Living whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of life
<p><strong>BACKGROUND:</strong> End of life literature is dominated by narratives of deterioration and death. Research is predominantly conducted in hospitals or hospices, involving terminal illnesses such as cancer during the final weeks or days of life. For those with heart failu...
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| Format: | Thesis |
| Language: | English |
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2019
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| _version_ | 1817931765127315456 |
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| author | Pilbeam, CS |
| author2 | Greenhalgh, T |
| author_facet | Greenhalgh, T Pilbeam, CS |
| author_sort | Pilbeam, CS |
| collection | OXFORD |
| description | <p><strong>BACKGROUND:</strong> End of life literature is dominated by narratives of deterioration and death. Research is predominantly conducted in hospitals or hospices, involving terminal illnesses such as cancer during the final weeks or days of life. For those with heart failure, health can fluctuate over months and years through turbulent trajectories from diagnosis to (sometimes unexpected) death. Through anthropological exploration of everyday bodily experiences of living, I sought to illuminate what kind of life people deem ‘worth living’ whilst dying.</p>
<p><strong>METHODS:</strong> Positively reframing dying around living well at home, and taking a phenomenological approach, I undertook ethnography in people’s homes. I conducted life history interviews and ongoing participant observation with fourteen participants (67-98 years old) over eighteen months. This was supplemented by multiple conversations with family members, observations of two specialist heart failure support groups, observations of eight heart failure clinics, and forty home visits with heart failure specialist nurses.</p>
<p><strong>FINDINGS:</strong> Throughout the process of living whilst dying with heart failure, bodies, lifeworlds, and priorities fluctuate as participants continuously experiment with how they move through daily life. I explore how this negotiation of a life that participants deem meaningful and worth living is enacted in three ways: attending to and interpreting one’s body; sensuous engagement with the lifeworld and material relations; and wrapping up one’s narrative whilst settling into stillness. I build on work by Scarry (1985), Mattingly (1994), Mol (2010), and Ingold (2010) to develop a theoretical framework of iterative unmaking/remaking as people position themselves towards the end of life.</p>
<p><strong>CONCLUSIONS:</strong> Living whilst dying with heart failure is characterised by gradual slowing and settling into stillness, as participants turn away from making altogether, and towards ‘being done’ with living. Attending to processes of making – through the movement and stillness of bodies, things, and stories – allows us to reconsider dominant biomedical discourses of care, technologies, and decision-making towards the end of life. Making a life worth living is not complete until stories no longer look to the future in some way, and movement is stilled. Settling into stillness, and being done, might thus be respected.</p>
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| first_indexed | 2024-03-07T07:11:42Z |
| format | Thesis |
| id | oxford-uuid:0553735d-ae1d-45f7-8a4a-b48426ebbad5 |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-12-09T03:27:13Z |
| publishDate | 2019 |
| record_format | dspace |
| spelling | oxford-uuid:0553735d-ae1d-45f7-8a4a-b48426ebbad52024-12-01T10:04:34ZLiving whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of lifeThesishttp://purl.org/coar/resource_type/c_db06uuid:0553735d-ae1d-45f7-8a4a-b48426ebbad5Primary health careApplied anthropologyHeart failureMedical anthropologyEnglishHyrax Deposit2019Pilbeam, CSGreenhalgh, TPotter, C<p><strong>BACKGROUND:</strong> End of life literature is dominated by narratives of deterioration and death. Research is predominantly conducted in hospitals or hospices, involving terminal illnesses such as cancer during the final weeks or days of life. For those with heart failure, health can fluctuate over months and years through turbulent trajectories from diagnosis to (sometimes unexpected) death. Through anthropological exploration of everyday bodily experiences of living, I sought to illuminate what kind of life people deem ‘worth living’ whilst dying.</p> <p><strong>METHODS:</strong> Positively reframing dying around living well at home, and taking a phenomenological approach, I undertook ethnography in people’s homes. I conducted life history interviews and ongoing participant observation with fourteen participants (67-98 years old) over eighteen months. This was supplemented by multiple conversations with family members, observations of two specialist heart failure support groups, observations of eight heart failure clinics, and forty home visits with heart failure specialist nurses.</p> <p><strong>FINDINGS:</strong> Throughout the process of living whilst dying with heart failure, bodies, lifeworlds, and priorities fluctuate as participants continuously experiment with how they move through daily life. I explore how this negotiation of a life that participants deem meaningful and worth living is enacted in three ways: attending to and interpreting one’s body; sensuous engagement with the lifeworld and material relations; and wrapping up one’s narrative whilst settling into stillness. I build on work by Scarry (1985), Mattingly (1994), Mol (2010), and Ingold (2010) to develop a theoretical framework of iterative unmaking/remaking as people position themselves towards the end of life.</p> <p><strong>CONCLUSIONS:</strong> Living whilst dying with heart failure is characterised by gradual slowing and settling into stillness, as participants turn away from making altogether, and towards ‘being done’ with living. Attending to processes of making – through the movement and stillness of bodies, things, and stories – allows us to reconsider dominant biomedical discourses of care, technologies, and decision-making towards the end of life. Making a life worth living is not complete until stories no longer look to the future in some way, and movement is stilled. Settling into stillness, and being done, might thus be respected.</p> |
| spellingShingle | Primary health care Applied anthropology Heart failure Medical anthropology Pilbeam, CS Living whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of life |
| title | Living whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of life |
| title_full | Living whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of life |
| title_fullStr | Living whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of life |
| title_full_unstemmed | Living whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of life |
| title_short | Living whilst dying: exploring 'a life worth living' for people with heart failure living at home towards the end of life |
| title_sort | living whilst dying exploring a life worth living for people with heart failure living at home towards the end of life |
| topic | Primary health care Applied anthropology Heart failure Medical anthropology |
| work_keys_str_mv | AT pilbeamcs livingwhilstdyingexploringalifeworthlivingforpeoplewithheartfailurelivingathometowardstheendoflife |