Organisation des soins palliatifs en Belgique - KCE

102 Palliative Care KCE reports 115
Most patients want to die at home. Family members do agree to some extent but more
frequently consider other options. Probably they feel the limits of their capacity to
support and to live with a dying patient. Moreover, GPs might assess this as well in their
advice to the patient and the family. Higginson and Costantini showed in their review
that patients’ preferences, intensity of home care and extended family support were
factors strongly associated with home death 57 . In the Senti-Melc 28 study only 47% of the
GPs were aware of patients’ wish concerning place to die 301 versus 71% in this study
conducted 2 years later. When wishes were clarified, nine out of ten patients wanted to
die at the place where they lived, in this study as well as in the Senti-Melc study.
Patients mostly want to be comfortable at the end of their life: most of them do not
wish treatments to prolong their life. Family members are even more explicit: they want
comfort for the patient.
This survey showed that assessing survival time before death is difficult, as mentioned in
the part about definition and in the discussion of the results of the web-based
questionnaire 56, 309 . The GPs in this survey were often inaccurate in their prognosis, even
for some dying patients.
Half of the patients included in the survey were still alive after 12 weeks: this finding
illustrates that 2 months of palliative care is inferior to the actual duration of palliative
care for half of the patients identified as palliative by their GP.
If discussed, the treatment options were mostly followed, only a small part of the
patients received treatments that were previously excluded. This was the case in
particular for admission in hospital and antibiotics.
The wish of the patient about the place of death has been followed for most patients, in
particular those ones who desired to die at home and in replacement home settings.
This is comparable to the Senti-Melc study: 80% of the patients died where they wished
to die when the GP knew about this wish 301 . If this wish was not fulfilled, the most
frequent reason was that the formal caregiver assessed that either the medical care was
too demanding, or psychological aspects would be too demanding for the family. If the
patient did not die in the requested place the GP usually triggered the transfer.
Sometimes however the patient him/herself changed his/her mind, probably to
overcome the problems for the family. The part about the needs of palliative patients
indeed showed that palliative patients are sensitive to stay as independent as possible 103 .
Key points: palliative patients in home settings
• Palliative patients at home are mostly old patients who suffer from cancer.
• Treatment options are not discussed for a quarter of the patients.
• Treatment options were excluded for half of the patients, with the exception
of admission to hospital and antibiotics.
• When discussed, the wishes for further treatment were mostly followed.
• Most patients want to die at home and the reality frequently answers to their
wish.