Visualising the invisible in the dying process

My interest in this subject began when I was setting up the hospital-based palliative care team at the Western General Hospital, Edinburgh. Early one morning I was called to a patient on the oncology ward. The night before, the patient had said he believed he was dying and wanted the nurses to send for relatives who lived in Birmingham. The gentleman had a diagnosis of advanced prostate cancer and was in hospital to receive radiotherapy for bony secondaries and pain relief.

We talked, and I listened to his story; he was adamant he was dying even though I shared that that was not what the doctors expected. The family arrived from Birmingham and he rapidly deteriorated and died within the week. Do people really know when they are dying? Does the relative medicalisation of dying block discussion about this important subject?

A few years later, the matron of a nursing home told me how two frail residents, both with moderate dementia, had made unusual comments just before they died. One lady had said: “I went, but the door was closed”, and the other, “He’s here but I need a ticket.” Both ladies were quite calm and matter-of-fact; both died within 24-48 hours of these comments. Were these ladies aware they were dying despite their dementia? Animals go to the forest to die and must therefore intuitively know they are dying – why would a human be any less of a being?

Hampe¹ believes dying to be a much more active process for the person who is dying than most understand. He highlights three areas: exiting the body, different realities, and heightened consciousness in the final hours before death.

We all know of stories where a patient has held on for a distant friend or relative to arrive before ‘slipping away’. A lady with very advanced congestive cardiac failure, being beautifully cared for in a nursing home, was given a small dose of morphine (2.5mg/nocte) to help the breathlessness. A few days later the matron told me, “Mrs Mc is seeing a whole lot of people in her room.” I immediately thought that the morphine was causing hallucinations. However, the matron had had a much greater sense of the moment and continued, “I asked Mrs Mc whether her husband was among them?” (her husband had died 17 years before). She continued to look up at the corner of the ceiling and replied, “No, he’s not there. And I am not going ’til he comes!” About five days later, Mrs Mc said quietly to a nurse, “He’s here!” and died a few hours later.

An openness and readiness to engage in these conversations is vital in order to be part of a dying person’s ‘world’ – whatever that world is. Such a ‘world’ is often played out on different plains. One daughter described how her mother asked quite rationally whether her daughter could see Jim and John (brothers who had died many years earlier) like she could at the bottom of her bed.

In an example of what Hampe calls ‘heightened consciousness’, a lady had suffered a stroke and not spoken for two years. A few hours before she died she said to her daughter, “Remember to take me home.”

People who are dying often use symbolic language or actions². Recently, in a residential home, an elderly gentleman, not appearing to be imminently dying, on going to bed one night handed his wedding ring to the care assistant asking her to take care of it (something he had never done before). When the carer went to check him four hours later he had died.

Being with the dying is an enormous privilege – having a dying person share their world and understanding of it is even more of a privilege.

1. Hampe JC. To die is gain: the experience of one’s own death. London: Darton, Longman and Todd, 1979.
2. Callanan M, Kelley P. Final gifts: understanding and helping the dying. New York: Bantam Books, 1992.