The CUPallCARE blog is starting a new series called “Pathways to Palliative Care”. We have all found our way to End-of-Life care and what we do for our patients is fascinating but just as interesting is how we all got here. In this new series we are encouraging all Palliative Care professionals to share their “pathway to palliative care”. What were your challenges, obstacles and lessons learned along the way?
Harri Bracket is the Lead Nurse Practitioner at the University Hospital in Aurora, Colorado. Follow her pathway.
In 2003, I was an oncology nurse educator just finishing my master’s degree in adult nursing. I had been an oncology nurse for the 14 years and had already felt very comfortable taking care of patients with serious illness. I enjoyed the hustle, bustle and stress of a busy unit; the hanging of multiple IV medications and the intricacy of knowing just what medication should be given when so as to avoid or combat distressing symptoms, the near oncologic emergency and even the occasional near-code. How morbid, I know. But what I liked the most, was hearing the patient’s story and sitting down with him or her in their patient’s room – listening to how they met the love of their life, or how many people get together for their BBQ’s, or what they liked to do when they weren’t stuck in this place. I loved hearing about their quality of life and what made them tick. It would help me imagine what they were like before they got sick and would give me more gumption to help get them out in one piece. Or at least, just get them out to enjoy what they liked doing.
Advanced education, changing perceptions
Like I said, I was near done with school and found myself really prioritizing what is important, similar to how my patients had done every day. I enjoyed the symptom management and palliative care courses the best, because they made the most sense to me. I had found some wonderful mentors and I had done some clinical practicums with home hospice and I knew then, I was hooked. I started seeking out palliative care experiences in the hospital; committees, community outreach opportunities, and worked on a change project as part of my Master’s Degree. This involved integrating the palliative care specialists with oncology rounds. At the time, this was very taboo and oil and water mixed better than they did. Not everyone saw palliative care as seeking to improved quality of life and match patient’s priorities to the plan of care. They saw it as a fancy word for hospice and taking away hope. There were turf wars and much skepticism. It was no small feat to play the diplomat between these two specialties but I felt that I could do it since I was becoming well known and respected by both sides. Some days were successful and some days were demoralizing. But this was the day that would change my sense of direction forever.
When Harri met Manny…
Manny was a Latino gentleman in his late 50’s. He was being treated for AML and was in to get some labs drawn in heme clinic. I still remember him. He was short in stature and had a perpetual smile on his face. He was still a little plump and still had some of reserve left in spite of the chemotherapy treatments he had undergone. He was married to his high school sweetheart and was extremely proud of his kids. He had worked hard to try to ensure that they got an education. Before the leukemia, he worked as a butcher during the week and cleaned bathrooms on the weekends for an office building. He loved music and used to play in his brother’s mariachi band. Latino traditions were the mainstay of his life. Tomorrow was going to be a special day for him and his family and you could see that he could barely hold in his excitement. “My only son is getting married” he stated proudly. “Well, let’s get those labs and get you out of here then!” But unfortunately, his labs came back with extremely low platelet and hemoglobin counts as well as borderline neutropenia, and wouldn’t you know it, he spiked a fever in the exam room. After calling the physician to report the counts and fever, we heard that the team wanted to admit him and our hearts all sank.
I tried to talk to the attending and come up with a plan around this. Maybe we could tank him up – give him blood, platelets, Tylenol and an oral antibiotic and still let him go? He could come back right after the ceremony. I tried to explain how important this was to Manny and how it was his only son and quite possibly, he may not even be alive next year to share in many family experiences. I knew it was a long shot. I knew my proposal was risky. But at the time, I still could not believe the response of “Absolutely not!”
“Well, what about quality of life?” I burst out.
“I’m not concerned about quality of life. I am more concerned about quantity of life”, the doctor responded. And with that, my fate, and Manny’s fate was sealed. Manny was admitted, missed the wedding, and died 8 weeks later in the hospital. And I left oncology to pursue a career in palliative care and never looked back.