Covenant Health’s 25th Annual Palliative Care Conference Faculty/Presenter Disclosure
Presenter: Dr Nigel Sykes
There are no relationships that pose a conflict of interest to declare AND this program has been developed without support from commercial entities. A Legacy of Pride and Progress 25th Annual Palliative Care Conference 2014
Palliative Care: Past, Present and Future
Nigel Sykes St Christopher's Hospice London UK 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 to be effective it must be a social movement too “I want what is in your heart and what is in your mind” David Tasma Dame Cicely Saunders 1911-1948 1918-2005 Inspirer of the Founder of the modern hospice and palliative modern hospice and palliative care care movement movement 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 £19 million annual budget 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) It can significantly reduce the risk of being in hospital at end of life (Seow et al., 2014) Progress with the Vision The UK now has: 223 hospices » 165 voluntary (74%) 3200 beds » 2570 voluntary (80%) 291 Home care teams 311 Hospital support teams 275 Day hospices (Hospice Information) Palliative care exists in 136 countries worldwide (Worldwide Palliative Care Alliance) 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 National Institute for Clinical Effectiveness End of Life Care Quality Standards 2011 In 2010 the Economist Intelligence Unit ranked UK top in the world for quality of death So is the job done in the UK?
When: Even for people with cancer: Three times as many die in hospital as in a hospice Twice as many die in hospital as at home with a community palliative care service Only 1 in every 500 deaths from non-cancer conditions occurs in a hospice Of 500,000 deaths a year up to 150,000 have unmet palliative care needs (Palliative Care Funding Review 2011) Deprived and minority ethnic groups are under- represented in hospices A series of recent highly critical reports and documentaries showed deficits in care delivery and continued exclusion Problems with attitude as well as resource Withdrawal of the Liverpool Care Pathway The Five Priorities for Care
1. The possibility that a person may die within the coming days and hours is recognised and communicated clearly Decisions about care are made in accordance with the person‟s needs and wishes Decisions are reviewed and revised regularly 2. Sensitive communication takes place between staff and the person who is dying and those important to them 3. The dying person, and those identified as important to them, are involved in decisions about treatment and care 4. The people important to the dying person are listened to and their needs are respected 5. Care is tailored to the individual and delivered with compassion – with an individual care plan in place This priority includes the fact that a person must be supported to eat and drink as long as they wish to do so, and their comfort and dignity prioritised (Leadership Alliance for the Care of Dying People, 2014) So is the job done internationally? When: 6 countries account for 79% of global morphine consumption Nearly 100 countries have no known palliative care provision Globally 56 million people die every year - many experience substantial but preventable suffering 35 million die from chronic disease, half of them under the age of 70 What are we aiming at?
The objectives of Palliative Care are clear: All diseases Everyone, in every setting, everywhere in the world Achievement is dependent on: Availability of opioid drugs Service integration Good communication – earlier Support for patient and family, recognising needs beyond the physical Adequate funding Getting people out of hospital Effective, widespread programmes of education 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 – are we really trying to get everyone to die in a hospice? 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 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 40% by 2026 Disease is changing
In developed countries half of people diagnosed with cancer now survive with their disease for at least ten years Cancer survival rates have doubled in the last 40 years But 5 to 10% have chronic pain (Glare et al., 2014) 20 to 30% have chronic fatigue or depression Dementia prevalence expected to double in 25 years More people with childhood-onset chronic disease are surviving into adulthood 1,000 per year make this transition in Japan (Ishizaki et al., 2012) All these groups may have Palliative Care needs How does Hospice and Palliative Care respond to these societal changes and pressures? 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 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 Taking the vision into the future… How do we “mainstream excellence”? To provide UK hospice deaths to National Institute for Clinical Effectiveness 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 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 2014 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? 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 Whole systems approach - 1
Identify people approaching the end of life Raise community awareness of death and dying (an opportunity for Palliative Care) Start discussion about end of life care preferences Not just those dying of cancer Advance Care Planning Note preferences and review over time Whole systems approach - 2
Coordination of care Locality-wide End of Life registers (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 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 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 What is Missing?
Actually making it happen Quality What is practically measurable? What is worth measuring? An equitable funding mechanism The UK government currently pays barely 50% of total Palliative Care costs A version of the Australian AN-SNAP system is being trialled by the UK Department of Health Paying by case-mix But there is no extra money We need to develop models of care less demanding of resources Challenges for Palliative Care
Contribute imaginatively to the healthcare community as a whole Non-malignancy agenda Survivorship Transition Deliver care that is accessible, good enough Evaluate what they do Be centres of service innovation that can be replicated elsewhere Partner with local systems to support the development of a competent and confident generalist workforce Spearhead efforts to change public attitudes and enable community participation Demonstrate what has been called “Intimacy at scale” (Leadbeater and Garber, 2010) So what is St Christopher‟s doing?
Making Links Making generalists the centre of our education Training care home staff New initiatives in public education Linking health and social care Enhancing Care Finding ways of looking after more people within our budget and while maintaining quality Expanding our clinics Medical and nursing consultancies Dementia Survivorship Transitional care Research that improves care Education for Generalists
Making partnerships with NHS/Social Services Advanced Nursing Practice for Palliative Care (Masters level) Foundations Course in Palliative Care nursing QELCA (Quality End of Life Care for All): Innovative action learning programme for senior hospital and community nurses Evaluated across 21 hospices working with 17 hospitals End of Life Care for Social Services Care Managers Educational project with Mental Health Services involved with Dementia Education for Generalists
Enhancing skills in care homes Advance Care Planning The first syndicated training centre for the Gold Standards Framework Over 160 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 Specialist Education Still Continues
Multiprofessional MSc in Palliative Care joint with King‟s College, London Accredited Masters courses in adult and childhood bereavement Multiprofessional weeks Management course for young specialists in Palliative Medicine Interventional Pain Techniques in Palliative Care Our total educational effort now reaches over 7,000 health and social care professionals per year 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 Death Chat Concerts The Schools Project Children from Grade 5 upwards meet, work and talk with Hospice patients •Over 40 schools have taken part in the UK and internationally BRIT School students performing Hospice patients‟ stories for the EAPC Hospice as Performance Venue
•Sunday lunch •Christmas day •Live music •Community choir 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 scope to see More opportunity to patients and families get information at the Hospice Allows us to be Better use of our flexible in our style Home Care nurses‟ and levels of care – time transition and Opportunities to join in survivorship Day Centre activities The Rehabilitation Gym
Circuit Training
Fatigue and Breathlessness Group
Use of Physiotherapy has doubled „… 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… But also the possibility of this…
Or this
…or this While you are at the Hospice Transitional Care Project
Teenagers and Young Adults aged between 18 and 24 One-third have cancer Social events on Saturdays in the Anniversary Centre with art, drama, gaming and music „It gives me freedom to meet Within six months the new people‟ „I enjoyed today, especially the numbers have grown tattoos‟ from 8 to 30 „There should be more of these Saturdays!‟ Moving into Social Care
St Christopher‟s now provides personal care for two of its boroughs to people in the last year of life In one of these we triage all community care for this group and operate a hospital rapid discharge scheme Smoothing transitions Stopping people going to hospital and getting them out quickly if they do Added benefit of volunteers and of training that is centred on attitudes of care Dignity and respect: “She‟s such a well mannered girl and that‟s healing in itself. I don‟t know how some of my other carers got employed” Research that Enhances Care- 1
Sustainability of End of Life Care skills training in care homes Comparison of enhanced facilitation vs standard facilitation Data on advance care planning, medication use and place of death from 2,400 patients Action evaluation study into the first UK application of Namaste in care homes: A scheme of intensive sensory stimulation for people with advanced dementia (Simard, 2013) Namaste has reduced sedative medication use and increased the satisfaction of both staff and families Research that Enhances Care- 2
With the Institute of Psychiatry 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 With King‟s College London Development of an outcome tool which is drawn from both iPOS (Integrated Palliative Care Outcome Scale) and SKIPP Palliative Care should reach all people who could benefit from it, as well as those close to them
Only the incorporation of a Palliative Care approach into every area of health and social care where people with advanced illness are to be found will achieve this vision Teams specialising in Palliative Care should be able to offer their colleagues elsewhere: An understanding that care is a partnership not a commodity An example of professional, compassionate confidence and competence A valuable resource for training and education, delivered by those who do the clinical work A multi professional group who are accustomed to working together and can support complexity The Challenge
…It has been said that history alternates between charisma and routinisation. …. The question for us today is: Is palliative care in danger of moving from the creative and disruptive influence of charisma to the cosy ambiance of routinisation? Palliative care services, even in Britain, generally have not yet reached their full holistic potential. But movements tend to become monuments. So the best tribute we can give…is to make sure that palliative care remains a movement with momentum…
Robert Twycross, 2006 Thank you for Listening