Transience - revising transitions Transience - revising transitions towards end-of-life.towards end-of-life.

Philip J LarkinPhilip J LarkinHealth Research Fellow ( Palliative Care),Health Research Fellow ( Palliative Care),

National University of Ireland, GalwayNational University of Ireland, GalwaySponsored by the Health Research Board of Ireland and Sponsored by the Health Research Board of Ireland and

The Irish Hospice Foundation.The Irish Hospice Foundation.

Outline of the Outline of the Presentation.Presentation.

Background to the original study.Background to the original study. Transition as a description of patient Transition as a description of patient

experience.experience. Transition or Transience? Case Transition or Transience? Case

ExemplarsExemplars Transience as a concept in palliative Transience as a concept in palliative

care.care. Conclusions and Implications for Conclusions and Implications for

practicepractice

Aim of the Study.Aim of the Study.

To describe advanced cancer patients To describe advanced cancer patients experiences of the transition between experiences of the transition between palliative and terminal care.palliative and terminal care.

To categorize supportive and limiting To categorize supportive and limiting factors they experience during transition.factors they experience during transition.

To describe the impact of this transition To describe the impact of this transition on patients expression of their end of life on patients expression of their end of life – palliative/terminal phase.– palliative/terminal phase.

The StudyThe Study

Qualitative study, phenomenological Qualitative study, phenomenological framework.framework.

6 EU countries ( U.K., Ireland, 6 EU countries ( U.K., Ireland, Spain, Italy, The Netherlands, Spain, Italy, The Netherlands, Switzerland).Switzerland).

Interview ( N = 104).Interview ( N = 104). Analysis using ATLAS.TI Analysis using ATLAS.TI

programme.programme.

Continuity of Care.Continuity of Care.

Disease Progression

DEATH

BEREAVEMENT

Curative Intent

Palliative Care

Curative care

Transition in palliative care.

0

5

10

15

Gender distribution across sample

Male 9 10 7 5 9 9

Female 12 10 13 10 8 1

UK IRL I NL CH ES

Criteria.Criteria.

• Advanced cancer diagnosis with prognosis of less Advanced cancer diagnosis with prognosis of less than 6 monthsthan 6 months

• Able to consent verbally and in writing ( No Able to consent verbally and in writing ( No cognitive impairment)cognitive impairment)

• Aware of diagnosis and prognosisAware of diagnosis and prognosis

• Ethical approval granted in each country through Ethical approval granted in each country through local systemslocal systems

• Psychological supports.Psychological supports.

FindingsFindings

Van Manen’s (1990) framework of “ Van Manen’s (1990) framework of “ Lifeworld Existentials” to coalesce Lifeworld Existentials” to coalesce findings:findings:

Lived BodyLived Body Lived SpaceLived Space Lived TimeLived Time Lived OtherLived Other

On reflection…On reflection…

Does transition as currently Does transition as currently described in the literature fit the described in the literature fit the experiences of this group of experiences of this group of palliative care patients?palliative care patients?

Case 1, ElizabethCase 1, Elizabeth 58 year old woman with a primary brain 58 year old woman with a primary brain

tumour which led to marked incapacity in tumour which led to marked incapacity in terms of her self-care. Lived with her terms of her self-care. Lived with her partner and his three children for 11 partner and his three children for 11 years. Unexpectedly, her partner years. Unexpectedly, her partner requested her to leave their home as he requested her to leave their home as he was no longer able to care for her and the was no longer able to care for her and the children. With nowhere else to go, she was children. With nowhere else to go, she was admitted to the hospice. She remained admitted to the hospice. She remained their until she died and had no further their until she died and had no further contact with her partner or the children contact with her partner or the children again.again.

Case 2, BarbaraCase 2, Barbara

A 49 year old woman with ca colon, A 49 year old woman with ca colon, Barbara developed her disease when caring Barbara developed her disease when caring for her husband who subsequently died. for her husband who subsequently died. She decided to move to live with her She decided to move to live with her married daughter 200 km from her own married daughter 200 km from her own home. The family home and many of her home. The family home and many of her possessions were sold. Relationships possessions were sold. Relationships deteriorated and she was admitted to the deteriorated and she was admitted to the hospice. She deeply regretted the sale of hospice. She deeply regretted the sale of her home and only wanted to join her her home and only wanted to join her husband.husband.

Transience Transience

Transience is defined as “Transience is defined as “the action the action or fact of passing awayor fact of passing away” reflecting a ” reflecting a lack of permanence, something of lack of permanence, something of limited durability (Oxford English limited durability (Oxford English Dictionary 1989).Dictionary 1989).

TransienceTransience

Transience would appear as an Transience would appear as an attribute or consequence of attribute or consequence of transition.transition.

Transience is often used without any Transience is often used without any clear definition of its meaning or clear definition of its meaning or application in the context of the application in the context of the study reported.study reported.

Undertook conceptual analysis.Undertook conceptual analysis.

TransienceTransience

A sudden and unexpected change in A sudden and unexpected change in life circumstance.life circumstance.

Inability to prevent that changeInability to prevent that change A personal shift in both time and A personal shift in both time and

spacespace The realisation of a fragile and The realisation of a fragile and

impermanent existenceimpermanent existence A sense of stasisA sense of stasis

“ “ On Transience” On Transience”

““an emotional state where the quality of the an emotional state where the quality of the present moment may be all the more present moment may be all the more meaningful because of its fragility and meaningful because of its fragility and impermanence”.impermanence”.

Freud 1916Freud 1916

transition as a “transition as a “phenomenological description phenomenological description of movementof movement” whereas transience refers to an ” whereas transience refers to an emotional state often associated with sadness emotional state often associated with sadness and painful feelings and painful feelings

Kitayama 1980Kitayama 1980

AttributesAttributes

Fragility & UncertaintyFragility & Uncertainty Suddenness of the changeSuddenness of the change Powerlessness in the situationPowerlessness in the situation Impermanence of time and spaceImpermanence of time and space Separation from the construct of Separation from the construct of

homehome Stasis versus oscillationStasis versus oscillation

Conclusions.Conclusions.

At end-of-life…At end-of-life…

It may be that we seek transition It may be that we seek transition because the hope of a positive outcome because the hope of a positive outcome is easier to deal with than the fragility is easier to deal with than the fragility and impermanence transience offersand impermanence transience offers

the shift in clinical emphasis in hospice the shift in clinical emphasis in hospice and palliative care units is suggestive and palliative care units is suggestive of Augé’s (1995) description of of Augé’s (1995) description of transience as “non-place” – where transience as “non-place” – where people simply pass through.people simply pass through.

““Liminal” SpaceLiminal” Space

TransienceTransience

Transience is a fragile emotional Transience is a fragile emotional state associated with sadness or state associated with sadness or painful feelings. painful feelings.

Transience can lead to the sudden Transience can lead to the sudden realisation that nothing is truly realisation that nothing is truly permanent.permanent.

As such, transience emanates As such, transience emanates particular resonance for palliative particular resonance for palliative care.care.

Living fully in the Shadow Living fully in the Shadow of Death.of Death.