Caring for all in the last year of life: making a difference.
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Caring for all in the last year of life: making a difference. Inaugural lecture,21st April
2009Scott A MurraySt Columba’s Hospice Chair of Primary Palliative CarePrimary Palliative Care Research Groupwww.chs.ed.ac.uk/gp/research/[email protected]
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General Practice Teaching Team with student prize winner
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Palliative care research teamBroad clinical and methodological base
General Practitioners
Public Health
Community Nurses
Cardiologist/Respiratory Physician
Epidemiologist
Social Scientist
Psychologist
Social Worker
Ethnographer
Hospital Palliative Medicine Specialist
Hospice Doctors
Specialist Palliative Care Nurse
Ongoing patient & Carer group
PhD Students
Shared vision to understand the experience of patients and carers, and to develop and test models of best care
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Murray S, Sheikh A. Serial interviews for patients with progressive
diseases. Lancet 2006; 368: 901-902.
Kendall M, Harris F, Boyd K, Sheikh A, Murray S, Brown D, Mallinson I, Kearney N, Worth A. Key challenges and ways forward in researching the “good death”. BMJ 2007; 334:521-524.
Living and dying well
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Caring for all in the last year of life:
making a difference
1. All life-threatening illnesses
2. Earlier than later
5. In the community
3. Holistic care – all dimensions 4. All
nations
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World Mortality Rate
100% 100% 100% 100%
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Profile of People who die
UK1900 /
Age at death
46• Top 3 causes
1. Infectious diseases
2. Accident
3. Childbirth
• Disability before death Not much
UK 2000
Age at death
78• Top 3 causes
1. Cancer
2. Organ failure
3. Frailty/ dementia
Disability before death Months - many years
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Death
High
LowMany years
Function
Death
High
LowMonths or years
Function
Organ failure
6
Acute2
Dementia, frailty and decline
7
Death
High
LowWeeks, months, years
Function
5
Cancer
GP has 20deaths perlist of 2000patients peryear
Challenge 1 Quality end of life care for all
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“Cancer” Trajectory, Diagnosis to Death
TimeOnset of incurable cancer-- Often a few years, but decline often < 4 months
Fun
ctio
n
Death
High
Low
Cancer
Specialist palliative care available
Generally predictable course, short declineRelatively well resourced hospice care fits well
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Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or heart failure: prospective interview study of patients and their carers in the community. BMJ 2002;325:929-32.
Scott Murray Kirsty Boyd Marilyn Kendall
Allison WorthFred Benton Hans Clausen
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Organ System Failure Trajectory
Fun
ctio
n
Death
High
Low
(heart, lung, liver … failure)
Frequent admissions, self-care becomes difficult
~ 2-5 years, but death usually seems “sudden”
Time
Needs: acute care for exacerbations, chronic care, support at home*. No service designed to routinely meet the needs of this pattern of decline
*No one seems to believe we have got this even half right. Delamothe T. BMJ 2009;338:b11457
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Dementia/Frailty Trajectory
Time Variable -up to 6-8 years
Death
High
Low
Onset deficits in activities of daily living, speech, ambulation
Function
Needs: Integrated clinical care Long term support at home, carer support, possibly nursing care.
Care homes with reliably good end-of-life care
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Implications for Service Planning and Redesign
We need services which meet the typical needs of people on these three different trajectories
“Well, this certainly scuppers our plan to conquer the universe”
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May 2008BMJ poll: What area
in medicine should
be prioritised to make
the most clinical
difference to most
people?
Care for all at the end of life Scott A Murray and Aziz SheikhBMJ 2008 336: 958-959.
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Copyright ©2005 BMJ Publishing Group Ltd.
Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:1007-1011.
Challenge 2 Palliative care approach early, at diagnosis of life-threatening illness.
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Death
High
Low
Time
Function
Sentinelevents
Caring for people with organ failure: 3 stages
Stage 1 Physically well
Stage 2 Active supportive and palliative care
Stage 3 Terminal care
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Death
High
Low
Time
Function
Sentinelevents
Caring for people with organ failure: 3 stages
Gold standardsFramework
LiverpoolCare Pathway
CarePlan
Stage 1 Physically well
Stage 2 Active supportive and palliative care
Stage 3 Terminal care
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When is a patient palliative?
• Would you be surprised if Mrs A were to die within the next 12 months?
• Study in cardiology ward revealed that this question identifies 60 -70% of admissions
• Avoid “prognostic paralysis* ”*Murray SA, Boyd K, and Sheikh A. Palliative care in chronic illnesses: we need to move from prognostic paralysis to active total care. BMJ 2005. 330:611-12.
Joanne Lynn USA
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Challenge 3: meeting all dimensions
Physical Psychological
Social Spiritual
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Spiritual needs• Everyone has them if faced with a
serious illness
• Accepted definition used internationally
• Relates to meaning and purpose of life
• People may or may not use religious vocabulary
• Such needs may cause distress
Murray SA, Kendall M, Worth A, Boyd K, Benton TF, Clausen H. Exploring the spiritual needs of people dying of lung cancer or heart failure: prospective qualitative interview study. Pall Med 2004;18:39-45
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Dying is a 4-D activity
What’s happening with respect to other dimensions of need?
Method• Thematically analysed the serial interviews as
case studies longitudinally and then cross-sectionally from a number of studies.
• Identified the presence and characteristics of social, psychological and spiritual needs
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Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social psychological and spiritual decline towards the end of life in lung cancer J Pain Sympt Man 2007; 34: 393-402
His old friends won’t even take a cup of tea with me now I’ve got cancer” Mrs LR.
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Lung Cancer - psychological trajectory
Four times when distress was common
1. At diagnosis
2. After initial treatment
3. At recurrence or disease progression
4. At terminal stage
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“living with uncertainty”
“It was like a black hole”
“It’s much worse the second time round”
“You don’t know what is is going to happen to you,
fear is the worst thing”
“great nurses and departments they
are so caring”
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.
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Heart Failure
Social Trajectory“I feel like I’m in prison here with him and each day is just like that” Mr HM’s carer.
Psychological trajectory Psychological wellbeing appeared to mirror the physical and social trajectories “I slipped down the bed and oh panic attacks I got, Mr HQ.
Spiritual trajectoryThis reflected gradual loss of identity and growing dependence. “Where is god in all this, has god forsaken me” Mr HU.
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Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social psychological and spiritual decline towards the end of life in heart failure. J Pain Sympt Man 2007; 34: 393-402
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Awareness of these trajectories
• We can plan 4-D care• We can plan timely care when needs likely• Patient and carers can understand what the
future might hold
Murray SA, Chinn DJ, Sheikh A Access to psychological and psychiatric services needs to be improved for the dying JRSM 2006;99(12):601
“The physician who can foretell the course of the illness is the most highly esteemed”. Hippocrates
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Multi-dimensional distressGlioma
Physical Frailty
Bowel Cancer
PhDs
AIDS
Debbie Cavers
Anna Lloyd
Emma Carduff
Katharine Thompson
Janet Sikasote
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Establishing core set of assessment and outcomes measures
Dan Stark Irene J Higginson
Michael Sharpe, David Weller, Aziz Sheikh, Scott Murray, Marie Fallon
Implementing interventions in palliative care
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Challenge 4: reaching all in need
Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed and developing countries. BMJ 2003;326:368-72.
Liz Grant
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Outline comparison Edinburgh, Scotland
main issue existential or spiritual distress
analgesia effective anger in the face of illness “just keep it to myself” spiritual needs evident but
unmet diagnosis brought active
treatment patients concerned about how
carer will cope in future support from hospital and
primary care team
Chogoria, Kenya main issue physical suffering,
especially pain analgesia unaffordable acceptance rather than anger community support accepted patients comforted and
inspired by belief in God diagnosis signalled waiting for
death patients concerned about
acute physical and financial burden to family
lack of support, equipment, and basic necessities
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Approaching integration (n=4)
Localised provision (n=11)
Capacity building activity underway (n=11)
No hospice-palliative care activity yet identified (n=21)
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0
25
50
75
100
125Mg/capita
Source: International Narcotics Control Board By: Pain & Policy Studies Group, University of Wisconsin/WHO Collaborating Center, 2008
Global mean 5.5708 mg
Africa Regional mean
0.4865 mg
Botswana 0.6028 mg
Lesotho 0.0050 mg
Mozambique 0.0056 mg
Namibia 0.0665 mg
Swaziland 0.2290 mg
(156 Countries)
Botswana Swaziland Namibia Mozambique
Lesotho
Global Mean
(5.5708 mg)
Austria (121.45 mg)
France (42.30 mg)
United Kingdom (28.56 mg)
Germany (24.42 mg)
Global Consumption: morphine 2005
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Challenge 5 Making a difference - in the community
• In UK 19% of
people die at home• Over 50% would
prefer to die at home• Gold standards
framework in 80%
UK practices• Australia, Canada
Keri Thomas Geoff Mitchell
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“Living and Dying Well”
Promote a public discourse about death, dying and bereavement
National Action Plan for Palliative and End of Life Care in Scotland
Our research findings and advocacy are highlighted
Elizabeth Ireland
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Living and dying well in the community
Steps :
1. Identify
2. Assess
3. Plan
+ com
munic
ate
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Advance care planning interventions
• What’s the most important issue in your life right now?• If things got worse, where would you like to be cared for?
Murray S, Sheikh A, Thomas K. Advanced care planning in primary care. BMJ 2006;333: 868-869.
Community hospice team Primary care teams
MD
Deirdra Sives Bruce Mason
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Midlothian Care Homes project
• Routine advance care planning from admission to care homes
• Increase in DNAR status documented from 8 to 71% in patients who died
• Reduction of nearly 50% (from 15% to 8%) of residents dying in hospital
• Interviewed bereaved relatives reported better care
Lothian Health Board
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Caring for all in the last year of life:
1. All life-threatening illnesses
2. Earlier than later
5. In the community
3. Holistic care – all dimensions 4. All
nations
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Research funded 2009• Models of integrated palliative
care in primary and secondary care
• Lung cancer care in community
• Primary oncology
• AIDS in Africa
• Continuity of cancer
care from diagnosis• RCT of dignity therapy THE DUNHILL TRUST
• Guidelines for evaluating EoLcare
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Caring for all in
the last year of life:
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