Palliative and hospice care are important issues for health care professionals to consider, particularly as the U.S. population ages. However, they aren’t issues only for the elderly – they’re meaningful to any person, regardless of age, dealing with chronic or terminal disease, as well as that person’s family and loved ones.
On June 22, Shenandoah University physician assistant (PA) studies program student Dustin Bogan ’16, participated in the Patient Quality of Life Coalition’s Lobby Day at the U.S Capitol to discuss hospice and palliative care education, awareness and research. A special concluding event, hosted by the National Hospice and Palliative Care Organization, included a roundtable discussion featuring CMS Chief Medical Officer Patrick Conway, special guest Rory Feek, and Dr. Atul Gawande, author of “Being Mortal,” and a special viewing of the PBS documentary, “Being Mortal,” based on Gawande’s book.
Afterward, Bogan reflected on the event and his education as a PA student, which has taught him to “individualize a patient’s medical care and act in the best interest of the patient.” But, when a patient is incurable, a caregiver can feel like a failure, which he said should not be the case. “It is important for guilt and shame to be eliminated from our minds and be replaced with hope and positivity, because hospice and palliative care are two valuable avenues of medicine that are poorly misunderstood and underutilized. It is time to eliminate the negative connotations around those words and determine when to inform patients about the availability of hospice and palliative services in order to ensure that they can utilize them effectively before it is too late,” he said.
At Lobby Day, Bogan said he was fortunate enough to meet Gawande, view the documentary, and hear positive stories about hospice from Gawande, Rory Feek and others. “I heard from a woman who had watched her father struggle with lung cancer before deciding to go on hospice, which allowed him four of the happiest years of his life. Another woman shared the story of her three-month-old son, whom she adopted knowing that he was destined to spend the entirety of his life in palliative care. This had only reinforced what I already knew, that everyone is touched directly or indirectly by the suffering of chronic disease. It also reinforced that hospice and palliative care are not death sentences, but are in fact able to improve the quality of a patient’s life regardless of the quantity of days that they have remaining. Gawande provided an enlightening end to the day as he shared his own experiences – both personal and professional – with these fields of medicine. It was evident that his support for palliative care and hospice was tied to his own life and experience. He had witnessed patients and family members struggle to adapt to the severity of their illness only to turn to hope and positivity through hospice or palliative care. Gawande relived each experience as the documentary played across the screen – from the first patient to make him think about the end of life to his extremely personal experiences with his own father.
“Beside Dr. Gawande was Rory Feek, who some may know for his musical career and others know for his public campaign to share his wife Joey’s story. Joey passed away earlier this year after a battle with cancer, but she was fortunate enough to spend the last portion of her life in hospice. Rory described those last few months as the best time of the couple’s life. No one can truly depict the emotions surrounding such a decision, but Rory said that he hoped that his personal journey with Joey would further shine a light on the positive utilization of hospice in particular. He wanted everyone to understand that this was a way to spend quality time with the ones that you love in the most critical of times.
“It was an honor to meet these individuals and hear their experiences, but that is not as important as the message that they all share. Palliative care is something that should be provided alongside curative medicine in order to improve the quality of a patient’s life. Hospice allows patients to choose how they wish to spend the last days of their life. These services allow patients with a way to have the best life possible from the beginning to the end. Not only does it provide medical care, but also support to those who need it the most.”
Photo: PA student Dustin Bogan with other health care professionals from across the U.S. who work in hospice and palliative care.