapy, being a musician and a music therapist myself. The answer is that I don’t know, and I hope I won’t have to think about that for real for some time yet.”
Refusing a voluntary service may also be the only thing that the patients can decide on for themselves. Such a refusal may in fact have a therapeutic effect in itself.
::
In some cases, von Weissenberg has only met her patients once, but in other cases the process has taken as long as a year to complete.
“There is never a way of knowing for sure how long somebody will be in your care and we have had instances when people have been on service for years before passing.”
Music therapists conduct an initial assessment, charting the timeline and establishing a treatment plan based on the unique individual needs and goals of the patient. If a patient’s life expectancy is measured in days, the process is described as a ‘transition journey’, meaning that the active process of dying is already in progress.
Family members may already be in attendance by then, but sometimes therapists find themselves filling in for an absent family. People often imagine that a patient on the threshold of death can no longer hear, but in fact our hearing is one of the last senses to fail. People can hear even if they are unconscious.
“We try to find out what the patient’s favourite music is in order to find music that we can perform or play in the sessions. I may bring a guitar and my iPad with sheet music on it and play quiet, soothing music. If the family is there, we involve them too, and there’s often a lot of weeping. Such an occasion is very emotional, but often also very comforting.”
A music therapist’s job in hospice care includes assisting family members in the bereavement process and in the acceptance of death. Family members may be in denial about the prospective passing of their loved one, and a therapist can help with communication: what the dying patient might like to say to their family members and vice versa.
“Sometimes, if the dying patient is very old and very ill, people may feel relief and comfort in addition to sorrow and loss, but the loss of a young person feels heavy and wrong. I’ve had some tough times, particularly the first time when a patient died in the middle of a song I was playing. That was rough. At a moment like that, you have to be able to bear and process a lot of grief.”
Music therapy can include singing or making music together. The therapist and patient may then discuss and reflect on the lyrics of a song, considering what in them resonates with the present time. There are instruments with which you can make music even if you have never played an instrument in your life. Being able to provide novel experiences, such as bringing a steel tongue drum or an ocean drum, is particularly popular in this regard.
“When patients get to try new things and be creatively free, perhaps for the first time in their lives, it can improve their quality of life by providing a space for laughter, joy, and fun. This also challenges the common misconception that hospice work is always gut-wrenching and tear-filled.”
A common goal in hospice care is to work towards acceptance and peace. Therefore, creating a space for reminiscence and life review is integral.
“Music can be considered a more easily accessible and low-threshold intervention style, as it is a universal language that everyone can relate to on some level.”
With patients who are in distress, are in pain or have an advanced memory disorder, the ISO principle can be applied. The concept consists of entraining or matching patient’s state of mind or mood with the purpose of altering it to a desired state. If the patient is extremely distressed and is panting or screaming, the therapist times the music to the rhythm of the patient’s breathing and matches its emotional content with theirs.
“Then we begin to slow down and calm down the music little by little, the logic being that once the music reflects the patient’s mood, the opposite will also become true, guiding the patient to calm down. You should not stop the music when this is going on, and sessions like this can easily last an hour. In the best case, the patient will eventually fall asleep if that is the goal for the session.”
Patients may also be distracted by playing songs that they enjoy or that calm them down. There are other tricks up von Weissenberg’s sleeve as well, such as finger-painting.
“One thing I particularly enjoy is making music based on the patient’s heartbeats. We use a stethoscope to record the sound of the patient’s heartbeat and then create music around that rhythm on a computer. Sometimes we can record the patient singing or speaking on top of that. We can also have the patient paint one last picture that their family can then frame and keep as a memento.”
::
Can one become accustomed to the ubiquity of death in one’s job? As far as von Weissenberg is concerned, the answer is yes – and it has to be, in order to be able to go on doing the job. Too much numbing is not good, however, and if one’s means of coping with the job is complete detachment, this makes it difficult to maintain an effective presence and to communicate sincerely with family members.
“My hope is that I can maintain an appropriate balance.”
It is important to set and respect one’s own borders. Brooding on each death in one’s personal time makes it impossible to do the job.
“When I recently transferred from hospice care to group work in mental health rehabilitation, I realised just how different hospice care is. You never see the patient getting better and coming to grips with life again. It’s a one-way street and often a very short one. Over time, it can become overwhelming that even if you do your job well, the patient dies.”
There is an interesting phenomenon that von Weissenberg has discussed with her colleagues. Many professionals have noted that once a patient finds closure in the process of dying, it perhaps helps them let go of life. Once their anxious and hyper-stressed mood is dispelled and they can relax, they can more readily embrace a peaceful death.
“This is difficult to evaluate objectively, of course, because we never get to see the opposite. Sometimes I’ve felt that I’ve been able to communicate to a lingering patient through my work that it’s safe and ok to just let go and pass on.”
In the case of one particular patient, von Weissenberg interacted with him for a year and established a close relationship with the patient and with his wife.
“I took it very hard when he died. I even performed at his funeral, and it definitely did not feel like I was just doing my job. I find my work to be valuable and important. Music has helped both the dying patients and their family members to get through the process, and I’ve been able to encourage them to talk about important things together.”
She says that her experiences in hospice care altered her perception of herself and of other people. She is highly appreciative of the immediacy of human interactions in American culture.
“The encounters with patients and their families are something that I’ll never forget.”
Translation: Jaakko Mäntyjärvi
Featured photo: Emma von Weissenberg