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Mobile palliative care teams in Germany
Dr. Katharina Rockmann
Specialised palliative home care (PALLIAMO), Regensburg
What to expect in this talk
Talk about facts
Talk about numbers
Practical aspects
Personal experience
Facts and numbers
Germany at a glance…
82 Mio inhabitants
900.000 die / year (10,5 %)
250.000 die from malignancy
≈500.000 would require / benefit from palliative
care services!
Where do patients die in Germany?
hospital 56%
nursing home 23%
at home 19%
hospice 2%
Source: German society of palliative care (DGP)
Where do patient want to die?
Gomes at al.; Palliat Med 2012 (PRISMA)
Bell et al.; J Pain Symptom Manage 2010
private sphere being with family
safety
freedom
dignity
Palliative Care services in Germany
inpatient services:
palliative care units: n>300
hospices: n=240
community services:
hospice services: n=1500
100.000 volunteers
specialised palliative care teams:
SAPV: n=300
Source: Deutscher Hospiz und Palliativverband DHPV 2016
Who is looking after palliative patients in
the community?
if there is still specific treatment going on:
oncologists ( hospital / practice)
in case of best “supportive care”:
family physician plus community nurse
if additional care is needed: SAPV (10%)
SAPV in Germany
What is specialised palliative home care (SAPV)
palliative care
specialist
PC nurses
pastors
physiotherapists
volunteers
social worker
„…mobile palliative care unit“
End of life care
time
fun
cti
on
death
„Best supportive care“
SAPV
„total pain“
≈ 10% of palliative patients
weeks
Who is eligible?
• want to stay at home
• supportive relatives
• „let nature takes it´s course“
• advanced, progressive disease
• complex symptoms, difficult to control
• special knowledge/ skills required (team!)
SAPV
n=300 teams (1 team per 200.000-300.000 inhabitants)
>140.000 pt / year
covered by public health insurances (0,1% of health expenses)
only palliative care specialists
end of life care at home, in nursing homes and hospices
Specialised palliative home care
(SAPV)
non profit organisation (NPO)
registered co-operative
maybe linked to hospitals
every team has it´s own contract with health
insurances
various concepts possible
SAPV PALLIAMO Regensburg, Germany
4 doctors
6 nurses
1
social worker
1 cleric
volunteer hospice
team
physio
hospice Palliative care
unit
≈300.000 people (Regensburg)
+ ca. 65.000 people (Kelheim)
70 km
60km
PALLIAMO
...a few numbers....
2016: 275 patients (≈20 at times)
average duration of care: 21 days
16 visits /patient
average visiting time 58 minutes
89% died at home
97% place of death = preferred place
...a few more....
94% died “peacefully” (dying phase)
65% died during the night
77% had continuous parenteral medication (of
those who died at home)
Practical aspects /
personal experience
What are the needs
…of the patients?
…of the relatives?
….of the team?
What does the patient need the most?
adequate symptom control
support for his family
respect of his will / wish
What does the family need the most?
We did a questionnaire
(qualitative research)
6 weeks after death – letter sent to family
two questions:
1) „what did you appreciate the most?“
2) „What did you miss?“
30% reply
answers:
“the fact that someone really cares“
„availability“
„someone really cares“
-what does this mean?
our answer:
“pilot“ system (as opposite to shifts)
„pilot system“
one team member is in charge of the patient (“pilot”):
mon-fri, 9.00h-18.00h
1 nurse + 1 doctor
stays in close contact, visits regularly (1-7 times/wk)
builds up relationship
identifies needs
calls for additional support (i.e. doctor, cleric,
psychologist…)
After hours shifts: 1 nurse /1 doctor on call (changing
every day)
„pilot system“
advantages:
only few different people at the patients place
(“private sphere”)
needs are often better identified
precise observation of course of disease
no loss of information
„availability“
-how to deal with that?
you don´t have to be available for everyone at
anytime!
different categories of care
„consultation“
„coordination“
„Full care“
24 hour service:
• instable patient
• dying phase
• syringe drivers
• family support
A
B
C
SAPV: categories of care:
24h on call ???
problem: remote areas or few staff:
• cooperation with emergency doctors
• introduce team / emergency plan
• leave telephone number
• cooperation with GP´s
• may participate in after hours shifts
• cooperation with hospitals
• palliative care units / ED
• cooperation with nursing services
24h on call ???
Keep it simple:
• not everyone needs the full service
• availability by phone sufficient?
• „good night-calls“
• be creative (neighbour, friends…..)
• Emergency plan!
• On demand medication!
emergency plan !!!
advanced care planning (where to die?)
detailed information
for family
for any health care professional
when to call us
when to call GP
when to call ambulance
what medication to take when
Name
diagnosis ...“best supportive care“
„end of life care“
what medication
to give when!
what has been
discussed ?
On demand medication
individualised therapy
keep it clear and simple
consider the route? (s.c., oral, s.l.) !!!
always adress:
pain
breathlessness
nausea, vomiting
restlessness, anxiety
needs of team:
„how to maintain a healthy team“
„care for the team- be available!“
low hirarchy - appreciation!
show faith and trust- reassure!
ask regularily for stress / burden / personal
capacities
regular supervision
keep it simple
team meeting once a week sufficient?
documentation on paper (admission, course of
disease, discharge)
easy communication: secure messenger
services (mobile phone: i.e. „Threema“)
Go step by step!
…..Keep it simple…….
subcutaneous infusion
medication in 500ml normal saline:
7 gtt/min = 500ml/24h
regular subcutaneous injection
put all medication for 24h in a 12ml syringe
fill and insert „butterfly“ canula
inject 2ml every 4 hours
What factors influence the place of
death ?
diagosis (malignant /non malignant)
recognition of terminal illness / impending
death
provision of care
symptom controlled?
Supportive family?
Billingham et al.; BMJ supportive &Palliative care 2013
How do patients want to die?
„pain free“
„peaceful“
„dignified“
associated with preferred place of death
Vig et al; Arch intern Med 2004
symptoms
pp
pain
vomiting
breathlessness
psychiatric
wounds
urogenital
23%
Pumps / syringe driver
56%
21%
subcutaneous
pumps
intravenous
pumps
none
• keeping control
• freedom
• private sphere
• safety
• dignity
• with family
need to be adressed
by home care services
Needs
AAP
ambulant palliative care
SAPV
10%: additional SAPV
Physician family
nursing service volunteers
oncologist community
Funding (SAPV)....
funded by public health insurances (since
2007)
>100 Mio. € / yr in Germany (2016)
= 0,1% of health expenses
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