The Evolution of End-of-Life Care: A Conversation with Barbara Karnes
Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year
In episode 49 of "Seeing Death Clearly," host Jill McClennen, a death doula and end-of-life coach, talked about the evolution of end-of-life care with none other than Barbara Karnes, the esteemed godmother of modern-day hospice. Their conversation traversed the shifts in societal perceptions of death, the emergence of hospice care in the 1970s, and the pivotal role of end-of-life doulas in providing holistic support during the dying process.
The dialogue began with an observation by Barbara: during intense times, it's often the heart that leads, not the mind. This sentiment sets the tone for understanding the profound emotional and existential dimensions of end-of-life care. Barbara, drawing from her vast experience, emphasized the importance of recognizing that dying is a unique journey deserving of compassionate, holistic support.
Barbara shared her journey into the world of hospice, revealing that her initial career as a nurse led her to believe she had made a mistake. However, a serendipitous encounter with the concept of hospice sparked her interest. She embarked on a path that ultimately positioned her as a pioneer in the field, advocating for a paradigm shift in how society approaches death and dying.
The Role of End-of-Life Doulas: A focal point of the conversation was the emergence of end-of-life doulas and their distinctive contribution to the field. Barbara underscored the invaluable gift of time that doulas offer, filling a crucial gap in traditional medical care where time constraints often hinder deep, meaningful support. End-of-life doulas, she emphasized, operate outside the medical model, embodying a fresh perspective and a commitment to personalized, compassionate care.
The dialogue navigated the complexities of integrating end-of-life doulas into existing care frameworks, particularly within hospice settings. While acknowledging challenges such as regulatory constraints and misconceptions, Barbara and Jill envisioned a future where doulas play an integral role in creating sacred moments for families during the dying process.
A recurring theme throughout the conversation was the urgent need to normalize conversations around death and dying. Both Barbara and Jill emphasized the transformative power of open dialogue in dispelling fear and fostering acceptance. By reframing death as a natural part of life, society can embrace the inevitability of mortality with greater understanding and compassion.
Through Barbara Karnes' insights and Jill's impassioned advocacy, the conversation illuminated the path toward a future where dying is embraced with reverence, dignity, and unwavering support. In honoring the journey of the dying, we ultimately honor the essence of what it means to be human.
Listen to the full episode of Seeing Death Clearly at the link below.
Reflection Questions:
How has your perception of death and dying been shaped by societal norms and personal experiences?
What role do you believe emotions play in end-of-life care, and how can they influence decision-making?
Reflecting on Barbara Karnes' journey into hospice care, what lessons can be drawn from her experience of stepping outside traditional medical roles?
In what ways do end-of-life doulas offer a unique approach to care compared to traditional medical providers?
Consider the challenges discussed in integrating end-of-life doulas into existing care frameworks. How might these challenges be addressed or overcome?
What steps can individuals and communities take to normalize conversations around death and dying, fostering greater acceptance and understanding?
Reflect on your own experiences with death and dying. How have these experiences influenced your views on mortality and end-of-life care?
How might the principles of compassionate, holistic care discussed in the podcast be applied to other areas of healthcare or personal relationships?
Imagine a future where end-of-life care is fully integrated and embraces diverse perspectives. What would that future look like, and how can we work towards it?
Consider the concept of a "good death." What does this mean to you, and how can we strive to create meaningful end-of-life experiences for ourselves and our loved ones?
Key Terms:
Hospice: A specialized type of care for individuals facing a terminal illness or nearing the end of life. Hospice focuses on providing comfort, symptom management, and emotional support to patients and their families, typically delivered in the patient's home or in a hospice facility.
End-of-life Doula: Also known as death doulas or death midwives, end-of-life doulas provide non-medical, holistic support to individuals and families during the dying process. They offer emotional, spiritual, and practical assistance, helping clients navigate their end-of-life wishes and providing companionship and advocacy.
Holistic Care: A comprehensive approach to healthcare that addresses the physical, emotional, social, and spiritual needs of individuals. Holistic care considers the whole person and seeks to promote overall well-being and quality of life.
Medical Model: A framework for healthcare delivery that emphasizes the diagnosis and treatment of medical conditions by trained healthcare professionals, typically within a clinical or hospital setting. The medical model often focuses on disease management and relies heavily on medical interventions.
Compassionate Care: Care that is characterized by empathy, kindness, and understanding. Compassionate care acknowledges the emotional and psychological needs of patients and their families, prioritizing dignity, respect, and comfort throughout the healthcare experience.
Normalization of Death: The process of destigmatizing and integrating discussions and experiences of death into everyday life. Normalization of death aims to counteract fear and avoidance surrounding death, promoting open dialogue, acceptance, and greater awareness of end-of-life issues.
Sacred Moment: A profound, meaningful experience that is imbued with significance and reverence. In the context of end-of-life care, a sacred moment may refer to the moment of death or other deeply meaningful experiences shared by patients, families, and caregivers during the dying process.
Regulatory Constraints: Legal or bureaucratic restrictions imposed on certain professions, practices, or services. In the context of end-of-life care, regulatory constraints may refer to laws, regulations, or policies that govern the delivery of hospice or doula services, including licensure requirements, scope of practice limitations, and reimbursement policies.
You can find out more about the work of Barbara Karnes on her website BKBooks
