Origin Story

Note: This is a guest post by Jennifer Swanson, taking part in our Origins series about how music therapists working in end-of-life care trace their connection to this work. For more information about Jennifer, please refer to the “Contributors” tab. If you are interested in contributing a piece to the Origins series, please read more from our Call for Submissions.

How did I, the woman with initial aspirations to use music therapy to change the world by bringing together people in battling nations, or empowering women in Middle Eastern countries, or using music as joining language between different cultures, end up working with people at the very end of life?

My initial interest in end of life work stemmed from a graduate school class on the topic. I then entered the field thinking that I would see a few patients and family members each day, engage them in weekly music interventions that would be akin to individual or group psychotherapy, be a co-pilot or passenger with them on the ride towards the very end of life, and somehow help guide all my patients and family members towards finding closure and acceptance. I also had other more personal expectations for hospice work. These include witnessing absolute strength in the face of impending loss of life, understanding how spirituality and religion can actually be positive, and maybe facing my own fears related to death, dying, and loss of loved ones.

I work for a pretty large hospice company, and have been disheartened about the actual therapy work I am able to do with a very large caseload and territory, among other issues. However, the above listed personal expectations for the work continue to play out regularly.

As Meghan said in a previous entry, “we all have needs that we bring to the work and that we hope to heal, often at an unconscious level.” Below is a description of mine, most of which were not so clear when I first started in hospice.

How do people cope with terminal illness and death, some of the most difficult obstacles in life? After a childhood that felt riddled with anxiety and drama over not much, as an adult I wanted to see that people can navigate through incredible difficulty while retaining dignity, strength in character, and maybe even optimism. During my time in hospice so far, I have seen a broad spectrum of coping strategies. The people that really stay with me however, are the resilient heroines: the spouse who visited her husband with Alzheimer’s in the nursing home 6 days a week for 7 years; the patient who despite declining health retained pride and dignity in the memories and associated wisdom she constantly shared; the 102 year old patient who has watched everyone die around her but approaches everyday as a miracle, and is still excited to form new relationships; the spouse whose faith in God gave her strength when her too young husband was diagnosed and then dead within 3 months… I could go on.

Can religion and spirituality be more purely positive at the end of life? I grew up in a mostly Atheist home where religion was viewed negatively because of the separation and conflict it helped create within my extended family. Spirituality as something separate from religion was never talked about. However, as I was making the decision to work in hospice I was also beginning to understand my own spirituality, which largely lies in the transcendent powers of music. There is no denying that end of life care has a pretty consistent spiritual element, whether that be a patient or family member in spiritual crisis, a patient who dies exactly with the words, “take me home country roads,” or myself forgoing paperwork on a whim and then arriving at a patient’s home 20 minutes before he takes his last breath. I so often witness moments that are larger than us all and can’t be explained. I can no longer deny that something spiritual exists among us, and perhaps religion is just an attempt to organize that. And at the end of life it sure doesn’t hurt to have religion.

Finally, are death and loss really so terrifying? So far, lucky for me, death and loss have been fairly distant from my life on a personal level. However, we all know that death, dying, loss, and illness will be inevitable within all of our lives. Perhaps I wanted to “learn” about it before I had to actually deal with it. Or maybe I thought I could get over my fears. (I haven’t.) I definitely wanted to be closer to it, as our culture tends to throw death and dying to the wayside, which ultimately has negatively impacted how we treat humans who are terminally ill and elderly. Hospice care has allowed me to be closer to death than I ever thought I wanted to be, and has shaped my view of dying into a very important stage of living. I now more fully embrace my mortality as well as my fears surrounding it, and the above mentioned “heroines” have provided great examples for coping with loss.

I don’t think that I will spend my entire career as a hospice music therapist. I know that the lessons I have learned and the amazing people I have been privileged to be with will stay with me for a long time to come, and will influence how my career takes shape. I also have a much deeper understanding of the preciousness of life, and know that each moment should be noticed, appreciated, and filled with gratitude. Rather than changing the world on a large scale, I find myself companioning patients and families in changing, or embracing, mere moments; and this certainly has changed me.

5 thoughts on “Origin Story”

  1. As a non-religious music therapist with a passion for hospice, I really connected with this story. I was raised in a religious home and chose a different path for myself as I got older. It has been wonderful to see how my patients (of all faiths or lack thereof) have reconciled themselves to the end of life. I would love to get some discussion going about how we approach the issue of counter transference with patient’s religion/spirituality. I personally tend to try to not bring my beliefs with me when I walk in the door to see a patient, because ultimately, I am there to explore and support my patient’s beliefs if they so desire. I don’t think my beliefs are relevant to those moments. What thoughts do others have on this issue?

    1. Thanks for the comment. I’m glad you can relate. Sometimes I think that my lack of belief system is helpful for me in being more fully present for patients and their families. I don’t have any strong beliefs that I need to set aside when I walk in, and am genuinely interested in whatever belief system, lack thereof, or spiritual crisis may exist. The countertransference comes up for me when a patient/family assumes that I share their belief system, or if I find something truly offensive (for example I have had a few blatantly homophobic patents, often due to their religious beliefs). It would be really interesting to write about countertransference related to spirituality. Maybe even a whole series from hospice MT’s with different spiritual backgrounds…..!

      1. Hi, Jenny!

        Yes, I totally agree that a lack of a specific belief system can be a great asset to being open and present with patients and families.

        I found myself “mmmhmm”-ing and nodding when you mentioned the countertransference that tends to occur when patients assume you share their belief system. Out of curiosity, how have you handled that situation when it arises? For example, if a patient requests a hymn and I know it (because that’s my job!) the patient tends to assume I know that hymn because it is a part of MY spirituality, too. I tend to gently evade questions about my beliefs while reflecting back to the patient to keep them talking about their beliefs.

        I can also relate to encountering homophobia (and occasionally racism) among older adults in hospice and while I am able to be neutrally validating (if that makes sense) it makes me DEEPLY uncomfortable and I find I really do need to do more processing after those visits.

        An added layer of difficulty seems to stem from being the seemingly only non-religious person working in hospice, some days. It’s one thing to have patients project their belief systems onto you, but I find it to be a different challenge entirely when your boss and co-workers do the same thing.

        So all this to say, yes, please, let’s get some more discussion going!

  2. There is so much to talk about here!

    I approach the patient who assumes or asks about my beliefs/religion very similarly to you. I don’t usually disclose anything about my beliefs (or lack thereof), unless it would be beneficial to the patient/family. I haven’t disclosed much though, because it is still too raw of a topic for me personally. Perhaps someone with more set beliefs would be more comfortable self-disclosing, if and only if, it would benefit the patient. (Another discussion point!)

    I am similarly uncomfortable when religious based prejudices are disclosed. I have to dig deep to find empathy for the patient (by looking at their background/lack of education/whatever), and then also need to be sure to process it afterwards.

    I know what you mean about other hospice workers having religion and assuming you do too. I have encountered that, and have had to deal with my own projections based on this. At the same time though, I am privileged to work with a spiritual care coordinator who is non-denominational, and exudes spirituality in a way that I can actually relate to! When I interviewed for the job I met him, and immediately felt very comfortable working for that office. I have felt uncomfortable in other hospice environments where everyone’s belief in God seems to help them process the work. It can feel very isolating being the only one not having that.

  3. What an interesting discussion. I wanted to chime in… I am also not a religious person. When people assume that I have their same religious beliefs I interpret that as their desire to connect with me. Sometimes I will tell them the basics of my own system of beliefs, in fact I’d say that more often than not I will answer a direct question (like, “Are you Jewish?” or “Do you go to church?”) truthfully. But I will generally follow my answer by saying, “What does that mean to you?” Opening up that space has generally been very productive for me, in that people can start talking about our relationship, what makes them feel connected or not, and what connection means at this time in their life.

    I also find it helpful to think about what religion means symbolically, and why I believe that it is helpful and valuable to people from a psychological perspective. Some of the writings that have informed my perspective on this are Robert Johnson’s book on the shadow and Lionel Corbett’s books on spirituality in psychotherapy and spirituality beyond religion. In general, I find that a psychological mindset is extremely helpful for being with issues of religion and spirituality.

    One other thought: the discomfort of sitting with another person’s bigotry has also been difficult for me. I have landed in a space where I refuse to buy in to the “this person is from a different generation, they get a pass” mentality. I do use my psychological stance to process it when I see it (I know, there’s a bit of a theme here), by looking at how this person projects the parts of themselves that they can’t tolerate onto other people, and thinking about what that means in the context of where they are in their life right now. I don’t scold them — but I also don’t pretend that it’s fine with me. I’ve said things like, “It’s hard to hear you say those kinds of things about people.” Sometimes (not always) this can go to productive discussion places with the patient. I’ve never had it alienate the patient from me or destroy the relationship, although I have decided that it’s okay with me if that happens. Holding my own values with me in a way that is not hidden from the patient (even if that just means allowing a look of concern, disapproval, or discomfort to show on my face) has helped me to feel less victimized by such moments.

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