Living and Dying in Very Old AgeThe limits of choice

Tony Walter

Centre for Death & SocietyUniversity of Bath, UK

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

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?

Dying Trajectories: Cancer vs Other

Cancer & Frailty ContrastedHOSPICE PRINCIPLE REQUIRES 2nd / 3rd age

CANCER4th age FRAILTY

and/or DEMENTIAInformed choice Clear prognosis &

trajectory

Awareness of dying

Mental capacity

Social agency

√

√

√

√

X

?

?

Reduced

Living & dying at home

Co-resident family members

Capable family members

√

√

?

?

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.

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.

What do people fear about dying?

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!

CHOICE: Summary

Patients are now required to speak and state preferences/choices that:

a) reflect a political agendab) cannot be fully informedc) may not address their fearsd) may not be realisable

So what do people want?

• To know they will be cared for

• To know they will be cared about

RELATIONALITY

• Does dying in very old age need a relational ethic more than an ethic of individual autonomy?

• Eastern relational ethics• Western relational ethics

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.

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.

Voices: East & West

Individual autonomy

Relationality

Western / Individualist

Loud Quiet

Eastern / Collectivist

Quiet Loud

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

Final Question?

Palliative care: o Based on white, 2nd/3rd age cancer patients in individualistic

Anglophone countrieso 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