1. This Presentation Is Sponsored By
Atlantic Region

2. HOSPICE AND PALLIATIVE CARE Roots Reality Reaching Out
Nova Scotia Hospice Palliative Care Association Annual Conference 2011
HOSPICE AND PALLIATIVE CARE Roots Reality Reaching Out
Dr Nigel Sykes St Christopher's Hospice London

3. “I want what is in your heart and what is in your mind”

4. modern hospice and palliative care movement Dame Cicely Saunders
David Tasma
Inspirer of the
modern hospice and palliative care
movement
Dame Cicely Saunders
Founder of the
modern hospice and palliative care
movement

5. Where did Palliative Care come from?
Hospice and Palliative Care began as a healthcare reform initiative inspired by:
The perceived failure of existing cancer care
The particular failure of doctors to deal adequately with dying patients
At heart it has therefore always been medical in nature
But firmly centred on the patient experience
“It appears to me that many patients feel deserted by their doctors at the end. Ideally the doctor should remain the centre of a team who work together to relieve where they cannot heal, to keep the patient’s own struggle within his compass and to bring hope and consolation to the end.” Saunders, 1958

6. Initial planning of St Christopher’s
The initial emphasis was on care :
“Patients must be able to see the life of the world outside and yet not have the light in their eyes or the draught round their necks.”

7. A Three Part Vision St Christopher’s was legally registered in 1961
Care was now joined by research and teaching:
Provide care both in the Hospice and in patients’ homes
Encourage the teaching and training of doctors and nurses
Promote research into the care and treatment of the dying
Construction commenced in March 1965
St Christopher’s opened in July 1967

8. The Prospectus for St Christopher’s
The Hospice “will try to fill the gap that exists in both research and teaching concerning the care of patients dying of cancer and those needing skilled relief in other long-term illnesses and their relatives.” Saunders, 1967
St Christopher’s Hospice. Br Hospital J and Soc Serv Rev, 1967; 77(10/11/67):

9. How would the Vision be worked out?
An in-patient unit
An out-patient clinic
Continuity of care for patients able to go home, through a domiciliary service
Involvement of relatives in care
Bereavement care
Teaching in all aspects of care
Research into control of symptoms and mental distress Saunders, 1967
St Christopher’s Hospice. Br Hospital J and Soc Serv Rev, 1967; 77(10/11/67):

10. St Christopher’s Hospice
850 patients and families on any one day
Services free to users
48 in-patient beds
900 admissions each year
Serves a diverse population of 1.5 million people
15% non-malignancy
Independent charity
£15 million annual budget

12. Hospice has Grown Up It gave rise to Palliative Care
By 1975 (Balfour Mount, Montreal)
It became a “Movement”
By 1978 (Sandol Stoddard)
It spread:
Usually by inspiring dynamic individuals re-creating Hospice in locally adapted versions
A strength?
Not often by governments
A weakness?
It can save money and lengthen life
(Temel et al., 2010)
Temel JS, Greer JA, Muzikansky A et al. Early palliative care for patients with metastatic non-small cell lung cancer. NEJM 2010; 363:

13. Progress with the Vision
Care
UK:
217 hospices
160 voluntary (72%)
3194 beds
2519 voluntary (80%)
308 Home care teams
345 Hospital support teams
279 Day hospices
(Hospice Information, 2011)
Palliative care exists in 115 countries worldwide
(International Observatory on End of Life Care, 2006)
6 fewer hospices and 4 fewer day centres than in 2008

14. Progress with the vision
Teaching
Palliative care routinely taught in UK medical schools
Specialty or sub-specialty training schemes for palliative medicine in UK, Ireland, USA, Australia, New Zealand
Nursing, medical and multiprofessional degree and diploma courses
Major international conferences on five continents

15. Progress with the vision
Research
Thirteen UK professorial chairs related to palliative care and over 30 internationally
At least 12 peer-reviewed English-language journals primarily devoted to palliative care research and development
Regular national and international meetings dedicated to palliative care research

16. In the United Kingdom Hospice and Palliative Care have become routine
Palliative Medicine has been a recognised specialty for nearly 25 years
With training schemes – just like any other specialty
Palliative Care has entered government policy
The Cancer Plan 2000
National Institute for Clinical Effectiveness Guidance 2004
End of Life care Strategy 2008
Hospices have Care Quality Commission regulation

17. But was it meant to be like this?
Palliative Care remains an anomaly in the UK health system
A specialist service provided mostly outside the NHS:
British hospices raise nearly $Can 1.5 million a day from charitable sources to keep going
Fragmented, individualistic, unplanned
In 1980 the Wilkes report said no more in-patient hospices should be built (but most have been opened since then)
Hospices devoting more effort to funding issues than service delivery and performance?
Still largely cancer-orientated
Nearly 20 years after the SNMAC/SMAC report

18. Symptoms in cancer and non-cancer conditions

19. Progress with the Vision?
16% of cancer deaths occur in hospices
23% of cancer deaths occur at home with the involvement of a hospice team
50% of cancer deaths occur in hospital
7% of hospice patients have a non-cancer condition
0.2% of non-cancer deaths occur in a hospice
Deprived and minority ethnic groups under-represented in hospices
Overall, 4.3% of deaths occur in hospices, but 24% of people would like to die in a hospice.
Only 11% of people want to die in hospital.
56% want to die at home.
21.5% of male deaths occur at home, 15.3% of female deaths occur at home.

20. Progress with the Vision in Canada?
No more than 30% of Canadians currently have access to or receive hospice care
In some areas the figure is 16%
Variable funding arrangements according to province, setting and health plan
25% of the total cost of palliative care is borne personally by families
Only 6 out of 13 jurisdictions have nursing/personal care 24/7
Almost 70% of deaths occur in hospital
40% of terminally ill cancer patients visit the emergency department within the last two weeks of life
41% of long term care home residents have at least one hospital admission in their last six months of life
(CHPCA, 2010)

21. Hospices – and Palliative Care
Are hospices an intrinsic part of the palliative care vision?
“We went out in order to go back in again”
“There is need for diversity in this field”
Historically, the vision was brought to life through hospices
What is their place now?

22. A bit more vision…
“A few hospices will be needed for… intractable problems, research and teaching, …but most patients will continue to die in hospitals, cancer centres or their own homes; the staff they will find there should be learning how to meet their needs”
Saunders, 1978
The Philosophy of Terminal Care. In: The Management of Terminal Disease, 1st edn. (1978),

23. Society is changing Family splits and dispersal
Ethnic and cultural diversity
Ethnic minorities make up 8% of the UK population but only 3% of hospice deaths
An ageing society
The number of over 65 year olds in Canada has doubled in less than 30 years…
…and will double again in the next 25 years
The annual number of deaths in Canada will increase by 33% by 2020

24. Society is changing More chronic illness
80% of Canadians over 65 have a chronic illness
Nearly 60% have two or more chronic illnesses
Increased personal aspirations
Increased expectations of healthcare
But not necessarily the money to pay for them
Shrinking workforce relative to the numbers who need to be looked after
Changing patterns of volunteering

25. The Choice Agenda “No decision about me without me”
Palliative care for all who need it
When they need it
Where they want it
How they want it
The choice of death
Physician-assisted suicide/euthanasia?

26. How do Hospice and Palliative Care respond to these societal changes and pressures?

27. Taking the Palliative Care Vision into the future…
Means bringing
physical,
psychological,
social
and
spiritual care
to all dying people who need it
This can only happen if Palliative Care becomes an integral strand of healthcare and gains stable funding

28. The Hospice Vision is about transforming healthcare
If this is to happen we must:
Influence the generalists
Share our knowledge and facilities
Open up our care:
Increase the number of people we care for
Improve access across disease labels
Maintain quality
Contain costs

29. Currently Hospice Care receives huge public support - Why?
It is there for people and their social networks at the most emotionally traumatic life transition
It is widely perceived to do what it promises – giving of mind and heart
It makes other bits of the health and social care systems work in the way they are supposed to
Strong public support means that government support can continue to be niggardly (‘Big Society’ in action?)

30. The Dilemma for a Palliative Care service
Investment in a social worker is likely to result in enhanced quality of care for current patients but not much increase in patient numbers
Investment in another nurse may increase access to more patients but not quality of care for current patients (Tebbitt, 2006)

31. Icebergs of Excellence
Is our Choice:
Icebergs of Excellence
versus
A Sea of Mediocrity ?

32. “Mainstreaming excellence” (Going back in again)
Better care for the dying should become a touchstone for success in modernising the NHS. This is one of the really big issues — we must make it happen Nigel Crisp (NHS Chief Executive), 2008
Developing and co-ordinating an end of life strategy: Mainstreaming excellence in end of life care

33. Taking the vision into the future…
How do we “mainstream excellence”?
To provide UK hospice deaths to NICE standards for all who want them would entail a transfer of £1,300m from hospitals
The risk is a reduction to a symptom control service focused only on the patient’s obvious physical needs
A little for a lot (Randall and Downie, 2006)
Can we maintain a balance?
Rather more for rather more

34. Palliative Care In-Patient Units (Hospices?)?
Access to specialist palliative care beds is needed
Not necessarily many:
In 1991 St Christopher’s used 62 beds to support a home care case load of 85 patients
In 2011 St Christopher’s has 48 beds for a home care case load of 850 patients
But they produce better outcomes than a consult service alone (Casarett et al., 2011)
They ought to deal with complexity
How do you maintain the staff to do that if your unit is very small?
Casarett D, Johnson M, Smith D, Richardson D. The optimal delivery of paliative care. Arch Intern Med 2011; 171:

35. UK Department of Health End of Life Care Strategy
Palliative care now has a prominence it has never had before
“How we care for the dying is an indicator of how we care for all sick and vulnerable people. It is a measure of society as a whole and a litmus test for health and social care services”
End of Life Care Strategy 2008

36. Making Palliative Care an integral strand of healthcare (According to the UK End of Life Care Strategy)
The key is a whole systems approach
Dying well in the bed you’re in
(Actually, not having a bad death – 56% of NHS hospital complaints relate to end of life care)
Hospices are called to contribute their expertise to this effort
But the emphasis is on generalists

37. Whole systems approach - 1
Identify people approaching the end of life
Raise community awareness of death and dying (an opportunity for hospices)
Start discussion about end of life care preferences
Not just those dying of cancer
Advance Care Planning
Note preferences and review over time

38. Whole systems approach - 2
Coordination of care
Locality-wide End of Life register (not restricted to cancer) to facilitate priority care
Care plans available to out of hours and emergency services
Palliative care crises do not just happen in hours
There must be specialist access 24/7, backed up by out of hours generic services

39. Whole systems approach - 3
Make high quality services available everywhere
Not just for cancer
Improve the skills of staff who provide generic palliative care
Regulatory and higher education bodies need to be involved

40. Whole systems approach - 4
Appropriate management of the last days of life
Wherever they occur
Not just for cancer – care based on need not illness
Involves 24/7 access to skilled nursing, medical and personal care
Support of carers
Before the patient’s death and into bereavement

41. What is Missing? Actually making it happen Quality
What is practically measurable?
What is worth measuring?
An equitable funding mechanism
When government currently pays barely 50% of total Palliative Care costs
There is no extra money
The Australian AN-SNAP system is one approach
Paying by case-mix
Australian National Sub-acute and Non-Acute Patient classification system

42. Challenges for Hospices
Contributing imaginatively to the healthcare community as a whole
Performing to a standard
A properly constituted multiprofessional team
24h service availability
Demonstrating their outcomes
The non-malignancy agenda
Being efficient and providing value for money
Why do some hospices spend 90% of their income on their service and others only 50%?

43. So what is St Christopher’s doing?
Extending our reach
Making generalists the centre of our education
Training care home staff and introducing end of life registers
New initiatives in public education
Finding ways of looking after more people within our budget and while maintaining quality
Expanding our clinics
Medical and nursing consultancies
Staying viable
Living within our means
Getting better at raising money
Looking for opportunities to merge
Containing costs
Increased bargaining power

44. Education for Generalists
Making partnerships with the NHS
Advanced Nursing Practice for Palliative Care (Masters level)
Foundations Course in Palliative Care nursing
Innovative action learning programme for senior hospital nurses
End of Life Care for Social Services Care Managers
Educational project with Mental Health Services involved with Dementia
Over 4,700 participants on 180 courses in 2010

45. Education for Generalists
Enhancing skills in care homes
Advance Care Planning
The first syndicated training centre for the Gold Standards Framework
Over 120 care homes accredited to date
Deaths in care homes associated with the programme have increased by 20%
Care Homes have 3 times as many beds as the NHS but only 16% of deaths occur there

46. Public Education Aiming to create healthier attitudes towards death and dying
Schools project
Work with the BRIT School (Performing Arts and Technology College)
Drama
Video
Open Fridays
Concerts

47. The Schools Project
Children from Grade 5 upwards meet, work and talk with Hospice patients
38 schools have taken part in the UK and internationally

48. BRIT School students performing Hospice patients’ stories for the EAPC in Vienna

49. Hospice as Performance Venue
Sunday lunch
Christmas day
Live music
Community choir

50. Faces of St Christopher’s

51. But Specialist Education Continues too
Joint multiprofessional Masters in Palliative Care joint with King’s College, London
Accredited Masters courses in adult and childhood bereavement
Multiprofessional weeks
Management course for trainees and new consultants in Palliative Medicine
Interventional Pain Techniques in Palliative Care
100 courses a year
2500 participants from 39 countries

52. The Anniversary Centre
Opening up our Day Centre activities
More choice of therapies and activities
More flexibility what you do and when
More chances to socialise
More opportunity to get information
More scope to see patients and families at the Hospice
Better use of our Home Care nurses’ time
Opportunities to join in Day Centre activities

53. The Anniversary Centre
Large open social space for all users – Inpatients, outpatients, bereaved, visitors
Open - seven days 8am – 9pm
Planned day care – five days 8am – 6pm
Drop-in anytime – depending on capability
Access to full range of clinics and therapies
Access to group work programme
Café area –food cooked on the premises
Areas for relaxation and spiritual
contemplation
Hairdressing salon
Bathing
Waiting area
Garden

54. The Rehabilitation Gym
Circuit Training
Fatigue and Breathlessness Group
Use of Physiotherapy has doubled

55. Activities that reveal a life story and leave a legacy
SONGS
As I journey through life, often times taking it for granted
Not realising how precious it is
Tumbling in trial and tribulations it presents
And not taking the time to let a breath of fresh air to touch one’s lips
There are times when I have been in pain and despair
Only to wake the next morning
To know a miracle has happened
And I live another day
To be touched by the smiling sun
Oh how magnificent the gift of life…
STORIES
And I’m back in the pub where I worked in the 60s when the Beatles were huge. The pub is packed. Full up with people having a good time. They are all drinking, singing and laughing and smoking. They are all smoking. And it is the smoking that makes me realise where I am now. I am not in the past. I am here. Now. In the present. Typical. I don’t smoke a cigarette for my entire life. But this is what has me now. Cancer. But that’s life eh? Unpredictable. .
POETRY
…I am old and wrinkly
I wonder if I could have had kids.
I hear voices of an owl.
I want another life.
I am old and wrinkly.
I pretend to be in heaven.
I feel cold inside.
I touch the fur of my cat
I worry about the time I die.
I cry when things die
I understand that people have to die sometimes.
I say that I care for animals
I dream that I will get to do different things
I try to keep my cat healthy
I hope my plants will grow
I am old and wrinkly
I want to thank everyone who helps me
I am old and wrinkly…

56. An Anniversary Centre partnership with the London College of Fashion
Group of women talking
Low self-esteem, body image
No way out
‘never look or feel good again’
Listening to potential
What is possible?
Four week project
Celebration event
DVD

57. ‘… you come to us when you’re able, we come to you when you’re not…’
A bit less of this…
And more of this…

58. But also the possibility of this…
Or this
…or this
While you are at the Hospice

59. Research Some recent partnerships: With the Maudsley Hospital
The prevalence and determinants of depression in people receiving Palliative Care
The effect of basic Cognitive Behaviour Therapy training on hospice nurses’ ability to help anxiety and depression
With Southampton University
Developing user feedback measures (SKIPP and VOICES-SCH) tailored to Palliative Care
Overcoming the problem of response shift

60. The Reach of Palliative Care
Palliative Care should reach all dying people and those close to them
So that they have access to appropriate care and support
when they need it
wherever they need it
whoever they are
Hospices’ independence and single focus allow them to innovate and to demonstrate standards
But only the incorporation of a Palliative Care approach into all areas of healthcare where dying people are to be found will achieve this vision

61. “ You matter because you are you, and you matter until the end of your life ”
Cicely Saunders

62. Thank you for Listening