Introduce Palliative Care Sooner for Patients and CliniciansJuly 31, 2015 | By Amanda Copenhaver
Changing culture is a process.
Awareness and understanding of palliative care is often limited, yet the benefits are discernible from better quality of life to care more consistent with patient preferences, to more recent data indicating improved survival. My experience with palliative medicine as a first-year medical student has made me realize how vital palliative care education could be for all medical students.
At the beginning of my freshmen year of college I started volunteering for hospice. More often than not I was asked, “Do you find volunteering for hospice depressing?” I have always found this question quite remote. Rather, I become attuned to patients of all cultures, races, different mental disabilities, distinctive family situations, and all with singular life stories and impressions.
Four years later, I began medical school at the University of South Florida Morsani Collage of Medicine in Tampa, FL. Care for the whole person was the continual focus. Yet, as I gained insight into different medical specialties in clinics and hospitals, transparent and candid discussions were not always a commonality. I have met patients with great anxiety and stress regarding either their own or family member’s serious illness. Yet not once were they asked about their goals of care. Questions such as: “What is important to you?” “What are you hoping for?” and “Have you thought about a time when you could be sicker?” were untouched.
Alongside, I continued visiting my hospice patients throughout my first year of medical school. Hospice brings patients hope; their last six months can be lived well. Frustrations often lessen with each decision the patient and their loved ones make, offering them a sense of control and empowerment. But what about patients with serious illnesses that are not yet terminal? This is when I learned of palliative care. In palliative care those questions above are asked; patient’s physical, spiritual, social and emotional needs are all tended to. Palliative care is care for the whole person.
Each person is multi-dimensional and dynamic. Understanding a patient’s culture and background in conjunction with their physical, spiritual and religious needs is vital for delivering high-quality care. Yet, too often only physical needs are addressed in Western medicine. I have had family members re-admitted to the emergency room on numerous occasions mostly due to lack of symptom control and absence of goals of care discussions. I greatly yearned for palliative medicine to be in their lives; they too could receive care more true to their preferences. In the future, I will be caring for patients with serious or confounding illnesses, similar to my family members, but their goals will be central to the care they receive.
I have spent the summer after my first year of medical school at Johns Hopkins Hospital immersed in palliative medicine. With each patient interaction new perspectives are gained, transforming us into who we are. “Take advantage of all you have and can do. I did,” a patient once said to me. While with another patient, eye contact was enough to communicate the ease he felt.
One particular relationship distinctly remains with me. We had been consulted to see Mr. Jones who had prostate cancer with shortness of breath and intractable pain. A chart biopsy helped us discern the medical and family history. Mr. Jones’ face was long and concern and angst filled his eyes. “What brings you joy Mr. Jones?” my mentor asked. Such a simple question, yet its impact was invaluable. Bliss quickly overcame his saddened eyes as he shared his son’s accomplishments with us. He was proud his son would be graduating high school tomorrow but saddened he would not be able to see him graduate. To help meet his goal, we were able to stream the graduation ceremony online at his bedside. Mr. Jones was now able to proudly watch his son walk across the stage.
As the week progressed, Mr. Jones’ pain and shortness of breath worsened due to pneumonia and new metastasis to the lungs. We shared this information with his surrounding loved ones—wife, sister, son and close friends. We expressed that we would be back each day to journey with them, focusing on his pain, treating his pneumonia and clarifying some options of care with his oncologist. Our chaplain would continue to visit them and offer the spiritual support the family requested. My mentor and I stepped outside with his sister. She began to cry but then reached out and hugged us. “Thank you, thank you so much,” she sincerely stated.
Moments such as these accentuate the fulfillment of person-centered care. Besides, we know our own stories; it is the stories of others that are inspiring. In palliative medicine, we have the honor of gaining insight into each patient’s life story, perspectives, affect, joys and concerns, which traditionally are not well documented. I realize it is our responsibility to document these vital components of our patient’s lives in order to encompass what matters most to each patient as the standard of care.
Early integration of palliative care into medical school education could decrease the barriers to person-centered care and heighten primary palliative care skills to lead to better care. Culture can be changed.
Watch this video of Dr. Amanda Moale, and a past fellow medical student discussing the need for palliative care curriculum in medical schools.
Amanda Copenhaver, MD
Resident, Internal Medicine
John's Hopkins School of Medicine