Palliative care beyond cancer. Julia Addington-Hall. I Technical Conference about the Strategy in Palliative Care in The Nacional Health System of Spain. (Madrid, Ministry of Health and Consumer Affairs, 2008)

1. Palliative care beyond
cancer
Professor Julia Addington-Hall
Chair in End of Life Care, and co-Director of the national
‘Cancer Experiences’ supportive and palliative care
research collaborative

2. 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

3. Symptoms at home in last 3 months
Breathlessness
Bedsore
Constipation Non-cancer
Cancer
N and V
Pain
0 20 40 60 80 100
All but bedsores significantly different

4. Treatment relieved it completely all
/some of time
Breathlessness
Bedsore
Constipation Non-cancer
Cancer
N and V
Pain
0 10 20 30 40 50
Pain and constipation significantly different

5. Pain at home in last week of life
Cancer patients were
more likely to be
Cancer Non-cancer Hospice
60
reported to have had
pain – 93% versus
50
68% 40
30
But pain control was 20
reported to be better
for cancer patients 10
0
Com pletely all Completely some Partially/not at all
But less good than in the tim e of tim e
in-patient hospices …

6. Support from health services
Cancer Non-cancer
eceived excell or good
support
Enough support after
hospital discharge
GP care excellent
DN care excellent
0 10 20 30 40 50 60 70 80
Significant differences in all

7. 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

8. Research evidence growing:
Faster …. ? Very very slow …
Heart Failure Dementia
MND/ALS
Stroke
Slower… Other neurological
conditions
COPD
Multiple Sclerosis
Renal Disease

9. 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

10. But, hospice and specialist palliative care
in UK (almost) = cancer
In 2004/2005,
8% had a
100%
90%
diagnosis other 80%
70%
than cancer 60%
50% Other
40% Cancer
27% died of 30%
20%
cancer in England 10%
and Wales in
0%
Cause of Hospice
death patients
2004

11. 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’.

12. “Cancer” Trajectory, Diagnosis to Death
High
Cancer
Possible hospice
enrollment
Function
Low Death
Onset of incurable
Time -- Often a few years, but
cancer
decline usually < 3 months

13. Organ System Failure Trajectory
High
Heart Failure
Function
Low Death
Begin to use hospital
Time ~ 2-5 years, but death often
often, self-care
seems “sudden”
becomes difficult
Modified from Lunney JR et al. JAMA 289(18):2387, 2003

14. Frailty Trajectory
High
Frailty
Function
Low Death
Time
Modified from Lunney JR et al. JAMA 289(18):2387, 2003

15. 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

16. ‘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

17. 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.

18. 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.

19. Findings
Felt to be successful ‘Developing a non-
by those involved. cancer service.
A resource for
hospices’
Challenges included:
– Education and Jane Frankland, Angie Rogers
training and Julia Addington-Hall
Help the Hospices, 2007
– Partnership
working www.helpthehospices.o
rg.uk
– Managing referrals

20. 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

21. Partnership working is essential
Most palliative care Primary care
professionals have
Geriatrics
particular familiarity
with cancer.
Cardiology
We will not meet the
Respiratory medicine
needs of all people who
die by treating them all
Neurology
as if they are dying from
cancer Renal medicine
Partnership between Critical care medicine
palliative care and other
areas of health (and And so on
social) care is essential:

22. Conclusion
We 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