End-of-Life Experiences

Dr. Christopher Kerr and the research team at Hospice & Palliative Care Buffalo have spent several years exploring end-of-life experiences (ELEs) and the impacts they have on both the dying and their loved ones. They are using this information to help improve the comfort of the dying experience and the quality of hospice care.

Watch the TEDxBuffalo talk, "I See Dead People: Dreams and Visions of the Dying," to hear Dr. Kerr’s perspective on ELEs.

What Are ELEs?

ELEs are significant, subjective experiences within the dying process that occur while asleep or awake. They can happen hours, weeks or even months before a person passes and may increase in frequency as patients approach death

Common ELE Themes

  • A sense of comfort
  • Preparing to travel somewhere
  • Watching or engaging with the deceased
  • Loved ones waiting
  • Occasionally, past traumatic life experiences
  • Unfinished business

Common Features of ELEs

  • They are extremely vivid and feel real.
  • They are recalled with insight and acuity.
  • They often provide comfort and lessen the fear of death.
  • They often hold personal meaning and provide insight for the dying patient and their loved ones.

ELE Stories

The video below features Hospice & Palliative Care Buffalo patient Jeanne discussing her end-of-life experiences. As you watch, see if you notice any of the common themes or features listed above.

Watch videos  of other Hospice & Palliative Care Buffalo patients featured in Death Is But a Dream, including Dwayne and Jessica, describing their end-of-life experiences.

ELEs vs. ELDVs

End-of-life experiences (ELEs) and end-of-life dreams and visions (ELDVs) both refer to the significant, subjective experiences that dying patients encounter while asleep or awake. We originally used the term “end-of-life dreams and visions” when conducting our research, but we have found that the phrase “dreams and visions” doesn’t properly reflect the vivid nature of these experiences, which feel very real to the patient. We have chosen to instead begin using the more encompassing term “end-of-life experiences” as, for these patients and their caregivers, these experiences are real, meaningful and significant. However, you will find that throughout this website and the Death Is But a Dream book, both terms are used. They refer to the same events.

Tools

End-of-life experiences, as told through the eyes of patients and their caregivers, are testaments that the end of life can be full of dignity, strength and grace. While many see and treat dying as an ominous time, ELEs reveal the heart of the human experience and re-contextualize death by putting the dying back where they belong: with the living.

To help you learn more about ELEs and how to discuss them with your loved ones, we have assembled a toolkit of downloadable PDFs. Some tools are worksheets to print and keep for yourself, while others are helpful documents for reference.

 

Meaning and Effect on Patients

Many patients derive meaning from their ELEs, which helps create positive psychological effects.

Learn more about how ELEs can impact patients. →

 

Meaning and Effect on Families

We have also found that ELEs can be meaningful and impactful for loved ones left behind.

Read about how ELEs can help those who are grieving. →

 

End-of Life Dreams and Visions Self-Reflection Worksheet

This worksheet can help you define your own personal views and experiences, preparing you to approach conversations about ELEs with an open heart and mind.

Fill out this worksheet before discussing ELEs with a loved one. →

 

Tips and Tricks for Discussing ELEs with Your Loved One

Talking about ELEs requires compassion, active listening and an open mind.

Read our advice for having a successful conversation about ELEs with your loved one. →

 

Sharing Your ELDV Experience Worksheet

Have you had an ELDV that you want to share with a loved one or care provider?

Fill out this worksheet to reflect on your experience and prepare for a meaningful conversation. →

 

Sharing Your Loved One’s ELDV Experience Worksheet

Has your loved one had an ELDV experience that you would like to share with other loved ones or a care provider?

Download this worksheet to prepare to have this conversation. →

 

Delirium vs. ELDV Guide

It is common for ELDVs to be confused with delirium, but it is important to distinguish the two to prevent ELDVs from being medicated and patients from being deprived of these experiences.

Learn more about how to tell the difference. →

FAQ

We have provided answers to the top 10 questions we receive about end-of-life experiences (ELEs).

What are ELEs?

ELEs are significant, subjective experiences within the dying process that occur while asleep (dreams) or awake (visions). They can happen hours, weeks or even months before a person passes and may increase in frequency as a patient approaches death. These experiences include, but are not exclusive to, seeing or interacting with deceased family members, friends, pets and religious figures, or traveling or preparing to travel.

Are ELEs at the end of life common?

ELEs have been documented throughout history and across various cultures and religions. When patients are asked on a daily basis whether they have experienced an ELE, up to 88% report having at least one such experience. If your loved one is experiencing ELEs, you may find comfort in knowing that they are not alone.

Does the experience of ELEs change as people are closer to dying?

As people approach death, there can be a dramatic increase in reported ELEs. The themes may change as well, with increased reporting of ELEs featuring deceased loved ones. Interestingly, seeing deceased loved ones is associated most with comfort. Therefore, as patients approach death, they are often comforted and make sense of ELEs as reunion with deceased loved ones.

Why do ELEs matter?

Our research has shown that ELEs provide comfort at the end of life and are associated with positive psychological growth (posttraumatic growth). The therapeutic impact of these experiences also extends to the bereaved. Specifically, the more comforting the dreams are to the dying person, the better the overall bereavement experience may be for the loved ones left behind.

Could these dreams simply be a result of confusion at the end or life?

When going through the dying process, a person often experiences changes in cognition and/or level of alertness. However, states of confusion such as delirium are distinct from ELEs. Patients suffering from delirium are, by definition, suffering with disorganized thinking and are detached and agitated. Unlike delirium, those who experience ELEs are acutely aware, cognitively intact, insightful and left with a feeling of comfort.

Of note, our research excluded those who exhibit signs of delirium/confusion, thought disorder, or cognitive impairment/dementia, though they may still have ELEs.

What should I do when someone starts to tell me about their ELEs?

It is very important to validate and normalize ELEs as a common part of the dying process. Data suggests that people are afraid to share their ELEs for fear of judgment, ridicule or being viewed as losing touch with reality. Therefore, reassurance as well as a willingness to listen is critical. This can also serve as a great opportunity to deepen your connection with a dying loved one.

Can it still be an ELE if it is distressing?

It is true that not all ELEs are comforting. In our research, about 15% of people have dreams that they would consider distressing. People carry trauma throughout their lives, and these experiences can be revisited through ELEs. However, distressing dreams are not without value or meaning. In fact, they may offer an opportunity to address unresolved issues, such as the need to express forgiveness.

Does your research with ELEs prove the existence of an afterlife?

The objective of our research is to capture the patient’s experience pre-death without making assumptions about religious, paranormal or afterlife interpretation. We believe these subjective experiences have value independent of a larger interpretation. What matters is that these dreams are meaningful to dying individuals and their loved ones, and that we respect their values and beliefs.

I’m healthy, but I’m dreaming about deceased loved ones. Am I having ELEs?

No — by definition, one must be dying to experience ELEs. You may however be experiencing grief dreams, which are powerful experiences that can comfort a person through the loss of their loved one.

Where can I learn more about ELEs?

There are a number of ways to learn more about ELEs:

Keep checking back for additional resources.

To cite this FAQ, please use the citation: Grant PC, Kerr CW, Levy K. FAQS About ELES: 10 Common Questions Answered. Version: 2019 11 01

Disclaimer About ELE Research

The goal of our research is to capture the patient’s experience pre-death without making assumptions about religious, paranormal or afterlife interpretation. It is our belief that these subjective experiences of dying have value as reported independent of a larger interpretation.
 

Our research is not about:

  • Near-death experiences

  • Sudden deaths (e.g. acute heart attack, fatal accidents, etc.)

    Deathbed coincidences (e.g. feeling a change in temperature in the room, clocks stopping, etc.)

  • Paranormal experiences (e.g. seeing a person’s spirit leave their body, seeing shadowy figures at the time of death, etc.)

  • The afterlife

What matters is that these dreams are meaningful to dying individuals and their loved ones, and that their values and beliefs are respected at this time of great transition.