The grief of the dying often goes unacknowledged

Astrid Joutseno, known also as Astrid Swan, explores grief through scholarly and artistic means in her role as postdoctoral fellow in the Arts at Helsinki Collegium for Advanced Studies.

Astrid Joutseno/Swan examines grief of a dying person as a cultural affect. 

Grief, particularly that of the dying, has been little investigated. 

“The grief of the dying is not discussed and often goes unaddressed in Western culture, research and healthcare,” Joutseno/Swan says.

A humanities perspective on the study of grief 

In the past few decades, research on grief in the fields of psychology and neuroscience has produced fresh insights on the topic. For example, functional magnetic resonance imaging (fMRI) has demonstrated that the same brain regions are activated when grieving as when navigating to a destination.

In concrete terms, grief can thus be described as the presumed route to a loved one ceasing to exist. At the same time, coping with grief has become medicalised, and the focus on overcoming grief may result in harmful expectations.

In her research, Joutseno/Swan develops concepts and investigates alternative ways of knowing. 

“About a century ago, Virginia Woolf wrote in her essay ‘On Being Ill’ about the lack of language for illness in literature and culture,” she notes, adding: “Today, the same is true of grief. Or perhaps we’re yet to identify and name these descriptions and linguistic expressions because the way grief is discussed in, for example, literature often confounds our expectations. Our notions of grief are so narrow: crying, feeling desolate, being unable to live and function normally, having uncomfortable and difficult emotions. The reality of grief is so much more. Grief happens surreptitiously, in bursts and waves, and affects both style and substance. Grief is something you carry with you, it comes in many varieties, and living with grief is common, not rare. Grief is always associated with loss, but not all loss means death.” 

Life writing helps both the writer and their close friends and family

Life writing can give the writer the means to explore grief and illness.  

As a genre, life writing refers to text types and other forms of expression the writer uses to narrate their experiences. 

“The term encompasses many types of writing, including letters, diaries, blogs, social media posts, autobiographical works of fiction and memoirs. Research on life writing has been able to produce knowledge about experience and highlight the lives of the marginalised,” says Joutseno/Swan. 

In her award-winning doctoral thesis, Joutseno/Swan explored maternal life writing in the online environment, shedding light on issues such as the overlap between motherhood and cancer. She set out to examine how sick and dying mothers compose their lives into narrative. 

The grief of the dying began to interest her as she simultaneously found herself living in death’s anteroom for years without being able to find research about the experience. 

“Recognising the grief of the dying helps the terminally ill and their close friends and family.” 

For Joutseno/Swan, this makes research on the grief of the dying feel valuable. 

The common occurrence of cancer means we should talk more about living with it 

The incidence of cancer in the population continues to grow. At the same time, medical innovations have led to people living longer with terminal cancer. Any long-term illness entails living with uncertainty. 

Losses are compounded when life with a terminal illness is prolonged, leading to the constant presence of trauma.

“Life with metastatic cancer is defined by various individual challenges, including grief,” says Joutseno/Swan. 

She notes that research often addresses grief from the perspective of outsiders, the bereaved, not from the dying person’s point of view. 

“What’s it like to be aware of your own death every day, to always be at the ‘gates of death’?” she asks.  

Joutseno/Swan was diagnosed with breast cancer 10 years ago. Since 2017 she has been treated for a metastatic form of the disease, i.e., one that has spread elsewhere in the body. Her cancer remains treatable, but incurable. In September 2021, a new personalised chemotherapy regimen became available in Finland, saving her from almost certain death. 

“I was both excited and anxious. I didn't feel relieved; I knew things were as they were supposed to be. You cannot cure or stop grief, and it does not make death acceptable. The grief of the dying is existential, always present,” says Joutseno/Swan.  

In the Research Council of Finland project Counter-Narratives of Cancer: Shaping Narrative Agency, Joutseno will investigate the grief of the dying.  She believes it will yield a wealth of new knowledge on the topic. 

Collegium research on grief as a cultural affect

At Helsinki Collegium for Advanced Studies, Joutseno/Swan is focusing on the features and manifestation of grief as a cultural affect. She is studying the archives and story of the professional 20th century musicians Kerttu Wanne (violin) and her own relative and namesake Astrid Joutseno (piano), exploring how grief is layered in their potential stories and in the researcher’s analysis. 

This study also finds Joutseno/Swan in search of her Jewish great-grandfather Eliasz Dobrzyniec, a violinist in Turun soitannollinen seura (Turku musical society) from 1912 to 1914 whose story was lost in the family narrative. 

Her research focuses on knowledge production through the combination of artistic and scholarly work.

Her research outlines the role of grief as an intergenerational bond and uncovers grief in the many layers of her material and process. 

Astrid Joutseno/Swan will discuss her research results through scholarly and artistic means on 9 May at the On the Rocks venue. She also talks in the Night of Science on January 25th. 


Astrid Joutseno/Swan

Astrid Joutseno/Swan won the University of Helsinki doctoral thesis award for her 2022 thesis Life Writing from Birth to Death: How M/others Know.

In 2022 she worked with an artist grant from the Arts Promotion Centre Finland. In 2023 she began her postdoctoral research at the University of Turku’s Centre for the Study of Storytelling, Experientiality and Memory, with funding from the Alfred Kordelin Foundation. She is currently exploring grief in her role as Postdoctoral Fellow in the Arts, funded by the Kone Foundation at Helsinki Collegium for Advanced Studies. From September 2024, Joutseno will work in the Research Council of Finland research project Counter-Narratives of Cancer at the University of Turku. 

As a songwriter, Astrid Swan has released seven albums. In 2018 she won the Teosto Prize for her album From the Bed and Beyond, which was also nominated for the Nordic Music Prize. Her latest album D/other was released in 2021. In 2019 Joutseno/Swan published a fictional memoir entitled Viimeinen kirjani: kirjoituksia elämästä (‘My Last Book: Writings on Life’, Nemo).