top of page
Search

The System Isn’t Broken. It Was Built This Way: Equity in Palliative Care 

  • Feb 19
  • 5 min read







Palliative care is supposed to offer support, comfort, and dignity near the end of life. That’s the idea. But the way it’s delivered often assumes things not everyone has: a stable home, a family caregiver, transportation, and insurance. It’s a system that works if your life fits a specific mold.  


But for many people, it doesn’t. Those living without housing, facing deep poverty, or cut off from traditional support networks are often excluded from the very care that claims to serve all. As Ashley Mollison,  an advocate and researcher with the Palliative Approaches to Care in Aging and Community Health Research Program at Institute on Aging & Lifelong Health  at the University of Victoria, put it: “[These people are told] you can’t die here." It’s something people living in shelters, transitional housing, or even tents are told when their illness progresses. Not because there’s no will to care, but because the system wasn’t designed to include them. 


Real equity in palliative care means more than expanding services. It means asking uncomfortable questions about who those services were built for, and who continues to be left out. 


Who Was the System Built For? 


The design of most palliative care assumes a few things: 


  • That you have a home. 

  • That you have family, or someone close, who can care for you. 

  • That you can take time off work or access leave. 

  • That you have transportation to get to appointments. 

  • That you have insurance or public benefits that actually cover your needs.

     

These are not small assumptions, but they are built into how care is delivered, who qualifies for services, and where those services are offered. If you live in a city, have a stable income, and a reliable support network, the system will likely work for you. But that is not everyone’s reality. 


Take, for instance, who the system sees as “family”: biological relatives or legally recognized next of kin. But for many, their closest relationships are with friends, outreach workers, or shelter staff. These connections are often invisible to the system. So when someone becomes seriously ill, the people who’ve actually been there all along are shut out of care decisions. 


The problem isn’t just a matter of administrative oversight. It’s the structure of the palliative care system itself, built on assumptions about who deserves care, how that care should look, and how it is provided. These assumptions affect who gets pain relief, who dies alone, and who has a say in their final days. The problem isn’t that the system is failing. The problem is that the system was never built for everyone to begin with. 


Who Gets Left Out? 


People who fall outside the system’s narrow design are often those with the greatest need. Unhoused individuals are frequently denied consistent access to care, especially as their health declines. Ashley described how people living in shelters, transitional housing, or tents are sometimes told, directly or indirectly, that they “can’t die here.” Not because anyone wants to abandon them, but because the physical and policy infrastructure isn’t set up to support them through serious illness or the dying process. 


Others who are routinely left out include: 


  • People without legally recognized family members 

  • Individuals in congregate housing without private space 

  • Those in rural or remote areas without nearby providers 

  • People with mental health or substance use conditions who face stigma from care systems 

  • Older adults aging without children or traditional caregivers

     

There’s also the issue of accelerated aging. People who have spent years exposed to violence, chronic stress, and unstable conditions often experience serious health issues far earlier than expected. Someone who is 50 may have the physical or cognitive health of someone decades older. But the system doesn’t adjust its timelines or definitions accordingly. 


The result? People who are deeply unwell may still not “qualify” for the kinds of support others get by default. Or they may qualify on paper, but find that services cannot meet them where they are: in a shelter, in a shared room, or without someone to speak on their behalf. And these are not edge cases.

 

Why ‘More’ Isn’t Enough 


When we talk about improving equity, we often start with the idea of expanding access. More services. More funding. More staff. 

However, if the structure remains the same, more does not necessarily mean better. “Home care” doesn’t help if someone doesn’t have a home. Asking a person to designate a “primary caregiver” fails if their closest support is a shelter worker or a longtime friend. Services that require transportation, private space, or online forms all assume resources that many don’t have. 


Ashley shared that for many people experiencing homelessness, the first time they receive compassionate, comprehensive care is when they are finally identified as dying. That’s often the moment the system begins to treat them as fully human. Only then do they stop being seen as a “case” or “addict,” and start being seen as someone with pain, preferences, and a story. That reality is why adding more of the same won’t fix the problem. We have to change what we’re building, not just how big it is. 


A Better Way Forward - Equity in Palliative Care


Some programs are starting to shift the model, not by stretching existing systems, but by meeting people where they are. Mobile palliative care teams are one example of this. These teams include physicians, nurses, outreach workers, and in some cases, peer staff with lived experience. They offer support in shelters, tents, low-income housing, and anywhere else people live and die. They ask questions that mainstream care often skips: 


  • What does good care look like to you? 

  • Who do you want around you? 

  • What matters most as you continue to live with illness? 


These teams build trust first. Then they provide care that fits. 


Another promising approach is recognizing the natural support networks already in place, such as friends, neighbors, and frontline staff - the people who are already doing the work, often invisibly. Including them in care planning and decision-making honors the reality of people’s lives and strengthens the system from within. But these models are still the exception. For equity to be real, they need to become standard. And that means including marginalized communities not just as recipients of care, but as co-designers of it. Equity isn’t a sentiment. It’s a structure. And it requires work. 


If we want palliative care to reflect dignity, it has to reflect reality. That means designing systems that include people who don’t have homes, who don’t have family, and who have been told, in words or actions, that they don’t belong. We can’t fix a system by expanding access to a model that only works for some. We need to ask harder questions about what care looks like, and who it’s built for. Until we do, equity will remain out of reach. And people will continue to be left behind. 

 

Links/Resources 

Comments

bottom of page