“The ultimate aim of nursing as a human caring art and science is to assist persons and society in becoming more fully human.”
(Sarah Steen Lauterbach)

I’m passionate about bringing together my experiences as a nurse, a nurse coach, and an end-of-life care advocate.

In 2015, I attended an innovative graduate school called Goddard College, which allowed me to take a deep dive into studying the “forward edge” of progressive end-of-life care. As the Goddard website says, “Students develop the capacity to understand their lives in an ever-changing social context, and thereby to take meaningful action in the world. They are encouraged to question received knowledge and the status quo and to create new understandings of the world and of human experience. “

During the first semester, I was asked to reflect on the question –“Who am I as an agent of social change in embodying my end-of-life work?” I had to start with my foundation as a nurse.

Nurses have been on the forefront of many innovations in health care, and we stand today in a proud lineage of nurses taking leadership in reforming health care (including end-of-life care). Nurses are natural change agents and patient advocates. These are in fact two of the nine foundational roles of the nurse within the health care system.

When I look back, “nurse as change agent” is at the heart of what I’ve done over 34 years of nursing practice.

Sometimes the work was at the micro level, working one-on-one with a patient or family — advocating for better care and symptom management, or helping navigate a complex system that wasn’t meeting their needs. Other times, it involved advocating for better working conditions for nurses – decreased case loads, no forced overtime, having a seat at the leadership table, providing opportunities to learn about the prevention of compassion fatigue and burnout, or creating new work possibilities outside of the health care system. And then there is the advocacy work for systemic change – improving how we die in this country, how to better support people living with life-threatening illness, or how we train health professionals to be better advocates for vulnerable people.

People who are in the last part of their lives are vulnerable…and often afraid. They may fear dying in pain, being a burden to others, or losing significant parts of their identity. It may be very hard to ask for help with the intimacies of bathing and toileting. Some may fear divine judgment about secrets they’ve never shared. Family members and friends who take care of them are also vulnerable. Many fear the painful feelings of grief and loss, or feel they haven’t been a good caregiver. Sometimes nurses need to advocate for people who don’t have sufficient knowledge about their condition, or people who need to make decisions but don’t understand all that’s involved.

Sometimes people don’t receive the care they should, or don’t have access to resources they need to be safe and secure in the last part of their lives. Other times, there are people who are unable to communicate for themselves, or need help to communicate with the caregivers around them. Often, caregivers – both family and professional – are exhausted or overwhelmed, and need support and respite for their work to be sustainable. What I’ve observed is that many of these situations are improved if we take a more proactive – and less reactive – approach to what we anticipate might happen in the last part of someone’s life. Much of my work as a change agent at this point in my career is focused on people becoming better prepared for end of life – inner and outer preparation – in all the various forms that might take.

In this time of emerging social change around how we die, new roles are emerging within nursing. End-of-life nurse coaching is an innovative way to impact the cultural conversation about how we die. Nurses are highly-trusted health professionals, and have consistent contact with patients and families throughout the trajectory of illness. When nurses practice from this coaching perspective – using compassionate presence, skillful listening, significant questions, reflection, and planning – they help guide individuals living with serious illness to make decisions about care and treatments more intentionally. There is a real need for this integrative, patient-centered care in the months or years before the end of life – and nurses working from a coaching perspective can help meet that need.  

Some questions to reflect on for yourself:

How do you understand your life and work in an ever-changing social context?

What kinds of meaningful action have you been taking in the world around you?

How might you be an even more intentional ‘agent of social change’ for something you care deeply about?