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HOSPICE AND HOSPICE AND PALLIATIVE CAREPALLIATIVE CARE
RootsRootsRealityReality
Reaching OutReaching OutDr Nigel Sykes
St Christopher's HospiceLondon
Nova Scotia Hospice Palliative Care Association Annual Nova Scotia Hospice Palliative Care Association Annual Conference 2011Conference 2011
““I want what is in your I want what is in your heart and what is in your heart and what is in your
mind”mind”
Dame Cicely Saunders1918-2005
Founder of the modern hospice and palliative care
movement
David Tasma1911-1948
Inspirer of the modern hospice and palliative
caremovement
Where did Palliative Care Where did Palliative Care come from?come from?
Hospice and Palliative Care began as a healthcare reform initiative inspired by:The perceived failure of existing cancer
careThe particular failure of doctors to deal
adequately with dying patients
At heart it has therefore always been medical in natureBut firmly centred on the patient
experience
Initial planning of St Initial planning of St Christopher’sChristopher’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.”
A Three Part VisionA 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 dyingConstruction commenced in March 1965St Christopher’s opened in July 1967
The Prospectus for St The Prospectus for St Christopher’sChristopher’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
How would the Vision be How would the Vision be worked out?worked out?
An in-patient unitAn out-patient clinicContinuity of care for patients able
to go home, through a domiciliary service
Involvement of relatives in careBereavement careTeaching in all aspects of careResearch into control of symptoms
and mental distress Saunders, 1967
St Christopher’s HospiceSt 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
Hospice has Grown UpHospice has Grown UpIt 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 versionsA strength?
Not often by governmentsA weakness?
It can save money and lengthen life(Temel et al., 2010)
Progress with the VisionProgress with the VisionCare
UK: 217 hospices
» 160 voluntary (72%)3194 beds
» 2519 voluntary (80%)308 Home care teams345 Hospital support teams279 Day hospices
(Hospice Information, 2011)Palliative care exists in 115 countries worldwide
(International Observatory on End of Life Care, 2006)
Progress with the visionProgress with the vision
TeachingPalliative 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
Progress with the visionProgress 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
In the United KingdomIn the United Kingdom
Hospice and Palliative Care have become routinePalliative Medicine has been a recognised
specialty for nearly 25 yearsWith training schemes – just like any other specialty
Palliative Care has entered government policyThe Cancer Plan 2000National Institute for Clinical Effectiveness Guidance
2004End of Life care Strategy 2008
Hospices have Care Quality Commission regulation
But was it meant to be like But was it meant to be like this?this?
Palliative Care remains an anomaly in the UK health systemA 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-orientatedNearly 20 years after the SNMAC/SMAC
report
Symptoms in cancer and Symptoms in cancer and non-cancer conditionsnon-cancer conditions
Progress with the Vision?Progress with the Vision?
16% of cancer deaths occur in hospices23% of cancer deaths occur at home
with the involvement of a hospice team50% of cancer deaths occur in hospital7% of hospice patients have a non-
cancer condition0.2% of non-cancer deaths occur in a
hospice Deprived and minority ethnic groups
under-represented in hospices
Progress with the Vision in Progress with the Vision in Canada?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 24/7Almost 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)
Hospices – and Palliative Hospices – and Palliative CareCare
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 hospicesWhat is their place now?
A bit more vision…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
Society is changingSociety is changing
Family splits and dispersalEthnic and cultural diversity
Ethnic minorities make up 8% of the UK population but only 3% of hospice deaths
An ageing societyThe 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
Society is changingSociety is changing
More chronic illness80% of Canadians over 65 have a chronic
illnessNearly 60% have two or more chronic
illnessesIncreased personal aspirationsIncreased 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
The Choice AgendaThe Choice Agenda
“No decision about me without me”Palliative care for all who need it
When they need itWhere they want itHow they want it
The choice of deathPhysician-assisted suicide/euthanasia?
How do Hospice and How do Hospice and Palliative Care Palliative Care
respond to these respond to these societal changes and societal changes and
pressures? pressures?
Taking the Palliative Care Taking the Palliative Care Vision into the future…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
The Hospice Vision is about The Hospice Vision is about transforming healthcaretransforming 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
forImprove access across disease labelsMaintain qualityContain costs
Currently Hospice Care Currently Hospice Care receives huge public support receives huge public support
- Why?- 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?)
The Dilemma for a The Dilemma for a Palliative Care servicePalliative 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)
Is our Choice:Is our Choice:
Icebergs of Excellenceversus
A Sea of Mediocrity
?
““Mainstreaming Mainstreaming excellence”excellence”
(Going back in again)(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
Taking the vision into the Taking the vision into the future…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 needsA little for a lot (Randall and Downie, 2006)
Can we maintain a balance?Rather more for rather more
Palliative Care In-Patient Palliative Care In-Patient Units (Hospices?)?Units (Hospices?)?
Access to specialist palliative care beds is neededNot 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 complexityHow do you maintain the staff to do that if your
unit is very small?
UK Department of Health UK Department of Health End of Life Care StrategyEnd 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
Making Palliative Care an Making Palliative Care an integral strand of healthcareintegral strand of healthcare (According to the UK End of Life Care (According to the UK End of Life Care
Strategy) Strategy)
The key is a whole systems approachDying 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
Whole systems approach Whole systems approach - 1- 1
Identify people approaching the end of lifeRaise community awareness of
death and dying (an opportunity for hospices)
Start discussion about end of life care preferences
Not just those dying of cancerAdvance Care Planning
Note preferences and review over time
Whole systems approach Whole systems approach - 2- 2
Coordination of careLocality-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 hoursThere must be specialist access 24/7,
backed up by out of hours generic services
Whole systems approach Whole systems approach - 3- 3
Make high quality services available everywhereNot just for cancer Improve the skills of staff who
provide generic palliative careRegulatory and higher education
bodies need to be involved
Whole systems approach Whole systems approach - 4- 4
Appropriate management of the last days of lifeWherever they occurNot just for cancer – care based on
need not illnessInvolves 24/7 access to skilled
nursing, medical and personal careSupport of carers
Before the patient’s death and into bereavement
What is Missing?What is Missing?
Actually making it happenQuality
What is practically measurable?What is worth measuring?
An equitable funding mechanismWhen government currently pays barely
50% of total Palliative Care costs There is no extra moneyThe Australian AN-SNAP system is one
approachPaying by case-mix
Challenges for HospicesChallenges for Hospices
Contributing imaginatively to the healthcare community as a whole
Performing to a standardA properly constituted multiprofessional
team24h service availabilityDemonstrating their outcomes
The non-malignancy agendaBeing efficient and providing value for
moneyWhy do some hospices spend 90% of
their income on their service and others only 50%?
So what is St Christopher’s So what is St Christopher’s doing?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 qualityExpanding our clinicsMedical and nursing consultancies
Staying viable Living within our means Getting better at raising money Looking for opportunities to merge
Containing costsIncreased bargaining power
Education for GeneralistsEducation for Generalists
Making partnerships with the NHSAdvanced Nursing Practice for Palliative Care
(Masters level)Foundations Course in Palliative Care nursingInnovative action learning programme for
senior hospital nurses End of Life Care for Social Services Care
ManagersEducational project with Mental Health
Services involved with DementiaOver 4,700 participants on 180 courses in
2010
Education for GeneralistsEducation for Generalists
Enhancing skills in care homes Advance Care PlanningThe first syndicated training centre for
the Gold Standards FrameworkOver 120 care homes accredited to
dateDeaths 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
Public EducationPublic EducationAiming to create healthier Aiming to create healthier
attitudes towards death and attitudes towards death and dyingdying
Schools projectWork with the BRIT School
(Performing Arts and Technology College) DramaVideo
Open FridaysConcerts
The Schools The Schools ProjectProject
Children from Grade 5 upwards meet, work and talk with Hospice patients
•38 schools have taken part in the UK and internationally
BRIT School students performing BRIT School students performing Hospice patients’ stories for the EAPC Hospice patients’ stories for the EAPC
in Viennain Vienna
Hospice as Performance Hospice as Performance VenueVenue
•Sunday lunchSunday lunch•Christmas dayChristmas day•Live musicLive music•Community choirCommunity choir
Faces of St Christopher’sFaces of St Christopher’s
But Specialist Education But Specialist Education Continues tooContinues 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 Care100 courses a year
2500 participants from 39 countries
The Anniversary CentreThe Anniversary Centre
Opening up our Day Centre activitiesMore choice of therapies and activitiesMore flexibility what you do and whenMore chances to socialiseMore opportunity to get information
More scope to see patients and families at the HospiceBetter use of our Home Care nurses’ timeOpportunities to join in Day Centre
activities
The Anniversary Centre 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
The The Rehabilitation Rehabilitation
GymGym
Circuit Training
Fatigue and Breathlessness Group
Use of Physiotherapy has
doubled
Activities that reveal a life Activities that reveal a life story and leave a legacystory and leave a legacy
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..
SONGS
As I journey through life, often times taking it for grantedNot realising how precious it isTumbling in trial and tribulations it presentsAnd 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 despairOnly to wake the next morningTo know a miracle has happenedAnd I live another dayTo be touched by the smiling sunOh how magnificent the gift of life…
POETRY
…I am old and wrinklyI 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 catI worry about the time I die.I cry when things dieI am old and wrinkly.I understand that people have to die sometimes.I say that I care for animalsI dream that I will get to do different thingsI try to keep my cat healthyI hope my plants will growI am old and wrinklyI want to thank everyone who helps meI am old and wrinkly…
An Anniversary Centre partnership An Anniversary Centre partnership with the London College of Fashionwith 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
A bit less of this…
And more of this…
‘… ‘… you come to us when you’re you come to us when you’re able, we come to you when able, we come to you when you’re not…’you’re not…’
But also the possibility of this…
…or this
While you are at the Hospice
Or this
ResearchResearch
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 UniversityDeveloping user feedback measures (SKIPP
and VOICES-SCH) tailored to Palliative CareOvercoming the problem of response shift
The Reach of Palliative The Reach of Palliative CareCare
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
“ You matter because you are you, and you matter until the end of your life ”
Cicely Saunders
Thank you Thank you for Listeningfor Listening
