Friday 14 June 2013

pain in the hospital

A note from December 2015:
Looking back at this post I was surprised that my intro didn't actually name one of the main things that I originally thought was valuable about the "practice narrative" I share: Erin is a white nurse(-ing student, now nurse) talking pretty candidly and eloquently about being a witness to anti-Black racism in  health care.

This was something I was thinking about a lot at the time of posting. At the time I was also picking my way through this book about Black and other racialized nurses' experiences of racism in Canada, called: Real Nurses and Others: Racism in Nursing by Tania Das Gupta. I highly recommend anyone interested in any of these topics to check it out.

There you go. Institutional racism was (and is) on my mind. This is a post about that. And about nursing in Toronto. Read on and enjoy the pictures. --Nurse Peents
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This is Erin, pictured here in her graduation garb. The photos are of her mother and aunt -- also strong women and accomplished nurses.

I met Erin at a conference for health care workers against poverty that was held the same day as our nursing school's student-lead orientation. Erin was the only other person from our year who was more interested in talking about dismantling systemic oppression than in going to a major league baseball game (don't get me wrong - both activities have their particular appeal). I am unbelievably stoked that this person is becoming an RN.

I want to share a "reflective practice narrative" of hers that struck a chord with me. It was read aloud in one of our classes to frame a discussion around professional ethics, and I immediately wished more people could hear it. I think it demonstrates so many of the qualities I love about this person -- a woman with brains and a heart, who sure can write.

(If you want to read more about the social construction of pain, check out this piece by another person I respect and admire -- http://still.my.revolution.tao.ca/pain )


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          It was my first adult acute care placement and I was on a general medicine ward. I loved it. I loved the variety of clients, I loved the variety of conditions, and I loved the constant buzz of activity as everyone ran around trying to keep up with the needs of the clients and the management. I felt really buoyed by the fact that I seemed to be able to meet the needs of the patients. It’s always a secret personal goal of mine to connect with even “challenging” patients. I take pride in the fact that the patients with whom I work feel cared for. And everything was going swimmingly, until about halfway through the rotation when I was assigned to a patient with sickle cell anemia. She was a woman in her late thirties, married, with a teenaged son. And we hit it off immediately. Despite being in constant, horrendous pain, Ms. S had a very bright and compassionate character, and gave me the blessing of being very open to my learning experience as a nursing student and educating me about her illness and experience. I loved working with her.
 But there was something that troubled me deeply and increasingly during the time that I worked with her. Ms. S was in pain. And her pain medication never changed. In fact, it decreased during the time that I worked with her, though her pain score had never dipped below an 8 out of 10. Why weren’t they increasing her pain medication? What was more troubling, no one seemed particularly concerned that she was in pain. The behaviors ranged from quite subtle, to egregious. On the one end of the spectrum, I noticed that the nurse would not prioritize Ms. S’s pain medication doses. In a list of patient needs, Ms. S’s pain medication always seemed to fall to the bottom of the list. On the other end of the spectrum, I heard more than one nurse use the term “frequent flyer” when referring to Ms. S and other patients with Sickle Cell Anemia. Somewhere in between, her chart was littered with notes such as “? Substance misuse”, “? Pain medication addiction.” There was also another woman on the unit who had been admitted for a Sickle Cell pain crisis. Over their time in the hospital, Ms. S and Ms. B had developed a friendship, and supported each other. Ms. B, who was able to walk on her own, would come to visit Ms. S often. They both shared their frustrations with me. They were aware that some thought of them as “frequent flyers”. They were sensitive to the fact that nurses sometimes only begrudgingly administered their pain medication, and the physicians were reluctant to increase their pain medications. They were acutely aware of the fact that they were sometimes perceived as being “drug seekers.” They told me that these were challenges that they faced through their entire adult lives. 



In the research that I did to prepare for this client, I learned that Sickle Cell Anemia is a disorder that predominantly affects Black men and women. Both Ms. S and Ms. B were Black women of Jamaican descent. I couldn’t help but wonder: was race a factor in Ms. S’s care?

I have been raised in a cultural milieu in which “racism is bad” is a common refrain. I have encountered it at every level of my education. However, like “Just say no to drugs”, I wonder if this is more public service lip service than anything else. Racism, I believe, is far subtler than we have been taught. It lurks in the shadows of structural powers and slight individual gestures. It is not always obvious, but that does not lessen its harm.

 

At home one night, I typed “sickle cell racism” into Google. The results were staggering. I found website after website, article after article, detailing the ways in which racism has been identified as a factor in inadequate care for individuals living with Sickle Cell Anemia. On the one hand, I felt comforted by this knowledge. At least I wasn’t the only one having this thought; I wasn’t crazy. On the other hand, I was enraged. Why, when there is peer-reviewed empirical evidence that this problem exists, has it not been addressed by the healthcare system? Why were these women in physical pain and also experiencing racism in one of the top hospitals in Canada?

Yet, as a nursing student, I felt powerless. I could not change the medication orders. I could not hang the pain medication on time on my own. And I certainly could NOT, as a nursing student, just stand up and call “RACISM!” All I could do was make sure that Ms. S had warm blankets and plenty of water at all times.  I felt so impotent; so powerless. I remembered the posters in my elementary school saying “Stop Racism!” I wish it were so simple. Nursing students, as it is, hold a marginal and liminal space in the healthcare setting. Often, we are merely tolerated. Sometimes, we are not even afforded that luxury. It’s hard enough, and taboo enough, to call “Racism”, without also being in an unacceptable position to do so. We have also created an environment in our society in which the word “racism” is avoided like the plague, and there is almost no diplomatic way to say, “Okay, I think we have some systemic racism going on here. What can we do to ameliorate this situation?” 

In the end, all I could do was ask “innocent” questions to the nurses and physicians. I found an ally in one nurse. He was a Black man of St. Lucian decent, who has a nephew with Sickle Cell Anemia. I also found an ally in my Clinical Instructor, who helped me to arrange for both Ms. S and Ms. B to be seen by the Acute Pain Team, which neither of them had, up to that point in their care. But not all were supportive. I included this issue in the nursing care plan that I created for my class assignment. The comments from the marker indicated that this was “not a client-specific issue” and therefor not “appropriate for the care plan.”

My father is a refugee. My mother is a second wave feminist and a nurse. My whole life, they have endeavored to make me see the ways in which discrimination is endemic in our society, and the ways in which it trickles down from our very institutions.  They have also instilled in me the importance of equity and social justice. I carry these concepts with me in my day-to-day life. These values are the main reason that I wanted to go into nursing. People are often at their most vulnerable when they are dealing with the healthcare system. I see nurses as the sacred guardians of human rights, the very foot soldiers of social justice. And yet, when caring for Ms. S, I felt utterly impotent. I try to carry this experience in all of my patient interactions. I always ask myself, “What is the bigger picture here? Is there something I’m seeing that others may have missed?” These questions are simple. Their answers are complex. And the battle to resolve them is long, arduous, and rife for the potential of unwanted consequences dealt like blows by those who don’t appreciate people who “rock the boat.” But I have promised myself that I will never stop asking these questions. I will never stop seeking the answers. And I will never, ever, stop fighting for resolution. After all, the optimal care of my patients depends on my strength and courage to fight for justice. If I am not willing to take on this fight, then I have certainly chosen the wrong profession. 

Tuesday 1 January 2013

what patients tell us


I did a clinical placement this fall at a big downtown hospital on a unit specializing in the treatment of gastrointestinal diseases. The staff was great but I was even more blown away by the patients - mostly people with chronic bowel conditions who came from all over the place, from different ages and backgrounds and who shared with me such a broad range of their thoughts and experiences. I was so appreciative for the trust they had in me, and it was a huge privilege to be in the position to receive their stories and assist in some of the most intimate aspects of their care.

In thinking back on this, a quote from my course readings this semester resonated for me especially:

"I want to challenge us to keep the detail of families' lives present in our work; to find creative ways to incorporate context, history, and concerns that drive families forward in chronic illness; and to resist the forces that, in the name of science, strip our work of its life and detail." (from Catherine Chesla - "Nursing science and chronic illness: articulating suffering and possibility in family life," Journal of Family Nursing, 11(4), p. 384)

I chose to take this challenge literally: the words and images below are based on some of what patients said to me, with a few details changed to protect privacy. I'm especially interested in examining through these images and words the relationship between people's identities/beliefs and more traditional/medical notions of (their) health. (Future-note from 2015: I understand now that this all probably has something to do with the concept of "embodiment" that used to drive me crazy in nursing school.)

Together they were presented in poster form as part of a final project for my clinical course, dealing with the themes of family care-giving, coping, and experience as knowledge.





I haven't missed a hunt in 17 years. I'll have to be better by next season.

People tell me I look great because I've lost so much weight. I tell them yeah, it's called the Diverticulitis Diet.


I remember waking up in a pool of blood, and all I could think was: I have to clean up quick before my parents see!


In hospital, at least I sleep. At home the dog would come wake me every time my husband spiked a fever.

Since I was a teenager I've always taken myself to my appointments, even my surgeries. It's just how my family is.

I got this one after my first operation. After this one I'll get a 'No Exit' sign over my butt.


You know how much I pay for this TV? And there's nothing on.



They told me I couldn't go home yet and I was so upset. My blood pressure's been through the roof ever since.


Yeah, my friends visit me a lot. I can hardly keep them away.



I got sick right at the end of my degree, I barely finished my courses. I had to move back in to my Mom's after graduation.




After my surgery, I will be like a baby again.



The first thing I've held down in six weeks! Jello never tasted so good.


My pain is about the same as it was, I think I'm just handling it better.






You hear cancer and -- I just pray that my sons will have a father.






This is how you know it's love.