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/ppcrg.phpScott.Murray@ed.ac.uk

General Practice Teaching Team with student prize winner

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

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

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

World Mortality Rate

100% 100% 100% 100%

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

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

“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

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

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

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

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”

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.

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.

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

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

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

Challenge 3: meeting all dimensions

Physical Psychological

Social Spiritual

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

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

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.

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

“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”

.

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.

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

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

Multi-dimensional distressGlioma

Physical Frailty

Bowel Cancer

PhDs

AIDS

Debbie Cavers

Anna Lloyd

Emma Carduff

Katharine Thompson

Janet Sikasote

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

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

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

Approaching integration (n=4)

Localised provision (n=11)

Capacity building activity underway (n=11)

No hospice-palliative care activity yet identified (n=21)

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

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

“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

Living and dying well in the community

Steps :

1. Identify

2. Assess

3. Plan

+ com

munic

ate

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

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

http://secondlife.com/support/downloads.php

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

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

Caring for all in

the last year of life: