Evidence, Innovation, Practice, Fantasy and Reality: Collisions and Symbiosis in Palliative Care

1. Evidence, Innovation, Practice, Fantasy and Reality: Collisions and Symbiosis in Palliative Care Dr. Paul Ong Warwick Medical School

2. What does it mean to Comfort? • From the Latin: • conforto , āre, v. a. [fortis] , I.to strengthen much (late Lat.; esp. freq. in the Vulg. of the Vet. Test.) - Latin Dictionary Founded on Andrew's Edition of Freund's Latin Dictionary

3. In a perfect world… • Automatic and good personalised care for death and dying should have become integrated into: • Medical Practice • Our Health System • Our Communities • Every Home and Family • Our Society

4. But, • This is an imperfect world! • Whose idea of perfection was I alluding to? • Does everybody have the same idea of “good” and “perfection”? Reflect for a moment, do we all understand the same things by: • Dignity – Is it dignified to have a bum wiped for you with lots of love? • Quality of Life – Is it important that I can still play rugby? • Dying peacefully – and what if I don’t want to but want my lament to be heard by one and all? • Being Comfortable – what does this mean?

5. Hospice is an idea, not necessarily a place? • We may not be all alike • We may not have the same values • We may treasure different things as being important • Just because we started in the one place does not mean that we are still all the same! • What are your values (and your organisation) ?

6. The Good Death

7. Is this realistic? Dying is a lot like the real face of Christmas • “Christmas is a time when families all over the country get together and remind themselves of all the reasons why they're not together for the rest of the year. Perhaps this explains why the one thing many, many people want at Christmas is not a present, but rather to be absent. Until this happens, we all have to learn how to survive the sternest test of peace and good will at Christmas - the family.” • Guy Browning – The Guardian, Dec. 2001

8. If we… • …can’t get it together for Christmas – why do we expect to deliver a fairy-tale ending at the end of life when the stress levels and fractured relationships are at least 10 times worst than at Christmas time?

9. Fantasy or Compassion? • Hospice seems to articulate an unspoken idea where we think we need to be nicer to dying people than those on a surgical ward

10. But WHY? • Why are hospices are “required” to be nice places whilst your standard acute hospital is not really that nice • What does this say about society’s thinking and feelings about death and dying? • What does society expect of hospices and what meaning does hospice have for society? • What does society expect hospices to contain for society?

11. Fantasy, Reality, Good Practice Or Cheese? All of the Above??

12. Eternal Faces of Loss

13. Reality or Fantasy (1) • Reality: • If we admit that we can help quite a lot of people but not all. • If we admit that not everyone can die “nicely” - and anyway “nice” may be for the birds. • If we admit that we don’t really know what “dying well” necessarily means. • Engaged with our community about the reality of death and dying rather than fund-raising patter about “how Mrs. X had a brilliant time with us.”

14. Reality or Fantasy (2) • Fantasy: • If we think good practice means helping everyone. • That we know more about the mystery of death than most - we know about the processes of dying - yes. • If we actually think that we are good people because we work in a hospice • We are just ordinary people working in an extraordinary environment, the oil rig divers of the medical world.

15. Could the NHS… • Afford to outfit all hospitals to the same standard as a good hospice in-patient unit? • What sort of “Gold Standard” are we trying to live up to then?

16. The Ghost of Cicely? • …and the placing of an impossible vision for palliative care? Dame Cicely writes (1989): • “It seems to me that only a belief that all men belong to the family of a God who shared and still shares their suffering and death can bring an answer, not only to those whom we try to help but also the millions of deprived and wronged…that all wrongs will be righted and all the comfortless comforted should be the perspective of the individual, personal care that is offered in a hospice.”

17. So Innovation and Evidence… • …Innovating towards…What Model of Care? • Evidence for What Model of Care? • Are we all the same? • Do we all share the same values? • What is your model?

18. Knowledge we have • Whose knowledge? • What knowledge? • What are the values underpinning the knowledge that we hold dear? • If you don’t believe the same things, is your “knowledge” still the same?

19. Therefore, • What knowledge are you transferring to practice? • What does your organisation believe and so: • What is your organisation’s practice?

20. I am here • …to provide a frame-work to contain and encourage thinking for this day. • To promote an honest dialogue about who and what we are, what we believe, what our organisations are, or what they think they are.

21. I am not here… • To make my co-presenters’ lives difficult • Only asking that as we make our way through the day we think about what we believe, what our organisations believe and where we want to go • And accept the possibility that: • Our Directions may be different • Our Goals may be different • Therefore, what knowledge, what practice and what innovation you want might be different