Fred was a librarian who was shy and obsessive about details. Unfortunately, he developed a glioblastoma multiforme, a brain tumor from which he was dying. Fred's wife, Hanna, in contrast, was an extrovert who was florid in dress and personality. They were a classic odd couple. When Fred came to us, he had become bedridden. As with most patients with brain tumors, he had little pain. His suffering arose from progressive disorientation that resulted from his growing tumor. Self-control had always been important to Fred, and he found it intolerable that he did not understand exactly what was going on. He grumbled and complained. One day close to the end of his life when I went to see him, I sensed something different. The struggle for control had faded. He sighed, "I just wish I could get away. To a ... South Sea island. But I know I can't." I cannot say exactly how I knew, but I understood that this was no ordinary conversation. Fred was in an altered state. I sensed an important opening. "Well," I said, "let's go. Let's hop on the plane and fly off to Tahiti." "Really?" His face came alive with the possibility. "We can go?" "Sure, I said. I've got two tickets right here." For a moment his face lit up. Then a shadow fell. "Oh no," he said, "there is just no way I can go." He looked like he might cry. "Why not," I asked, puzzled. "Look at all this," he said, pointing around the bed. "Look at all this luggage. I'll never get on the plane." "Shoot, what are we going to need luggage for," I replied. "We're just going to be lying on the beach, sipping margaritas." With that, I hopped onto his bed, and he and I began chucking luggage out of the "plane" as he laughed and laughed. Hanna stood in the doorway with tears running down her cheeks. As I passed by, she said, "I've waited twenty years for him to get rid of that goddamn luggage." Fred died a few days later.
Dying patients frequently experience altered states of consciousness toward the end of life. Unfortunately, the vocabulary we have to discuss such states is limited. Delirium is a word often used. However, the word delirium has a completely negative connotation, whereas some altered states are pleasant, even ecstatic.34 Altered states, as in Fred's case, can even hold the potential for growth. Here, I attempt to provide a framework for the consideration of altered states in a less biased manner, leaving open the possibility that not all altered states are bad. Sadly, the evidence base for much of this discussion is poor. I hope that future studies can critically examine what is proposed here.
It is very difficult to state the prevalence of altered states of consciousness at the end of life. Studies that used various terminologies and methodologies cite rates from 25% to 85%.9,35-38 Clearly, altered states of varying degree and quality are not rare. Helping patients who experience these altered states and their families can be extremely challenging.
Altered states are nothing unusual in and of themselves. Whenever we dream we experience an "altered state," compared to wakeful consciousness. We have come to accept this as normal. In dying patients at certain times altered states may also be normal. As we shall see, the issue often is not so much what is "normal" as whether suffering is associated with the altered state.
I have found these factors useful in analyzing altered states:
The level of consciousness may be decreased, increased, or roughly the same as that experienced in normal wakefulness. At one extreme, comatose patients have very low levels of consciousness. At the other extreme, agitated patients have a "higher" level of consciousness (or alertness). Most patients who have an increased level of consciousness that I have treated experience some distress. However, a patient may rarely experience a heightened level of consciousness as an ecstatic moment, as did Fred while chucking the luggage. Levels of consciousness often fluctuate rapidly in patients who have altered states.
What is the effect of a certain level of consciousness on a particular patient? A lower level of consciousness, being sleepy, may be highly desirable for some and seems to be in tune with the dying process. For others this can be very distressing. Others may wish to be sleepy and may become disturbed when they are alert and awake.
Physicians are usually taught to assess orientation to time, place, person, and situation (orientation X 4). This is a reasonable but crude way of thinking of orientation. Most useful in assessing altered states is orientation to time. The best single screening question to assess orientation related to altered states and delirium in a patient may be, "What time of day is it?" Asking about date and year, a more commonly asked question by physicians, mixes orientation with memory of time. This is a good screening question for dementia but less useful for altered states or delirium. Most people know who they are deep into altered states. Person is more likely to be forgotten with severe memory loss, as in dementia. Place and situation are the most significant criteria in assessing orientation. It is important to distinguish between what is remembered or forgotten (possible dementia) compared to what is being experienced (possible altered state). A demented patient may forget being admitted to a hospital (place) for treatment of pneumonia (situation) and not be in an altered state. However, if a patient so admitted reports that he or she is on a cruise ship in the Bahamas, that is a very different experience, an altered state, whether the patient is demented or not.
I find it useful in considering this aspect of orientation to think by analogy about radio frequencies. In normal wakefulness we function and interact on a relatively narrow and shared frequency that allows both transmission and reception of shared experiences. When patients at the end of life experience altered states, it is as if their radio frequency, their wavelength, has shifted. Sometimes the dial is only slightly turned, which allows the patient to experience both the "normal" wavelength on which we coexist and yet receive signals on a wavelength that we cannot perceive. Such a patient might be perfectly aware of being in a hospital bed and of dying but be able to see and hear a deceased relative sitting in a chair next to the bed. Fred, the librarian, was on such a mixed frequency, which allowed me some access to his altered state experience. Sometimes the radio dial is turned farther, so that the patient becomes oblivious to our wavelength and experiences something completely different. Our only clues to such shifts are either the patient speaking or gesturing in an indicative way or the patient reporting on the experience after returning to our wavelength.
At this point I must stress that in discussing such altered states, I am not commenting on whether the late Aunt Edna is really sitting next to the dying patient, that is, whether such altered states are real. The point is they are experienced as real. This shifting of wavelengths may seem fantastic, but, in fact, we experience such states every night when we dream. Most of the time the shift is complete. When we dream, we experience a very different reality. However, sometimes we get caught in-between. Half-awake, half-asleep, our experience is a blend of different wavelengths. Such blending is very common in the dying, who appear to be "letting go" of a very rigid separation between daytime wakefulness and nighttime dreaming. This can be distressing to both patients and family members if it is not understood. Educating the patient and family can help normalize this experience. Frequently, I do so by drawing an analogy to dreaming, which people generally understand and find less threatening than speaking about hallucinations or the patient "going crazy."
For most patients in advanced stages of dying, content is the real issue, not level of consciousness or orientation. What is it that is being experienced? Is it pleasant or unpleasant, ecstatic or hellish? How can we help when suffering occurs that results from unpleasant content?
In analyzing the content of certain altered states at the end of life, we begin to appreciate how different it is from delirium as it is usually discussed in geriatrics and psychiatry. Toxic delirium, the type usually discussed by geriatricians and psychiatrists, is usually an unpleasant experience. The level of consciousness often fluctuates. The visual content of the experience is often very simple, for example, neon-green ants going up the wall or purple snakes under the bed - repetitive patterns often in psychedelic colors. I suspect such patterns result, in some way, from a deranged neuroexcitory state, perhaps one that enhances similar patterns that we see when our eyes are closed. I call this state a toxic delirium because in my experience there is usually a correctable, toxic cause. The delirium usually resolves when the cause is addressed. These patterns are commonly imposed on an otherwise normal experience; the ants or snakes are seen in a hospital room, not on a cruise ship.
Altered states at the end of life, if not associated with toxic delirium, most closely resemble dream states. Although levels of consciousness may vary, they can also be entirely normal. When there is overlap of wavelengths between waking reality and altered states, the introduced content is very different from that of toxic delirium. It usually involves people and a story (often relating to travel, as in Fred's case). Some have called these experiences "pre-death visions."39 Most commonly seen are deceased relatives. It is remarkable how frequent an occurrence this is - estimated to occur before at least 25% of deaths. Also remarkable is the fact that virtually always the relatives are, in fact, dead; visits by otherwise unseen living relatives are rare. Next most frequent, in my experience, are guardian beings, angels and others. These beings (and often deceased relatives) seem to act as guardians of a barrier. Often, they will communicate to the patient that their time (to die, to cross-over) has not yet come or some similar message. I have noticed no correlation between the appearance of such beings and religiosity in patients. Usually, such angelic visitors are welcomed, although frustration may be experienced in not being allowed to complete the journey, join the group, or cross-over. (George, a devout atheist patient of mine, was an exception to this rule. When angels appeared in his room, he screamed, "Get out of here, there is no God!") Finally, other beings who are unknown to the patient will occasionally appear, most frequently children. In my experience, unlike the adults, the children are usually unknown to the patient and usually do not speak. They may walk in front of the patient's room or sleep at the foot of the bed or in a chair. Only rarely are the visits of such beings disturbing to the patient.
The one disease process I know of that can mimic these predeath visions is Parkinson's disease, especially when associated with Lewy bodies dementia.40 These patients also have visual hallucinations, usually of people. The distinction is that usually the people in visions are unknown to the patient. Initially, the Parkinson patient may be aware that these people are not real; they may be only shadow figures. When turned to, they disappear. As the disease progresses, the patient usually becomes more paranoid and very disturbed by more persistent and troublesome visitations. Rare as Lewy bodies dementia is (a misnomer, in my opinion, as memory loss is not usually so prominent as is the fluctuating altered state), this disease is near to my heart because my mother suffered greatly with and died from this terrible illness.
In advanced stages of dying, when there is a more dramatic shifting of wavelengths, the entire experience of the patient can change in a dreamlike fashion. Frequently, past life events are relived. Life dramas may be worked out in metaphorical form, as happened in Fred's case. If the content of the experience is pleasant and lacks suffering, direct intervention is unnecessary. Explanation and coaching of the family is often required to explain that such states are common and that as long as the experience is pleasant, no treatment is needed. Family members may themselves be distressed and experience a grief reaction as they now feel disconnected from the dying person. If the patient becomes distressed because of disturbed content, then further evaluation and treatment is required.
The possibility of personal growth in the dying process is a central tenet of the hospice movement. Such growth may occur despite or because of suffering. Not all growth requires normal orientation. In fact, my experience tells me that altered states are necessary for growth in certain people, as I believe was the case for Fred, the librarian. Only then are certain deeper truths revealed.
I end this section on altered states with an additional brief story. One day while on rounds I came upon Mr. R. He was sitting up in bed with his eyes closed and a half-smile on his face. In front of him was a stand with some flowers on it. "Are you resting?" I asked. "No," he replied, "meditating." He told me he was in his garden looking at the flowers. He was not "imagining" this garden, he was there. I asked, "Do you see that one flower?" He nodded yes, and I could sense that his mind was coming into focus. He said, "A perfect rose. No beginning or end. Nothing more to say." With that we parted, and for me this became his death poem, as he died shortly thereafter. I am grateful for the gift of his wisdom in this most wonderful of poems.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.