If you buy one book on dying make it this one. British neurologist Peter Fenwick’s extraordinary The Art of Dying lends scientific credence to all the weird paranormal phenomena I’ve experienced while Laura lay dying last year and in the 15 months since. Fenwick spent nearly 40 years reviewing thousands of death bed phenomena; lights shining out of the dying patient’s head, the patient chatting to ‘invisible’ deceased relatives in their room (even learning the precise hour of their death from them) and some (like Laura) reaching out to touch spirits no-one else can see. In one typical story a dying grandmother suddenly sat up and cheerfully announced: ‘I’m going now and here’s Dad and George [both dead] come to meet me.’ Then passed. In Fenwick’s opinion these extraordinary events are not due to drugs or pathology (they are not delusions of a dying brain or a morphine haze), nor can they be dismissed as the wild imaginings of religious fanatics as they occur in equal numbers to believers and non believers alike.
According to Fenwick, the message conveyed by deceased visitors at the bedside of the dying is that ‘death is nothing to be afraid of’ and that it is not an end, but a passage to another realm. Many of the dying who can still talk in their final moments, report on the beauty of what they are seeing as they transition. Like Steve Jobs calling out in amazement: ‘Wow! wow! wow!’ Laura said a final few words with her last breath, but I couldn’t make them out.
Reading Fenwick’s book made me wonder if the stream of light I saw coming from the crown of Laura’s head in her last hours (and which I thought was her spirit leaving her body), was instead a ‘fetch candle’ as the Irish call it. Fenwick says some relatives see a manifestation of the light tunnel (described in Near Death Experiences) which surrounds a dying person. ‘It is often described as emanating from, or surrounding, the body and it usually lasts over the final dying process.’ Family members who see this usually experience great calm and a sense of peace and wonder. I certainly did.
The second half of The Art of Dying describes all the ways the deceased communicate with loved ones after they’ve ‘gone’. Most common are electrical disturbances – of the kind I experienced with Laura – radios and computers suddenly playing, lights flashing, phones ringing, clocks stopping -often at the exact moment of death. There are also the wonderful sensory phenomena like experiencing a loved ones presence (one woman felt: ‘my husband in bed with me, with his arms around me’), odd smells, ghostly apparitions and columns of light, and (a personal favorite), animals and birds who behave in tender intuitive ‘human’ ways.
What emerges from the book is a picture of the end of life as an incredibly precious and emotionally transformative time not just for the dying patient, but also for the family and loved ones. It is not doctors, nurses or carers who see these paranormal phenomena (although occasionally they do), but those who have ‘a strong emotional bond’ to the patient. It is the ones whose hearts are entwined with the dying – the beloved partner, child, best friend who experience the deceased reaching back to comfort and communicate with them, offering new meaning, connection and hope.
So imagine my shock when I attended a recent seminar on compassionate ways to accompany the dying and heard hospice workers joke about the family getting in their way and making their work hard. Surely loved ones, no matter how difficult a time they are having, need to be supported and encouraged to be present, not shooed away or belittled? I walked away from the seminar in dismay and realised how much further we have to go in the current debate on how to improve the conditions around dying. In the media there is important discussion about what constitutes a good death, but usually the articles focus on what’s needed medically and practically for the day to day care of ‘the patient’. It is good stuff, but there is a gaping hole at the center. What is conspicuously absent is any real understanding that the dying process is a journey taken not just by the dying patient, but by the family too. As such, the family needs to be encouraged to be at the very heart of the process. As Fenwick says: ‘We need more people in the room, not more machines.’ Because a good death transforms us all.