Presentation on theme: "End of Life Experience (ELE) Phenomena - Dreams"— Presentation transcript:
1 End of Life Experience (ELE) Phenomena - Dreams Significance and Implication to Nursing PracticeHello and thank you for coming here tonight. My name is Harriet Yarmill, and I am a palliative nurse in the community.Before we get started, just one or two items….Could you please sign in at the door; ….I ask that if you have any questions, or would like to share your experiences, to please bring them forward after the presentation, when we will have an open forum.There are about 30 copies of this presentation at the door. If you would prefer to have the notes ed to you, please sign up at the end of the presentation and I will do that.Tonight’s presentation is on End of Life Experience Phenomena or ELE Phenomena. I am doing this presentation on this topic as part of my independent study component of the BPRN Program through the University of Manitoba.Harriet Yarmill RN
2 Outline Introduction to ELE Phenomena Why the interest? Dreams CommunicationBarriers and BenefitsResponding TherapeuticallySummaryDiscussionIntroduction: definition, types of , and examples (slides 1-6)Why the Interest? Story of Sarah (slide 7)ELE Dreams: Types of, Dream themes, Dream Analysis versus Dream Work, Where Dream Work used (slides 8-13)Communication: recognition of symbolic communication and metaphors, (slides 13-15)Barriers and Benefits: inhibiting factors of dying person and caregiver and caregiver challenges(slides 16-18)Responding Therapeutically: how we, as caregivers of the dying, can help (slides )Summary: recap of presentation (re-excite participants to speak of their experiences), referencesAudience Forum: allow 15 minutes of discussion from audience
3 End of Life Experience (ELE) Definition: any one of a wide range of pre-death phenomena which comfort or prepare the dying person spiritually for death.What this definition is telling us is that end of life experiences manifest in different ways. These various occurrences are common throughout many cultures, and have been recorded across the ages in so much that they are a recognized phenomena.They are thought to provide peace or comfort to the dying or those caring for them, although that is not to say that pre-death dreams are always pleasant. We will discuss this later in an example.Fenwick Lovelace & Braye, (2007)
4 End of Life Experiences (ELE) Occur frequently and are variedTheorized to be part of the dying processMay occur hours, days, or weeks before death.OCCUR FREQUENTLY – Patients and families or caregivers often report unusual events or experiences around the time of death.Patients’ and others, usually those who are emotionally close but physically distant, report a wide variety of phenomena, such as :Visions (waking or dreaming), “seeing a light” or people once knownSignificant Change of room temperature (heat or cold)Clocks stopping synchronisticallyPART OF DYING PROCESS –Evidence suggests that these occurrences in some way herald the dying process, and are an integral part of achieving spiritual comfort for the dying.In Case of Questions:- Fenwick, Brayne & Lovelace in Gloucestershire Nursing Home(2008)- Brayne, Farnam, Fenwick in Camden Study (2006)ELE’s may occur – here is an example of an ELE that illustrates both a time component and a premonitionary component.This experience was reported to me by a long-time nurse about a middle-aged woman an orthopaedic ward. This patient was recovering well from her hip surgery, and one night was awake on rounds. This nurse and a HCA asked why she was awake and she explained of experiencing a weird dream. In this dream, she was travelling rapidly down a dark tunnel to a light at the other end. She heard a family member call her name, and then woke up. (This is a classical Near Death Experience)To everybody’s surprise, two days’ later, this patient died unexpectedly. (private discussion with Stella Olsen R.N., Aug 17, 2008)Fenwick & Fenwick (2008), Muff (1996)
5 Categories of ELE’s Transpersonal Final-Meaning Research recommends that to assist in adding best practice to EOL care, we divide ELE’s into 2 categories., These are:Transpersonal – these experiences typically comfort or soothe the reporter; they can also sometimes “predict”approaching death, both of these functions were seen in previous examples. They can be experienced by either the dying person or another person who is emotionally close to the dying person.For Example: - visions involving family members who have deceased who come to help the dying through their process- being able to transition from other realities, often involving light and love.- coincidences experienced by others who are emotionally close, but physically distant; like someone may report the dying came to them, often to say they were OK, sometimes from great distances, and often at the precise time of that person’s death. More later.- Other odd happenings (clocks, animals, birds) which we will discuss.Final-Meaning – These experiences are important and meaningful to the dying person in that they will prompt or encourage the individual to address unresolved issues in the here and now. The significance here is that the dying person can then find peace at time of death. Again, these final-meaning experiences can occur to either the dying or a close associate.for example: - a sudden desire to reconcile or to deal with unfinished family or personal business-observers report dying people experience periods of lucidity prior to death that allow them to say good-bye.- many people seem to have the ability to “wait” until relatives either arrive or depart before dying.- Profound dreams, either waking or sleeping dreams, that help the individual come to terms with what may have happened in their life, perhaps to prepare them for death (Sarah’s dream)Brayne & Fenwick (2008)
6 4 types of ELE: Deathbed visions Physical changes at time of death Deathbed coincidencesDreamsChances are many of you, if not all, have experienced some ELE phenomena; here they are:Four sets of phenomena are associated with the dying process. These are:Deathbed visions – most commonly reported ELE’s, usually of dead relatives to “help” the person through the dying process.An elderly man who recently suffered an MI was doing poorly at home, and soon before he peacefully passed away, he became lucid, sat upright, and spoke to his long-deceased brother-in-law “Hi, Dave, what are you doing here, it’s good to see you”. This was witnessed by his wife and son (Fenwick, & Fenwick, 2008 p. 37) (TRANSPERSONAL)Physical Changes at time of death – “something seen leaving the body” ( vapours or a mist) is seen by professional caregivers or relatives at time of death; little discussed.- change in the temperature of the room at death- reports of clocks stopping, phones ringing or call bells buzzing- unusual animal activityOscar the cat. Oscar is a cat that lives at a care home in Rhode Island. He has an uncanny ability to sense when someone is going to die, and in fact has “presided” over the deaths of more than 25 residents in his usual way, by hopping up on their bed, and staying with them until they are gone.. His presence at a patient’s bedside is viewed by caregivers as absolute indicator of impending death, allowing staff to alert family. (Dosa, 2007). (TRANSPERSONAL)Deathbed coincidences – usually reported by someone who is close to the dying person, and at times without the knowledge the person is ill or dying. May take the form of a “visitation”, where the person appears to be in the prime of life, often a non-verbal occurrence, yet simply indicate they are dying and everything is all right.Here’s an example of a particularly poignant occurrence.This incident happened during the Second World War in Britain, when 2 sisters were just leaving their house at noon. One sister spotted a tall man in a uniform down the hill, standing on the bridge, and he bore remarkable resemblance to her fiance, Harold. This was not possible because at the time, as Harold was overseas fighting. Yet, because of the similar uniform, the sisters thought it may be someone from the same unit, who might know Harold, so they decided to go speak with the man. By the time they got to the bridge, there was no sight of the man. They forgot about the incident until the next day, when they were at their mother’s house, arriving at the home a little ahead of their mother. As a prank, the engaged sister decided to hide behind the couch so that she could surprise her mother when she opened the door. When the mother came home, she immediately began to tell the other sister that she just got the news that Harold had been killed yesterday at noon. Was it a coincidence that the two sisters saw Harold by the bridge at the exact time he died in England? (Fenwick & Fenwick, 2008)Dreams- usually comforting and hold some type of profound meaning for the dying person. Usually reassuring dreams that help the person to deal with unfinished business or unresolved issues in their lives; often mark a change in the person’s behaviour.Dying person may had a sudden imperative need to reconcile with his/her life or have a sudden moment of lucidity after being in a comatose or demented stateFenwick, Lovelace & Brayne (2007)
7 The Story of SarahDying woman’s personal account of her dream told to me approx 2 weeks before deathELE dream gave meaning to her illnessSara profoundly affectedDramatic change in her coping, her behaviourFamily able to be more involved with her at time of death because of this changeBack in the mid-90’s I was working in Steinbach on a 31 bed medical ward, where we had 4 private rooms that were designated palliative.Sarah was in her mid-50’s and was suffering from untreated breast cancer. By untreated, I mean she had refused all chemo and surgery. She had always managed her wound herself at home, and was finally admitted to the hospital. Sarah was intensely private, and very angry with the situation she was in. She would not verbalize about her disease or her feelings surrounding her illness. Her family consisted of 4 teenagers, and a quiet devoted husband, all of whom were as supportive as the situation would allow. In looking back on Sarah, I would describe her as a “difficult” patient.While on rounds one night, I came upon Sarah, and she was crying. This in itself was strange, because the Sarah I knew was not the crying kind; I knew something must really be wrong.Sarah told me that she had a dream: She was in a large outdoor arena or sports field, and she was dressed in armour, with a sword and shield. She described a large crowd of people watching the proceedings. There was a sort of duel going on between her and another fighter, and she killed the other person. Sarah proceeded to tell me that the reason she was now dying in this horrible manner was because she had killed this other warrior, supposedly taking glory in his death.She was again overcome by crying, inconsolable by this deed she had supposedly done. All my well-intentioned reassurances did not help. For example, I told her that “it was just a dream and it didn’t mean anything”. I told her it wasn’t like it really happened, and now the dream was over, so she could stop crying. (I think I was actually frightened by her dramatic reaction and told her to stop crying). I told her she was here in Steinbach, and it was 04:00 in the morning, and she was OK, and we would “look after her”. Finally she settled down, but I recall being very shaken by witnessing her profound reaction; to her this dream was real, and I knew I did not respond helpfully.Sarah died about 2 weeks after this dream, but in those last 2 weeks, the staff and family noticed a change in her behaviour. She was no longer angry, just seemed to have a quiet acceptance, (as if now she understood the meaning behind why she was dying). She allowed her family to get closer to her, and was able to say goodbye to each of her children, something that would have been totally out of character for her, as we knew her.This experience stuck with me, and I always marvelled at the power of this dream on Sarah. This dream was the reason I decided to study the significance of pre-death dreams and their implications for nursing.
8 Hallucination or ELE Dream? Effect on patientViewed by patientPrelude to deathResponse to MedicationWhole seminars are devoted to this topic, but for today’s purposes, here is my understanding from the literature.4 ways to tell if it’s a hallucination or a dream:Effect on Patient:Biggest difference - Hallucinations typically are annoying, frightening, and are confusing and anxiety-provoking to patients. Once cause is corrected, they don’t linger. ELE dreams, however, are meaningful, and usually are of great comfort to the patient, bringing peace and a sense that things are “all right”. This effect is lasting and often a change in behaviour is noticed by caregivers.Viewed by Patient: a short-term, transient issue, not dwelt on. An ELE dream is remembered and thought of .Prelude to death: Hallucinations are not harbingers of imminent death, as are ELE dreams.Meds Effect: Hallucinations can be controlled with alterations in med regimen, ELEs are not.
9 Types of Dreams Everyday Dreams - belonging to the “personal unconscious”- mundane- no special meaningArchetypal dreams- part of the “collective unconscious”- certain dream types common to all mankind- Universal stages of lifeCG Jung and his work on dream analysis. Hypothesized that there is a personal and a collective consciousness.Personal Consciousness: “just below the surface” events that occur within our own realm of consciousness; they are personal , relating to our daily lives and events that are known to us.Everyday Dreams have no special meaning to the person. Centre around everyday occurrences.“Collective” or “Universal” Consciousness: a deeper levelRefers to central “themes” that are common to all mankind; represented in all humans throughout their lives.Often poetic, rife with symbolism, not like an everyday dream. Big or SignificantOccur mostly in the critical stages of life; early youth, puberty, onset of middle-age (36040) and when one is nearing death.The word, “archetype” refers to an age-old inherited tendency or pattern of the psyche to manifest itself in certain behaviours (e.g.: dreams) that especially occur with important, universal experiences like birth, marriage, motherhood, and death (Colman, 2001).
10 Archetypal Dream Themes CreationGreat passage or journeyCrossing over water or bridgeReformation of person in a new bodyWeighing or judging of the soulReturn to another realm of existenceReincarnation, occasionallyAdapted from von Franz, 1986Creation: About birth, or re-birth; new life, springtime, buds, a new beginning.Great Passage or Journey: Person is “on his/her way” somewhere; preparing to leave, getting ready for a trip somewhereCrossing over Water or a Bridge: Water symbolizes a boundary between the dreamer and “the other side”Reformation of person in a new body: taking on a new persona or new form, similar to re-birthWeighing or judging of the soul: this theme has religious undertones. Belief system prevailsReturn to another realm of existence: may refer to roles played or places lived in the past. Contact with those gone beforeReincarnation: past lives
11 More Dream Types Wake-up dreams Setting Things in Order dreams Opposition & Conflict dreamsAlchemic Imagery dreamsTransformation dreamsSpiritual/Archetypal dreamsMuff (1996) studied the dreams of AIDS patients and identified 6 types of dreams. She describes these 6 categories based on their effect on the person.Wake up dreams: unsettling, occasionally nightmare quality; challenging the dreamer to recognize the urgency of unfinished businessSetting Things in Order dreams: have a calming effect on dreamer, often contain imagery consistent with perpetuity or enduranceOpposition & Conflict dreams: point to unrecognized parts of the psyche and challenge the status quoAlchemic Imagery dreams: Concern the transformation of the basic material of life into psychological healing or transformation through some process such as separation, dissolving, eroding, or joining, reconciling, uniting.Transformation dreams: Deal with some phase of the life cycle; include images of new growth, decay/destruction, changing seasonsSpiritual/Archetypal dreams: Contain a sacred or mythical tone; leave dreamer with an unforgettable, haunting or larger-than-life quality.(Adapted from Muff, 1998)
12 Dream Analysis vs Dream Work StructuredInvasiveSpecializedTime consumingPainfulPatient leadsNo attempt to decipher by listenerNo special training or experiencePatient arrives at own conclusion or not.Dream Analysis: a psychoanalytic technique to tease out subliminal wish fulfillments, where interpretation and other methods such as free association are applied to a person’s dreams. It is time-consuming, and can be distressing or emotionally toxic to the patient. Adapted from Colman (2001)Dream Work: simply listening and responding to dreams, and does not include analysis or an attempt to understand dreams or assign meaning to them. It may involve respectful listening, encouragement, and interest so that the person may better understand themselves and in doing so, live or die more consciously so not to feel they are at fate’s mercy (Muff, 1996).
13 Dream Work Applications Childhood traumaVietnam veteransAIDS patientsDream work is used as a healing modality for those who are traumatized in some way; It is interesting to note that the literature does not recognize dream work for those who are healthy and balanced, yet there are many secular dream books available for the average, un-traumatized individual.
14 Symbolism – the language of dreams Unconscious expression is through use of symbolismMetaphors are another way of saying one kind of thing in terms of anotherone common metaphor re: existential matters is that “life is a journey”Researchers maintain that the unconscious speaks to our conscious via dreams. People often have awareness of impending death, and this knowledge often emerges from the unconscious mind into consciousness through the images of dreams and visions.- Dying people often experience increased dreaming and visionary activity as death approaches (Dugan, 1989) suggestive of a natural process informing the person of impending death.2.We use what we know to describe what we don’t know - metaphors. (Bulkeley & Bulkley, 2005)3. People will often talk in abstract terms; they will “beat around the bush” and not use the plain language that we would normally use in everyday conversation. They may speak of persons or circumstances which are not unknown to the caregivers; it is common for caregivers to dismiss these communications as the ramblings of a confused or medication-addled mind.4. - “life is a journey” metaphor e.g.:person is a “traveler” in lifeHis/her purposes are “destinations”The means for achieving those purposes are “routes”Obstacles in life are impediments to travel, e.g.: “road blocks”Counsellors are guidesProgress is distance travelledChoices in life are “crossroads”(Bulkeley et. al., 2005)Bulkeley and Bulkley (2005)
15 How to identify Symbolic Communication Often occur when client is “actively” dyingno absolutely fixed meaningsMay not make sense to caregiversCaregiver response is important1. “Actively” dying means when a person is that state where they are close to death, occasionally awareof this reality, yet often entering a state of unconsciousness. Their communications vacillate between literal (our reality) and symbolic (a “dreaming reality” only known to the dying person). For example: a person with a PPS of 20% or less can be actively dying2.People will often talk in abstract terms; they will “beat around the bush” and not use the plain language that we would normally use in everyday conversation. They may speak of persons or circumstances which are not unknown to the caregivers; it is common for caregivers to dismiss these communications as the ramblings of a confused or medication-addled mind.3.What is interesting about symbolic communication is that people who experience it are usually willing to elaborate, if interest is shown. Very often people become aware their conversation is not “current” as they are verbalizing. Respectfully allowing the patient to expand on it allows for conversation; an opportunity to show concern and care in a respectful, and non-judgemental manner. A chance to reassure patient that this sometimes happens to people at this time in their life.Dismissing patients comments can lead to a sense of isolation at a vulnerable time of life.So this is a challenge we as caregivers face. Some other challenges are:
16 Barriers to Verbalization For PatientsFor CaregiversIt is believed that most ELE’s go unreported due to various factors.Important to recognize these barriers apply both to caregivers and to patientsPatients:Fear of ridicule, appearing to be crazyEmbarrassmentDistress to familyLack of language skillsLack of privacyPatients are not asked by caregiversSome patients do not wish to talk about their dreamsCaregivers:Fear of professional/personal ridiculeTopic viewed as “non-professional”Does not “fit” into biomedical model of carePersonal discomfiture with deathFailure of care Versus natural process
17 Benefits of ELE Work Patients & Families Caregivers Mutual benefits BENEFITS TO PATIENTS & FAMILIES:There is consensus among researchers that ELE phenomena, especially dream work, fulfills several functions:Preparatory Function: ELEs prepare the person for what lies ahead in waking life by envisioning possibilities, challenges, dangers and opportunities. Dreams are the “ultimate testing ground” for new ideas.- opens eyes to a greater understanding of self and the strengths available.2. Prophetic or pre-cognitive powers of dreaming. In dreams one can view a different perspective on life and to consider alternative possibilities or hypothetical scenarios. For example: one young woman had a post 9/11 dream of flying. She dreamed she deliberately chose an aisle seat to provide her easy egress in the event of a terrorist attack. This illustrates the anticipatory function pre-death dreams can serve ~ one researcher even found there was a diagnostic component to pre-death dreams, where one dreamer dreamed she had a terminal illness before she was even diagnosed. This aspect is tenuous at best, and good to be sceptical about this.3. Coming to terms with death: This could mean coming to terms with death, attending to unfinished business, making peace with others as a prelude to passing from this world.4. Memories for Families: Memories of ELEs can provide comfort not only to patients, but to the families as well. For example, tell story of Helen’s last prank .Helen was in her 60’s, facing death with lung cancer, and living at her daughter’s house for end of life care. Her daughter had taken time off her work to be with her mom full-time. Helen had a wonderful sense of humour, and used laughter to cope with everyday problems. In fact, as I grew to know Helen, it became apparent that Helen was quite the jokester, and had been the Queen of practical jokes at one time. After Helen died, I went to see the daughter on a bereavement visit, and this is what she told me.After Helen died, and the family had visited her the funeral home was called to take her body to the home for arrangements. It was taking the funeral home a very long time to come for the body, and after two phone calls, they still hadn’t come. Finally, they did arrive, looking uncomfortable and acting strangely. They reported that they went to the the wrong street (in Transcona, there are East and West streets of the same name, and other names that are confusing, e.g.: Rougeau Versus Rosseau) and the people at that address were not amused at the error!!! Helen’s daughter reported that their family thought this was hilarous and just like Helen to go out on this type of note! They will cherish the memory of Helen’s last prank for years to come.CAREGIVER BENEFITS:Safe and engaging way to broach difficult topics : As noted previously, it is often difficult to initiate conversations about dying or other emotional topics, and discussing dreams can provide an opportunity to broach these ideas.Improved use of therapeutic self: An unexpected benefit of attending to pre-death dreams was that nurses became more interested in and comfortable with receiving and responding to dream material (Muff, 1996).MUTUAL BENEFITS:Acknowledging ELE dreams is of mutual benefit for patients and caregivers.“Psych” stigma is absent with dream workWith dream work, there is no heavy psychological stigma involved, capturing a wider segment of the dying population that would normally be excluded because of not wanting to be involved with traditional psychotherapeutic work. Personal or religious reasons sometimes play a part here.No formal education requiredDream work relies on the carers’ listening ability, concern, open mind, respect and willingness to discover something new, rather than a lot of formal education or training.
18 Caregiver Challenges Communication skills Training in “language” of deathTeam SupportTraining to deal with existential issuesDiscomfort with “new priesthood” aspectEnvironmental constraintsIn a study done by Brayne, Lovelace & Fenwick (2008), here are some challenges identified by the nurses and health care aides:Communication Skills –How to start conversations about the dying process was seen as important because it was felt that patients often could not talk about this to their families, therefore needed someone to turn to. Not knowing what to say is identified as a major problem for caregivers. This lack of communication skills translates into a lack of confidence to discuss emotional issues that may be important to the dying.“Language” of death” – Symbolism or metaphoric language poses a challenge, as meanings are not readily known, and the words expressed may be frightening. Knowing what to say (or what not to say) ties in with good communication skills.At this point, I want to add that families have “lost the deathbed experience” in that home deaths are not a regular occurrence these days, and there is a certain “sanitization” of the death process, or “emotional disconnection” where institutional staff or funeral homes are in charge of the body from the time of death to time of burial.Team Support – Caregivers requested the opportunity to discuss ELEs within a group on a regular basisPastoral Training – Caregivers felt that they were placed in a position of giving pastoral care and voiced the need for a broader understanding of different religious beliefs as well as a more complete understanding of what happens to the body after death.Some carers felt uncomfortable giving emotional support to the dying, because of the “authority” or position of power; specifically, that the dying often sought to know what the carer’s personal beliefs were, subsequently seeking role models.This next point was not part of the Brayne study, yet is a factor in providing good palliative care:Environmental Constraints – are commonly seen in health care facilities; these are time constraints, heavy workloads, staff shortages, lack of privacy and economic factors that limit time spent with the dying.Brayne, Lovelace & Fenwick (2008)
19 What Can We Do to Help? Be open; recognize. Empathize (put yourself in their position)Suspend judgement….Realize you don’t have to agree, believe, understand ….just BESupport for all (patients, families, co-workers)Normalize the experienceBe open to all possibilities: Allow yourself to be open to hearing a patient’s story. It can be as easy as asking how they slept last night.Empathy: the palliative population we serve and care for is on this earth for a limited time. Knowing this can make it easier to understand their need to be heard, be understood, and be cared for and about. All one needs to be interested and listen.Suspend judgement: Realize you do not have to agree, understand, believe, or have answers. Just being there is enough.Perfectly positioned to give Reassurance: You may observe a patient “experiencing” waking or sleeping dreams, hear their “ramblings”, have a family member relate to you an odd occurrence or ask you what is going on. We as caregivers can be instrumental in “normalizing” a potentially frightening and misunderstood experience.We can reassure family, and our colleagues, that pre-death phenomena/dreams are not uncommon and are often comforting to the dying (O’Connor, 2003)
20 Sue Brayne, MA and Dr. Peter Fenwick In grateful Acknowledgement for the encouragement and support of :Sue Brayne, MA and Dr. Peter FenwickDr. Susan McClement
21 ReferencesBrayne, S., Farnham, C., & Fenwick, P. (2006). Deathbed phenomena and their effect on a palliative care team: A pilot study. American Journal of Hospice & Palliative Medicine, 23(1),Brayne, S., & Fenwick, P. (2008). The case for training to deal with end-of-life experiences. European Journal of Palliative Care, 15(3),Brayne, S., & Fenwick, P. (2008). End-of-life experiences: A guide for carers of the dying. Available at: Retrieved: October 12, 2008.Brayne, S., Lovelace, H., & Fenwick, P. (2008). End-of-life experiences and the dying process in a Gloucestershire nursing home as reported by nurses and care assistants. American Journal of Hospice & Palliative Medicine, 25(3),Bulkeley, K., & Bulkley, P. (2005). Dreaming beyond death: A guide to pre-death dreams and visions. Boston: Beacon Press.Dosa, D. (2007). A day in the life of Oscar the cat. New England Journal of Medicine, 357(4),Fenwick, P., & Fenwick, E. (2008). The art of dying: A journey to elsewhere. New York: Continuum.Fenwick, P., Lovelace, H., & Brayne, S. (2007). End of life experiences and their implications for palliative care. International Journal of Environmental Studies, 64(3),Muff, J. (1996). From the wings of night: Dream work with people who have acquired immunodeficiency syndrome. Holistic Nursing Practice, 10(4),O'Connor, D. (2003). Palliative care nurses' experiences of paranormal phenomena and their influence on nursing practice. Presented at: 2nd Global Making Sense of Dying and Death Inter-Disciplinary Conference, Nov 21-23, 2003, Paris, France. Available at: Retrieved: October 11, 2008.