"Does my wife understand about the passport and ticket?," asked a man succumbing to the ravages of pancreatic cancer of a Virginia-based hospice nurse named Maggie Callanan (Callanan, along with fellow nurse Patrica Kelley, would go on to coin the official phrase, "nearing death awareness," and co-author Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying). After having helped hundreds of patients transition to death, Callanan believes this vision of a journey ahead is no accident. The dying are not picturing an end. They are seeing death as a trip—possibly to somewhere else. This sounds like a side effect of the powerful pain killers they are taking. But is it? In one major cross-national study (by psychologists Karlis Osis, PhD, and Erlendur Haraldsson, PhD, of the University of Iceland) comparing deathbed experiences in the U.S. and India, the majority of patients who were still conscious within an hour of death saw deceased loved ones beckoning, regardless of whether they were medicated. When I interviewed Audrey Scott, 84, who was dying of cancer, she was receiving visits from her adopted son Frankie, she said, who had predeceased her by several years. He sat quietly in a nearby armchair.In some cases, people see friends or family members they simply weren't aware had died. In one of the first well-investigated cases of a deathbed vision, a mother dying in childbirth told obstetrician Lady Florence Barrett in a Dublin hospital that she saw her deceased father before her. She also saw something that confused her: "He has Vida with him," she told Lady Barrett, referring to her sister, whose death three weeks earlier had been kept from her. "Vida is with him," she repeated wonderingly. It has become a bit of a cliché in our culture to talk about seeing "the white light." But, the truth is that this light is also perceived as wisdom and love. It's a feeling as much as a visual experience. Those who have near-death experiences—retaining consciousness during cardiac arrest, for example—are veritably shattered by the emotional power of this light. Dr. Yvonne Kason, who had been in a plane crash, compared it to an extraordinary maternal love. "Like I was a newborn baby on my mother's shoulder. Utterly safe." Then she added: "It was like I'd been lost for centuries and I'd found my way home." Nurse Callanan frequently observes her patients being present, conscious, in this world and also beginning to see and remark upon the beauty of another.It came as a true surprise for me to learn that study after study confirms that roughly 50 percent of the bereaved sense the presence of lost loved ones, either in the moment of death, or sometime later. It happened within my own family. My father died abruptly, without a warning illness, in the middle of the night in 2008. My sister Katharine, awake in her bedroom 100 miles away, suddenly sensed a presence near her, and felt hands gently cupping the back of her head. She was suffused with feelings of contentment and joy, an experience so vivid and strange that she found it remarkable—and shared it with her son before learning that our father had died. Although psychiatrists call these instances "grief hallucinations," the science of such subjective experiences remains poorly understood; certainly, it doesn't explain how we can have them before we know someone has died. One man told me about going downstairs to breakfast during his childhood, and seeing his father seated at the table, as always. He was totally mystified when his mother proceeded with the news that his father had died in the night. "But he's sitting right there!," he said. His father then faded. Only 5 percent of these experiences are visual, according to a study done by palliative-care physician Michael Barbato at St. Joseph's Hospital in Auburn, Australia. The majority involve the sense of a presence—not a fleeting, shadowy sense, but a vivid and specific one, often spurring people to make urgent phone calls, or to change direction as they're driving, or to burst into tears. It can happen at the moment of death, after some weeks, or even years later. Said the Toronto advertising executive Karen Simons, of a cold night six weeks after her father died: "I'm driving on the highway, and into the passenger seat comes Dad. I could feel him settle in. He had a very distinctive lean to the left. He rode with me from Kennedy Rd. to Pickering (10 miles). It was incredibly real, and it was completely transforming." Research in 2010 by psychiatrist Raymond Moody, PhD, who coined the term, "near-death experience" in his groundbreaking 1975 book Life After Life, suggests people can occasionally co-experience the sense of entering the light. As Florida-based palliative-care psychologist Kathleen Dowling Singh, PhD, has noted, "The dying become radiant and speak of 'walking through a room lit by a lantern,' or of their 'body filling with sunlight.'" Sometimes, if only for a moment, their family members do, too. The psychologist Joan Borysenko, PhD, for instance, described having such an experience when her 81-year-old mother died at Beth Israel Deaconess Medical Center in Boston while Borysenko was on faculty at Harvard. The room seemed to fill with a brilliant light, which both she and her teenage son saw, as they watched her mother rise spectrally out of her body. We fear death in our culture, and find it difficult to talk about and witness. But perhaps the dying understand more than we do, and can offer us comfort, if only we could listen to what they're attempting to say.
 Patricia Pearson is the author of Opening Heaven's Door: Investigating Stories of Life, Death, and What Comes After and When She Was Bad...: Violent Women and the Myth of Innocence.
Saying goodbye, preparing for time of death and your next steps.
Each person is unique and it is hard to predict exactly what may be encountered as our loved ones approach the end of life. Often, there are physical, mental, and spiritual signs that death is near. On the physical level, the body literally begins to shut down. These changes are normal and to be expected. They are not considered a medical emergency at this time of life. Your HopeWest team can provide additional information about what to expect. The following are things that may be observed and comfort measures that can be provided.
This means the body is reserving energy for other essential functions. The person will not experience pain or other discomfort, such as feeling thirsty, as this is a natural process. Often, as people become dehydrated, their discomfort lessens. It is important not to try to force a person to eat or drink. Doing this generally makes a patient more uncomfortable and will not improve their condition.
You may notice a coolness, paleness or mottling of skin on the arms, legs and back. This occurs as circulation is conserved for vital organs. Blankets can increase the patient’s comfort. We avoid using electric blankets or heating pads as they can cause burns without the patient feeling it due to the lack of circulation.
As muscles relax, the patient may lose control of these functions. There is often a decrease in urine output. Patients should be kept clean and dry. Turning the patient frequently is important to assure good skin care and to prevent bed sores. A catheter may be considered for urinary incontinence.
Gurgling or gasping may occur as the muscles in the throat tend to relax. At times, the patient may appear to stop breathing for a moment and then gasp. This is called Cheyne Stokes breathing. Elevating the head may decrease the sounds. To help with secretions, gently turn the patient’s head to the side and wipe out the mouth with a damp cloth or mouth sponge. Suctioning is not helpful and can make secretions worse.
While death remains one of the universe’s mysteries, many believe the spirit of the dying person actually begins a process of release from the body, its environment and all emotional attachments. This release tends to follow its own priorities, including the resolution of unfinished business, and it will always relate to a person’s lifestyle, values and beliefs. It is often said that, “people die consistent with the way they lived.”
Sometimes a person may become restless, try to get up or make repetitive motions. Try to avoid restraining these motions. Speak in a quiet, natural way. Try reading to the person, playing soothing music and keeping lighting slightly dimmed.
The person may become confused about time, place and/or the identity of people. Many people at this time speak of going home. It is important to speak softly and clearly remind the person of where they are and any care that is being given (ie: “I am going to give you this medicine to keep you from hurting.”) Try to keep as many things the same and in routine as possible.
A surprising number of people make out of character statements. They may speak in metaphors, speak to other loved ones who have previously died or talk about being somewhere they’ve never seen before. Research suggests these may not be hallucinations, but rather a form of communication.
As death approaches, people may begin to withdraw. They may close their eyes often or seem to have a decreased desire to communicate. This is often hard for loved ones. Try not to take it personally. It is a normal process of letting go that has to happen. The person may actually become unresponsive at some point. Know that hearing remains even when a patient appears to be in a coma. Be cautious in what you say during this time. Speak to the person in a normal tone of voice, identifying yourself by name. Hold their hand. You may want to touch their neck as this is a place where sensation seems to stay. This can be a good time to let the person know what they have meant to you.
Not everyone gets to say goodbye to the people they love before they die. Seize the chance if one seems to present, so you never have to wish you had told them something. Tell the person you love them and what you have loved about them. You might share special memories, activities or places you remember. Consider saying these things:
Sometimes it is appropriate to give the person permission to go. Often, people are so worried about how their loved ones will cope when they are gone that they hold on despite prolonged discomfort. You may provide the key for the person to release and let go by giving your permission. Tears are a natural part of saying good-bye. There is no need to hide them if they come. These will be your final gifts. Don’t worry if you say something when the person is not responsive or has their eyes closed. They will hear you. When you lose someone, a period of grief usually follows and it may be difficult for you to concentrate or focus on your responsibilities. The HopeWest team understands this and will help you manage both your personal and financial responsibilities.
Call us at (866) 310-8900 and ask to have the HopeWest nurse paged. Do not call 911 or the emergency number for your area. You may call the secondary backup number at (970) 241-2212, if necessary. Spend time alone with the patient if you would like and wait for the nurse to arrive.
If you or other family members would like additional time, the patient’s body may stay at home for up to 24 hours. A HopeWest team member will call the mortuary when the family is ready and the mortuary will pick up the body when requested to do so. If a decision has been made to donate organs or tissues, the nurse or funeral director can answer any questions you may have and assist you in signing the required consent forms.
At the appropriate time, contact the funeral home of your choice. They will help you with any specific questions and clarification of their services, which may include:
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