Preface

This thought-provoking and fascinating book discusses the intense process of dying, the process of acceptance and surrender, and in particular the extraordinary experiences that apparently occur quite often during the dying process. It’s such a significant story because, to this day in Western society, dying and death are still considered taboo subjects. Death is a concept that has seemingly been banished from our society, although ‘death’ itself is perfectly natural; people die every day. In the Netherlands for instance, an average of 375 people die each day, meaning that approximately 135,000 people die every year. Dying is as natural as being born. The questions we ask most in the final stages of our lives are: what does death really mean, what is life, and what will happen after I die? Why are most people so afraid of it? Can’t death also be seen as a welcome release after the sufferings of unrelenting illness? Why do doctors often still experience a patient’s death as a failure because the patient didn’t stay alive? Why aren’t people today, in the final stages of their life, allowed to ‘simply’ die following a serious, incurable illness, instead of choosing to go through chemotherapy or being kept alive by a respirator or fed artificially through tubes? Why is our initial reaction to hang on to life and to put off the moment of death no matter what? A doctor’s priority is usually to keep a patient alive as long as possible, usually in accordance with the patient’s wishes, who in spite of the debilitations, pain and anxiety still wants to stay alive as long as possible. This is why we often hear about ongoing treatment or overtreatment. Is our fear of death the main cause of this and does this fear stem from the fact that we don’t really know what death is? Without passing any kind of judgement, one can imagine that, as long as the patient and his or her family focus on the treatment, the inner preparation for death is neglected. When it eventually becomes clear that there really is no point in further treatment, it is then said that ‘the patient is beyond treatment’, that ‘nothing more can be done for the patient’, and these incurably ill patients are then often referred onward to a hospice. In hospices, it is accepted and expected that people will pass away and it is here that the taboo about death can be overcome. This is of course an intense process, for the patients and their families, as well as for those who work in terminal and palliative care.

In contrast to hospice caregivers, death is a taboo subject for most terminally ill patients and their families, because they’ve tried to deny or postpone the end of life and their own process of dying for as long as they can. And so they suppress all thoughts about the finality of life and avoid talking about it. It’s only natural that dying and having to say goodbye evokes all kinds of emotions. Some cherish the idea of finding reconcilement in their life, by coming to terms with the life they lived or being able to say goodbye to their loved ones. Others prefer to go to bed one night and simply not wake up again the next day. There are also those who wish to die a painless death, who would like to stay in control or die in a dignified manner. As with all phases of our lives, dying is much less of a manageable or controllable process than we would like it to be. Time and time again we are faced with the fact that, in most cases, the circumstances of our deaths will be completely out of our control. We become fearful and unsure at the prospect of having to say goodbye to loved ones and many of us have no idea how to deal with the emotions and feelings we will face.

Our own unresolved emotional issues also play a role when someone near to us is facing death. We lose our capacity to say and do those things we intuitively know are right. Despair and isolation could be the consequence, and not just for the person facing death. Family and friends also suffer when they aren’t able to understand what is happening. The person who is dying usually knows deep down that he or she is in the final stages of life. Families are also often aware that the end is near, yet they generally don’t dare to speak openly about it. In a hospice, it’s important and a great challenge to make terminal patients (‘residents’) aware of what they already know, albeit subconsciously.

In this book, Ineke Koedam consciously devotes specific attention to the extraordinary experiences of awareness that can occur during the final stages of life, because they seem to foretell the impending death, and can offer comfort during the dying process, for the patient, the family, as well as the hospice caregivers.

We regularly hear of special experiences, such as deathbed visions, from people who are close to dying. Family members and hospice caregivers have come across these experiences but are often reluctant to talk about them out of fear of not being believed. We only begin to realise the significance of these experiences and the deep impression they leave the moment people have the courage to talk openly to others about them. The most common phenomena, or at least those that are reported the most, are the so-called visions that are experienced during the final stages before death. A well-known example of a deathbed vision is that in the days or weeks before his or her death, a patient will talk about visitations from a deceased partner or from parents, children, family members, friends and sometimes even religious figures. Patients report that these people who have already died have come to collect them or to help them to release themselves from their bodily illnesses and their life. The fact that one can contact the conscious soul of deceased loved ones and communicate with them, provides an entirely new perspective on what death could be like. What it seems to suggest is that those who are dying are met by loved ones who have already passed on and are taken to another non-earthly reality full of light, peace and unimaginable love; a reality that is usually considered much more real than our own daily lives. It’s as though the dying can move between different ‘worlds’. Sometimes they say that they have been somewhere else, but this is also noticed by families and hospice caregivers. In most cases, these events are seen as spiritual experiences which alleviate the dying process and ease the transition into death. Experiences of the dying make us aware of the possibility that there is life after death. These experiences often seem to help the departing person let go of the physical world and overcome their fear of death, and indeed can sometimes offer comfort to those who are left behind, if the experiences are understood and accepted. Many of the reports of deathbed visions or end-of-life experiences are not seen as such, or are interpreted as hallucinations, terminal confusion, or the side-effects of medication. However, these deathbed experiences simply cannot be compared with the hallucinations that result from medication, confusion, or dementia, which cause fear and anxiety.

End-of-life experiences usually occur during a state of clear consciousness and seem to be powerful personal experiences which are hugely significant for those involved, as well as for their families, friends and carers. When people are nearing the end of their lives, they take stock of the lives they have lived. This can kindle a desire for reconcilement and prompt the person dying to resolve unfinished business in life before death. Settling unfinished issues alleviates existential unrest and discomfort and enables the dying soul to prepare spiritually for approaching death. Reconcilement doesn’t just concern relationships with family members and loved ones; it is also about acceptance of the life lived. When it comes to the final reckoning, it is always the dying person who passes final judgement, and this is when believers need God’s mercy. By coming to terms with life as it was lived, the dying person can better prepare for approaching death. End-of-life experiences seem to play a vital role in this process.

Those who have never dealt with end-of-life experiences described in this book might easily dismiss them as fantasy or as some kind of disorientation or confusion. But when a person has gone through such an experience themselves, it leaves behind a deep and lasting impression. It will often lead them to see death from a different perspective. Many will gain new insights into what dying really means and will find profound meaning in both life and death. End-of-life experiences are usually comforting, encouraging, and reassuring for the dying and for close family members. Hospice caregivers often recognise what is happening and call such experiences meaningful, valuable and profound. The experience we call death is a process that belongs solely to the person dying and the question remains whether carers and family members are willing to grant him or her this unique and essential process. It not only asks for an open attitude from those who are close but also an understanding of what dying really is so we can truly allow the dying to deal with the process themselves and not take over or interfere in our own interpretations of what is right. End-of-life experiences transcend thought and judgement. Each person dies in his or her own way. That’s not to say that people die as they have lived. Dying is the last chapter of our lives and is unique for each and every one of us. There simply is no wrong or right way.

In respect of both content and consequences, end-of-life experiences can be identical to near-death experiences, which can be explained by the notion that consciousness can function outside the body independent of brain activity. The concept of this boundless consciousness, not withheld by time or space, can explain not only end-of-life experiences but also other phenomena connected with death, such as the appearance of one’s parents at the moment of death, known as a perimortal experience. This kind of experience often takes place at night. It isn’t really a dream but rather a kind of conscious contact while we are asleep, which leaves a particularly deep impression and has a much greater feeling of reality than an ordinary dream. With perimortal experiences we receive, sometimes from a great distance, information about the moment of death and sometimes even the way in which the loved one has died, even though we could not possibly have known these details when they actually happened.

In this context, it is also interesting to mention terminal lucidity, where patients who have suffered from Alzheimer’s disease or severe dementia for years and who no longer recognise their family, suddenly have a moment of lucidity in the last moments of their lives and are able to recognise their children or partners and call them by name, say goodbye, after which they can pass on. This terminal lucidity has also been reported in patients who for days have been unable to talk or who are in a coma. These experiences cannot be explained by our current medical knowledge, because the brains of these terminal patients are seriously damaged. However, a considerable number of nursing staff in hospices are quite aware of this terminal lucidity affecting dying patients.

A shared death experience, also called an empathic near-death experience (NDE), is experienced by healthy people who are present at a deathbed, when at the very moment of death their consciousness is absorbed into the death experience of the loved one. They leave their bodies and travel through the tunnel towards the light. They will sometimes see family members who have passed on and even the flashbacks of the life of the loved one who has just died. Then they suddenly return to their own bodies to stand once again at the bedside of their loved one. Raymond Moody has recently written a book about these kinds of experiences, in which he points out that these experiences can be identical to an NDE but they affect completely healthy people who have a close bond with the dying person.

Since nursing staff and volunteers, particularly those working in hospices and other terminal care facilities, are more open to all these special experiences that can occur with dying patients, they are recognised and acknowledged more often. Dying patients should be given the room to talk about them, without carers or family members casting doubts about what they have experienced. When nursing staff ask open-ended questions about these kinds of experiences, it becomes a great source of support for both the patient and the family, because an end-of-life experience can considerably lessen the fear of approaching death for patients and families. By being open to the significance of the content and the consequences of this broadened or heightened awareness in the last stages of life, it is possible for the terminal patient, their family, and the hospice caregivers to gain new understanding into the nature of death, which is simply the end of our physical being, while our essence, our conscious self will still exist.

It has become apparent from the special study carried out by Ineke Koedam amongst staff in several hospices in the Netherlands that end-of-life experiences are more common than we might think and that they happen in the weeks, days or hours before death. All workers in the healthcare sector, as well as dying patients and their families, should be made aware of the special experiences which can occur in the final stages of death. Significant life changes, including the disappearance of the fear of death, are often the results of these experiences. By giving these experiences scope and attention, without passing any kind of judgement or opinion, the patient and their family can integrate the experience into whatever remains of that life. It is therefore crucial to concentrate on the individual expressions and needs of the dying and to listen to and accept their end-of-life experiences without judgement or commentary. The recognition and acceptance of the experiences and feelings of the dying during the transition into death, such as the end-of-life experiences described in this book, are actually part of spiritual care. In the definition of palliative care, it states that not only physical care but also mental, social and spiritual care are vital. We must try to avoid interjecting our own beliefs and assumptions about dying and death. I am convinced that this book will make a huge contribution to the acknowledgement and recognition of end-of-life experiences, which can diminish the fear of death even in its final stages.

Pim van Lommel, Cardiologist, author of Consciousness Beyond Life: The Science of Near-Death Experience.