Dying – the final journey

Peter Fenwick, Hon Senior Lecturer Kings College Institute of Psychiatry, and Department of Neuroscience, Southampton University

Published in JHH15.2 – Healing Journeys

As a neuro-psychiatrist I worked at the Maudsley, John Radcliffe, and Broadmoor hospitals. But I would say my most compelling (and challenging) research has been into end-of-life phenomena. I have a longstanding interest in consciousness, and in what near-death experiences can tell us about its relationship to the brain, and perhaps to a wider field of non-located consciousness. My wife Elizabeth and I have written a book about the experiences of dying people, their relatives, hospice and palliative care workers.We hope The Art of Dying will help prepare those who are caring for dying people to understand some of the extra-ordinary, but far from uncommon, experiences that come about in the final days or hours of life.

Birth and death are perhaps the two most significant landmarks in a human life. And yet while we may make extensive preparations for a birth, we do very little to prepare for death. Or perhaps I’d better phrase that another way. We do little to prepare for the process of dying. Death is another matter. Death has its own rituals – the wake, the condolences, the funeral service and burial. But these are all rituals to mark the end of a life, to help the bereaved acknowledge and come to terms with a death. They do nothing to help the dying person through the dying process. And yet if you ask 10 people how they feel about death and whether are afraid, the chances are that most will say it’s not death itself that they fear; it’s the process of dying and the anticipation of annihilation. It is this that we should be focused on. Because it is a process. And it should be, and can be, a peaceful process, though it is one that most of us know very little about.

Understanding how we die

A peaceful death needs preparation, and most of us are not prepared. We know that death is the shutting down of the body and brain, but we know much less about the dying process and the mental states of the dying. This is largely because we are attached to life, and in our culture death is something to be feared, and therefore ignored. Our attention and our efforts are directed much more towards prolonging life than preparing for the inevitability of death. And so we know very little about it.

It is only recently that we have begun to study the subjective process of dying and the many phenomena which have been found to occur around the time of death. There is very little argument now about whether such phenomena actually occur. The argument is usually more about whether their origin is spiritual or organic. But does this matter? The point surely is that experiencing them can transform a process that has always been thought of as fearful into something positive, indeed, joyful. Wholihan (2016) points out that these experiences are both under-recognised, and cannot easily be explained within a traditional medical model. Yet those who consistently act as caregivers to the dying say they validate such experiences. And Melvin Morse, a paediatrician and researcher found ‘deathbed phenomena to be an integral aspect of the dying process’ which, he says, ‘…should be interpreted as being part of the spectrum of spiritual events that happens to the dying, their families and their caretakers’.

Learning about dying

The data in our own study, from 2004 to 2010, came from interviews with 110 carers in one palliative care team, one nursing home and two hospices in England, and three hospices in Holland, plus data collected in an Irish hospice study by Dr Una McColville. Following our TV and radio discussions we also received more than 1,500 emails, data very rich indeed. We found that although almost all the carers we interviewed were aware of and interested in the phenomena they had observed, very few understood their significance. Only the Dutch carers had received proper training in this area, whereas the British were poorly trained and the Irish training was worse. Clearly then, the training of carers – doctors, nurses, palliative care and auxiliary staff – should be a priority Ideally every adult should know of these possibilities. Perhaps education about the journey of dying ought to begin in schools.

The phenomena most often experienced by the dying include visions – usually of dead relatives, sometimes of unknown spiritual beings. We are told that these deathbed visitors draw nearer as death approaches may and even sit on the bed of the dying person, in the most human and comforting way.

I joined my daughter, after an hour, at the hospital and we both sat chatting to my mother. She spoke to me about my life… and my future – all interspersed with references to “these people” who were now at the end of her bed. She told us that she wouldn’t be there the next day as “these people” would “pick her up when she fell and take her on a journey”. We were slightly spooked at her comments, but she was totally at ease….She insisted that we shouldn’t cry when she died. We then left her and said we would return later on Christmas Eve.

The deathbed visions may begin a week or so before death; and then in the final days or hours, the dying person may describe the feeling that they are transiting in and out of a new reality. This ‘new reality’ is very similar to the world described by people who have near death experiences, full of light, love and compassion, feelings of unity, and often with presences who are usually described either as dead relatives, or as spiritual beings, and who are there to help them through the dying process.

Suddenly she stared intently up at the window. This lasted only minutes but it seemed ages. She suddenly turned to me and said, “Please Pauline, don’t ever be afraid of dying. I have seen a beautiful light and I was going towards it, I wanted to go into that light, it was so peaceful I really had to fight to come back…”. Sadly she died the next morning…but I knew she had seen something that day which gave her comfort and peace when she knew she had only hours to live.’

I was nursing my friend who had definite views that there was no afterlife. In her last couple of hours she became very peaceful and arose from her unconsciousness periodically saying clearly and happily such phrases as “I will know soon”, “come on, get on with it then, I am ready to go now”, and “it is so beautiful”. She would immediately lapse back into unconsciousness after uttering these phrases. She was very obviously content, happy and at peace. It was a wonderful experience for her partner and me.

Spiritual care of the dying

A Swiss palliative care theologian, Monica Renz, has a new approach to spiritual care of the dying. It requires, she says, more than just giving a response to a patient’s spiritual beliefs and attitudes. It has to do with understanding how connectedness and consciousness and communication are changing during the dying process. Even when individuals are ill or suffering or dying they often have spiritual experiences of grace, and encounters with the transcendent or the divine. When this happens the person is in a state quite different from everyday consciousness. Most importantly, Monica Renz insists that spiritual experiences are powerfully independent of religious attitudes. This is something we have found time and again in our own research.

In her book Dying: a transition (Columbia University Press, 2015) Monica Renz describes three phases in the dying process.

  • Pre transition

The dying person is still in everyday consciousness and may feel needs (eg thirst, need for bonding), pain, and emotions (fear, joy). Many fear losing control and their dignity as they come to realise that their death is inevitable. In this everyday, ego-centred, pre-transition consciousness people can become locked due to denial, reactivated traumas, anxiety, strong attachments or unresolved family issues, and awareness of past negative behaviour. This is commonly called terminal anxiety. Loving support, and being given permission to be released and help in finding meaning may help them move on.

  • Transition

Transition itself entails the loosening of ego consciousness. People typically show physical signs of anxiety and struggle. They may be restless, convulse, pour with sweat, or simply stare. Traumas may be reactivated. Some may experience transition in symbolic scenarios such as apocalyptic fights (although we have never seen this).

  • Post transition/awakening

In this state the everyday ego is no longer dominating, for the person has moved into a state of non-symbolic, or non-dual consciousness. In this state they seem serene, beyond anxiety, pain or powerlessness, usually unable to speak but still able to hear and to communicate by gestures, or single words. In this state of consciousness joy is the predominant emotion: intimations sometimes of reconciliation, of having visions and a sense of achieving peace are observed.

Monica Renz estimates that as many as 90% of people reach this transcendent state before death. She also provides several mental attitudes and practices that may help us face death with equanimity and reduce suffering. She suggests – as you might expect – that the surest way is to have had a previous near death experience. People who pray or meditate regularly, or have had any kind of mystical experience, may be much less likely to suffer, or be afraid. If you hope to experience ‘joy at thine end’ curiosity may be the most effective attitude: simply to look forward to death and be interested in the journey.