Originally poster in Winter Newsletter 2023 Volume 13, Issue 1.
Written by Courtney Murray, MPAS, PA-C
A few months ago, I was at the beginning of my week on the medicine service and just getting ready to start morning rounds. I walked into the room of an elderly gentleman whom in the days prior had decided to transition his care to comfort measures only and was awaiting inpatient hospice, to find a single family member seated at the bedside. The patient was asleep and resting comfortably, so in an attempt not to wake him, I tiptoed in and with a gentle voice introduced myself to his visitor. I found that the woman quietly reading at his bedside was his twin sister. I sat down in one of the bedside chairs, and she started telling me all about her brother, his life, and their journey to this point thus far.
She told me about his career in teaching and how even years later students would stop him wherever they went to reminisce or thank him for the effect he had on their lives. She detailed their large Italian family and how even though they had lost some of their siblings in recent years, the family continued to grow, and they remained thick as thieves. She explained how in the last week when word spread that he decided to formally stop hemodialysis, the phone began to ring off the hook with family and friends from all walks of life sending their well wishes and hoping for one last chance to speak with him. She spoke of the joy and sorrow they have shared as family members have been able to gather at his bedside – how they ordered him his favorite pizza from Sally’s; how they brought in a bottle of champagne that he used to love; how they laughed, cried, recounted stories of their lives together, and raised a toast with her brother to his life well lived. At one point, she spoke about how common it is after funerals to spend a small fortune for everyone to congregate together to cry, to laugh, to feel connected for an end-of-life celebration, and how grateful she was that not only did they get to experience that celebration of her brother’s life, but that he got to be present for it.
We spoke for a while longer, and I walked out of the room with tears in my eyes, both from the sadness of a life ending, but also in thinking about the incredible gift for both this patient and his family to be able to have had these final moments together. I know from personal experience how rare that opportunity may be.
When I started my career as a PA in hospitalist medicine, some of the most intimidating terms I encountered were goals of care, code status, end of life, comfort measures, hospice. I was so afraid that I would say the wrong thing. Throughout my time in PA school, I learned about countless disease processes and how to treat them. I also learned about those diagnoses with guarded prognoses and limited treatment options. However, it is impossible to imagine how challenging these situations can be until you are sitting in front of a patient and their loved ones with the daunting task of delivering bad news, figuring out how to move forward, or helping them grapple with the realization that the end may be near.
While reflecting on my own experiences with challenging conversations over the past two years in inpatient medicine, I had the privilege of speaking with a colleague, Dr. Nora Segar, Director of Palliative Medicine at Saint Raphael Campus of YNHH. In seeking her advice regarding things to keep in mind when approaching goals of care or difficult conversations with patients and families, here are just some of the things we spoke about:
Goals of care conversations are a part of medicine, and we should normalize them as such.
They are common, they are ever evolving, and they are necessary – even if they can be challenging. The event of being hospitalized in and of itself is hugely impactful, so it is okay to start these tough conversations.
Sometimes the most impactful intervention is to simply sit down and listen. If you ask questions and you listen well enough, most often people will reveal to you what they are hoping for. Always be honest, but remember that sometimes, simple is the best way to be clear. Don’t hide behind a smokescreen of medical terminology, because as much as we may wish differently, we cannot turn bad news into good news. If you let the patient’s and their families’ voices come first, they will usually divulge what they want – and our job is to frame our recommendations to accommodate those wishes.
Don’t be afraid of the emotions that will arise. These are highly sensitive decisions, and an emotional response does not mean you have done anything wrong. Attend to those emotions. Show empathy. Sometimes, simply acknowledging how unimaginably difficult it must be for a patient or their loved one and creating a simple human connection can make a world of difference. Particularly in the hospital, we are tasked with treating patients and families during some of the hardest moments of their lives, and that is not to be taken lightly.
Unfortunately, not everyone gets the chance to fulfill their end of life wishes like the gentleman I met those many months ago. While it may not be an easy feat, it is both a privilege and an honor, as PAs, to both guide and walk alongside patients and families during some of the toughest moments they will encounter.
Details of the above encounter and patient have been altered to protect the patient’s identity.
Photo by Bruno Aguirre on Unsplash.