Oftentimes, the importance of honoring the end of life—as we honor and celebrate birth—is lost. This is a concept I wrestled with during the earliest stages of my career as a social worker. Understanding how to best create opportunities to engage in open and honest conversations about an individual’s wishes at the end of life continues to be at the forefront of my work. Specifically, how can we ensure people have what they need at the end of life? How can I be part of the solution to help people die well, and, equally important, normalize the grieving process?
At age 12, I experienced my first loss when my “Pappy” died unexpectedly. Dealing with the trauma of this sudden loss was difficult, but my family’s lack of acknowledgement regarding the end of his life left me confused. I could tell it was hard for my loved ones to talk about Pappy, as I watched them skirt around the topic and refrain from putting words to their tears. I distinctly remember an older relative telling me to stop crying during the funeral, which added to my confusion and pain. These feelings stayed with me throughout my young life as I decided to begin a career in social work. And this experience and others highlighted for me the lack of understanding many individuals have about grief and the grieving process.
I spent the early part of my career as a licensed drug and alcohol abuse counselor, helping clients work through their anxieties around familial relationships, problems functioning at school, trouble sleeping, and routine feelings of panic and uneasiness, among others. It did not take long to recognize the detrimental effects of grief and loss, which I found are often underlying symptoms to larger mental health issues. Many clients were dealing with complicated grief—loss of a loved one, loss of a relationship or friendship, loss of some sort of stability, the list goes on. At its core, grief is a universal experience that begs for conversation, however, we have yet to fully normalize the discussion.
Grief and loss have contributed immensely to our current mental health crisis, which has been exacerbated over the past two years by the impact of the COVID-19 pandemic. Individuals across the world have been forced to grieve in the silence of their homes and weather the impact of social isolation. During this time, a record number of people have not only endured physical loss, but also a loss of identify, of independence, and of human connection. I think back to my earlier work and am reminded that we must continue to elevate the conversation around death, dying, grief, and loss.
‘Grief and loss have contributed immensely to our current mental health crisis.’
Fast forward to the 14 years I spent as President and CEO at Nathan Adelson Hospice, where I have countless memories of patients dying well and their loved ones being supported through their grieving journey. I of course also witnessed hardships and exceptionally difficult grieving processes. A few distinct memories have shaped the way I think about these emotions and continue to influence my work to this day.
One of our patients, a man named Ron who was only 15 years older than me at the time, was in our inpatient unit for several weeks. Ron was a professional comedian and storyteller who lived a colorful life. He was married to a committed and loving wife, who supported him as his illness came on quickly. I often spent time with him taking walks around the inpatient unit. One day, he stopped our upbeat, but trivial conversation and looked at me with tears in his eyes and IV pole in hand and asked, “Carole, am I dying?” The question took me by surprise, and I was left to draw upon everything I had learned about the end of life to date. All I had to fall back on were the core tenets of my training as a social worker: honesty, transparency, and ultimately compassion. As much as I wished I could offer Ron a false sense of hope, I knew I owed it to him to be direct, however painful it may be.
I drew in a breath, looked him in the eye, and lovingly said, “Yes, Ron, you’re dying.” We looked at each other, both tearing up. In the following weeks, Ron went on to have a peaceful death surrounded by his loved ones. I remember our conversation like it was yesterday, both the pain of being honest juxtaposed with the strong feelings of knowing I acted in good faith. I thank Ron for such an important lesson, a gift that continues to shape my work today and ultimately influenced this Generations Journal issue.
Another meaningful experience that continues to inform my work to this day are my memories of a former patient, named Cliff. He spent his career as an elementary school teacher and principal, and Cliff’s unwavering commitment to educating children was truly admirable. Unfortunately, he was in denial about the fact that he had been sick for the greater part of a year—refusing to seek medical care for an undiagnosed illness—until it was too late. The consequences of that decision resulted in him needing hospice care.
I vividly remember Cliff’s incredible sense of humor, which he called upon to comfort his friends and family during this time. While he was with Nathan Adelson Hospice, we became close, sharing cups of coffee and conversations daily. Throughout the time I knew him, Cliff and I had many meaningful discussions about his end of life and how he wanted to be remembered for many years to come. I was keenly aware that Cliff had made peace with death, allowing him to live life to the fullest in his final days.
‘Cliff had made peace with death, allowing him to live life to the fullest in his final days.’
One of my many visits with Cliff landed on April Fool’s Day. Cliff said, “I’ve got a grand idea,” grabbed his cell phone, and made a call to his elementary school—a place where he had spent more than two decades educating and mentoring youth. He asked his executive assistant to put him on the overhead paging system, then exclaimed, “Guess what, kids! It’s going to be a great day—I’ve ordered pizza for everyone!” Then he turned to me, smiling, and waited a beat before booming back into the phone, “April fools!”
I’m teary-eyed as I write this and think back on how alive Cliff was in that moment. His sense of humor and commitment to education shined during some of his darkest hours. Cliff’s journey allowed me to witness firsthand the power of moving from denial to acceptance.
These memories stay near and dear to my heart in the current stage of my career, at the helm of the National Partnership for Healthcare and Hospice Innovation (NPHI). Working with not-for-profit, community-integrated hospice and palliative care organizations across the country is truly the most meaningful work of my career. I look back at my life and career milestones, and every day I am grateful to be a small piece of the solution that helps people die and grieve well.
I’m honored to be the guest editor of the Fall 2022 Generations Journal, which focuses on death and dying. Reading and learning about these often uncomfortable and complicated concepts in such a high caliber publication is significant, and it is my hope that this issue will lead to more conversations around these topics. It has been a privilege to see how a single individual starting a conversation with a loved one about their end-of-life wishes can make all the difference in ensuring a comfortable and meaningful death. The process of creating this journal has truly aligned with my unwavering commitment to be part of the solution in end-of-life care. I hope you find the following articles to be a catalyst for honest and open conversations with your loved ones, always remembering that death, dying, and grief are more than five-letter words.
Carole Fisher is president of the National Partnership for Healthcare and Hospice Innovation in Washington, DC.