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Public health approaches to End of Life

Sue Matthews Consultant in Public Health Hertfordshire County Council19th May 2015

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What I will cover

• Key points from Public Health Approach to EOL care toolkit

– Current model and limitations – Overview of public health approach

• Presentation aims to generate discussion in conjunction with current progress

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Modern End of Life care – key points

• Palliative care tends to focus on the final weeks and hours of life• Tendency to prioritise terminal cancer care, serious neurological disorders, AIDS• Inequalities in access• Experiences of dying, caregiving and bereavement can occur over long

time periods• Social experiences associated with dying, caring and loss (loneliness and social

isolation, relationships) create psychological challenges • Community settings commonly escape formal end-of-life care service

engagement• Palliative care is at best psychosocial, and it is more ‘psycho’ than ‘social’

Public health approaches have a powerful role to play in addressing these gaps and needs

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Typical EOL trajectories Trajectory Characteristics of the last year of life

%of deaths (>18) England (2009)

Sudden death No obvious prognosis until last days 14%

Cancers Gradual decline and then rapid end stages without previous exacerbations or sudden changes in need 21%

Other terminal Gradual decline with some exacerbations in initial phase of last year then rapid end stage 4%

Organ failureOne predominant chronic condition with regular or fairly frequent exacerbations and with end of life typically being the result of a crisis and therefore more rapid deterioration in functions

19%

FrailtyMultiple co-morbidities accumulating with increasing age leading to a gradual decline and regular exacerbations before last days.

42%

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Cancer Trajectory

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Organ System Failure Trajectory

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Dementia/Frailty Trajectory

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Palliative and hospice care priorities• Physical, social,

psychological, and spiritual needs of patients and their carers are likely to vary according to the trajectory they are following

• Being aware of these trajectories may help plan care and help patients and carers cope with their situation

• Different models of care may be necessary

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Patterns of social psychological and spiritual decline towards the end of life in lung cancer

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Limitations with a service approach to EOL

Government prioritise service cost-effectiveness Means that • Services commonly take action only when matters

become problems• Limited involvement in psychological and social issuesEmotional and social needs continue to evolve along with the progression of illness and need to be addressed within the same networks and contexts that they arise

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Health promotion in palliative care

• End-of-life experiences are social and the goals of health and wellbeing are relevant to this group. For example:

– Prolonged physical and mental deterioration is associated with:• Depression• Carer burden • Social exclusion / isolation

– Bereavement linked with:• Increased mortality• physical, psychological and psychiatric morbidity• Social isolation and dysfunction

• All can be addressed by prevention, harm reduction, risk minimisation and responds well to early intervention

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Public health approach to end-of-life care

• Provides:– post-diagnosis and early care– care for experiences that take place in community settings (e.g.

sudden deaths)– wider support for loss and bereavement

• Relies upon relationships and partnerships between communities, governments and services

• Health and death education provide guidance in communities where dying and loss is not viewed as normal and routine

• Cultural and voluntary organisations, workplaces, schools, churches, etc. engage in collaborative partnerships

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Compassionate communities Compassion is an ethical imperative for health

Compassionate communities offer healthcare services; have local government policies; offer supportive interactions and communications; promote social inclusion and diversity, culture and spiritual traditions

Disease is not the opposite of health - death is

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Nine characteristics of a Compassionate City

1. Has local health policies that recognise compassion as an ethical imperative2. Meets the special needs of its aged, those living with life-threatening illness and those

living with loss3. Has a strong commitment to social and cultural difference4. Involves the grief and palliative care services in local government policy and planning5. Offers its inhabitants access to a wide variety of supportive experiences, interactions

and communication6. Promotes and celebrates reconciliation with indigenous peoples and the memory of

other important community losses7. Provides easy access to grief and palliative care services8. Has recognition of and plans to accommodate those disadvantaged by the

economy, including rural and remote populations, indigenous people and the homeless9. Preserves and promotes a community’s spiritual traditions and storytellers

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To be successful it requires:

• Partnership approach to education and learning – move from care providers to patients

• Investment in social capital and support partnerships • Networks go beyond the ‘family’ and include workplaces,

schools, churches and other community organisations and the media

• Reorient its focus from professional capacity building to community capacity building

• Palliative care services create partnerships and work directly with communities

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Developing a public health approach to end-of-lifecare

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Need to change the

way we conceptualise

EOL

Taken from: Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:1007-1011

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Key messages

• End-of-life care is more than palliative care• End of life exists within a social context• Dying, death, caring and loss create an array of social and

psychological troubles• Social issues such as isolation and stigma have adverse

effects upon terminal illness, ageing, care and loss• Bereavement and loss present mortality and morbidity burdens

that can most effectively be addressed by communities• Social, psychological and clinical needs are best addressed by

early interventions in community settings

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Public health approach – raise awareness and develop skills

• Individual and community death education • Developing personal skills for end-of-life care Examples of local action:

– Develop your workforce (ideally using patients and carers) and challenge assumptions around EoL care

– Develop accessible training packages on EoL for individuals and communities

– Explore how you can support your patients to prevent social isolation and loneliness and maintain existing social networks

– Offer to run a training session on EoL with district councillors

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Public health approach – Communities and partnerships

• Developing community action for end-of-life care• Creating supportive environments for dying, death and loss experiences• Creating partnerships between services and community institutionsExamples of local action:

– Look at what is already happening locally and try to build on it or promote it e.g. West Herts Neighbours Project, disease specific initiatives

– Forge links with other related community approaches e.g. Dementia Friendly Communities

– Review the good practice in the toolkit e.g. explore use of culture and the arts and schools projects to promote a community approach to EoL

– Engage other agencies and networks relevant to your local demography e.g. faith organisations, schools, community pharmacies, voluntary sector, GP Practices, workplaces etc

– Involve your MP/Councillor in any initiatives and lobby them to adopt the Dying Well Community Charter or the Compassionate Town/City Charter

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Public health approach – service development

• Encouraging health services to embrace clinical as well as community work• Encouraging ALL social and cultural sectors to develop end-of-life care

policies, not simply the health sectorExamples of local action:

– Review your own service and your practice to explore how you can better engage communities e.g. Does your practice focus on the individual or social relationships and interactions? Is a referral to a service your default approach and can you explore social or community options? Are community development programmes service driven or community driven?

– Understand your local populations needs and how it translates into prevention, harm reduction/risk minimisation and early intervention (eg carers, those living alone or with no immediate family)

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Any thoughts or comments?

?

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References

• National Council for Palliative Care (NCPC) and Public Health England (PHE) (2014). Public Health Approaches to EOL care toolkit http://www.ncpc.org.uk/sites/default/files/Public_Health_Approaches_To_End_of_Life_Care_Toolkit_WEB.pdf

• Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social psychological and spiritual decline towards the end of life in lung cancer J Pain SymptMan 2007; 34: 393-402

• Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:1007-1011