Talk about death, but live your life: What people working in end-of-life care have learned

Elena Sheppard
·7-min read
Close-up of a caregiver's hands holding the hands of a senior woman patient
People who work in end-of-life care often have a special perspective on death. (Getty Images)

Eventually, we are all going to die. It’s a reality that most people are uncomfortable with and do everything they can to avoid thinking about. But for people who work in end-of-life care, such as hospice workers and death doulas, death is both a fact of the job and a part of their everyday reality.

While the work may sound grim, those who do it say that their daily proximity to death doesn't cast a shadow over their lives; rather, it has enabled them to more purposefully celebrate life’s beauty.

“People think hospice nursing is depressing, but it's really amazing because people are so vulnerable, which helps you be vulnerable,” Julie McFadden, a hospice nurse known by millions online as Hospice Nurse Julie, tells Yahoo Life. “You just see love in action.”

Yahoo Life spoke to hospice professionals to hear the life lessons they’ve learned by working so closely with death. Here’s what they said.

For many, working with patients in their final days inspires a deeper appreciation for health and how to best preserve it. “After watching the horrible deaths my patients with alcoholic cirrhosis went through, I quit drinking,” says hospice nurse Penny Smith, who co-hosts the podcast Death Happens and manages the popular social media account Hospice Nurse Penny.

McFadden says that hearing patients express regret for taking their health for granted motivated her to more fully appreciate her own health in the moment. “People don't realize how lucky they are to not wake up in pain,” she says. "[Some patients] will stay stuff like, ‘I wish I would have appreciated being able to get up and walk and do whatever I wanted to do.’”

The end of life can be sad, but those who work with people who are close to death testify to the importance of a sense of humor. “The things that have stayed with me are the moments of joy and humor,” says Halley Harris, a social worker and co-host of the Death Happens podcast. “Like one patient’s T-shirt that they showed me that said ‘Cremation is my last chance for a smoking hot body.’”

Others in hospice care say dying patients' regrets have inspired them to seek out more humor and fun in their lives. Dr. Christi Bartlett, medical director of inpatient hospice at the University of Kansas Health System, remembers a patient who was diagnosed with a rapidly progressive cancer. “As she was facing death, she looked at me and said, ‘I should have had more fun,’” Bartlett says. “It felt like a lament but also a challenge for those of us in the room to simply have more fun.”

“The biggest lesson I’ve learned is that no one gets through life alone,” palliative care physician Matt Tyler tells Yahoo Life. “In those final moments, the things people say are almost always about relationships. ‘He was a wonderful father,’ or ‘She was the best sister.’ What sticks with me is that we are remembered for who we were to others.”

Lisa Pahl, a hospice social worker and co-creator of The Death Deck, a party game that helps people confront end-of-life issues. remembers moments when patients regretted the fact that relationships weren’t their top priority. One relatively young hospice patient who lived alone and had few people in her life stands out. “When we began discussing a plan for when she declines and needs more help, she became teary," Pahl tells Yahoo Life. "She shared that she wished she had spent more time nurturing friendships. ‘Then maybe I wouldn’t be alone now, at the end of my life.’”

Acknowledge your mortality — and talk about it

Those who work in end-of-life care understand that most people don’t want to talk about death. But they agree that doing it anyway is the best way to make the experience peaceful — not just for the dying, but also for their loved ones.

“When I walk into a new hospice patient’s home and there have been open conversations about the fact that this person is in the final stage of their lives, and there’s been some preparation such as making burial plans and completing a will or trust, there is a sense of peace and calmness,” says Pahl. “When the person or family are fearful of the topic of death and dying and have not had these meaningful conversations, there tends to be a lot of anxiety and chaos.”

Bartlett says that knowing your loved one’s end-of-life wishes can help avoid a great deal of pain for all. “We see people get stuck in the hospital and on machines that can no longer speak for themselves," she says. "It is incredibly difficult for loved ones to make decisions on their behalf if they never had open and honest discussions about their wishes."

Bartlett adds that in those instances patients often end up getting aggressive treatments leading to a quality of life they may not have chosen for themselves. “The people who have made a point to talk with their families about their wishes are much better protected from these unfortunate outcomes, and their families typically feel much better equipped and at peace when it comes time to make hard decisions,” she says.

The body knows how to die

McFadden says that watching people die has helped her ease her own fears about mortality. “Our bodies are built to die," she says. "They have built-in mechanisms like shutting down the hunger and thirst mechanism so you don’t feel hungry and thirsty at the end of life. Then your calcium levels rise usually, so then you feel really sleepy. People always think it's this big, painful, awful event, but for the most part the actual dying process is peaceful and the body knows how to do it.”

Constant exposure to death has made end-of-life workers evermore grateful for their lives. “Life is for living — don’t wait to start until you’re dying!” says Smith. “Tomorrow isn’t promised for anyone.”

Bartlett says that her work helps her to feel gratitude in the moment. “I have stopped with the notion of ‘When I finally XYZ, then I will be happy. There is always something else out there we want to accomplish or achieve and it is easy to miss the most amazing things in the present, while we are waiting for that ‘thing’ to happen. It is critically important to look for and embrace the beauty of exactly where I am right this moment.”

Dr. Sunita Puri, author of That Good Night: Life and Medicine in the Eleventh Hour, says that her patients have reminded her that living life isn’t always about being joyful; it’s about experiencing it all. “One of my favorite patients wrote me notes because oral cancer devastated his mouth and throat," she tells Yahoo Life. "I still have the note that says, ‘You cannot have joy in this life without the pain. Embrace both. Thank them both for what they can teach you.' It's a philosophy that I have kept with me ever since.”

“We all are going to die. To me, that statement is not depressing,” says Pahl. “When we think about the fact that our time on earth is finite, it can help guide us to live our best lives. I think about the regrets that I hear from people in their final days, and try to live my life with intention and joy.”