Our End-of-Life Experience Research
Beyond serving as a physician, Chief Executive Officer and Chief Medical Officer at Hospice & Palliative Care Buffalo, Dr. Christopher Kerr also helps lead the research team to learn and understand more about end-of-life experiences (ELEs).
Key Discoveries
Our exploration of the nature and impact of end-of-life experiences has provided us with insight that we are using to help bring dignity and comfort to the dying process for our patients and their caregivers.
88.1%
of patients report having at least one end-of-life experience (ELE)
99%
of patients report their ELE as seeming or feeling real
60.1%
of patients felt their dreams were comforting (while 18.8% felt they were distressing)
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As patients approached end of life, there was often an increase in the frequency of comforting dreams
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Dreams commonly featured deceased loved ones, travel/preparing to go somewhere, living loved ones, other people, pets/animals, religious figures and past meaningful experiences
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The most comforting ELEs were about deceased loved ones
Based on Worden’s Tasks of Mourning, caregivers reporting that their loved one experienced a comforting ELE:
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Were more accepting of their loss
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Were better able to work through the pain of grief
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Were better able to adjust to a world without their loved one
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Felt they had a stronger continuing bond with their loved one
Study Summaries
Our Pilot Study
After witnessing ELDVs within the patient population at Hospice & Palliative Care Buffalo, we wanted to better understand how often ELDVs occur, what these dreams and visions are about, what they mean for the dying, and how experiences may change as an individual nears death. We began a study within our hospice inpatient unit with our patients, which included a survey and a structured interview. We visited participating patients daily to complete the survey and interview them for as long as they were able.
End-of-Life Dreams and Visions and the Bereaved
With a greater understanding of the frequency, content and comfort associated with ELDVs for patients based on our first study, we were now interested in how dream experiences affect grief and bereavement for those who have lost a loved one while in hospice care. A survey was sent to bereaved caregivers asking about their loved one’s potential ELDVs and how they feel those experiences have impacted their grieving process.
Read Study Summary and Results →
End-of-Life Dreams and Visions and Post-Traumatic Growth
Knowing that ELDVs can be comforting led us to ask if having these experiences affected patients’ post-traumatic growth, or the positive psychological changes that can occur after trauma. Here, the trauma for patients is forgoing curative treatment and entering hospice, as accepting one’s impending death is undoubtedly a traumatic event. Would ELDVs change the amount of post-traumatic growth felt by a dying individual? Patients who were AND were not experiencing ELDVs were surveyed in our hospice inpatient unit in order to answer that question.
Read Study Summary and Results →
End-of-Life Dreams and Visions of Terminal Children
Current research has always focused on the end-of-life dreams and visions of adults; however, children with terminal diagnoses can also have these experiences. One example of this is through our case study of Ginny, a 15-year-old girl whose dreams and visions heavily impacted her death and her mother, Michele’s, bereavement experience. Her dreams provided comfort, revealing to her a beautiful castle where she was reunited with her deceased aunt and former pets. Later, her dreams changed to a conversation with God that left her prepared for what was to come. While losing her daughter has never been easy, Michele has continuously found solace through Ginny’s dreams.
Expanding the Understanding of Content of End-of-Life Dreams and Visions
Our initial research, among others, has established end-of-life dreams and visions (ELDVs) as prevalent, meaningful and valid experiences that may help patients and their families cope with illness and approaching death. This work builds on our previous work whereby we conducted a thorough investigation on the breadth and depth of the dreams of the dying. It was a 2.5-year study where we followed homecare hospice patients and interviewed them weekly about their dreams and what their dreams meant to them. This study was the first in-depth, rigorous analysis of ~550 dreams done using Consensual Qualitative Research methodology.
Findings from this study suggest that not only are ELDVs valid and meaningful, but they also encompass a broader range of content and effects than what has been previously reported. Comfort derived from a dream is a product of making sense/meaning out of the ELDV or the ability to safely share the experience with others. Clinical implications of the study suggest that it may be important for providers to engage with ELDVs, as they are psychologically significant experiences that may be a source of clinical insight.
Read the Study Summary and Results →
Attitudes and Perceptions of End-of-Life Dreams and Visions and the Implication to the Bereaved Family Caregiver Experience
Our initial study with bereaved caregivers was the first to quantifiably demonstrate how end-of-life dreams and visions (ELDVs) extend beyond those who experience them to the bereaved loved ones. Bereaved family caregivers report that comforting ELDVs experienced by their dying loved ones influenced their grief process.
This study continues our body of work on the relationship between end-of-life dreams and visions (ELDVs) and the bereavement process. This study focused on how caregivers’ general attitudes about dreams and their viewpoints on ELDVs can influence their grief. Five hundred bereaved caregivers were surveyed, and five focus groups were conducted.
Our findings suggest that positive general attitudes toward dreams and positive ELDV perceptions are correlated with better bereavement outcomes. Therefore, patient and family education on ELDVs that focuses on awareness and understanding of ELDVs may enhance clinical outcomes for both family and patients.
Read the Study Summary and Results →
Role of Post-Traumatic Growth in Bereavement Outcomes: An Inquiry of Family Caregivers in Hospice
This study examined the relationship between core bereavement experiences and post-traumatic growth for bereaved hospice Family caregivers (FCGs). A total of 395 of our bereaved family caregivers completed the survey. The research team is excited to share our most recent article, which has been published by the Journal of Palliative Medicine!
Family caregivers encounter several physical, psychosocial, and financial struggles while caring for a dying loved one. After their loved one has passed, family caregivers face new difficulties as they transition out of the caregiving role and into bereavement. Recent research has focused on the positive adaptive outcomes of bereavement.