Terminal Agitation

Look, we’ve all been there. It’s 3 AM, and dispatch sends you to a private residence for an “agitated hospice patient.” Your partner’s half-asleep, you’re on your fifth cup of coffee, and this kind of call needs you fully alert. Because what you’re about to walk into isn’t your typical agitation call – it’s terminal agitation, and it requires a completely different approach.

The Deeper Understanding of Terminal Agitation

Let’s dive deep into what’s actually happening during terminal agitation, because understanding this helps us provide better care:

• The Neurotransmitter Dance:
  
  • Dopamine levels fluctuate wildly
  • Serotonin systems become unstable
  • GABA efficiency decreases
  • Norepinephrine surges occur
  • Acetylcholine levels drop This explains why patients can swing from lethargy to agitation so quickly.
• The Metabolic Cascade:
  
  • Organ systems begin shutting down in sequence
  • Liver function decreases, affecting medication metabolism
  • Kidney function declines, changing drug clearance
  • Blood-brain barrier becomes more permeable
  • Electrolyte imbalances worsen Understanding this helps explain why familiar medications might work differently now.
• The Circadian Disruption:
  
  • Sleep-wake cycles become severely disrupted
  • Melatonin production becomes irregular
  • Temperature regulation becomes unstable
  • Day-night recognition decreases This is why agitation often worsens at night (sundowning).
• The Sensory Experience:
  
  • Visual processing changes can cause hallucinations
  • Hearing often remains intact longest
  • Touch sensitivity may increase
  • Pain perception can be heightened Remember this when providing comfort care – they can often still hear you.

How Terminal Agitation Shows Up

What you’ll actually see on these calls can vary, but here are the classic presentations:

• Physical Signs:
  
  • Constant movement of arms and legs
  • Pulling at clothes, tubes, or bedding
  • Trying to get out of bed
  • Facial grimacing
  • Changed breathing patterns
  • Increased sweating
• Mental Status Changes:
  
  • Confusion and disorientation
  • Hallucinations (often of deceased loved ones)
  • Picking at the air
  • Having conversations with invisible people
  • Paranoia or fear
  • Periods of clarity mixed with confusion

Terminal Agitation vs. Terminal Delirium

One crucial distinction every paramedic needs to understand:

• Terminal Agitation:
  
  • Usually fluctuating consciousness
  • Often has periods of lucidity
  • May have purposeful movements
  • Can often be redirected
  • Commonly sees deceased loved ones
• Terminal Delirium:
  
  • More severe cognitive dysfunction
  • Rarely has lucid periods
  • Often has random movements
  • Harder to redirect
  • May have more frightening hallucinations

This distinction matters because management strategies differ for each.

Why Transport Usually Isn’t the Answer

Here’s something they don’t teach enough in paramedic school – terminal agitation is a normal part of the dying process. It’s not a medical emergency requiring hospital intervention. In fact, transport often makes things worse because:

• Patient loses familiar surroundings
• Comfort medications get disrupted
• Family support becomes limited
• Hospital environment increases confusion
• Hospice care plan gets interrupted

I learned this lesson the hard way early in my career when I transported an actively dying patient to the ED. All I did was make their final hours more confusing and separated them from their family. That’s a mistake I promised myself I’d never repeat.

The Home Hospice Reality

When we get these calls, we’re walking into someone’s home during one of the most intimate and challenging moments of their lives. This isn’t a sterile hospital environment – this is Mrs. Johnson’s living room that’s been converted into a bedroom, with family photos on the walls and maybe grandkids’ drawings taped to the bedside table. The family has likely been providing round-the-clock care, they’re exhausted, and now their loved one’s behavior has changed dramatically enough to scare them into calling 911.

Working With Hospice AND Medical Control

Here’s something crucial that a lot of medics miss – while the hospice nurse is an invaluable resource, we legally can’t take orders directly from them. This is how you handle the command structure:

1. First Call: Hospice Nurse
   
   • Get their assessment of the patient
   • Learn about recent medication changes
   • Understand the care plan
   • Get their recommendations
2. Second Call: Medical Control
   
   • Contact your medical control immediately
   • Share hospice nurse’s recommendations
   • Get orders for any interventions
   • Document ALL communication thoroughly
3. Creating the Bridge
   
   • Have hospice nurse speak directly with medical control if possible
   • Keep all parties in the loop about interventions
   • Document times of all calls and orders received
   • Note specifically which physician gave orders

Remember: Even if the hospice nurse says “give 2mg of Ativan,” you MUST get this approved through your medical control. I know it might seem like extra steps, but it’s about legal protection for everyone involved.

Managing Terminal Agitation at Home

Here’s my T.E.A.M. approach for managing these situations:

• T – Time and Timing:
  
  • Document when symptoms started
  • Note if there’s a pattern (often worse at night)
  • Check when last medications were given
  • Assess how long family has been managing alone
• E – Environment:
  
  • Control room temperature
  • Reduce noise and bright lights
  • Keep familiar items close
  • Remove potential hazards
  • Consider using soft music if previously enjoyed
• A – Assessment:
  
  • Check vital signs if appropriate for goals of care
  • Look for underlying causes (full bladder, pain)
  • Review recent medication changes
  • Note family coping level
  • Document baseline mental status
• M – Management:
  
  • Contact hospice nurse IMMEDIATELY
  • Review comfort kit medications
  • Position for comfort
  • Involve family in care
  • Document interventions and responses

Documentation Tips for Complex Care

Your documentation needs to be bulletproof on these calls. Include:

• Times and content of ALL communications:
  
  • When you called hospice
  • When you called medical control
  • Orders received and from whom
  • Names and credentials of all providers
• Medication information:
  
  • What’s in the comfort kit
  • What’s been given already
  • What was ordered by medical control
  • Times and routes of administration
• Decision-making process:
  
  • Why transport was/wasn’t initiated
  • Who was involved in decisions
  • Family understanding
  • Medical control guidance

Real-World Scenarios: Putting It All Together

Let me share some real scenarios that show how this all works together:

• The Middle-of-the-Night Crisis: Mrs. D’s family called at 2 AM when she became agitated. Here’s the sequence:
  
  1. Found hospice paperwork on refrigerator
  2. Called hospice nurse while assessing
  3. Contacted medical control with findings
  4. Got orders for medication from medical control
  5. Administered medication per orders
  6. Stayed until situation stabilized Result: Crisis managed at home with proper authorization and documentation
• The Medication Question: Mr. R’s wife showed us the comfort kit, wanting to give Ativan. Steps taken:
  
  1. Called hospice for patient history
  2. Contacted medical control with findings
  3. Got specific orders for medication
  4. Documented all communication
  5. Noted medical control physician name Result: Proper chain of command followed, patient comfortable
• The Transport Request: Family wanted transport despite hospice plan. Process:
  
  1. Called hospice nurse
  2. Contacted medical control
  3. Had medical control speak with family
  4. Got orders to maintain home care
  5. Documented all discussions Result: Patient remained home with enhanced support

A Final Word: More Than Just A Call

After 20 years on the job, thousands of calls, and countless nights spent with families during their darkest hours, I’ve come to understand something profound about terminal agitation calls. They’re not just medical calls – they’re sacred moments in the human journey.

When we roll up to that house at 3 AM, we’re not just treating symptoms. We’re stepping into the final chapter of someone’s life story. That agitated patient in the hospital bed? They might have been a World War II veteran, a beloved teacher, someone’s cherished grandmother who made the best apple pie in three counties. The family watching anxiously as we work? They’re not just bystanders – they’re people living through one of the most profound transitions they’ll ever experience.

The truth is, managing terminal agitation is as much an art as it is a science. Yes, you need to understand the pathophysiology, know your protocols, and maintain proper communication with hospice and medical control. But you also need to understand that sometimes, the most important thing you can do is simply be present. Be the calm in the storm. Be the voice that says, “This is normal, and we’ll get through it together.”

I’ve learned that these calls are about more than just managing symptoms – they’re about honoring the dignity of the dying process. When we keep someone comfortable in their own home, surrounded by their loved ones and their memories, we’re not just practicing good medicine. We’re helping write the final lines of their story with grace and dignity.

To my fellow medics out there, remember this: Every time you walk into one of these calls, you’re not just being a paramedic. You’re being a guide, a teacher, a comforter, and sometimes, just a steady presence in a moment of chaos. Your knowledge of terminal agitation matters, your understanding of protocols is crucial, but your humanity – that’s what families will remember long after the call is over.

These calls will challenge you. They’ll make you think. They’ll make you feel. And if you let them, they’ll make you a better provider and a better human being. Because at the end of the day, we’re not just treating terminal agitation – we’re helping people navigate one of life’s most profound transitions with dignity, comfort, and understanding.

Stay humble, stay learning, and never forget that while we can’t always change the outcome, we can always impact how the journey unfolds.

I dedicate this article to all the hospice nurses who’ve taught him more than any textbook ever could, and to the families who’ve allowed him to be part of their most intimate moments.

Please watch this video to learn more. 

***WARNING: This video contain video of real hospice patients experiencing Terminal Agitation. Some may find the video to be disturbing. *** Be sure to follow Hospice Nurse Julie on Youtube-  https://www.youtube.com/@hospicenursejuli