Disadvantaged dying – caring for the invisible

Categories: Care.

This needs to change. So why do we struggle to provide good care to those who are different from us? Are they hard to reach or are we hard to access?

The reasons are many and are often based on myths, assumptions and fear embedded not just in society, but with the referrers to services and within the services themselves.

A complex mix that adds up to a culture of exclusion, with barriers that could melt if only we become better at challenging assumptions, knowing our local data and replicating the projects that are really making a difference.

There is an increasing amount of data to inform us – but often a surprising lack of interest in interrogating the numbers that could dictate local strategy and start to reverse trends.

For instance, all services know the postcodes of patients referred to them. Dr Katherine Sleeman’s research used postcode data to show that those who die in hospice beds continue to come from more affluent areas, and that the trend is worsening rather than improving.

The reasons for this could be many: do GPs make assumptions that those in deprived areas would prefer hospital to hospice? Is it more difficult to find the right words to describe hospice to some people? What are the other inhibitory social factors in those who live in poorer postcodes and how fair and open are the admission criteria for hospices? Are hospices selectively choosing affluent patients to sustain donations?

I would rigorously challenge this last suggestion as a reason for the trend, having been involved in a hospice admission panel for 18 years!

But hospices are certainly very concerned with keeping patients’ length of stay short, and are increasingly influenced in their decision to admit patients by whether a person will have enough social and family support to ever leave the hospice.

But key for me is whether hospices are looking at their postcode data and analysing referral trends.

Strategies to reduce exclusions

I am encouraged by the number of hospices putting on conferences to explore strategies to reduce exclusion.

The Hospice of St Francis ran a ‘Seldom heard’ day last week, focussing on dementia and learning disability, while Wigan and Leigh Hospice are running a conference in February looking at palliative care and the interface with mental health.

In December I attended an amazing conference run by Compton Hospice on the theme of Disadvantaged dying and would just like to share a few nuggets of learning that I took away with me:

Dying without a home – presentation by Dr Caroline Shulman

  • 7,500 people slept on the streets of London last year.
  • The homeless die young – average life expectancy for a woman is 43, for a man 47.
  • Self-esteem is very low in homeless people – they don’t feel worthy in comfortable and kind environments and often self-discharge from hospice and hospital.
  • The chaotic hostel environment is often preferred – so care needs to go to the hostel.

The travelling population – presentation by Shirley Barrett

  • Caravans are counted, not people – we need better data about travellers.
  • The extended family is the same as close family – so crowds of visitors will want to visit dying patients to say goodbye.
  • Death at home in the caravan is not acceptable – the caravan would have to be burned!
  • The whole community goes to the funeral – it’s the place to be.

Caring for older LGBT people – presentation by Kathryn Almack

  • LGBT people are less likely to access palliative care and less likely to be in touch with biological family.
  • ‘The Last Outing’ study, by Sue Ryder Care Centre Research Group at The University of Nottingham, found that 60% LGBT people had no confidence in care services.
  • Heteronormativity is the assumption that everyone is heterosexual.

End of life care for those with a learning disability – presentation by Cliff Hawkins

The Muslim community and end of life care – presentation by Sughra Ahmed

  • Increasing diversity of staff and volunteers can help engagement with Muslim community, as can using new channels of communications, such as Asian radio stations.
  • Need to challenge assumptions about family obligations in Muslim families.
  • Need to capture ethnicity and religion data of referrals.
  • “I met 9 social workers and no-one mentioned a hospice. I needed a hospice a long time ago” – quote from a Muslim patient.
  • Useful resource: Bridging the gap: strengthening relations between hospices and Muslims of Britain by Hospice UK, Together for Short Lives and the Woolf Institute.

People living and dying with dementia – presentation by Maurice Lawrence

Palliative care for detained asylum seekers – presentation by Dr Janet Reiss

  • Palliative care needs in Immigration Removal Centres (IRCs) are huge – there are 30,000 people in 12 detention centres around the UK.
  • There is no detention time limit in the UK and limited medical input – much suffering and uncertainty at the end of an already dangerous journey.
  • The charity Medical Justice provides medical support in the IRCs – identifying serious mental and physical illness and advocates for more and better medical and palliative care – how about volunteering?

Death in custody – presentation by Lorraine McBride

  • There has been a 100% increase in older people (over 50) in custody since 2002.
  • Prisoners may be released on compassionate grounds towards the end of life – but often with no safe link into community palliative support.
  • Home is prison for many long-term offenders – many do not want to be released on compassionate grounds for the last phase of life.
  • Prison officers have to override DNACPR orders, even for an expected natural death and are obliged to attempt resuscitation.
  • Macmillan and Compton Hospice are working with HMP Oakwood to improve care for prisoners with complex/palliative care needs.

Perhaps the greatest inequality in palliative care however, beyond the groups described above, is the poor access for the common causes of death other than cancer – chronic heart and lung disease. Triggers for palliative care from Marie Curie is a key report exploring barriers to access, and recommendations for government and healthcare professionals to redress the balance. 

Finally, this week there was a moving blog from in The New York Times entitled Unequal lives, unequal deaths. It was written by a palliative physician and describes the impossibility and challenges of supporting deaths at home in deprived urban communities.

“The proverbial ‘good death at home’ is often out of their reach,” says Dr Sunita Puri. She brings into sharp focus the need to understand the socio-economic reality of our local communities if we truly wish to support everyone with the choice to die at home. It often takes more than love.

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