Compassionate Communities: Diversity in Dying

Our trustee, Ann West, was really enthusiastic about a Day Conference she attended on Compassionate Communities: Diversity in Dying at Bradford University on 16th May, as part of Death & Dying Week.  The speakers were Alan Kellehear, Professor of End of Life Care at Bradford University and Mary Clear, End of Life Doula – an activist from Todmorden.

Ann writes, “Having attended this Conference with an open mind, I was riveted by the first two speakers, open mouthed in amazement.”

Allan Kellehears book“Allan Kellehear is an internationally renowned speaker on the subject of end of life care, and intends to revolutionise this by creating Compassionate Communities. He will do this by getting cities to sign up to become Compassionate Cities – Bradford is one such city, Seville is another. His plan is to target the institutions such as the Local Authority, Health and Wellbeing Boards, Libraries, Schools, Primary Care, Health Promotion agencies, Hospices  and more. His view is to create the changes from top down, changing the currently haphazard way in which end of life care is managed.”

“Allan’s main points were:

  • The Health Service is done – has no further capacity, cannot cope with the ever increasing number of patients, particularly the elderly.
  • Most older people want to die at home, and yet most die in hospital.
  • At the end of life , and following bereavement, only 5% of the care given is professional; the rest is informal caring by family or friends
  • It takes time to die, dying is getting longer and longer, and bereavement lasts forever.”

“Allan also went on to say that health is everyone’s responsibility.  Currently people and services wait for a terminal illness, and then do something ( which is a 1940’s model).  Palliative care is partial and episodic.  It is important  that we learn about death and dying, bereavement and loss and that we care for each others lives – bereavement and loss is a community responsibility.   We need to promote a good death instead of symptom management.  His blueprint for compassionate cities includes:

  • Publicity in public places e.g. art galleries, museums
  • Raise awareness / education
  • Employers to have a realistic bereavement policy
  • A peacetime annual memorial parade
  • Churches to have a dedicated group for end of life care
  • Volunteer programmes in hospices acknowledge people’s wealth of skills / compassion
  • In Public Health there needs to be behavior change / environmental change, as well as a shared responsibility for healthy living and support around dying, caring and bereavement support.”

 

Doula“The next speaker was Mary Clear, an activist in Todmorden who is a Doula, a person who accompanies a dying person, and their family, during their final illness and carries out their wishes in relation to their funeral.”

“Mary spoke about a week of activities around death and dying called ‘Pushing Up The Daisies’ in Todmorden.   Mary commented that it had been a huge success.”

Ann says “I had never heard of a Doula, but in pre war times, like the woman who used to live on every street who delivered babies, there would be a person who did the laying out of a body and generally cared for the family. The Doula is a modern day equivalent.  A person who gives compassionate care to an individual, helps to give permission to talk about death and how the dying person would like their funeral to be.  Mary even arranges a funeral herself, according to the wishes of the person, helping to offer some autonomy in a situation where there is very little.  It would be impossible to reproduce Mary’s talk , which was very personal, which challenged the current way of death and showed that, in a small way, a bottom up approach can be effective.”

Ann concludes “If you compare the recent changes in attitude to Dementia brought about through collaboration of large institutions, including the Banks, transport services, the Police, schools, churches, social and broadcast media,  it gives hope that this initiative could develop in a similar way.   With people like Allan Kellehear and Mary Clear leading initiatives, it could happen very soon.”

 

Thanks very much to Ann for such a thorough report.  I am sure this will help our work in supporting Parishes and individuals to lift some of the taboos around talking about Death & Dying.