Professor Mayur Lakhani

CBE FRCGP FRCP

www.dyingmatters.org

• Care of the dying is an important national and international

challenge

• The area of palliative care for non cancer diagnoses is generally a

neglected area

• Major challenge of an ageing population with frailty, dementia and

co-morbidity

• Current services are not fully fit for purpose - major changes are

needed in how services are designed and delivered

• Strong primary and community care system is essential

• So is an integrated offer of services especially with social care

• Importance of societal change – taboo about discussing death and

dying

• Where is the leadership coming from to solve this?

www.dyingmatters.org

Most deaths still occur in hospital whereas people want to die

at home (70%)

92000 people with an unmet need

Health inequalities are rife -non cancer

Hospices offer gold standard but cater for a minority of deaths

20% of acute beds occupied by dying patients

3.6 unplanned admissions in last year of life, Av LOS 26 d

Complaints about hospital care often about end of life

Reticence in talking about death and dying

Number of deaths to rise by 2030 by 17%

NAO Study in 2007 (Sheffield)

Looked at all deaths in hospital in a single month (200)

40% had no medical need to be there

£4.5 million a year could be saved

Nationally this equates to £450 million

Major workstream- service and pathway redesign

GP EOLC registers are incomplete

Many dying patients are admitted to hospital inappropriately because their preferences have not been ascertained

There is evidence that by taking steps to put people on the EOLC pathway can make difference

GPs are uniquely placed to influence this

Most deaths can be anticipated

registered list

chronic disease registers

nearly one million patients seen every working day in primary care.

Majority seen over 12 months

Patients regards GPs as a critical source of support.

Notice transitions

Aim: Support GPs in conversations with patients & relatives about dying & death

31% of public would like information about EoLC from their GP

75% of GPs agree they should encourage patients to plan for EoLC.

Yet, only 5% of GPs have written a will, 42% have discussed organ donation and 23% have discussed their funeral plans

People are ‘approaching the end of life’ when they are likely to die

within the next 12 months. This includes people whose death is

imminent (expected within a few hours or days) and those with:

advanced, progressive, incurable conditions

general frailty and co-existing conditions that mean they are expected

to die within 12 months

existing conditions if they are at risk of dying from a sudden acute

crisis in their condition

Life-threatening acute conditions caused by sudden catastrophic

events.

from GMC definition –

www.gmc-uk.org/static/documents/content/End_of_life.pdf

Support for carers and families

Information for patients and carers

Spiritual care services

Step 2

Assessment,

care planning

and review

• Agreed care

plan and

regular review

of needs and

preferences

• Assessing

needs of carers

Step 3

Coordination

of care

• Strategic

coordination

• Coordination

of individual

patient care

• Rapid

response

services

Step 4

Delivery of

high quality

services in

different

settings

• High quality

care provision

in all settings

• Acute

hospitals,

community,

care homes,

hospices,

community

hospitals,

prisons, secure

hospitals and

hostels

• Ambulance

services

Step 5

Care in the

last days

of life

• Identification

of the dying

phase

• Review of

needs and

preferences for

place of death

• Support for

both patient

and carer

• Recognition of

wishes

regarding

resuscitation

and organ

donation

Step 6

Care after

death

• Recognition

that end of life

care does not

stop at the

point of death.

• Timely

verification and

certification of

death or

referral

to coroner

• Care and

support of carer

and family,

including

emotional and

practical

bereavement

support

Discussions

as the end

of life

approaches

• Open, honest

communication

• Identifying

triggers for

discussion

Step 1

The End of Life Care Pathway

Would you be surprised if this person died in the next 6-12 months?

If answer is No then:

Assess patient & family for supportive & palliative care needs. Plan care. Consider patient for general practice palliative care register

When to Initiate a Discussion about Death and Dying

At diagnosis of life limiting or progressive

condition

Clinical deterioration: pain or distress

In answer to direct question from doctor:

“Would you like to talk about your

prognosis, what you can expect and what is

likely to happen in the future?”

Prompt from family

Repeated unplanned admission

Change in all GP’s self-rated confidence in starting and having conversations pre and post pilot

May 2010 (n = 46) Sept 2010 (n = 43)

0

5

10

15

20

25

30

35

40

Not confident Not veryconfident

Confident Veryconfident

0

5

10

15

20

25

30

35

Not confident Not veryconfident

Confident Veryconfident

Nu

mb

er o

f G

Ps

Starting conversations Having conversations

It is possible to increase GPs confidence in having

end of life conversations

Conversations between GP and patients, family

members and carers result in actions which

contribute to a good death

The Dying Matters communication materials were

useful to GPs and helpful to patients

1 A 72-year-old woman with bowel cancer, liver metastases, and persistent symptoms

2 A 80-year-old man with severe chronic obstructive pulmonary disease (COPD), low body mass index and increasingly frequent emergency admissions for infective exacerbations

3. A new care home resident, 78 years old with mild/ moderate Alzheimer's disease

A 88 year fit and well widow living alone mentions (during a routine consultation for flu vaccination) that she has been to ‘yet another funeral, I wonder if I will be next’

• Mrs Jones is 35 with metastatic melanoma. Had surgery and chemo for liver and lung metastases.

• CT scans show progressive disease despite biological agents taken for the last 2 months which have now been stopped “to give them a rest”.

• Appetite is poor and very fatigued. Two children under 5. worried about how her partner is going to cope

• The oncologist has offered more treatment if Mrs Jones feels “up to it”.

• DN requests GP home visit because family is not coping

23

Commissioning is the single key mechanism for

making sure that the right services are available to

meet local need, and that they are sensitive to the

needs of those approaching the end of life

regardless of their condition.

(End of Life Care Strategy: second annual report ,

2010)

Commissioning is not contracts!

www.dyingmatters.org

Every person who is coming to the end of their life is spotted early enough and supported to make a good plan for the type of care they would like.

For that we need a transformation in public and professional attitudes to dying, clinical practices and service provision.

A strong primary care system is essential

All GPs should up-skill in key areas

Let us work together to make a good death the norm everywhere –litmus test for our societies- how we care for the dying

Let us make positive choices. People who adapt to a changing world will flourish.

Weariness about change/reform: Our number one enemy is cynicism.

There is every reason to be optimistic. What better time than now for leadership from general practice?

The best of end of life care is yet to come.

www.dyingmatters.org