Article: Comfort for the dying: five year retrospective and one year prospective studies of end of life experiences
Author(s): Peter Fenwick, Hilary Lovelace, Sue Brayne
Journal: Archives of Gerontology and Geriatrics
Published: 2010
Link to summary version of article.

This paper looks at the end-of-life experiences (ELEs) of a palliative care team of 38 nurses, doctors and end-of-life carers. The study consisted of a 5-year retrospective study and then a 1-year prospective follow up study conducted 12 months later.

The death of a patient and the grief of the relatives is part of general practice experience. In our survey we found that many people who had witnessed or experienced these end-of-life phenomena felt uncomfortable about discussing them with their doctor and that something which was intensely meaningful to them was often dismissed as insignificant.

The researchers suggested that ELEs fall into two distinct catagories.

Transpersonal ELEs. Consisting of transcendent or ‘other-worldly’ qualities such as:

• Deathbed visions
• Existential dreams involving deceased family members/pets
• Transiting to other realities
• Appearance of the dying person to a close relative or friend.
• Anomalous phenomenon occuring such as clocks stopping, unusual animal behaviours.

Final meaning ELEs.

• Dreams or ‘waking dreams’ that help the person process unresolved issues.
• A desire to put affairs in order.
• A desire to reconcile with family members.
• Episodes of terminal lucidity.

62% of interviewees reported that dying patients had some form of visions involving deceased relatives.

33% reported that their patients appeared to be experiencing some other reality.

25% reported second hand accounts of light being seen surrounding a dying patient.

45% reported that the patient seemed to be experiencing an animal that was of significance to them.

16% of the carers reported patients who sang or hummed religious hymns around the time of death.

56% reported first-hand accounts of paranormal events such as being pulled or called by the dying person or lights going on and off around the time of death.

70% reported the the ELEs were “intense subjective experiences which held profound personal meaning for the dying person.

76% felt that ELEs could not just be attributed to chemical changes in the brain during the dying process.

Because ELEs had not been explained in an academic frame-work, there was still considerable resistance at the start of the retrospective study to go beyond the medical model, and their spiritual nature and significance, both for the dying and their relatives, was seldom mentioned. Interviewees emphasised that ELEs were not discussed or valued as part of the dying process. Team leaders did not ask about ELEs and even if the carers believed that these experiences were important, because of their own need to be regarded as professional they were reluctant to discuss them even amongst themselves. However, we did find an interesting change in the prevailing institutional attitude when we re-interviewed the carers 1 year later, for the prospective study. The fact that the retrospective study had taken place was perceived as permission to start discussing some of the features of ELEs. We noticed that the longer the retrospective study continued, the easier it was for the staff to discuss these phenomena. In the private one to one interviews of the retrospective study, nearly all interviewees had been relieved to talk about these things, look more objectively at the phenomena and say what they thought. It was apparent that this was an institutional and not a personal change. From the interview data it was apparent that few doctors, nurses or carers said that hearing or witnessing ELEs had affected their own spiritual or religious views: their private attitudes, based on their own experiences with patients, remained the same. But they now felt that as the topic was a legitimate subject for medical research, it was no longer taboo and could be discussed more openly. Nearly all interviewees expressed concern about the lack of ELE education and training and wanted ELE training modules to become part of standard teaching practice

In conclusion, the authors felt that these phenomena and the patient’s subjective experiences of them need to be taken seriously, and require further study and education on best practice spiritual end-of-life care for healthcare workers.