Through the first few years of my nursing career, I heard whispers of palliative care; the words floated around as recommendations from nurses in report, as something that happened on the cancer care unit, or with my friend’s elderly grandparents. Palliative care, hospice care, comfort care–I interchanged these different stages. That all three of them meant to stop unnecessary treatments and focus on making the patient comfortable. That the end was in sight.
Once, while working in an adult hospital, I paged the palliative care consult physician in distress because the primary medical team was drawing labs, sending blood cultures, and starting antibiotics on a very ill man with end stage liver disease. “But these interventions are all palliative care, “ she insisted that morning. My face grew red. I didn’t know. I thought we might be subjecting this man to inappropriate treatment, not to mention more pain. It was the first time I ever glimpsed the potential of palliative care. In my mind, hospice and palliative care bound together in the book on death. Turns out, they were two different chapters.
When taking care of Baby K in the weeks before she passed away, I would breath a sigh of relief when the palliative care team rounded at her bedside.
Not because I wanted to speed up her time on earth but I wanted the family to really understand the big picture of her status, and not just focus on the next twelve hours. It was a difficult process to experience. (Looking back, the primary team, her family, and palliative care providers were probably having these tough conversations. I was just too narrow minded myself to see beyond the bedside. I didn’t know how to look yet.) After her death, I searched for ways I could bridge this traumatic experience with fulfilling and healing nursing opportunities.
These three left a lasting impact:
National:
To kick it off, I attended the Schwartz Center’s Inaugural Compassion in Action Healthcare Conference in Boston, fortuitously happening a few months after my experience with the cold room. It felt like everyone fully showed up to the conference. I participated in three days of inspiring speakers, heartfelt small group discussions, engaging panels, and honest breakout sessions.
Local:
By luck, I found this course a week before the application deadline. UCSF hosted a year long interdisciplinary palliative care continuing education course. We met once a month from September through June. Each session consisted of a lecture about a specific palliative care domain, amazing guest speakers, communication training with actor-patients through Vital Talk, resilience and burnout training, and interdisciplinary group work between the social workers, physicians, chaplains, nurses, respiratory therapists, an anesthesiologist, nurse practitioners, and even a speech therapist in attendance.
Hospital:
I got elected to represent my nursing unit on our hospital wide palliative care committee. We met monthly to discuss ways to implement palliative care in pediatrics, from symptom management, music & art therapy, and family & sibling support into our bedside practices and learn about the resources available at our institution. Then, we could take these new insights back to our nursing units and share them with coworkers.
Through the year-long UCSF class, I began to understand the role palliative care plays in healthcare and finally pay attention to its description.
Here’s the formal definition:
Palliative care is specialized care for people with serious illnesses. It focuses on providing relief from the pain, symptoms and distress of serious illness. It is a team-based approach to care involving specialty-trained doctors, nurses, social workers and other specialists focused on improving quality of life. https://getpalliativecare.org/
Here’s my favorite definition:
“Palliative care is really good medicine.”
Isn’t that great? It’s about having the best quality of life for the longest quantity of life. It’s a continuum, constantly evolving as you reach new stages of illness, realign your values, and communicate your end of life wishes. It is the language of living well. Palliative care brings the best of the provider-patient relationship to the forefront of medicine.
I know this is only the beginning of my palliative care journey. Now that I truly understand what it encompasses, I use it daily as a bedside nurse–from communicating with open-ended questions around difficult topics, to advocating for effective symptom management, to just taking a few extra moments to learn about the patient, who they are outside of the hospital. Perhaps in the future, palliative care will be obsolete, no longer needed as a specialty since it’s implemented into all medical practice, as everyone provides patient-focused, non-judgemental, holistic care to improve the quality and quantity of life for people with serious illnesses.
Until then, we shall roll up our sleeves and get to work.