"Over there. Outside by the window sill. Oh, it's so nice that they came."
Many years ago, as a nurse on an inpatient hospice unit, I had this interchange with a dying patient. Relatively new to the field of hospice nursing, I wasn't sure what I was witnessing. Though I don't remember my response, my guess is it consisted of something along the lines of "oh." Thus began my introduction to nearing death awareness (NDA).
Nearing death awareness is a phrase that describes a special form of communication used by the dying. Another term for this type of communication is symbolic language. In the book, Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying, authors Maggie Callanan and Patricia Kelley define nearing death awareness as a unique knowledge about the process of dying as communicated by dying persons.¹ Callanan and Kelley are hospice nurses who deciphered and documented the communication of their dying patients — communication they described as vague, symbolic, and difficult to understand. Final Gifts is a powerful resource filled with stories in which dying persons communicate their needs and wishes, reveal their feelings, and provide glimpses into the transition from life toward death.
What does it look like?
NDA occurs in those patients who are approaching death or are actively dying. Patients may appear confused or disoriented, or as though they are having a dream. Often, patients will speak to people whom others cannot see, or name people who have died before them, such as a mother, father, sibling, or child. It is common that dying persons reach out as though trying to touch someone who isn't there, or gesture, wave, and perhaps even hold an unseen object. During these experiences patients frequently describe spiritual beings such as "angels" or describe bright colors, light, or a beautiful place.
These experiences can be quite comforting for patients, but often leave observers unsettled and perplexed since patients can appear to be in a different realm of existence. This sense of discomfort is especially true if the person witnessing the behavior is unprepared, having never heard of NDA.
Nearing Death Awareness and Near Death Experience: What's the Difference?
Though they sound similar, it's important to distinguish between nearing death awareness and near-death experiences. Both are potentially transforming experiences, though in very different ways. Near-death experiences occur when a person who experiences a catastrophic event, such as a heart attack or near drowning, appears to die and then is resuscitated. Survivors of these events typically describe an "out-of-body" experience. A near-death experience seems to have the purpose of assisting the person to return to life in a renewed manner, often with a source of peace regarding their own mortality.2,3 For instance, a near-death experience may be described as a person who survives a traumatic accident and views his body and the activity of the medical team from a distant point in the room. He goes on to describe his encounter with an entity who explains that it is not yet time to leave life, and that he must return to his body. He reports this instruction to return to bodily existence as quite distressing, having glimpsed a different and appealing realm. However, upon surviving the trauma, he is determined to live his life more fully.
NDA, on the other hand, seems to prepare patients for a transition from life to death and beyond.³ The visions common to NDA typically involve encounters with deceased loved ones whose role appears to help the dying person reconcile leaving behind life as they know it. Most commonly, the entities in the visions are beckoning the patient and welcoming him or her toward a peaceful and appealing new sphere of existence.
For many patients, the transition from life to death includes the completion of several tasks. For instance, they may need to resolve a conflict, ask forgiveness, or ask for permission to die. Nearing death awareness is a process that may help patients with these tasks. They may attempt to review their lives by identifying recurring themes or trying to make sense of their contributions to the world. Many times, relationships are at the core of their interest and may be the focus around which the symbolic language centers. Consider this story from Final Gifts: an elderly man with a terminal illness lived longer than seemed humanly possible. As death drew near, he grew increasingly restless and anxious until his wife and daughter asked whether he was fearful of dying, to which he responded, "no." Upon further questioning, he voiced his concern that his wife wouldn't be able to manage without him. During their final conversation, he repeatedly gestured toward another place in the room, as though irritated by an interruption. In a moment of frustration he turned his head away from his family and announced, "Would you wait? I'm not ready yet!" Returning to the conversation, his wife reassured him that indeed she would learn to manage with the help of their daughter. He died shortly thereafter, presumably now ready to join those who were to accompany him on his journey. (p. 85-87)
Listening versus Hearing
A challenge for healthcare providers and loved ones is to listen for the message that the dying person is communicating through symbolic language. As with all communication we must listen rather than simply hear. Think for instance, of the potential meaning in the following statements:
"Are my shoes at the door?"
"Sam doesn't know about the trip."
"Mary's going to miss the boat!"
If the patient is no longer ambulatory and not going anywhere, taken concretely these statements don't make a lot of sense. However, thinking about them symbolically allows the observer to ask why the patient needs shoes or to glean details of the trip or the urgency of getting on board the ship.
Too often, NDA is confused with other clinical experiences such as psychiatric illness, delirium, or medication side effects. At a time when the dying person may be attempting to describe his or her dying experience or communicate something he or she needs to do before death, the response frequently is to administer anti-psychotic medication, ignore the patient, or dismiss him or her as simply "confused." Any of these responses blocks the message the dying patient is trying to provide, and potentially leaves him or her feeling bewildered and alone. By truly listening, loved ones and caregivers learn more about the needs of a specific patient, as well as gaining a better understanding of death itself.
Things to Remember when Communicating with Dying Patients
We all can learn to communicate more effectively with patients at the end of life. Here are some tips to remember about the role of NDA and how we can use our patients' experiences to guide their deaths.
Listen to what your patients are sharing and think about how what they say fits into their lives. Did your patient work around water? Is he talking about taking a boat trip? Perhaps the patient was an artist. Is she talking about needing her easel to paint what she sees? Try to determine what tasks he or she may still need to complete — then act to facilitate that completion. Ask family members to help you interpret these statements.
Let the patient lead the way. Don't contradict, cajole, belittle, argue, or use medication to try and bring them back to "reality." NDA can be very comforting to patients, and will be even more so if they feel supported in the experience.
Be present. A natural part of dying is to withdraw from people and activities. The patient may not have energy for conversation and yet will appreciate your calm and quiet presence. In this setting often comes the unexpected and wonderful gift of symbolic language.
Acknowledge the experience by asking gentle questions, such as "Where are you going?" "Who do you see?" or "What is it like for you?" By doing so, you allow the patient to share their newly discovered meanings in the process of dying.
Provide education and support about NDA to the loved ones of dying patients. Once they are aware of this common experience, they too will be prepared to receive the insights into life and death that only the dying patient can offer.
We would love to hear your stories of Nearing Death Awareness. Please take a moment to send your thoughts to us via the PERT Program contact page.
References
Callanan M, Kelley P. Final gifts: Understanding the special awareness, needs, and communications of the dying. Simon & Schuster: New York. 1992.
International Association for Near-Death Studies (IANDS). Near-death experiences and nearing death awareness in the terminally ill. From http://www.iands.org/terminally_ill.html. Page last updated May 31, 2003. Accessed December 28, 2004.
Hinshaw DB. Spiritual issues at the end of life. Clinics in Family Practice. 2004; 6 (2) 423-40.
Additional Resource
The Hospice of the Florida Suncoast™. Caregiver resources: Nearing death awareness. Available from http://www.thehospice.org/deathaware.htm. Accessed December 28, 2004.