Advocacy

Patients Are People, Too (And So Are Professionals)

Photo credit:  www.medscape.com
Photo credit: http://www.medscape.com

I can’t shake the memory of the feeling of being utterly out of place.

I felt it in my stomach, in my tongue-tied mouth, and my anxious mind as I vigilantly scanned the room looking for some haven where I could wait inconspicuously for the service to begin.  Trying to appear casual, and just to blend in, I gazed at the photos—all of them, one by one, for as long as possible without giving anyone else reason to take notice of me.  Not that it was difficult to give attention to the display, or that I was only pretending to be interested.  Each photo told of the healthier parts of a life of which I had only known the premature end.  I found it hard to look away.  It can be a comforting thing to continue getting to know a person after they have died.

When I had exhausted all the time I could reasonably spend imagining the real life scenes freeze framed in each image, I hesitatingly moved toward the lavish spread of hors d’ouvres.  The proper course of action was not clear.  Should I eat?  We follow a strict policy of not accepting gifts from patients.  Well aware that I could be taking this to an extreme, I still could not fight the gnawing feeling that it was not right to be fed, nurtured, provided a basic need by a patient’s family.  Yet, how inappropriate and dehumanizing might it be to abstain from taking part in this universal custom of sharing food together?  In this giant banquet hall where so many had gathered to remember a lost life, the usual, built-in boundaries of a therapy session were nowhere to be found.  What to do?!  Feeling lost, I speared a few pieces of cheese with a colored toothpick, slipped a few crackers onto my plate, and desperately pondered my next move.

I quickly decided on my next destination:  the corner in the far, back reaches of the room.  There, perched on the windowsill, I ate my meager snack while watching a slideshow of yet more photographs.  The story told by the photos on the table deepened.  While the slideshow ran on repeat, I grew familiar with pictures of an infant and over and over again watched the infant transform into a child and then a teenager and finally an adult.  It was captivating.  Yet, I could not help but notice that meanwhile, tables all over the room were filling with people who chatted easily with each other, telling stories and just catching up.  I was there, officially, because I had been asked by the family to provide music during the service.  The family had welcomed me personally when I had arrived (and, of course, insisted that I partake of the feast at hand).  Unofficially, however, I had very deeply wanted to be there for my sake.  Yet, I felt like I did not belong at all.  As the noise level in the room increased, I felt more and more awkward in my silence.  Yet, there was no one to talk to.  There was no table at which I could sit without risk of being asked to share information about my relationship with this person, which I was felt ethically bound not to share.

Furthermore, I was realizing more and more the distinction of having known this person as a patient.  To everyone else in this crowded room, a child, a sibling, a cousin, a friend was the center of this event.  Why had I dared to intrude?  I had not known the baby, the kid, the teenager, or the young adult.  I was realizing that I had not even fully known the adult whose life intersected with mine for a brief hour every few weeks over the course of a matter of mere months.  And it made me wonder, what had I really lost?  What had made me feel like there was going to be something here that I needed?

Then something happened that changed the entire experience for me.  The service was already underway, and all eyes were on the podium in the center of the room.  But it wasn’t hard for me, there in the back corner, to see three figures slip through the side door.  I don’t think they even saw me, but they walked directly back to my corner and stood near me by the windows.  I recognized all of them as the patient’s longtime paid caregivers.  Not long after them there came a couple who volunteered with a local charity, whose paths I had crossed more than once when visiting this patient.  In an instant that feeling of being utterly out of place disappeared.  Suddenly I belonged.

I think we all learned in kindergarten that just because other people are doing something doesn’t make it right.  In this case, though, as of that very moment, I was pretty sure we were each very right to be there, and very right to be feeling the way we did.  As distant as I felt from everyone else in that room, I sensed a tangible bond with these men and women.  We had lost someone, and we did need to stop and mend the part of our hearts that had broken.  No, it was not the same kind of loss, the same kind of rending of the heart that the rest of the people in the room had experienced.  But our loss was still real.  This patient we had lost was a person.  And as people, us professionals needed the hugs, the tears, and the words of comfort that were shared between us when the service had ended.  We needed those things from each other.  We were not employed by the same agencies, but it was apparent that now that were teammates.  Or, perhaps, a band of brothers (and sisters).  Comrades.  People.

I can’t forget the feeling that I was exactly where I was supposed to be, not only as a professional, but also as a person.

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4 thoughts on “Patients Are People, Too (And So Are Professionals)”

  1. Jillian,

    I felt like you were writing my thoughts straight out of my head with this one. I frequently provide music for my patients’ memorial services and it can be hard to place where exactly we “fit” in that context. I am there as a professional to provide bereavement support to my patient’s friends and loved ones, and there as a fellow human being to mourn my own loss, quietly, on the periphery of the “main event” so to say.

    I wonder, do you consider it an ethical issue to simply state, “I work for X hospice as a music therapist. I was privileged to know X before s/he passed.”? Typically, the moment I get in the door, one family member or another will begin introducing me in that context, and almost always, I am asked to introduce myself and share a memory of that patient from music therapy before I sing a single note for the service. It is tricky, but I don’t think simply stating who you are and that you knew the patient is disclosing too much about your relationship, but I would love to hear your thoughts.

  2. Emily, if you are still out there, my apologies for having missed your comment when it was first posted! Here’s a very, very belated thanks for explaining how this post resonated with you and your own experience. It’s good not to be alone in this! As to your question about patient privacy, I would still stick to a policy of confidentiality as to the nature of my relationship with a patient after his/her death. Even at a funeral, a community event where sharing is one of the main purposes, the law stays in effect as far as I understand. My company asks for documentation of verbal permission to share my relationship with a patient when a family chooses to grant that at times like these. In my humble, “lay” opinion, your statement (that you work for X hospice as an MT and knew this person before they passed away) walks the line, although it could easily lead to follow-up questions that make it more difficult to be vague without outright declining to answer. Personally, I’d also hesitate to share publicly any content from treatment. If the patient signed their own consents, then I’d definitely resist.

    Perhaps the best thing to do is to talk to the patient and family before the event, find out what they’re okay with disclosing, and get it in writing. Then there aren’t any questions left lingering.

    If you have any more thoughts, I’d welcome them, now or six months from now. 🙂 And I’ll work on my response time.

    – Jillian

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