Public health and end
of life care
Bruce Rumbold, 170610
Palliative Care Unit
School of Public Health
Outline
• Getting to where we now are
• Signs of new directions
• Ways of shaping the future?
Page 2
Forms of social organisation
• Traditional
• Modern
• Contemporary (‘post-modern’)
Traditional society
Traditional society
 Central authority is revealed (religious) knowledge
 Belief in powers beyond the society itself
 Hierarchical structures, based on custom and
inheritance, reflect these higher powers
 Illness, suffering and death an inevitable part of the
human condition; but have constructive possibilities
Traditional views of health and illness
 Understood in moral and religious terms
 Personal insight invited: sick person should
exercise discernment - connect present situation
with a transcendent meaning
 Illness is both challenge and opportunity
 Health is salvation
Illustration: Why Christians are afflicted with
illness
Basil the Great of Caesarea, The Long Rule 55
 Some diseases are for our correction (through the pain of
both the illness and its treatment)
 Some diseases are a punishment for sin
 Some diseases arise from faulty diet or any other physical
origin
 Some illness comes at the Evil One’s request
 Some illness provides opportunity for exemplary suffering
 Some illness is to moderate sanctity
• The subject that is most proper for your prayers at that
time is death. Let your prayers, therefore, then be
wholly upon it, reckoning upon all the dangers,
uncertainties and terrors of death; let them contain
everything that can affect and awaken your mind into
just apprehensions of it. Let your petitions be all for
right sentiments of the approach and importance of
death; and beg of God, that your mind may be
possessed with such a sense of its nearness, that you
may have it always in your thoughts, do everything as
in sight of it, and make every day a preparation for it.
• And then commit yourself to sleep, as into the
hands of God; as one that is to have no more
opportunities of doing good; but is to awake
amongst spirits that are separate from the
body, and awaiting for the judgement of the
last great day.
• William Law (1728) "Of evening prayer" A serious call
to a devout and holy life.
Victorian Evangelical Version of a Good Death
Jalland, P. (1996) Death in the Victorian Family. Oxford, Oxford University Press
•Death takes place at home
•The dying person makes explicit farewells of each
family member
•There is time, and physical and mental capacity, to
complete temporal and spiritual business
•The dying person is conscious and lucid to the end,
resigned to God’s will, able to prove worthiness for
salvation
•Suffering is borne with fortitude, even welcomed as a
test of fitness for heaven and recompense for past
sins.
Modern society
Modern social assumptions
 Central authority is science, which offers
(material) progress through knowledge
 Separation of public and private spheres of
social life reflects Descartes’ separation of body
and mind.
 Institutional structures reflect expert knowledge
 Knowledge is uncovered through rational,
objective enquiry; is universal and quantifiable
 Reductionism best approach to problem-solving
Modern views of health and illness





Illness is a problem to be solved by experts
Health is the absence of illness or disease
Body is a machine
Death is the worst possible outcome
Sick person responsible to seek expert treatment
• It is necessary to believe in immortality, insofar as it
can be demonstrated that the atoms of life or the
spirit of life must continue to exist after the body’s
death. But of what does it consist, this characteristic
of holding a body together, of causing matter to
change and to develop, this spirit of life?
Edvard Munch, 1892
‘Dying Well’: a modern good death?
Kastenbaum, R. (1975) 'Towards standards of care for the terminally ill, Part II: What standards exist today?'
Omega, The Journal of Death and Dying, 6, 289-90.
1. The good or successful death is quiet, uneventful. Nobody is
disturbed. The death slips by with as little notice as possible.
2. Not too many people are around. In other words, there is no
"scene". Staff does not have to adjust to the presence of family
and other visitors who have their own needs and who are in
various kinds of "states".
3. Leave-taking behaviour is at a minimum.
4. The physician does not have to involve himself intimately in
terminal care, especially as the end approaches.
5. The staff makes few technical errors throughout the entire
terminal care process, and few mistakes in "etiquette".
6. Strong emphasis is given to the body, little to the personality or
spirit of the terminally-ill person in all that is done for or to him.
7.
The person dies at the right time: that is, after the full range of
medical interventions has been tried, but before a lingering
period sets in.
8.
The staff is able to conclude that "we did everything we could
for this patient".
9.
The patient expresses gratitude for the excellent care
received.
10. After the patient's death the family expresses gratitude for the
excellent care provided.
11. Parts or components of the deceased are made available to
the hospital for clinical, research or administrative purposes
(via autopsy permission or organ donation).
12. A memorial (financial) gift is made to the hospital in the name
of the deceased.
13. The cost of the entire terminal care process is determined to
be low or moderate; money was not wasted on a person
whose life could not be "saved.
Dying, grief and loss as health problems
• Problem-focused
• Individualised
• Professionalised
Contemporary society
 Central authority is the self: individuals have right of
self-determination
 Emerging social structures have both modern and
traditional aspects
 Government’s role is to respect individual rights
whilst managing risk
 Management a dominant discipline
Contemporary views of health and illness
 Health system manages risk of illness
 Health and illness can be interpreted in a variety of
ways: biomedicine is not the only option
 Occupational integration
 Sick person’s responsibility is to find appropriate
interpretations (and act on them)
 Suffering arises from failure to manage risk
appropriately
The revival of dying
Page 20
Hospice Care
•
•
•
•
Physical care (palliation of symptoms)
Psychological care (genuine relationship)
Social care (patient-and-family as focus)
Spiritual care (supporting meaningmaking, connectedness)
A grass roots movement at the beginning:
later adapted to the health system
Health System & End of Life Care
• Palliative Care
• Advance Care Planning
• Requested Death (PAS)
Page 22
The great majority of people who are living with cancer and
other life limiting or terminal diseases spend their time with
families, work mates and friends, outside of any formal health
care system. Many people feel unprepared when such
illnesses befall them or others. In many of our local
communities we need to relearn the old ways of caring for
one another – those persons who are dying and those left
behind (Kellehear 2005).
Grief and loss: new directions
(or old directions revisited?)
• New rituals allowing broader participation
• Mystical experiences
• Afterlife explorations
The great majority of people who are living with cancer and
other life limiting or terminal diseases spend their time with
families, work mates and friends, outside of any formal health
care system. Many people feel unprepared when such
illnesses befall them or others. In many of our local
communities we need to relearn the old ways of caring for
one another – those persons who are dying and those left
behind (Kellehear 2005).
• Traditional (religious) societies:
– Shared social rituals
• Modern (industrialised) societies:
– Social silence, private coping
• Contemporary (consumerist) societies:
– Individual expression (and new ritual
forms?)
Shaping the future?
• Giddens: spirituality needed to contain the
utter openness of science ….
• Certainly fiscal containment is not enough!
Page 27
Spirituality involves
relationships
•
•
•
•
•
With places and things (spatial)
With self (intra-personal)
With others (inter-personal)
Among people (corporate)
With transcendence
•
Lartey, E.(1997) In living colour: an intercultural approach to pastoral
care and counselling, London, Cassell, 113.
• I can only answer the question ‘What am I to do?’ if I
can answer the prior question ‘Of what story or
stories do I find myself a part?’ We enter human
society with one or more imputed characters – roles
into which we have been drafted – and we have to
learn what they are in order to be able to understand
how others respond to us and how our responses
are apt to be construed.
•
MacIntyre, A. (1981) After virtue, University of Notre Dame Press, p.
216
• Under conditions of adversity, individuals often feel
a pressing need to re-examine and re-fashion their
personal narratives in an attempt to maintain a
sense of identity. Universal, cultural and individual
levels of human existence are tied together with
narrative threads.
Bury, M. (2001) ‘Illness narratives: fact or fiction?’ Sociology of Health and Illness
23 (3), 263-285, p. 264.
• We exist in relationship with others.
Throughout our lives we are hatched out from,
and re-immersed in, communities that hold us,
shaping our sense of who we are and who we
might become.
From our community at each stage we need
confirmation, challenge and continuity - that is,
we need to be accepted as we are, to be offered
a vision of what we might become, and to be
reminded of where we have been.
Kegan, R. (1981) The evolving self, Harvard, Harvard University Press
Revising the stories within which
we live
• Biographical disruption
• Narrative reconstruction
Models of health create horizons that
structure the stories about dying,
death and loss that can be told
within them.
• Biomedicine
– health as absence of disease
• Social
– health as having a place in your community
• Holistic
– health as becoming
Health Services
(biomedical)
Horizon within which we understand health - the
health (illness) system
• Goal of care is cure (health is the absence of
disease)
• Identity as patient
• Language: diagnosis, prognostication, clinical
management
• Core stories: assessing, referring, diagnosing,
prognosticating, treating, managing.
• Key strategies: expert treatment based on
diagnosis
• Death an adverse event
Social
Horizon for understanding health - the social system
• Goal of care is continuing participation
(health is having a place in your community)
• Identity as citizen
• Language: belonging, participation, support
• Core stories: networking, negotiating,
allocating, prioritising, mediating, counselling
• Key strategies: supporting, normalising,
educating, resourcing
• Death as changed participation
Holistic
Horizon for understanding health - expandable and
inclusive
Goal is healing or wholeness (health is becoming)
Identity as person
Language: search, meaning, companionship
Core stories: healing, sustaining, guiding,
reconciling, nurturing, liberating, empowering.
• Key strategies: companionship in search for
meaning
•
•
•
•
Chronic illness narratives
• Stories about the origins, onset, symptoms, effects of
illness: Contingent narratives
• Stories that explore and evaluate altered
relationships with body, self and society: Moral
narratives
• Stories about changes in identity and selfpresentation: Core narratives
Bury, M. (2001) ‘Illness narratives: fact or fiction?’ Sociology of Health and Illness 23 (3),
263-285.
Working with narratives
• Encourage individuals and communities to
speak, write, illustrate, represent, enact their
stories
• Enquire about ‘missing’ strands: what’s being
marginalised, or excluded, or is absent from
this story?
• Broaden horizons
• Offer other stories as a prompt or guide
• Support and resource communities and
audiences
Rediscovery of social perspectives





Escalating rates of degenerative disease
Re-evaluation of scientific progress
Health more than the absence of disease
Illness more than the presence of disease
Mounting evidence for social determinants of
disease
Social exclusion/inclusion
• The focus on capability, opportunity and
choice largely reflects Amartya Sen’s thinking
on freedom and human development (as in
Sen, A. (1999) Development as Freedom,
Oxford University Press, Oxford)
Amartya Sen & capabilities
• To function effectively in a modernising or
modern society, people need a range of
capabilities
• If people lack key capabilities their life choices
will be severely constrained: they will be
‘disadvantaged’
• Capability is a potential (what you could be or
do if you so chose); functioning is actuality
Capabilities
Martha Nussbaum (2001) Economics & Philosophy 17, 67-88
•
•
•
•
•
•
•
•
•
•
Live a life of normal length
Bodily health
Bodily integrity
Senses, imagination and thought
Emotions
Practical reason (a conception of the good)
Affiliation with others
Respect for other species
Play
Control over one’s environment (political and material)
• Social justice as the distribution of ‘goods’
(capabilities or opportunities for well-being)
among individuals; or social justice in terms of
the relationship people have with each other,
and in particular relationships between social
groups?
• See for example Iris Young (1990) Justice and the Politics of Difference,
Princeton, Princeton University Press
Determinants of successful lives
McLaughlin, E. & Baker, J. (2007) ‘Equality, social justice and social
welfare: a road map to the new egalitarianisms’ Social Policy and
Society 6 (1), 53-68.
• Respect and recognition
• Resources
• Love, care and solidarity
• Power
• Working and learning
Social inclusion
http://www.socialinclusion.gov.au/Pages/default.aspx
• Being socially included means that people have
the resources (skills and assets, including good
health), opportunities and capabilities they need
to:
– Learn: participate in education and training
– Work: participate in employment, unpaid or voluntary
work including family or carer responsibilities
– Engage: connect with people, use local services and
participate in local, cultural, civic and recreational
activities, and
– Have a voice: influence decisions that affect them
• Public health by its very nature is aligned with
those who favour collective responsibility for
the provision of good public services.
• Daly, J. & Lumley, J. (2004) ‘Individual rights and social justice’ Australian
and New Zealand Journal of Public Health 28 (6), 507
Public health [should join with] the voices
that are arguing for a return to public
policies that seek to promote civil society,
encourage an investment in the social
fabric of communities, and protect the
environment.
Baum, F. (2002) The New Public Health: an Australian
perspective. Melbourne, Oxford, p. 526
Marks of a sustainable community
Brown, V. & Ritchie, J. (2006) Health Promotion Journal of
Australia 17 (3), 211-216.
• Reflectivity
• Systemic thinking
• Negotiation
• Equitable participation
• Integration of understanding in a collective
learning process