Freeman says, everyone has to change how we think about death if we really want to change how we care for the dying. “Death is not a sign that we have failed,” she says, but a summons to rise to the needs of the moment. “In the care of the dying, you will witness the most courageous, most loving acts you will ever see. And the greatest tool you possess is still your humanity. You should never be afraid to demonstrate that.”
Death offers no second chances to get it right, not for the patient, the family or the caregiver. It’s a difficult experience for everyone, but Freeman has witnessed how every decision in end-of-life care has the power to make things better or make things worse.
“I once watched a mother try to touch her dying son through the gown and gloves they made her wear,” she said. But a call to the Infectious Diseases Department for new orders meant a mother’s last caresses didn’t include latex after all. It’s that individual approach that makes all the difference.
https://www.cityofhope.org/blog/cares-tool-nurse-practitioner-end-of-life-care
The Elephant In The Room, originally known as Resilient Hearts, is a film based on a novel of the same name I wrote in 2015 to share experiences encountered by members of a hospital team that care for the terminally ill and dying. This special form of medicine is called Palliative Care. I realized many healthcare providers did not know what we provided and the community was even less informed. I wanted to educate in a way that was both entertaining and informative. I felt a film would reach a broader audience and could be a tool to promote discussions about effective ways to communicate, the need for compassion, and show the difference a dedicated Palliative Care team can make in the lives of patients and their families.
Palliative Care is a new branch of medicine designed to bring back the communication and the humanity often missing in today’s technology-based health care. Our focus is to help with symptom management and to address the physical, psychosocial, and spiritual needs of patients and families affected by illness. You do not need to be dying to benefit from palliative care, but the need for our services seems to be the greatest for the terminally ill and dying.
From Bonnie Freeman:
I found in my role as a Nurse Practitioner on a Palliative Care team not only included providing emotional and physical support of patients and families dealing with death and dying, but I also needed to include the medical staff and members of the Palliative Care team. It can be difficult to work with sadness and loss on a daily basis without it taking an emotional toll.
The need for self-care is a huge focus as many providers deal with emotional fatigue, over-identification, and burn-out. All too often the cure for this emotional strain has been to change jobs, quit, or just stop caring. Far too much time and money are invested in health care providers to have them quit or provide low quality care, so learning to become resilient is essential, and is a major theme for this movie.
I wrote Resilient Hearts to emphasize the importance of humor and playfulness, and to remind us that it is one of our greatest coping mechanisms. It can provide a means for a patient to retain one’s dignity, regain self-control, and to feel “normal”, even if it is only for a few moments. I do not use humor to make light of the sadness and loss experienced during the dying process, rather I want to show the importance of making personal contact and helping them enjoy the time they have.
Health care providers need to stop equating death with failure, and focus on making the time remaining for our patients a celebration of their life. The dying need to be respected and honored. All too often the terminally ill and dying are isolated and made to feel devalued and untouchable. Resilient Hearts reminds us about the importance of our humanity.
The final journey our terminally ill and dying patients travel can be transformed to a loving and often joyful experience that family members will cherish. Death does not need to be dark and frightening if we can talk about it openly and work to make every moment special. This is what I want to convey in Resilient Hearts. Love and laughter can co-exist with loss and heart-ache.
https://www.youtube.com/watch?v=814Ean2lpuE
Dr. Bonnie Freeman is a Supportive Care Nurse Practitioner at the City of Hope in Duarte, California. She obtained her Adult Nurse Practitioner education with a secondary focus in Palliative Care from Vanderbilt University, a Doctorate in Nursing Practice from Azusa Pacific University, and she holds an advanced certification in Hospice and Palliative Care Nursing through HPNA.
Bonnie has received awards for her teaching efforts in Critical Care end of life education from ELNEC in 2009, and for excellence in pain management from the Southern California Cancer Pain Initiative in 2012 and the Margo McCaffery Award of Excellence in 2014.
Bonnie lost her life in an unexpected medical event prior to the film being completed.
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