What Matters to Patients at the End of Life? Join the Conversation

When I was working as an inpatient oncology nurse, I had the pleasure of taking care of a patient that I will refer to as Glen. I met Glen in the last days of his life when he was admitted to the hospital for uncontrolled pain related to cancer. Glen was a pretty quiet and reserved man, but he shared with me about his life, his journey with cancer, and now his reckoning with death. During one of our conversations, Glen shared with me that he was saddened that was admitted to the hospital because his Shaman hadn’t yet performed a traditional smudging ceremony before he died. Glen was Native American, and this ceremony was one that was sacred to him.

Although Glen’s code status (one’s wishes in an emergent situation if their heart or lungs stopped working) was known to the healthcare care team, Glen did not have an advance directive/advance care plan.

Like Glen, 2 out of 3 adults in the U.S. don’t have an advance directive.

Advance care planning, or ACP, is defined as, “a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of ACP is to help ensure that people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness.”

Advance care planning shifts from healthcare providers asking the question, “What is the matter?” to asking the patient, “What matters to you?”

For Glen, the answer would have included his spiritual beliefs and practices.

These conversations are often avoided when healthcare providers (nurses, doctors, social workers, chaplains, etc.) feel ill-equipped to ask patients questions about their religious/nonreligious traditions and the role they play in their life. However, failing to have these conversations can be even more detrimental to the patient, their family, and the healthcare team.

In order for these conversations to regularly occur and be effective, healthcare providers must be prepared to discuss with the patient what matters most — whether it’s their worldview, culture, religion, or something entirely different.

This can be done through equipping healthcare providers with interfaith skills and providing opportunities for providers to practice such skills. Healthcare workers must be able to engage across lines of differences, including cultural and religious differences. This requires providers to have an awareness and understanding of their own beliefs, as well as a sense of cultural curiosity and humility in advance care planning conversations with patients.

How does your religious tradition/worldview approach advance care planning? Do you have an advance care plan?

Although Glen didn’t have an advance directive, learning what mattered most to him allowed us to connect with a Shaman who completed the smudging ceremony with his family at his bedside. I hope that by training healthcare providers with the skills needed to engage in these conversations, they will feel more confident in talking with patients early and often about what matters most in the face of a serious illness.

Interested in learning more?

On Tuesday, June 28 at 6pm CST the Interfaith Healthcare Cohort, a group within the Interfaith America Emerging Leaders Network is having a session called, “Let’s Talk: Incorporating Worldviews in Advance Care Planning Conversations.” This session is open to anyone who works in healthcare and will use both a practical evidence-based guide for Advance Care Planning conversations as well as engage in storytelling and small group discussions around worldviews on death and dying practices. This virtual session is a safe space for healthcare providers to learn from each other and develop skills needed to have these difficult conversations.

Event registration