Palliative care beyond cancer

Professor Julia Addington-HallChair in End of Life Care, and co-Director of the national ‘Cancer Experiences’ supportive and palliative care research collaborative

National survey 2002 - 2004

Eight randomly sampled cancer networks, stratified by old regional health authorities

Office of National Statistics drew random samples of people aged 65 or above who died between August 2002 and February 2004 in each network.

‘VOICES’ questionnaire sent to person who registered death, about nine months after death

42% response rate – 1266 replies

Symptoms at home in last 3 months

0 20 40 60 80 100

Pain

N and V

Constipation

Bedsore

Breathlessness

Non-cancerCancer

All but bedsores significantly different

Treatment relieved it completely all/some of time

0 10 20 30 40 50

Pain

N and V

Constipation

Bedsore

Breathlessness

Non-cancerCancer

Pain and constipation significantly different

Pain at home in last week of life

Cancer patients were more likely to be reported to have had pain – 93% versus 68%

But pain control was reported to be better for cancer patients

But less good than in in-patient hospices …

0

10

20

30

40

50

60

Completely allthe time

Completely someof time

Partially/not at all

Cancer Non-cancer Hospice

Support from health services

0 10 20 30 40 50 60 70 80

DN care excellent

GP care excellent

Enough support afterhospital discharge

Received excell or goodsupport

Cancer Non-cancer

Significant differences in all

Dying from cancer versus other conditions

Growing evidence that many people who die from conditions other than cancer die with uncontrolled physical and psychological symptoms

– after days, weeks and months of increasing deterioration when, for many, finding meaning, has been increasingly difficult.

Their families receive less support than families of cancer patients, before and after the death

Research evidence growing:

Faster ….

Heart Failure

MND/ALS

Slower…

COPD

Multiple Sclerosis

Renal Disease

? Very very slow …

Dementia

Stroke

Other neurological conditions

Research evidence has influenced policy …

From mid 1990s, UK governments have repeatedly stated that:

‘Palliative care should be provided on the basis of need, not diagnosis’

Palliative and end of life care mentioned to greater or lesser extent in National Service Frameworks (NSFs) for:

– Coronary Heart Disease– Older People– Long-Term conditions

But, hospice and specialist palliative care in UK (almost) = cancer

In 2004/2005, 8% had a diagnosis other than cancer

27% died of cancer in England and Wales in 2004

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Cause ofdeath

Hospicepatients

OtherCancer

Trajectories of Dying

Four trajectories of dying (Lunney, Lynn and Hogan (2002):

– Sudden death– Terminal illness– Organ failure– Frailty

Theoretically derived; evidence of different patterns of functional decline in last year of life (Lunney et al, 2003), of demographic characteristics and care delivery – but not all deaths ‘fit’.

TimeOnset of incurable cancer -- Often a few years, but

decline usually < 3 months

“Cancer” Trajectory, Diagnosis to DeathFu

nctio

n

Death

High

Low

Cancer

Possible hospice enrollment

Heart Failure

Time

Func

tion

Death

High

Low

Begin to use hospital often, self-care becomes difficult

~ 2-5 years, but death often seems “sudden”

Modified from Lunney JR et al. JAMA 289(18):2387, 2003

Organ System Failure Trajectory

Frailty

Time

Func

tion

Death

High

Low

Modified from Lunney JR et al. JAMA 289(18):2387, 2003

Frailty Trajectory

New approaches needed

Models developed for cancer patients may not be appropriate for other patients with life-limiting illnesses

Particularly if we want to relieve suffering before the very end of life

Need to work in partnership with those already caring for these patients to develop (and evaluate) new models of care

‘Care beyond Cancer’ programme

Help the Hospices (with funding from the St James’s Place Foundation) funded 32 new innovative hospice projects to deliver palliative care to people with conditions other than cancer.

Mixed method evaluation, using case-study methods – to learn from experiences of projects

Projects provided direct care

The promotion and provision of inpatient care for patients with end-stage cardiac disease, respiratory disease and Multiple Sclerosis (MS), using a model of specially trained ‘resource nurses’.

Access to day hospice for people with advanced respiratory and cardiac conditions.

A physiotherapy - led breathlessness management service in the community for patients with conditions other than cancer.

Or indirect care

Education:– palliative care training and placement for

nurses on ‘care of the elderly’ wards in hospitals, and in nursing homes.

– Joint working between hospice and hospital nurse specialists to improve the care of people with chronic heart failure.

Needs assessment/coordination:– The co-ordination of multidisciplinary care

for people with MND in the community.

Findings

Felt to be successful by those involved.

Challenges included:– Education and

training– Partnership

working– Managing referrals

‘Developing a non-cancer service. A resource for hospices’

Jane Frankland, Angie Rogers and Julia Addington-HallHelp the Hospices, 2007

www.helpthehospices.org.uk

Education, education, education …

Everyone caring for people with life-limiting conditions should be able to identify and meet their basic palliative care needs, and refer on appropriately

Palliative care is everyone’s business

Pre-registration, post-registration and continuing education essential

Partnership working is essential

Most palliative care professionals have particular familiarity with cancer.

We will not meet the needs of all people who die by treating them all as if they are dying from cancer

Partnership between palliative care and other areas of health (and social) care is essential:

Primary care

Geriatrics

Cardiology

Respiratory medicine

Neurology

Renal medicine

Critical care medicine

And so on

ConclusionWe now have good evidence that people who die from conditions other than cancer have unmet needs for physical, psychological and social support.

We have less evidence about the appropriate models of palliative care beyond cancer

– Except that education and partnership are essential

Improving palliative care has to be everyone’s business – not the business of specialists in palliative care