The Continuity of Person-Centered Care

IMG_3183I’ve recently had the opportunity of working in both mental health and pediatric medical care. In my transition to adding pediatric medical care to my workload, many people have asked me how I feel about working with a more “difficult” population, meaning children with acute or chronic medical needs or with children who are dying. Although this isn’t a surprising question and I understand why people are asking, it has instead emphasized to me the miseducation and misunderstanding of our mental health system and the population as a whole. In working only part-time at my mental health facility, it has given me an opportunity to step back and be reminded of the challenges this clientele faces every day. Often when you work in the midst of it, you find yourself becoming jaded or detached from their realities as a way to better cope.

In this opportunity of working in both populations, I’m often left with a sense of comparison. This comparison has nothing to do with any one person or the facility itself, but instead the systemic issues that create this disparity.  As you can likely expect, society loves to donate to children. These donations come in time, money, gifts, events, services, and more. Consider the area you live in. How quickly can you think of the name of your local children’s hospital? How quickly can you think of the name of your closest mental health facility? The stigma that mental health faces, whether in children or in adults, prevents society from considering our marginalized members of healthcare. In my time at my previous facility, we struggled to obtain some of the most basic items of human dignity for our patients, many of which are easily donated elsewhere in the community. A number of these items were incorporated into our facility’s budget of course, but some items were deemed less than crucial and were not included. Some of these items were, but were not limited to, clothing, Bibles or other religious texts, books, magazines, board games, recorded music, puzzles, and more. Although none of these items are required for mental health care, they certainly were necessary for basic human dignity. In comparison, the pediatric facility has entire rooms dedicated to donations alone. In addition to donated items, I personally struggled as the music therapist to find one person who was interested and willing to be a volunteer musician at the mental health facility in my entire time of being there. At the pediatric facility, I receive calls weekly from those wanting to come and volunteer for the children.

I don’t say this to devalue any one population’s worth, and by all means, I don’t mean to dismiss any one patient or family’s experience, but I’m not the first person to say that we marginalize and dismiss those with mental health disorders because of stigma and because of a broken system. Recently, I read a special report about homeless men and women who died in our area, and their stories that accompanied their path to homelessness. While reading the article, I began to recognize the people, not because I knew them personally, but because I recognized their stories. I can stand on my soap box and state my opinions left and right about how we care for those in mental health compared to all other areas of healthcare, but I choose instead to challenge myself and my own role as a music therapist.

As I read the article about those who died in homelessness, I wondered about the people who had cared for them at various points in their journey. Some of these men and women had received mental health care, others had received medical care, while others benefitted from the VA. In their time within the healthcare system, did these people meet anyone who showed them patience and kindness? Did anyone stop to listen to their story, asking them, “what has your journey been like”? Did anyone recognize their resiliency?

In thinking about these questions, I’m left with these considerations for music therapy:

  • How does music therapy reflect this person-centered care?
  • What can music therapy do to ensure person-centered care that honors an individual and inspires hope?
  • How does music therapy extend the continuity of care past the direct care each patient is given while they are in your facility?
  • How can music therapy continue to challenge the systemic issues within our healthcare system as whole?

As a music therapist, we have the unique opportunity to support and validate patients despite their history, background, or current situation. It does not matter if our soap box is focused on mental health disparities, or the stigma of intellectual and developmental disabilities, or in the dignity of serving older adults with dementia. We are a person- and family-centered profession, and it is our duty to continuously question how we serve our patients and how that service affects our patients past our time working directly with them. Despite the resources you may have, whether rooms full of donations, or hardly one volunteer, these are the questions we have to continue to ask ourselves. When people ask me how it is that I work with such a difficult population – children who are medically compromised or dying – I remind them that these children are supported by the community. It is the populations who are neglected or ignored that are the most challenging to serve as a member in healthcare.

At the end of the special report on deaths among the homeless, a woman who scatters the ashes of the people who were left unclaimed out to sea was quoted as saying to them, “I’m sure you graced this world with a lot of beautiful things”.

May we be the proponents who inspire those ‘beautiful things’.

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