Research design, data and methodology

My last words (Mijn Laatste Woorden – Viimeiset sanani) is a television documentary series¹ consisting of four Dutch episodes and five Finnish ones, each introducing a single main character – incurably ill and facing the last months of their life. Each episode ends in a farewell video message by the main character to his or her loved ones. In Finland, the documentary first aired in 2013, and was described by YLE (Yleisradio, The Finnish Broadcasting Company) in the following way:

“Death, like birth, is a part of life. The documentary series My last words offers a platform for the incurably ill persons and their loved ones. The documentary makes you think but does not cause fear or anguish. The topics dealt with are addressed directly, not through euphemisms. The five Finnish episodes are followed by four Dutch ones.“²

My last words represents the first instance of the terminally ill stepping into the limelight in the Finnish public television. The news of the upcoming series was met with mixed reactions in social media. The Dutch roots of the format raised suspicions in some com-mentators, who suggested that the purpose of the show was nothing more than to advertise euthanasia which is legal in the Netherlands. Other comments expressed that “feeding off” death and the private suffering of people was “tacky”. Those in opposition considered

1 The documentary is based on the format of the Dutch production company Palm Plus. The Finnish

epi-sodes are produced by Sari Isotalo, Susamuru Ltd. Palm Plus won the Golden Rose festival award for My last words in Switzerland in 2007.

2 YLE, https://areena.yle.fi/1-1930625, accessed March 2nd, 2019.

death a valuable topic for public discussion, noting that death had become too distant and abstract a topic for the contemporary person. (Uusi Suomi 2008.)

For the purposes of exploring the discussion of good death, the documentary appears as an intriguing point of access into the topic. Based on a review of research literature on the constituents of good death, the obvious differences, even contradictions, in the ideals expressed by various reference groups are clear. Considering the experience of dying as one that potentially lasts for years, it appears, that the topic might be approached differ-ently. Rather than as definitions and preferences, the good death could be identified in the practice and process of dying, thus incorporating the personal, social and possibly even the societal factors at play in the individual experience. As the empirical material for this study, the documentary as a public display of private experiences appears to offer the unique perspective into the intersection of personal strategies meeting social and societal ideals and expectations.

Considering the narrative structure of My last words, each episode represents a collage of perspectives into the experience of dying. First, the visual storyline forms through the lens of the camera. What is seen by the viewers appears, at times, in partnership with what is said, accentuating and explaining the topic at hand – while at other times the camera footage appears in contrast, even in contradiction to the expressed emotions. This contrast is particularly clear in the Dutch episodes of the documentary, which feature lots of rhyth-mic music, voice narrating and editing to present the main characters as courageous and energetic in the midst of their final moments.

The main character is presented in conjunction with his or her family members, each offering their personal angle into the experience. Importantly, the interviewer also plays an active role in choosing and delimiting the topics of discussion. Through the interviews and the social network, the documentary assembles a life story of the main character from the vantage point of the approaching death.

Since an analysis of all ten episodes would have been beyond the scope of this thesis, it is confined to the Finnish episodes. After transcribing the episodes, including both the textual and the visual material in each of them, my focus further narrowed down to con-sider how the characters were portrayed in the documentary. In concon-sidering the narrative structure of the format, the many narratives within each episode, performed by the main

characters themselves stood out. Beneath the main storyline, multiple small stories are heard, occasionally appearing as autonomous first-person narratives, while others jointly produced by a number of characters, sometimes including the interviewer. In order to entrench beyond the script and structure of the documentary, these small stories appeared as the points of entry into the narrative voice of the main characters themselves.

I attempted to identify comparable narratives for analysis: one related to the initial expe-rience of receiving diagnosis and facing the possibility of death; another related to living with death; and finally one related to facing the consequences of death, i.e. leaving fare-wells. As the number of narratives accumulated, it became clear that four (out of the five Finnish) main characters was the maximum I could include in the analysis. Although the sample is not large, and is demarcated by the Finnish context, choosing commensurate small stories allows for comparisons to be made.

5 SMALL STORIES OF DYING AGENCY