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The 95% No One Talks About in End-of-Life Care. End of Life & Community Deathcare

1 day ago
4 min read

At a Glance


Most people think end-of-life care is primarily provided by doctors, nurses, or hospice. In reality, much of the support happens at home, where family and friends take on the day-to-day responsibilities of caregiving. That’s why community deathcare matters. It reminds us that while healthcare professionals provide essential medical care, our communities play an equally important role by offering practical help, companionship, and emotional support. Small acts of kindness can ease the burden on caregivers and help families feel less alone during one of life’s most difficult seasons.


  • Most end-of-life care happens outside of hospitals and healthcare visits.

  • Family caregivers often carry the greatest physical and emotional responsibility.

  • Community deathcare encourages friends, neighbors, and local organizations to share the work of caring.

  • Practical support, such as preparing meals, running errands, or sitting with someone, can ease the burden on family caregivers.






For many years, I assumed that when someone became seriously ill, healthcare professionals provided most of the care. It seemed logical. Doctors managed treatment. Nurses monitored symptoms. Hospice stepped in when someone reached the end of life.


Then I became an end-of-life doula. One of the biggest surprises wasn’t learning about death. It was realizing how much of the journey happens when no healthcare professional is present.


Most of life, even at the end of life, happens at home. It happens while a spouse is trying to remember medication schedules. While an adult child is answering phone calls from worried relatives. While someone is making dinner, taking out the trash, walking the dog, paying bills, and sitting quietly beside the person they love. Those moments rarely appear in brochures about hospice or palliative care. But they make up the majority of a family’s experience.


Professor Allan Kellehear, one of the pioneers of the Compassionate Communities movement, describes what he calls the “95% Rule.”* His point is that healthcare professionals are present for only a small portion of a person’s end-of-life journey. Most of the experience happens with family, friends, neighbors, and community. The question becomes: What are we doing with the other 95%? As an end-of-life doula, I've seen that question play out again and again. Families usually aren't overwhelmed by a lack of love. They're overwhelmed because they're trying to do everything themselves.


What Is Community Deathcare?


Community deathcare is the idea that caring for someone who is seriously ill or dying isn’t solely the responsibility of healthcare professionals. Medical care is essential, but people also need practical help, emotional support, companionship, and connection.


Long before hospitals, hospice programs, and modern medicine, communities cared for one another. Families gathered. Neighbors brought meals. Friends stayed at the bedside. Faith communities offered comfort. People shared the work because they understood that no one should have to do it all alone.


Today, many of us still want to help. We simply don’t know how. We worry about saying the wrong thing. We wonder whether we’re intruding, or assume the family already has enough support. Often, none of those assumptions are true.


The Invisible Work of Caregiving


When I talk with family caregivers, the conversation is rarely about medical procedures. Instead, it’s about exhaustion from coordinating appointments, keeping relatives informed, managing medications, preparing meals, helping someone safely get out of bed, handling paperwork, and trying to hold the family together while quietly grieving. These responsibilities don’t stop because hospice visited that morning.


This is where community can make an enormous difference. Sometimes the greatest gift isn’t doing something extraordinary. It’s taking one ordinary responsibility off someone else’s shoulders: walking the dog, delivering dinner, driving someone to an appointment, staying with a loved one so the caregiver can shower or take a short walk, or making a few phone calls so the family doesn’t have to repeat difficult updates again and again. Small acts of care often create the greatest sense of relief.


Why We’ve Forgotten How to Show Up


Many of us weren’t raised seeing death as part of everyday life. Previous generations were often more connected through extended families and neighbors. Today, families may live in different states. Neighbors may barely know one another. We’ve become accustomed to solving problems independently. As a result, many people genuinely want to help but don’t know what helping looks like.


One of the most common offers people make is, “Let me know if you need anything.” It’s a kind offer. It’s also one that overwhelmed caregivers usually can’t answer. A more helpful question might be: “I’m going to the grocery store tomorrow. What can I pick up for you?” Or better yet: “I’m bringing dinner over on Thursday.” Specific offers remove the burden of deciding, organizing, and asking for help.


We All Have a Role


You don’t have to be an end-of-life doula to make someone’s journey easier. And you don’t need medical training to sit with someone who is lonely. We can all listen, cook a meal/pick up food, rake leaves, or check in after everyone else has gone home. Community deathcare reminds us that caring for one another is something we practice together. That doesn’t replace hospice; it strengthens it.


A Different Way to Think About Care


One of the greatest lessons I’ve learned as an end-of-life doula is that people rarely remember every medical detail. They remember who showed up, the friend who folded laundry, the neighbor who walked the dog, and the family member who simply sat beside them without trying to fix anything. Those moments become part of the story families carry long after someone dies. Perhaps that’s the real question behind the 95%. Not whether healthcare professionals are doing enough. But whether we’ve remembered that caring for one another has always belonged to all of us.


As you think about your own community, consider these questions:


  • If someone you loved became seriously ill tomorrow, who would be part of your circle of support?

  • Is there someone in your life who could use a specific offer of help this week?

  • What small act of kindness could make a difficult day a little easier for another family?


Community isn't something we discover during a crisis. It's something we create long before one arrives.


Links/Resources



*“Compassionate Communities: A Public Health Approach to Palliative and End of Life Care.” Applied Research Collaboration East of England , National Institute for Health and Care Research, https://arceoe.nihr.ac.uk/research-implementation/research-themes/palliative-and-end-life-care/compassionatecommunities. Accessed 20 July 2026. 


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