Palliative Care Study Dreams and Visions

Study Conducted by The Palliative Care Institute Indicates Dreams and Visions Provide a Profound Source of Meaning and Comfort for the Dying.

Participants overwhelmingly indicated their dreams and visions lessened the fear of dying, gave comfort and made the transition from life to death easier.

Cheektowaga, NY – A long-term study conducted by the research team from The Palliative Care Institute (PCI) and headed by Hospice Buffalo’s Chief Medical Officer, Christopher Kerr, MD, PhD, regarding end-of-life dreams and visions (ELDVs) resulted in two scientific articles: End-of-Life Dreams and Visions: A Longitudinal Study of Hospice Patients’ Experiences and End-of-Life Dreams and Visions: A Qualitative Perspective from Hospice Patients, both of which are drawing national and international attention. A video of his moving talk can be seen at I See Dead People: Dreams and Visions of the Dying.

This study was conducted in partnership with James P. Donnelly, PhD, Department of Counseling and Human Services, Canisius College, Buffalo, NY, and Cheryl Nosek, DNS, RN, Professor, Undergraduate Programs Director, Nursing Department, Daemen College, Amherst, NY, and demonstrates true interdisciplinary collaboration.

ELDVs have been well documented throughout history and across cultures, and their impact on dying individuals and their loved ones known to be profoundly meaningful; however, much of the information has been anecdotal. The value of these experiences has been long underappreciated by the scientific and medical communities. The body of research on this topic is limited, and most studies have not been able to illuminate what these experiences mean to the patients themselves. Clinicians who are unfamiliar with ELDVs often assume they are hallucinations caused by medication or fever and, therefore, are likely to sedate the patient in an attempt to stop the visions or dreams, not realizing the comfort and meaning these ELDVs offer the patients having them.

Recognizing this gap, PCI’s research team completed an initial study to examine hospice patients’ dreams and visions from their own perspectives. The study quantifies the frequency of dreams and visions experienced by patients nearing end of life by examining the content and subjective significance of the ELDVs, and exploring the relationship of these factors to the time or proximity to death.

“We wanted to ‘demystify’ the relationship of dreams to death by capturing the patient’s perspective toward these ELDVs, explore whether the content of the dreams is predictive of the nearness of death and assess the level of comfort the patient experiences when dreaming about loved ones,” says Dr. Kerr.

Sixty-six patients at Hospice Buffalo’s in-patient facility in Cheektowaga, New York who reported experiencing ELDVs provided informed consent to participate in the study, which took place from January 2011 to July 2012. All were 18 years of age or older, terminal, with a required level of functioning ability and no cognitive impairment.

Over the course of several months, Dr. Kerr and his colleagues conducted more than 450 semi-structured interviews, asking participants closed- and open-ended questions about the content, frequency and comfort or distress levels of their dreams and visions. An average of eight interviews took place with each study participant.

Findings as a result of the interviews indicate that:

88 percent of the patients reported having at least one dream or vision
99 percent of those believed the dreams or visions to be real
nearly 50 percent of the dreams and visions occurred while the patients slept
the most common ELDVs revolved around living or deceased loved ones
60% of the ELDVs were considered to be of comfort; 19% distressing and 21% both comforting and distressing
religious content in the ELDVs was minimal; however there was a common existential thread
as participants approached death, comforting dreams/visions of the deceased became more prevalent
there are clear distinctions between ELDVs and delirium

“The study clearly indicates these dreams and visions are a profound source of potential meaning and comfort for the dying and, therefore, warrant clinical attention and further research,” says Pei C. Grant, PhD, Director of Research for the Palliative Care Institute. “Participants in the study overwhelmingly indicated their dreams and visions lessened the fear of dying, gave them comfort and made the transition from life to death easier.”

In an article by Betty R. Ferrell, PhD, RN that appeared on Medscape.com, entitled What Dreams May Come at the End of Life, Dr. Kerr and his research team were commended for their rigorous research methods that provided insightful understanding of experiences that are important to patients yet often minimized by clinicians. The article states, “The study authors address the issue of confusion between hallucinations and ELDVs. Hallucinations are often distressing, fearful experiences that produce anxiety. ELDVs are most often reported as resulting in a sense of calm or peace. Many professionals report that ELDVs assist patients in resolving conflicts, accepting death and finding peace.”

The study concludes that patients may be reluctant to share their personal experience of end-of-life dreams and visions due to fear of ridicule, distress to family, or outsider misinterpretation of mental acuity and supports the idea that ELDVs are prevalent in individuals without delirium or other psychotic disorders and that they are a mostly comforting and valid part of the dying experience. Patients, families, and health care providers alike can benefit from recognizing and understanding these dreams and visions at the end of life. These experiences need to be viewed as a normal transition from life to death. In normalizing these experiences, the patient is better able to share and process important issues at the end of life. Health care personnel can support patients and families by encouraging, rather than avoiding, discussion of end-of-life dreams and visions.

A large-scale follow up study was then conducted by PCI. Data collection was completed in 2015 and is currently being analyzed. This project takes a multi-faceted approach at looking at end-of-life experiences. Not only does this study further explore ELDVs, but also investigates other aspects of the dying process – such as sleep quality, existential well-being and emergence of delirium over time – and how they impact one another. The follow-up study allowed undergraduate research volunteers interested in palliative care the opportunity to be trained to help collect data and gain experience working with people and families at the end of life, providing a rare opportunity that will help guide their future chosen careers in medicine, nursing and social work.

The Palliative Care Institute (PCI) was established to advance the scope of palliative care awareness, education and research. The Palliative Care Institute not only seeks to educate current and future professionals about palliative care, but also the community at large. The Palliative Care Institute is an affiliate of the Center for Hospice & Palliative Care and is located on its campus in Cheektowaga, NY.

More information:

View a copy of End-of-Life Dreams and Visions: A Longitudinal Study of Hospice Patients’ Experiences

View a copy of End-of-Life Dreams and Visions: A Qualitative Perspective from Hospice Patients

Palliative Care Institute Research YouTube Videos:

https://www.youtube.com/channel/UC6IKN5yJ2dp3PD5vVwoFjrw

https://www.youtube.com/watch?v=hlHLF0aN9vM&list=PLZb-8AbMwG2v8P3PUEr4k8MPuBLOZ1K5A

Below is a list of published articles relating to The Palliative Care Institute ELDV study and resulting articles:

What Dreams May Come at the End of Life
www.medscape.com

Vivid Dreams Comfort the Dying
Scientific American

The significance of end-of-life dreams and visions
Nursing Times.net

Death and Dreams: Vibrant Dreams Give Comfort To The Dying
Headlines & Global News

End-of-Life Dreams and Visions: A Qualitative Perspective from Hospice Patients
e-hospice.com