Adding a voice to the conversation

by Jaqueline Lee, UNC School of Medicine

We knocked on the door to our next patient’s door. She was a new resident at a rehabilitation and nursing facility just outside of Charlotte. “We are from palliative care” we explained to her nurse who was busy giving a bath to our patient’s roommate. She looked back, a look of concern taking over her face. “Oh no I’m so sad to hear that, I thought she was doing okay” she said, referring to the patient we were to visit.

We later went on to meet our patient, a sweet older lady who had just celebrated her 100th birthday the day before. She had a set of bouncing balloons in her room and photos of her many children and grandchildren up on the wall. After a short conversation we confirmed, just as her nurse had said, she was doing just fine; however, a quick review of her chart revealed that we could be helpful. Her MOST form had not been signed appropriately, and she had no authorized DNR, therefore if her heart stopped she would still receive chest compressions. Although the nurse seemed to associate our services with bad news, this patient was an ideal candidate for palliative assistance. She was not actively dying, and we had time to discuss with her and her family what her wishes were so that she could make conscious decisions about the end of her life.

My experience on my hospice/palliative care rotation at Hospice & Palliative Care Charlotte Region showed me that there is a good amount of general confusion about the role of palliative medicine in our society, and that the skills required to offer these services are unique, and not shared by all providers. Moreover, despite being three years into medical school, I really didn’t know anything about hospice or palliative care. Even in my short, two-day experience, it became glaringly obvious that the words “hospice” and “palliative” are easily two of the most misinterpreted words in modern medicine. Even though the nurses, chaplains and doctors that I interacted with on the palliative and hospice services were easily the most pleasant and kind-hearted group I’ve worked with so far, patients, families, nurses, even physicians associate their work with “the end” or failure as evidenced by the response we got from our patient’s nurse.

My journey thus far through clinical medicine has shown me that as a medical community, we are not comfortable discussing the end of life. Modern medicine has an established role that is to “make people better” and prolong their life. As such, this mindset is considered by many to be in direct conflict with the goals of palliative and hospice medicine. Even experienced physicians are uncomfortable discussing the end of life. Although this is unfortunate, it makes sense, because these conversations are difficult. They take time, patience, and require that the provider put their own beliefs, expectations and desires aside.

After witnessing the important work of the hospice and palliative care providers on this rotation, I know that we need to reframe their work as a medical community and add their voice to many of our conversations with patients and their families. Their goals are truly patient-centered, and I know that weaving their viewpoint into more conversations about patient care will only benefit the people we serve.

Explore posts in the same categories: advance directives, awareness, hospice, palliative

Tags: advance directives, difficult conversations, hospice, palliative care, patient-centered goals

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