Transitions: How can we help? Wendy Duggleby Persons receiving palliative care services and their families experience multiple, complex and concurrent significant changes which impact their hope and quality of life. This presentation will focus on the findings from several research studies on transitions and quality of life. An online “Changes Toolkit” developed for persons receiving palliative care and their families will also be presented.

1. Living and Dying
in Very Old Age
The limits of choice
Tony Walter
Centre for Death & Society
University of Bath, UK

2. Living & Dying in late old age:
Ambivalence
• One of the great achievements of advanced
industrial societies is that most of their members
live to a good age.
• Dying in late old age: the kind of dying many
people fear after the long life they hope for
• My perspective:
Age 66, not a healthcare professional

3. Dying in late old age: Question
• Under 1/3 of old people die of cancer
• Principles & practice of palliative care are
based on cancer
• Can they be rolled out to other kinds of dying?

4. Dying Trajectories: Cancer vs Other

5. Cancer & Frailty Contrasted
HOSPICE PRINCIPLE REQUIRES 2nd / 3rd age
CANCER
4th age FRAILTY
and/or DEMENTIA
Informed choice Clear prognosis &
trajectory
Awareness of dying
Mental capacity
Social agency
√
√
√
√
X
?
?
Reduced
Living & dying at
home
Co-resident family
members
Capable family
members
√
√
?
?

6. INFORMED CHOICE: Who wants it?
• Baby boomers / 3rd Agers:
consumerist / neo-liberal / secular
versus:
• Non-western, religious patients:
may prefer family/doctor/God to choose
• Gradual giving up of agency as 3rd Age morphs into 4th Age
• Survival vs Post-material values
• C.Gilleard, P.Higgs. The third age & the baby boomers. International Journal of Aging and Later Life 2007, 2(2): 13-30
• R.Inglehart et al. Human values & beliefs: a cross-cultural sourcebook. University of Michigan Press, 1998.

7. INFORMED CHOICE: Is it possible?
• If mental capacity is reduced, then informed
choice has to be made much earlier, when in
good health.
• But how does a healthy 3rd Ager know what
it’s like to have dementia or a stroke?
• Is the 4th Age a black hole?
• C.Gilleard, P.Higgs. Aging without agency. Aging & Mental Health 14(2), 2010: 121-128.

8. What do people fear about dying?

10. What do people fear about dying?
• Powerless in face of opaque systems
• Unjoined-up care
• Under-resourced care
• Confusing care
• Uncaring care
Making choices doesn’t guarantee being in
control!

11. CHOICE: Summary
Patients are now required to speak and state
preferences/choices that:
a) reflect a political agenda
b) cannot be fully informed
c) may not address their fears
d) may not be realisable

12. So what do people want?
• To know they will be cared for
• To know they will be cared about

13. RELATIONALITY
• Does dying in very old age need a relational
ethic more than an ethic of individual
autonomy?
• Eastern relational ethics
• Western relational ethics

14. Relational ethics: Eastern
Japan: Interaction relies on nonverbal empathic guesswork,
considering others: omoiyari.
• Implications for coma care.
• Loss of autonomy ≠ social death.
Maori: consult whanau:
• Takes time
• Individual may not have final say
• Family group conferences have influenced western child
care. Have they influenced palliative care?
• R.Frey et al. "Advance care planning for Maori, Pacific and Asian people." Health & Social Care in the Community
22(3), 2014: 290-299.
• H.Yamazaki. Rethinking good death: a case analysis of a Japanese medical comic. University of Oxford, Uehiro-Carnegie-
Oxford Conference on Medical Ethics, 11-12 Dec, 2008.

15. Relational ethics: Western
• Feminist ethics: Autonomy achieved in and through relationships
‘The feminist ethics of care is based on the understanding that vulnerability and frailty – and therefore the need
for care – are inherent within the human condition…. The relational nature of care means that the perspectives of
all involved need to be taken into account.’ (Lloyd p.33)
• Healthcare ethics: Presence as well as intervention (PLC)
• Christian ethics: To be dependent is still to be human
• Disability lobby: Colludes in stigmatising dependency
• L.Lloyd, Health and care in ageing societies, Policy Press, 2012.
• J.Tronto, Moral boundaries, Routledge, 1994.
• A.van Heijst, Professional loving care, Peeters, 2011.
• W.H.Vanstone, The Stature of Waiting, Darton,Longman,Todd, 1982.

16. Voices: East & West
Individual
autonomy
Relationality
Western /
Individualist
Loud Quiet
Eastern /
Collectivist
Quiet Loud

17. POLITICS!
• Neo-liberalism requires citizens to be self-governing
individuals
• Lack of agency = social death
• Health message to the old: Keep active!
OK, but marginalises 4th Age
• Palliative care has UK government’s ear (eg
National Choice Offer) & doesn’t want to lose it
• Healthcare markets & the language of choice

18. Final Question?
Palliative care:
o Based on white, 2nd/3rd age cancer patients in
individualistic Anglophone countries
o Meshes with western political discourse about autonomy
• Can its principles be rolled out from cancer to elder care?
• Or do we have to start again from scratch, looking
elsewhere for ideas?
Thank you