Endnotes: An Intimate Look at the End of Life

I was keen to review this book as a possible addition for reading lists to accompany seminars that examine the sociology of death and dying from the perspective of what C. Wright Mills termed "the sociological imagination".

These seminars examine how history, biography and social structures affect our experience and understanding of death in contemporary society. Ruth Ray's book was certainly useful in understanding the impact of the death of one partner in a heterosexual relationship and it was interesting to read, but perhaps not always for the right (teaching resource) reasons.

Endnotes is one volume in a series of books that examines end-of-life care in the US. Unusually, however, from the perspective of an academic text, it is written in the form of a traditional love story.

Put simply, this is exactly what it is - a narrative account of a love story between Ray (an academic researcher in her early forties) and "Paul", an 82-year-old resident of a nursing home (one of her respondents). The main body of the book progresses through the start, middle and end of the love story (which ends in Paul's death).

At times I found the level of detail too excruciatingly honest. The narrative examines issues that one may find difficult to discuss - even with close relatives or friends.

For example, Ray describes the night Paul slept at her house for the first time: "Both exhausted we went to bed early ... We talked and kissed and snuggled ... We left a light on so he could see to use the urinal."

In an earlier passage, she describes in detail how Paul managed to use an enema: "I did it, he said, I knew I could take care of that problem ... don't worry, I washed my hands good, too."

I did not enjoy this book. It appears to run counter to what we teach students about ethical issues in social research, especially the exploitation of respondents through the power issues involved in the researcher/researched relationship.

However, in order to obtain a certain depth of understanding about "hidden" communities (in this case, elderly residents in a residential care facility in the US), it is sometimes necessary to bend or manipulate ethical guidelines.

In Ray's defence, she does acknowledge the unusual subject matter of what she terms "the unorthodox book". In deference to the anticipated academic audience, it contains discussions of privacy and consent related to ethical principles.

Ray recognises the vulnerability of her subjects and wishes she had sought individual consents for their inclusion in her narrative. Yet at the time of the love affair, she claims that she had no inclination that her "memoir" would be published.

As for Paul, the central character, Ray suggests that far from feeling exploited, Paul gave his "implied consent" for the publication of their story after his death. This appears to run counter to the earlier ethical discussion about publication intent.

However, in her adoption of a feminist ethical praxis, Ray suggests that she sought to integrate research, theory and practice to generate positive responses for the people featured in her book. She came to see traditional nursing homes being run as workplaces rather than a home and hoped her "passionate scholarship" might help change such institutional norms.

The first and last chapters are pleasingly more academic in tone and content. The first chapter links the gerontological imagination with Mills' sociological imagination. Here, Ray justifies her research methodology (autobiography, biography and ethnography) to develop understandings of social situations through observation, reflection and language.

The final chapter discusses how the narrative methodology adopted here can have the same impact on institutional practices as conventional academic reports.

This is not a book I would recommend wholeheartedly to undergraduates meeting the sociology of death and dying for the first time, but it may help postgraduate students who are able to see past the "love story" narrative and understand the unusual methodology employed here.