Transience - revising transitions towards end-of-life.

1. Transience - revising transitions towards end-of-life. Philip J Larkin Health Research Fellow ( Palliative Care), National University of Ireland, Galway Sponsored by the Health Research Board of Ireland and The Irish Hospice Foundation.

2. Outline of the Presentation. • Background to the original study. • Transition as a description of patient experience. • Transition or Transience? Case Exemplars • Transience as a concept in palliative care. • Conclusions and Implications for practice

3. Aim of the Study. • To describe advanced cancer patients experiences of the transition between palliative and terminal care. • To categorize supportive and limiting factors they experience during transition. • To describe the impact of this transition on patients expression of their end of life – palliative/terminal phase.

4. The Study • Qualitative study, phenomenological framework. • 6 EU countries ( U.K., Ireland, Spain, Italy, The Netherlands, Switzerland). • Interview ( N = 104). • Analysis using ATLAS.TI programme.

5. Continuity of Care. B D Curative E Curative Intent R care E E A A V E M T Palliative Care E N H T Disease Progression

6. Curative Care Palliative Care Palliative/terminal care Specific Oncology treatment Terminal Phase Bereavement Supportive Oncology treatment Diagnosis Development Death Transition in palliative care.

8. Criteria. • Advanced cancer diagnosis with prognosis of less than 6 months • Able to consent verbally and in writing ( No cognitive impairment) • Aware of diagnosis and prognosis • Ethical approval granted in each country through local systems • Psychological supports.

9. Findings • Van Manen’s (1990) framework of “ Lifeworld Existentials” to coalesce findings: • Lived Body • Lived Space • Lived Time • Lived Other

10. Lived Body Shifting complexity of disease Admission due to altered mind-body function Emotional response to transition Seeking Stability through safety & security

11. Lived Space Goegraphical Space Secure Space Dwelling Space Challenge to impermanence

12. Lived Time Timing between referral and transition Rationalising proximity to death Negotiating within the shadow of Death

13. Lived Other Meaningful people to the transition process Changin dynamics of relationship at end of life Bonds formed with other patients at end-of-life Shifting bonds

14. On reflection… • Does transition as currently described in the literature fit the experiences of this group of palliative care patients? Impermanence Stability Negotiation Shift

15. Case 1, Elizabeth • 58 year old woman with a primary brain tumour which led to marked incapacity in terms of her self-care. Lived with her partner and his three children for 11 years. Unexpectedly, her partner requested her to leave their home as he was no longer able to care for her and the children. With nowhere else to go, she was admitted to the hospice. She remained their until she died and had no further contact with her partner or the children again.

16. Case 2, Barbara • A 49 year old woman with ca colon, Barbara developed her disease when caring for her husband who subsequently died. She decided to move to live with her married daughter 200 km from her own home. The family home and many of her possessions were sold. Relationships deteriorated and she was admitted to the hospice. She deeply regretted the sale of her home and only wanted to join her husband.

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

18. Transience • Transience would appear as an attribute or consequence of transition. • Transience is often used without any clear definition of its meaning or application in the context of the study reported. • Undertook conceptual analysis.

19. Transience • A sudden and unexpected change in life circumstance. • Inability to prevent that change • A personal shift in both time and space • The realisation of a fragile and impermanent existence • A sense of stasis

20. “ On Transience” • “an emotional state where the quality of the present moment may be all the more meaningful because of its fragility and impermanence”. • Freud 1916 • transition as a “phenomenological description of movement” whereas transience refers to an emotional state often associated with sadness and painful feelings • Kitayama 1980

21. Attributes • Fragility & Uncertainty • Suddenness of the change • Powerlessness in the situation • Impermanence of time and space • Separation from the construct of home • Stasis versus oscillation

22. Conclusions.

23. At end-of-life… • It may be that we seek transition because the hope of a positive outcome is easier to deal with than the fragility and impermanence transience offers • the shift in clinical emphasis in hospice and palliative care units is suggestive of Augé’s (1995) description of transience as “non-place” – where people simply pass through.

24. “Liminal” Space

25. Transience • Transience is a fragile emotional state associated with sadness or painful feelings. • Transience can lead to the sudden realisation that nothing is truly permanent. • As such, transience emanates particular resonance for palliative care.

26. Living fully in the Shadow of Death.