End of life care

When the end of life is near and recovery is no longer possible, the type of care provided needs to change its purpose and instead focus on an approach aimed at improving quality of life for the patients and their families, by preventing and relieving pain, whether physical or psychological, social or spiritual. This is what is called palliative care. This is a holistic approach which takes into consideration the different aspects of end-of-life problems, in a necessarily multidisciplinary fashion. Palliative care is for any person who is in a life-threatening condition (and not only for terminal cancer patients, as is sometimes believed), as well as for their families and close relatives.

In this report, the purpose is not to review in detail how palliative care services are used, but to introduce a few indicators, selected with the agreement of Belgian experts, which may serve as alerts for practitioners and political decision-makers. The four indicators are:

  • Percentage of terminal cancer patients who receive palliative care (EOL-1);
  • Delay in delivering palliative care, measured by the percentage of terminal cancer patients who die within the first week of receiving palliative care (EOL-2);
  • Aggressiveness of end-of-life care, measured by the number of terminal cancer patients who still receive chemotherapy in the last two weeks of their life(EOL-3);
  • The manner in which the wishes of end-of-life individuals are respected, measured by the number of individuals who die in their usual place of living (EOL-4). This is an approximation, as the exact preferences of individuals are not known.

One major limitation of these indicators is that we currently only have national-level data on the end-of-life phase for cancer patients. It is uncertain whether these results can be generalised to all end-of-life situations.


Indicators on end-of-life care for patients with terminal cancer
(ID) indicatorScoreBELYearFlaWalBruSourceEU-15
Access to palliative care
EOL-1 % Patients who received palliative care * orange amélioration 53.4 2015 59.8 46.1 43.7 BCR
+IMA
-
Timeliness of palliative care
EOL-2 % Patients who died within one week
after start of palliative care *
orange amélioration 18.4 2015 16.3 21.7 23.0 BCR
+IMA
-
Aggressiveness of care at the end of life
EOL-3 % Patients who received chemotherapy
in the last 14 days of life **
orange amélioration 8.9 2015 7.5 10.9 9.7 BCR
+IMA
-
Patient centeredness
EOL-4 % Death at usual place of residence
(home or residential care) *
orange amélioration 29.9 2015 31.0 30.1 20.7 BCR
+IMA
-

* % of terminal cancer patients who died in the year
** % of terminal cancer patients who died in the year and received palliative care

Proportion of (terminal cancer) patients who received palliative care (EOL-1)

Belgium has set up a high-performance palliative care system. Networks have been installed in all provinces to organise training courses, coordinate and evaluate the actions of the different services, and ultimately promote the spread of a palliative care ‘culture’. For people who wish to end their days in their home, there are teams who are specialised in palliative home care and who also provide support to the patient’s close relatives. In some regions, daytime palliative care facilities have also been set up in order to provide relief to patients and their families.

In hospitals, two types of palliative care facilities have been set up: small palliative care units (offering a total of approximately 400 beds for the whole country), and mobile teams who provide specific support to end-of-life patients who are hospitalised in other departments. A similar palliative function has been created in nursing/nursing and care facilities.

It has also been ensured that palliative care is financially accessible to all. When at home, therefore, palliative care patients do not need to pay any personal contribution toward procedures performed by general practitioners, nor for certain procedures performed by nurses and physical therapists. There is also a palliative flat fee which covers additional costs generated by this care. Lastly, as a reminder, Belgium has also established its own legislation on euthanasia which is seen as a pioneer in Europe and in the world.

This indicator measures the proportion of terminal phase cancer patients who have received palliative care, which provides an approximate picture of palliative care accessibility in Belgium. 

RESULTS
  • More than half (53.4%) of all terminal cancer patients received palliative care in 2015, which represents an increase compared to 2008 figures (48.0%) (Figure 1).
  • The proportion of patients having received palliative care is higher in Flanders (59.8%) than in Wallonia (46.1%) and Brussels (43.7%) (Figure3)
  • It seems that cancer patients receive palliative home care more frequently than other terminal phase patients.
Figure 1- Percentage of patients with terminal cancer who received palliative care, by year of death (2008-2015)
Data source: BCR linked to IMA data
Figure 2- Percentage of patients with terminal cancer who received palliative care, by tumour type (2015)
Data source: BCR linked to IMA data
Figure 3- Percentage of patients with terminal cancer who received palliative care, by region (2015)
Data source: BCR linked to IMA data

Link to technical datasheet and detailed results

Proportion of (terminal cancer) patients who die within the first week of receiving palliative care (EOL-2)

It is often difficult to determine from what moment a patient should be considered as an end-of-life patient, and therefore when they should start receiving palliative care. It can indeed be observed that this type of care is often delivered a very short time before death, while the disease has been developing, in many cases, for several months with no possibility of recovery. This is why new criteria have been adopted, no longer based on life expectancy, but on the degree of frailty of the patients. Before, in order to be eligible for palliative care, a patient’s life expectancy had to be less than three months (as a legal requirement). Now, a questionnaire called PICT (Palliative Care Indicators Tool) will have to be used, in which the first question is: "Would you be surprised if your patient died within the next 6 to 12 months? ”. This new index should allow to extend significantly the number of individuals admitted to palliative care.

This indicator measures palliative care accessibility based on the proportion of terminal phase patients for whom this treatment was initiated too late (within one week before death).

RESULTS
  • In 2015, approximately 20% of (terminal phase cancer) patients who were receiving palliative care had started this treatment at a very late stage (one week or less prior to death). This figure has been slowly decreasing since 2008 (Figure 4).
  • The percentage of patients for whom palliative care was initiated at a late stage is higher in Brussels (23.0%) and in Wallonia (21.7%) than in Flanders (16.3%) (Figure 5)
Figure 4- Percentage of patients who died within one week after start of palliative care (2008-2015)
Data source: BCR linked to IMA data
Figure 5- Percentage of patients who died within one week after start of palliative care, by region (2015)
Data source: BCR linked to IMA data

Link to technical datasheet and detailed results

 

Proportion of (terminal cancer) patients who receive chemotherapy during the last 2 weeks of their life (EOL-3)

The main purpose of palliative care is to preserve as much as possible the quality of life of end-of-life patients. Curative treatments and treatments to slow the growth of the cancer such as curative and palliative chemotherapy, which are often difficult to bear, are therefore stopped and attention is shifted toward controlling pain and other unpleasant symptoms.

By measuring the proportion of terminal phase cancer patients who received chemotherapy during the last 14 days prior to their death, one can form an idea of the aggressiveness of care in the last days of life, and therefore of its (in)appropriateness.

RESULTS
  • In 2015, 9.2% of patients who died from cancer received chemotherapy during the last 14 days of their life (Figure 6).
  • This trend has been slightly decreasing: the figure has changed from 11.2% in 2012 to 9.2% in 2015.
  • Figures vary significantly depending on the type of cancer: from 3.5% among brain cancer patients to 37.0% for chronic myeloid leukaemia patients (Figure 7).
  • The percentage of patients who received chemotherapy during the last 14 days of their life is higher in Wallonia (10.9%) and in Brussels (9.7%) compared to Flanders (7.5%) (Figure 8) 
Figure 6- Percentage of patients who received chemotherapy in the last 14 days of life (2008-2015)
Data source: BCR linked to IMA data
Figure 7- Percentage of patients who received chemotherapy in the last 14 days of life, by tumour type (2015)
Data source: BCR linked to IMA data
Figure 8- Percentage of patients who received chemotherapy in the last 14 days of life, by region (2015)
Data source: BCR linked to IMA data

Link to technical datasheet and detailed results

Proportion of (terminal cancer) patients who die in their usual place of living (EOL-4)

In order to offer everyone the choice of dying in their home rather than in hospital, palliative care organisation in Belgium has focused on maintaining patients at home (or in a nursing facility), with a possibility of receiving the maximum amount of care in those places of living, and great attention directed to the close relatives living under the same roof. 

By measuring the proportion of cancer patients who die in their usual place of living, this indicator provides an idea of the respect paid to patient preferences, even if it is only an indirect reflection, based on the assumption that most patients would have wished for this.

RESULTS
  • In 2015, 63.0% of cancer patients died in hospital, 23% at home, and 7% in an MRPA/MRS facility (Figure 9).
  • The proportion of deaths in hospitals slightly decreased between 2008 and 2015, and the proportion of deaths in MRPA/MRS facilities slightly increased.
  • A greater number of people die in their homes in Flanders (25%) and in Wallonia (22%) than in Brussels (14%) (Figure 10).
 
Figure 9- Place of death in patients with terminal cancer (2008-2015)
Data source: BCR linked to IMA data
Figure 10- Place of death in patients with terminal cancer, by region (2015)
Data source: BCR linked to IMA data

Link to technical datasheet and detailed results