Opening up social innovation

He stressed the need to innovate by drawing on the heritage of the hospice movement, without being constrained by it.

You can catch up by viewing one of the four online video clips, or by reading our summary of the final plenary.

Videos

Summary 

Introduction

David Praill introduced Charles as a leading thinker and innovator, as well as being a regular contributor to the Financial Times and one of the 30 most powerful men in the world according to GQ.

Different deaths

His mother (86) and father (92) died this autumn, only six weeks apart, providing Charles with direct experience of two very different deaths.

His father died in a hospital, in an unpleasant physical environment, suffering at the hands of a failing “curative process” marked by “fragmentation, decline and  dishonesty”. Ultimately this led to his father “fading away and loosing himself.”. 

However, his mother died in a nursing home as what he described as the “main protagonist” in a self-shaped process – she was in charge of her own death.

Good death and bad death

Quoting “50%” of NHS complaints relating to death and dying, Charles highlighted the need to change the way people relate to death and dying.

Drawing on his direct experience, Charles drew a distinction between good and bad death; a good death requires that people are able to shape the “script” of their own death, rather than have it written for them by health professionals.

Asking the right questions

Improving people's experience of death and dying may involve making fundamental changes; asking the wrong questions could just result in more of the same or a slightly improved system made it its predecessor's image; fire safety is best improved by the use of fire alarms, not an abundance of fire engines.

Hospices will need to do the equivalent of providing people with smoke alarms- not get people in to “our places” but to allow them to find their own solutions in their own space.

If hospices become service providers, doubly so on the terms of the NHS, they risk entering into a cul de sac.

Moving forward

The movement needs to:

• Innovate; be ahead of the customer, not just reactive. This will involve asking challenging and difficult questions.

• Campaign; highlight issues in society, frame challenges in new ways, create new scripts on how to die.

• Capitalise one its capacity to mobilise supporters and the community; hospices risk loosing this aspect of their work if it is taken over by the NHS or the NHS confines hospices to a n a “service provision” box.

There are three elements to innovation:

• combining existing ideas, and borrowing ideas from outside (not necessarily thinking up new things) to do this you have to be good at looking outside

• you have to welcome challenge- challenge history, shared ethos and wisdom is an asset, but can also help create a conservative climate

• you have to be able to do, not just talk; you have to get into the water. By all means start in the shallow end with a life guard, but you have to make into the deep end on your own.

Thinking about the future:

• audit just how bad the situation is

• the question you ask largely determines the answer you get

• your vantage point determines what you can see

• start from people's needs, not from current services- talk to people about their lives, what they want to achieve at the end of life.

Different types of innovation: alternatives to hospice

Charles outlined a matrix of re-invention, setting informal and formal innovation against “sustaining” and “disruptive” changes; hospices should try to create new types of community based organisations, mixing skills incorporating formal and informal relationships.

Innovation should be done by drawing upon the heritage of the hospice movement, without becoming trapped by it. This should result in an alternative to hospice, not alternative variations of hospices as we know them.

The open source hospice

Drawing on the ideas popularised through the “open source playground” project, he suggested that the future may lie in the “open source hospice model” in which communities are able form part of the fundraising mechanism and organisational framework. Training patients to ask for what they want would be as, if not more important, than training staff.

Questions and answers

Why did his parents not go into a hospice?

The word “hospice” would have meant a definite place rather than a third place; names and the images they invoke are not insignificant.

If hospitals had a "hospice mentor”, community worker in hospital, they could help people to create a “decision space” which could help relatives to make decisions about palliative care.

How can we get people to make informed decisions about hospice and palliative care?

The more you get people to think about death and dying and managing it, the better things will be for hospices. We should ask “how do you feel about death” rather than “do you know about hospices?”. Comparisons will also help people to frame their thoughts.

Hospice movement as a counter revolutionary movement

Hospices act as repositories of compassion in a hostile word.

Consumerism, does not prepare you for old age; seeing life through the lens of dying has the potential for galvanise people into a revolutionary group; they will talk about relationships, participation and well being rather that materialistic things, status and so on.

What would a “care ethic” as opposed to a “work ethic” look like?