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End-of-Life Care: Your Patient Has Died, Now What?

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End-of-life care is intimate and unique for every patient.  As a nurse, when your patient dies, you might be thinking now what should I do? 

Maybe this is your first death and you’re anxious about what you should say. 

Perhaps you’ve never met the patient/family and you’re worried about building trust. 

Regardless of the situation, your role is to comfort the family and take care of the patient. 

You should also remember to provide the patient with the same dignity and respect you would give to them if they were alive.

My First Patient Death

I’ll be honest.  I had only been off orientation for less than a month before I experienced my first patient death. 

And to be frank, I was not ready when it happened.

To begin, I didn’t even recognize the signs of transition to active death. 

To make matters worse, I had never performed end-of-life care.

(I was busy doing other tasks like the new nurse I was.)

 The CNA came to me and said your patient is dying.

My first thought was: “Please, not on my shift!”

My next statement was: “How do you know?”

She was awesome and walked me through all the physical changes and helped me prepare the family.

Ultimately, when the patient died, she taught me how to perform post-mortem care.

She was so compassionate and took her time with me and the family.

Most of all, I remember how respectful she was to the patient.  She bathed her, dressed her, and combed her hair.  All while teaching me who to call, and what to say. 

My charge nurse was also amazing.  It was at that moment that I knew I wanted to learn everything I could about caring for the dying including post-mortem care.

Where Hospice Patients Die

While nearly 80% of people say they want to die at home, only 20% do. 

Believe it or not, many people still end up dying in acute care settings or nursing homes.  (That’s a discussion for a different day!)

However, as a home hospice nurse, you are more likely to perform death visits in the patient’s personal residence or nursing home.

Yes, patients absolutely die in hospitals while on GIP and at hospice houses. 

While this article is focused on home deaths, the steps of post-mortem care can apply to most settings. 

Regardless of where your patient dies, these nursing tips can help you provide the best care to your patients and their families.

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The following information is for Healthcare Professionals

Pronouncement During End-of-Life Care

From the moment your patient enrolls in hospice, you should begin education with the patient and family.

For starters, you should make sure the family knows to call the hospice agency when the patient dies.  They should NOT call 911, the hospital, or you!

One of the roles of hospice is to confirm the absence of vital signs and comfort the family.

TANGENT ALERT:  If you aren’t going to show up, why do they need you!  There are few things that break my heart more than hearing from patients that the hospice didn’t show up for the death.  AGAIN, why do they need you if you’re not even going to do the basics! 

It happens folks, especially in the nursing home setting.  It also happens when you try to be the hero and have the patients call your personal cell phone.

But I digress!

Family praying at patient's bedside at end-of-life care
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Family praying at patient’s bedside.

How to Perform a Pronouncement

1. Observe the absence of respirations.  It’s not unusual for a patient to have long periods where they stop breathing (apnea).  While it can be difficult to watch while the whole family is anxious and looking over your shoulder, take your time.  This will also give you time to think of what you want to say to the family.

2. Assess for signs of life.  Check for a heartbeat, respiration, pupil fixation.  Do not skip this step.  Remember, your confirmation can offer peace and closure to the family. 

3. Listen for a heartbeat with your stethoscope for a full for 2-3 minutes.  Some organizations require that you listen for 5 minutes.  Regardless, of the time, don’t underestimate how important this step is to the family.

4. Condole the family and offer to assist with calls that may need to be made to family, friends, or spiritual care.  This is also a good time to call the coroner’s office, physician, and funeral home.

Expert-Tip:  Once you’ve pronounced the patient cover them with a light sheet or blanket to their shoulders.  Fold their hands and place them on their stomach.  (Never cover the patient’s face or head unless instructed by the family.)

Your Patient Had Died, Now What?

Now that you have given the family time to grieve, you can begin post-mortem care also known as “preparing the body.”

Before you begin, you can offer to allow the family to participate. 

In my experience, this can be traumatic for some individuals.  In most instances, I perform end-of-life care on my own or with another staff member.

For home hospice nurses, you will likely perform these tasks by yourself.

Patient with hands folded over stomach at end-of-life care
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Patient with hands folded over the stomach.

Post-Mortem Care Tips

Even though your patient is dead, make to maintain their dignity.  After all, you are being entrusted with someone’s loved at a very delicate time.

**You should perform post-mortem care within the first 1-2 hours after the patient’s death and no more than 4 hours after the death due to rigor mortis (stiffening of the muscles).

  • Wear PPE and follow universal precautions
  • Lay the patient flat and remove all but one pillow
  • Remove all jewelry and watches (except wedding rings)
  • Remove all tubes, IVs, and catheters (if not coroner’s case)
  • Give your patient a bed bath as if they were alive
  • Clean their mouth and replace dentures if necessary
  • Comb or brush their hair
  • Do not shave the patient as this may cause unintentional bruising.  (The funeral home can do this later.)
  • Place one pillow underneath their head to help keep the mouth closed
  • If mouth won’t close, place a small, rolled washcloth or towel under the patient’s chin
  • Close the eyes by pressing lightly on the eyelids (Sometimes the eyes will not close, reassure the family that the funeral home can help with this.)
  • Ensure wound dressings are clean
  • Use a chux or adult diaper under the buttocks to catch any fluids that may leak from the body
  • Dress the patient and cover with a sheet or blanket to the shoulders.
  • Leave the patients hands on the stomach so that they family can touch their loved one
  • Place a chair next to the bed in case the family wants to sit at the bedside
  • Fold clothes and give them to the family
  • Assist family in disposing of hospice comfort medication

End-of-Life Care in a Nursing Home

While this might seem like a no-brainer, you should show up if the patient dies, even if it is a nursing home.  I’ve had so many nurses say that they did not go to death because the nursing home staff took care of everything.  In some instances, this is ok, however, sometimes families are disappointed when their hospice nurse doesn’t show up.

Pro-Tip: When working with the nursing home, clarify the process for handling a death.  Also, you should understand their processes and expectations.

Furthermore, if you’ve built a relationship with the NH and family, you shouldn’t treat the death any differently. 

Ways to Assist the Nursing Home  

If you are new to hospice, you might not realize how much of a help you are to the nursing home. For instance, nursing homes can be short-staffed and by taking care of the hospice patient, you are allowing them to continue to provide care to other patients.

Also, this is a great way to build great relationships with the nursing home and continue to be a benefit to them.

  • Document the death
  • Call the coroner,
  • Notify the funeral home
  • Console the family. If family is not present, you can call and notify them of the patient’s death.
  • Perform post-mortem care
  • Gather and bag the patient’s belongings

Typically, the NH will usually dispose of medications according to their facility’s policies and procedures.

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Expert Hospice Documentation Tips

End-of-Life Care Death Documentation

In addition to post-mortem care, you will need to complete your death visit documentation.  Yep, it never goes away!

To begin, your documentation will include your death assessment, disposition of the body, notifications, and funeral home. 

You will also want to document education, emotional support, and bereavement that was offered to the family.

Death Note Narrative Example:

Arrived at home at 11:35 pm and found the patient to be unresponsive with no respirations noted.  No heart sounds were noted after three minutes of auscultation.  Pupils fixed and dilated.  No response noted to verbal and painful stimuli.  TOD 11:38 p.m. Nurse SuzyQ, RN pronounced.

Patient’s wife at the bedside at the time of death.  Notified coroner’s office of absent vital signs and body was ok’d to release to the funeral home.  Called Funeral Home (include name, address, phone number) to inform of patient’s death.

Post-mortem care provided by this nurse.  Family grieving appropriately.  Bereavement services offered and the family accepted.

Notified hospice IDG of patient’s death.

12:25 am- Funeral home arrived and transported patient from the home.  Family grieving appropriately at the end of the visit.

Additional Death Visit Tasks

  • Cancel upcoming visits (varies by agency)
  • Notify hospice aid so they don’t make a visit
  • Contact DME for equipment removal (ask family if ok to pick up DME same day)
  • Notify Pharmacy Benefit Manager (PBM)
  • Complete documentation
  • Notify bereavement and spiritual care
  • Verify who’s completing the death certificate

Take care of yourself

Finally, losing a patient can be hard.  Even the most experienced nurses cry and it is ok.  If you need a moment before you begin post-mortem care, take it.

End-of-Life care can be stressful so don’t be afraid to ask for help if you need it.

After your visit, you can try listening to your favorite song or sitting in silence. Remember self-care doesn’t have to be expensive.

Most importantly, do what works for you.  You can also check out these self-care tips for nurses. 

Related Article: Self-Care: 10 Ways to Cope When Your Patient Dies

SUMMARY

In summary, end-of-life care can be overwhelming. However, when you follow a systematic approach, you are less likely to miss important steps during the death visit. Always remember that your goal is to comfort the family and to treat the patient with dignity and respect.

Key Steps:

  • Pronounce patient by verifying absence of vital signs
  • Condole the family
  • Notify the coroner (if required) and the funeral home.
  • Perform post-mortem care
  • Document the death assessment
  • Offer bereavement services
  • Notify IDG, pharmacy, DME, and bereavement services

RECOMMENDED ARTICLE: Hospice Documentation What You Need to Know

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