4. Healthcare challenges for older people
at the end of life
Communication
Palliative
care
Costs of
care
Long-term
care settings
Dementia
care
5. Methods
• GP Sentinel networks
– Retrospective survey via network of general
practitioners about deceased patients
• Study of Health, Ageing and Retirement in Europe
– Retrospective survey by next of kin about deceased
study participants
• Dying Well with Dementia
– Retrospective surveys by GP, nursing home staff and
next of kin about deceased nursing home residents
6. Long-term care settings
What are the circumstances of end-of-life care
for older people in the home setting and in
residential homes in the Netherlands?
7. Long-term elderly care in Belgium and
the Netherlands
Belgium:
• Care homes
(woonzorgcentra)
– Community GPs
– In-house
coordinating
advising physician
Netherlands:
• Residential homes
(verzorgingshuis)
– Community GPs
• Nursing homes
(verpleeghuis)
– In-house specialist
geriatric care
8. Equally likely to receive palliative care,
but residential home residents more
often from GP with formal training
0
10
20
30
40
50
60
70
80
90
100
Palliative care by GP Palliative care by GP with
formal training
Specialized palliative care
Home Residential home
9. Older people living at home are more
often transferred in last 3 months of life
0
10
20
30
40
50
60
70
80
90
100
No transitions 1 transition 2 or more
transitions
Died in hospital
Home Residential home
10. Palliative care
Are there trends in the frequency of use of
palliative care services by older people in
Belgium between 2005 and 2014?
11. Palliative care
“Palliative care is an approach that improves the
quality of life of patients and their families facing
the problem associated with life-threatening illness,
through the prevention and relief of suffering by
means of early identification and impeccable
assessment and treatment of pain and other
problems, physical, psychosocial and spiritual.”
- WHO
12. Specialized palliative care in Belgium
Home:
• Multidisciplinary palliative homecare team
(1997, 2001)
Hospital:
• Palliative care unit with 6-12 beds (1997)
• Mobile palliative care support team (1997)
Care homes:
• Reference person for palliative care for
0.10 FTE per 30 residents (2009)
13. Palliative care in care homes is up, in
hospital stagnates
0
10
20
30
40
50
60
70
80
90
100
2005 2006 2007 2008 2009 2010 2011 2012 2013 2014
Home Hospital Care home Total
15. Palliative care = terminal care?
Late initiation also
seen in the
Netherlands for
older people living
at home and in
residential homes!
16. Communication
Are there trends in the rate of occurrence of
advance care planning for older people in
Belgium and the Netherlands between 2009 and
2014?
17. Advance care planning
Advance care planning is a process of
communication by which a person may make
their wishes and goals for future care known to
their healthcare providers, informal carers and
next-of-kin, anticipating future health issues and
potential loss of decision-making capacity.
18.
19.
20. However, differences between patient
groups increased
In Belgium, non-cancer patients, the oldest old
and people with dementia showed smaller
increases in % GP aware
==
Increasing inequality?
21. What about people with dementia?
Care for people with dementia is largely the
same as for older people in general, except
COMMUNICATION
22. Communication with people with
dementia in Belgium is low
0
10
20
30
40
50
60
70
80
90
100
Preference
proxy decision-
maker
Preference
place of death
Preference
medical
treatment
Primary
diagnosis
Physical
symptoms
Psychological
symptoms
Options for
palliative care
Mild dementia Severe dementia
Sudden and non-sudden deaths
23. Communication
To what extent are family carers aware that their
deceased next of kin living in a nursing home
had dementia in Belgium?
24. 28% of family carers not aware next-
of-kin had dementia at death
0
10
20
30
40
50
60
70
80
90
100
Mild dementia Moderate dementia Severe dementia
Aware Not aware
25. 28% of family carers not aware next-
of-kin had dementia at death
0
10
20
30
40
50
60
70
80
90
100
Mild
dementia
Moderate
dementia
Severe
dementia
Aware Not aware
Awareness less likely
- the longer the
admission
- the longer after
admission dementia
occurred
26. Costs of care
What are the out-of-pocket costs associated
with care in the last year of life of older people
in thirteen European countries, and which
patient and care characteristics are associated
with these costs?
27. Large variation across Europe
• % of people with out-of-pocket costs varied
between 96% (Sweden) and 21% (Spain)
• Out-of-pocket costs as a % of median
household income varied between 2% (the
Netherlands) and 25% (the Czech Republic)
BUT:
28. Care homes were most expensive type
of care in 11/13 countries
29. Summary
• Older people at home are more likely to be
transferred at the end of life
• Palliative care in care homes is increasing, but
in other settings is stagnating
• Communication between patients, GPs and
family is insufficient
• Care in care homes is one of the most costly
types of care in terms of out-of-pocket costs
30. Recommendations
1. Investing in formal and informal home care
More older people living at home = more
hospitalisations, more need for palliative care at
home and more burden on informal carers
31. Recommendations
2. More and earlier communication, especially
with people with dementia
Inevitable cognitive decline means early
communication is important. Stigma and lack of
curative options should not be a barrier to open
communication.
32. Recommendations
3. Earlier involvement of palliative care(?)
Older people and people with dementia may
suffer years of slow decline. From which point
on and in which situations is palliative care
beneficial?
33. Old age, dementia and end of life
care
Thesis presentation
Yolanda W.H. Penders
