Most of us have an expectation of what dying “should” look like. Maybe it’s from what we’ve seen on TV. Maybe it’s from personal experience, being at the bedside of someone who’s passed away.
But just as no two lives are the same, no two deaths are the same either.
As a hospice nurse at HopeHealth Hulitar Hospice Center, Justin Millan, RN, cares for patients with especially complicated end-of-life needs. As part of his role, he helps loved ones understand the lesser-known symptoms that can be part of the dying process.
He also reminds them that, no matter how complicated a person’s symptoms, their hospice team has tools and training to keep them comfortable.
> Learn how to get started with hospice care.
Every birth is unique. So is every death.
While hospice teams can make educated guesses about a person’s timeline and symptoms, ultimately, it’s impossible to predict what will happen in a person’s final hours, days and weeks. To manage everyone’s expectations around the dying process, Justin often starts with the analogy of childbirth.
“When a person comes into the world, their birth can go many different ways,” he says. “Labor can go quickly, or it can be protracted. It can go smoothly, or it might require ICU-level care.”
The same is true for the dying process.
“Dying is a mirror image of birth in some ways,” Justin says. “For some people, it is a rather quiet and peaceful process. But many people experience much more extreme changes.”
For all the unknowns, here is what’s certain: Whatever arises, your loved one’s hospice team will be by their side.
> Related: In the halls of Hulitar: An inpatient hospice nurse opens up
Why isn’t the dying process the same for everyone?
As a person approaches death, their body’s various organs begin to shut down. This can happen in different orders and combinations, depending on the person.
“Think of the electrical panel in your home,” Justin says. “There’s the main power switch: When that goes, everything is off. But there are also separate circuit breakers and fuses — a light can go off in the living room, and the fridge will stay on in the kitchen.”
When a major organ like the heart stops working, it’s like flipping the main breaker: Everything shuts down at once. But in many cases, less-vital organ systems go first, sometimes flickering on and off before shutting down entirely. When that happens, the dying process can take longer and include more visible symptoms.
> Related: “Dying is an important part of living”: Lessons from a hospice volunteer
What does it mean if my loved one is agitated, in pain or having other extreme symptoms?
Some people enter into their final days and hours quietly, with few external clues. But for others, the dying process sets off more distressing physical reactions. That can include pain, changes in breathing, and nausea and vomiting. Their skin may change in color and appearance, including more open wounds and bleeding. They may hallucinate.
What’s behind these symptoms? We understand some better than others. For instance, hallucinations seem linked to changes in how the body processes sight and sound at the end of life, and how the brain interprets those signals. Wound-related issues reflect how the skin’s protective barriers are breaking down.
Other symptoms are less straightforward. For example, experts don’t know exactly what triggers “terminal agitation” — a burst of strength and restlessness at the very end of life — just that it’s more common than many people realize.
Whatever your loved one may be experiencing, take heart: Hospice teams specialize in treating the full range of these symptoms, so that your loved one’s transition is defined by peace and dignity.
“We are fortunate to have lots of different treatments and medications to make each person as comfortable as possible,” says Justin.
> Related: Checklist: What to look for in a hospice provider
What can I do if my loved one is experiencing a long or difficult death?
Many aspects of the dying process are hard to witness. But if your loved one is having a difficult death, it doesn’t mean something has gone wrong with their care or any of their medical decisions. It’s simply their body’s natural progression through this complicated transition.
All that said, it’s upsetting when a loved one’s final days don’t unfold in the way we expected. Lean on your hospice team — for your loved one’s comfort, and for your own well-being.
“Our clinical team is here to bring your loved one peacefulness, dignity, comfort. Our social workers and chaplains can help you and other family members cope emotionally and spiritually,” says Justin.
“Remember,” he adds, “it’s okay to ask questions, seek support, and take the time you need to process what’s happening.”