Public health developments in palliative care services: the view from the UK

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  Public health developments in palliative care
services the view from the UK  

• Steve Conway

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Forewords

• The late twentieth century development of hospice
  and palliative care in the UK and the world wide
  development of HPPC have had far reaching
  implications.
• However by the turn of the century it became
  apparent that the professionalization and
  sequestration of death and dying was becoming
  unsustainable.
• As this paper indicates, HPPC offers a way
  forward for the UK.
• This is not a comprehensive appraisal of HPPC,
  but rather a review that has been constructed
  with the materials and time available.
  Nonetheless, it does include a range of examples
  of practice and demonstrates some significant
  first steps.

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CONTENT

• A public health approach, also known as health
  promoting palliative care, highlights the need
  for palliative care services to promote and
  facilitate community empowerment, involvement and
  participation. HPPC draws upon the principles of
  social justice, equity and health for all. The
  central methodology of HPPC is community
  development.
• In the United Kingdom, there are some encouraging
  developments.
• This paper covers three areas (1) it presents a
  background and rationale for health promoting
  palliative care, (2) it lists some key
  demographic and epidemiological factors, and (3)
  it describes social trends, examples of practice
  (based largely on three case studies) and policy
  developments.

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• Each year around 500,000 people die in England
  over 60 aged 65 or above (DoH 2008).
• Deaths throughout England and Wales are expected
  to rise to 590,000 per year by 2030, including a
  significant increase in deaths in later life and
  in chronic diseases as main causal factors (Gomes
  and Higginson 2008).
• 60 deaths occur in hospitals .
• Furthermore, the experience of acute care
  services is less than satisfactory 54 of
  complaints in acute hospitals relate to end of
  life (EoL) care or bereavement care (Healthcare
  Commission 2007).

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• The present medical and hospice systems do not
  have the capacity to guarantee quality of life
  for the majority of people with life limiting
  illnesses, or for their carers and survivors.
• The medical system focuses upon the
  identification and control of observable and
  predictable physical symptoms, for example, in
  cancer services. Other services and deaths are
  commonly described as noncancer.
• The hospice system claims to provide a holistic
  approach encompassing psycho-social and spiritual
  dimensions, with a particular focus upon patients
  and families.

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National demographic and epidemiological trends
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• Data reveal that increasingly, more people die in
  institutions (especially hospitals). This is
  particularly marked for older people and women.
  From 2012, it is projected that deaths will
  increase substantially. It is predicted that by
  2030, the number of deaths in England and Wales
  will be greater than the number of births (Shaw
  2006).
• The disadvantaged dying (Poppel, Cohen,
  Germain, 2003)that is, people dying with
  non-malignant diseases, presently receive minimal
  or no palliative care (Ahmed et al., 2004 536).
• The disadvantaged dying may also include the
  socially disadvantaged and marginalised. For
  example black and ethnic minority communities,
  older people, and the working class generally are
  under-represented in terms of both, access to,
  and provision of, palliative care services (Ahmed
  et al., 2004 537538).

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• A gap between rhetoric and reality has been
  identified in palliative care Death and loss are
  said to have become medicalised and, in some
  instances, dehumanised. An example of the latter
  - dirty dying.
• Hospice care is criticised for (1) an emphasis
  upon philosophy rather than place thus
  connections with local communities have tended to
  debar local people from involvement in local
  governance the claim of developing a
  psycho-social model reveals a predominance of a
  therapeutic, individualized psycho model

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Back to the future death sociality and
community?

• Particularly in English society, death is
  becoming increasingly privatised by modernist
  rationality.
• individualisation and secularisation has reversed
  institutional and community support for death (cf
  Kellehear 2007).
• However, being the great equalizer and
  unavoidable reality that death actually is, it
  can throw such processes into chaos and defy
  attempts to confine and define it as an
  individual and sequestrated affair.
• Death is the big issue for all of us.
• a general equivalence

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• Death is 'a gift' in that we do not fully
  understand it or know what, if anything, lies
  beyond. But this is a matter of opinion, belief
  and faith.
• Historically, death has brought an opportunity
  for regeneration and the continuation of personal
  and community bonds through individual and
  cultural remembrance strategies and rituals.
• However, is this beyond the contemporary English
  ethos dominated by indifference and consumerism?
• whereas the Scots and the Irish were a people, a
  definite community, innately together and full of
  songs and speeches about ourselves, the English
  were something else a riot of individualism with
  no real sense of common purpose and no collective
  volition as a tribe (OHagan, 2009 1) .

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• It is hard to dispute that throughout history
  death has created community (Kellehear 2007
  Conway 2007).
• Death like many other common experiences was a
  shared event that brought people together.
• In past times, death may not have been so well
  provided for by technology and drugs, but it was
  much better served by the community.
• Nonetheless, a growing sociality of death is
  visible in the present. The social needs of the
  dying and their loved ones is evidenced in the
  sociology of death and loss. Such work describes
  a move towards greater sociality in British
  society as a means of developing social supports
  (Exley, 2004 Walter, 1999).

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• Russell (2009) observes, we are shorn of the
  rituals of old and death can maroon us in grief.
  However
• The terrible fact of death is the loss of
  history, love and connection and meaning. The
  only consolation it offers is that the sympathy
  we are given and the sorrow we share can bring us
  closer to the living (Russell, 2009 31).

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Health promoting palliative care, social context
and social justice

• HPPC is based around the objectives of community
  empowerment, involvement and participation.
• Health services (including palliative care)
  should work in partnerships with communities of
  people.
• This position is based upon the central tenets of
  a social model of health.
• Health and illness reveal social characteristics
  and pre-determinants that, in many ways, are
  foundational root causes.
• The large and increasing gap in life spans
  between the rich and the poor in the UK may be
  linked with behavioural factors including
  smoking, fatty diets, lack of exercise, etc.
• However, these causes may also be regarded as
  symptoms of deeper processes. The underlying
  factor which typically determines such behaviour
  is social inequality.

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The importance of community development

• community development is key (Kellehear 2005).
• Recent public health initiatives in the UK (Sure
  Start, Health Action Zones, Education Action
  Zones, New Deal for Communities, etc) have used
  epidemiological (illness and death statistics)
  and deprivation index data (unemployment, child
  protection figures, etc) to define and target
  marginalized communities in geographical zones.
  
• Community development has been enthusiastically
  embraced in governance agendas for tackling
  health inequalities in the UK (NICE 2008), Europe
  and in North America (Weiss 1995).

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Three levels of community development

• Providing direct resources to the community for
  their development.
• Supporting and sustaining existing community
  development activities.
• Promoting the community development philosophy.

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• Community development is about supporting and
  enhancing a communitys ability to deal with the
  traumas of death.
• It seeks to bring about social change and to
  increase the capacities necessary for its
  realization.
• Communities may be regarded as people living in
  the same area or who share something in common,
  (such as the dying, carers, widows, widowers
  etc).

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St Josephs Hospice
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St Josephs Hospice

• The processes of planning and implementation are
  based on a partnership between the hospice and
  local people via a local community development
  organisation. Activities, include
• Discussion forums regarding cultural sensitivity,
  rituals and knowledge with local people and
  staff, patients and carers and other working
  relationships with local communities
• Increasing social events
• Building an understanding around the contexts,
  needs and cultures of local communities.
• Establishing awareness levels of and attitudes to
  palliative care services.
• Negotiating and developing planning and
  implementation.
• The provision of information regarding the
  hospice using local media and other forms of
  dissemination (eg posters).
• A project with a national artist and Rosetta
  Life includes the genres of photography, film
  and poetry about the experience of dying
  exhibited at local museums and galleries, and
  soon to be based at the hospice.
• A partnership involving local communities, the
  hospice, Barts and the London NHS Trust and Tower
  Hamlets', Primary Care Trust around heart failure
  and preferred care programmes for Bengali and
  Somali Communities.
• Some challenges
• St Joseph's is setting a good standard in terms
  of process but it is far too early to look at
  hard outcomes. Progress has been achieved within
  already stretched and limited resources. Without
  good networking and sheer hard work, the initial
  process of creating interest and gaining
  commitment would not have been possible.
  Further funding for research and training would
  be helpful.

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• It was decided to try out some small scale work
  involving a partnership between a local primary
  school and hospice. The project involved four
  stages (done over 4 weeks)
• Year 5 children received a lesson prepared
  jointly by key hospice staff and the class
  teacher.
• A visit by an artist and childrens worker to the
  school - 30 children visited the hospice for a
  tour and an initial meeting with 20 patients
  (same day).
• Two sessions split between school/hospice with
  patients and children working together to produce
  art works (supported by artist and childrens
  worker).
• A celebration at the hospice with children,
  parents, patients and hospice staff to debrief
  and reflect upon the activities.
• Some staff worried about involving patients.
  However, those who had volunteered insisted that
  they wanted to go ahead this included some
  taking part from their beds! Feedback was very
  good. Now a waiting list of schools. Parents
  volunteered, and children have been turning up at
  the hospice.
• Whilst informing may have been an initial
  objective, community development appears to be an
  output.
• Project repeated and developed in 18 primary
  schools (remaining as 4 weeks duration).
  Blackpool PCT is rolling out the project in local
  primary schools .
• Project developed beyond primary schools. Sixth
  form teenagers listened to patient life stories
  and transformed them into improvised theatre.
  Local students produced two plays based on the
  life stories of patients. Sixth formers also
  worked with patients to write their life story in
  the form of songs. This includes patients and
  teenagers performing their songs in a concert and
  a CD of the event being recorded and distributed.
  A play called Sunshine A Play, Some Stories and
  Some Songs was performed at the hospice by the
  patients

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• St Theresas Hospice in Darlington provides
  typical hospice services.
• Public health practice is in a developmental
  stage, Currently, a bid is being prepared to the
  local PCT for a community outreach worker.
• St Theresas have worked in local schools on a
  small scale basis.
• Worked with a local youth inclusion team to
  involve as many young people as possible in
  developing social support strategies around death
  and loss.
• Attempting to establish relationships with
  marginalised groups including gay and lesbian
  communities, people from socially disadvantaged
  areas, ethnic minorities and religious groups
  (all faiths), and groups of males.
• Provided a Reflections Room as a space for
  families. This was designed, decorated and
  furniture was specially made for it in
  partnership between the hospice and four local
  FE/HE colleges. St Theresas is a good example of
  some achievement, and considerable potential for
  community development.

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Strategic developments

• The recent UK End of Life Care Strategy (DoH
  2008) aims to improve care through integrated
  partnership working, and by encouraging public
  health approaches.
• too early for a comprehensive evaluation.
  However, it is possible to give an indication of
  some related local activities as a possible
  taster of whats going on.
• The local SHA is developing a charter for death
  by consulting local communities in order to
  identify and responding to need. Also developing
  a social marketing strategy. An initial scoping
  study is also being carried out on existing
  palliative care provision and local innovation.

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Other developments

• The National Coalition for Palliative Care is
  leading a national coalition to increase public
  awareness. This includes a survey of good
  practice. According to the NCPC, there has been
  a terrific response. The deadline for returns
  was mid-December ( www.ncpc.org.uk/surveys/coaliti
  on.html). Preliminary results are expected some
  time in early 2009.
• A release of funding (200k) has been made under
  the Eol Strategy for another survey to be put out
  to tender.
•  

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The door appears to be opening for HPPC

• Allan Kellehear has recently been appointed to
  the EoL Strategy Steering Group.
• Marie Curie and St Josephs have been working
  together with some input from academics to put
  together a research/practice unit with 3 or 4
  staff.
• Marie Curie and Help the Hospices have been
  involved in informal work to stimulate HPPC.

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Scotland

• The Scottish Assembly have adopted public health
  and health promotion as priority areas for
  exploration (National Assembly 2008 25). This
  is to be led by the Scottish Partnership for
  Palliative care and is expected to report its
  findings by March 2010.
• A HPPC Group set up. Representatives from
  organisations including the University of
  Edinburgh GP section, the NHS, Scottish
  Partnership for Palliative Care, several
  hospices, and it includes Chaplaincy
  representation. HPPC group working with NCPC
  (latter tasked with fact finding and collecting
  information). Scott Murray from the HPPC group
  has been invited to join the National group and
  others are likely to receive invitations.
• Present activities of the HPPC group include
• Using media/fund raising opportunities to promote
  awareness and upcoming activities.
• Debate about working in schools with children and
  parents
• Exploring mechanisms to bring about a national
  conversation on death and dying.
• A conference on 12 March, Strathcarron Hospice
  based around small scale workshops.
• Working with the SPPC to promote HPPC, including
  suggesting its incorporation into SPPCs national
  conference.

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Conclusion

• growth of community oriented work should be
  welcomed and encouraged.
• Community development provides opportunities to
  increase access to services and address the
  inequality of the disadvantaged dying. Such
  approaches also offer alternative resources.
• The move towards a social model of palliative
  care in the UK, whilst very much an incomplete
  project, is still a step in a positive direction.