Getting Comfortable Speaking About End of Life Care and Death

Editor's note: Read Ellen's first article titled "It Isn't Over Until It's Over: Deciding to Stop Chemotherapy" here.

An early memory: At three years old, nine of our family members shared my parents' home on Long Island. Besides our family, we were fortunate to include my grandmother and two great-aunts, who spoke only Italian. As we settled into a new home, there was one fateful night when my favorite great-aunt, Dora, was taken away. Without any explanation, several men lifted her out of bed and onto a stretcher. She never returned home.

Aunts, uncles, and cousins showed their sadness. And my three-year-old self soon appreciated this was not a joyful family occasion like Christmas. There was no invitation to participate. Once again, a common failing around death or loss in the family is to assume children do not experience the need to mourn.

The beginning of unresolved grief

An unfounded belief is that feelings will pass if we don't acknowledge them. In effect, we are more likely to hold unresolved grief or the grief of our ancestors before us. This may start a coping pattern that becomes part of our baggage rather than the source of our resilience. Unknowingly, we begin to acquire traditions and unhealthy responses to grief that set a stage for all future loss.

Do we dare speak of death?

From a time before we walked this earth, birth and death presented as a reality of life. However, the subject of death and dying raises painful feelings familiar to that hot stove avoided as a child.

The knowledge of pending death often stimulates fear and waves of emotions as individuals begin to consider the meaning of loss. Sometimes, choking back tears and changing the subject is the best one can bear. Through this episode of avoidance, a powerful subject known as anticipatory grieving emerges and can take over.

Society often lacks guidance on how to grieve or what to say to someone who is dying. Consequently, even those closest to the dying individual may distance themselves. This form of coping, characterized by isolating the dying, perpetuates a behavior of avoidance. It conveys the notion that nothing more can be done when, in fact, there is still so much to be said.

Engaging in collusion

Unfortunately, many conversations fall into a pattern with the question, "So, how are you these days?" Depending on who is asking, I might respond that "I'm just fine." Admitting to the physically painful days and nights due to tumor growth feels like an undue burden to place on those around me. I frequently shield others, as well as myself, from acknowledging this reality. This can then obscure the situation and diminish the likelihood of receiving the support I need.

The challenges of dying

Inevitably, facing death is one of the greatest challenges in life and love. In fact, the depth of love can make loss even more difficult. Dying individuals confront the loss of everyone they know. Opportunities for forgiveness or to be forgiven may slip away.

Since death represents the loss of the present and the future, the awareness of dying creates a behavioral change for those previously comforted by planning, organizing, and instilling hope. While graduations, weddings, and additions to the family could be a source of joy, they now create additional pain.

Are there choices?

Because there is so much to learn about accepting death, an incredible paradox develops. The dying person becomes the teacher and can only hope supporters will listen.

• I hope to die with dignity and with limits to the burden I place on others. This is my path, the path I found most helpful in life.
• None of us asked for a chronic progressive illness. However, there is something we can contribute to this phase of life.
• Speak to those around you with as much honesty and openness you can.
• Be clear when and what you need in terms of support.
• Alert others that you may become changed by this experience. You may not always be able to take on the family roles you previously assumed.  Ask them to work with you to take over some of these burdens.
• Most definitely this a time to let people know what meaning they hold in your life.
• Offer love.
• Request love in a like manner as even in dying, we are not meant to be alone.

Whether you are learning to live with a chronic progressive illness or are facing dying and death, I hold each of you in my thoughts. You are truly a warrior.

Editor’s Note: We are extremely saddened to say that on August 9, 2024, Ellen Reed passed away. Ellen’s advocacy efforts and writing continue to reach many. She will be deeply missed.