1. Symptoms and problems in the final week of life in primary care in Belgium
Kathleen Leemans, Vrije Universiteit Brussel,
End of Life Care Research Group

2. Content Background Methodology Research question Results
Conclusion and discussion
End-of-Life Care Research Group
Vrije Universiteit Brussel

3. Background Importance quality of end of life care ↑
Dying at place of wish (preferencence: 57.7%, actual: 71.8%)
Symptom burden
End-of-Life Care Research Group
Vrije Universiteit Brussel

4. Background Importance quality of end of life care ↑
Dying at place of wish (preferencence: 57.7%, actual: 71.8%)
Symptom burden
 Little representative information about dying at home under the care of the GP
End-of-Life Care Research Group
Vrije Universiteit Brussel

5. Background Importance quality of end of life care ↑
Dying at place of wish (preferencence: 57.7%, actual: 71.8%)
Symptom burden
 Little representative information about dying at home under the care of the GP
Goal: representative image of patients dying at home
End-of-Life Care Research Group
Vrije Universiteit Brussel

6. Methodology Large-scale retrospective mortality study
Monitoring end-of-life care and decision making in Belgium
Sentinel Network of GPs (Senti-Melc Study)
“a network of practices or community based physicians who monitor one or more specific illness problems on a regular basis”
representative for all Belgian GPs (age, sex, geographical distribution)
End-of-Life Care Research Group
Vrije Universiteit Brussel

7. Methodology Registration study (n=2690)
Weekly retrospective registration in 2005/2006 of all deaths of patients
 Representative for all non-sudden deaths in terms of age, sex and place of death (n= 1690)
Interview study (n=230)
Died at home or in a care home
> 1 year of age
“Was death sudden and totally unexpected?” No
 This study: dying at home (n=205)
End-of-Life Care Research Group
Vrije Universiteit Brussel

8. Research question Describe:
Patient characteristics
Clinical characteristics
Main diagnosis and comorbidities
Characteristics of the dying proces:
Functional status
Cognitive status
Symptoms (MSAS-GDI)
Quality of dying
For patients dying non-suddenly at home in Belgium
End-of-Life Care Research Group
Vrije Universiteit Brussel

9. Patient characteristics%
Age (years)
1-64 35 18
65-84
116 58
85+ 48 24
Gender, female 77 38
Steady partner at time of death
132 65
End-of-Life Care Research Group
Vrije Universiteit Brussel

10. Patient characteristics%
Age (years)
1-64 35 18
65-84
116 58
85+ 48 24
Gender, female 77 38
Steady partner at time of death
132 65
End-of-Life Care Research Group
Vrije Universiteit Brussel

11. Patient characteristics%
Age (years)
1-64 35 18
65-84
116 58
85+ 48 24
Gender, female 77 38
Steady partner at time of death
132 65
End-of-Life Care Research Group
Vrije Universiteit Brussel

12. Patient characteristics%
Age (years)
1-64 35 18
65-84
116 58
85+ 48 24
Gender, female 77 38
Steady partner at time of death
132 65
End-of-Life Care Research Group
Vrije Universiteit Brussel

13. Main diagnosis End-of-Life Care Research Group
Vrije Universiteit Brussel

14. Co-morbidities End-of-Life Care Research Group
Vrije Universiteit Brussel

15. Functional status End-of-Life Care Research Group
Vrije Universiteit Brussel

16. Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

17. Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

18. Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

19. Cognitive status End-of-Life Care Research Group
Vrije Universiteit Brussel

20. Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly
Feeling sad
51%
69%
Worrying
46%
Physical
Quite a bit to very much bothersome
Lack of energy
91%
63%
Lack of appetite
86%
42%
Pain
56%
32%
Shortness of breath
54%
End-of-Life Care Research Group
Vrije Universiteit Brussel

21. Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly
Feeling sad
51%
69%
Worrying
46%
Physical
Quite a bit to very much bothersome
Lack of energy
91%
63%
Lack of appetite
86%
42%
Pain
56%
32%
Shortness of breath
54%
End-of-Life Care Research Group
Vrije Universiteit Brussel

22. Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly
Feeling sad
51%
69%
Worrying
46%
Physical
Quite a bit to very much bothersome
Lack of energy
91%
63%
Lack of appetite
86%
42%
Pain
56%
32%
Shortness of breath
54%
End-of-Life Care Research Group
Vrije Universiteit Brussel

23. Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly
Feeling sad
51%
69%
Worrying
46%
Physical
Quite a bit to very much bothersome
Lack of energy
91%
63%
Lack of appetite
86%
42%
Pain
56%
32%
Shortness of breath
54%
End-of-Life Care Research Group
Vrije Universiteit Brussel

24. Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly
Feeling sad
51%
69%
Worrying
46%
Physical
Quite a bit to very much bothersome
Lack of energy
91%
63%
Lack of appetite
86%
42%
Pain
56%
32%
Shortness of breath
54%
End-of-Life Care Research Group
Vrije Universiteit Brussel

25. Symptoms Symptom Occurance Frequency and distress Psychological %
Highly frequently to almost constantly
Feeling sad
51%
69%
Worrying
46%
Physical
Quite a bit to very much bothersome
Lack of energy
91%
63%
Lack of appetite
86%
42%
Pain
56%
32%
Shortness of breath
54%
End-of-Life Care Research Group
Vrije Universiteit Brussel

26. Symptoms Most difficult to manage for GP: Shortness of breath (27%)
Lack of energy (19%)
Lack of appetite (12%)
Pain (12%)
End-of-Life Care Research Group
Vrije Universiteit Brussel

27. Symptoms Most difficult to manage for GP: Most bothersome for patient:
Shortness of breath (27%)
Lack of energy (19%)
Lack of appetite (12%)
Pain (12%)
Most bothersome for patient:
Lack of energy (27%)
Pain (16%)
End-of-Life Care Research Group
Vrije Universiteit Brussel

28. Symptoms Most difficult to manage for GP: Most bothersome for patient:
Shortness of breath (27%)
Lack of energy (19%)
Lack of appetite (12%)
Pain (12%)
Most bothersome for patient:
Lack of energy (27%)
Pain (16%)
All physical symptoms!!
End-of-Life Care Research Group
Vrije Universiteit Brussel

29. Quality of dying End-of-Life Care Research Group
Vrije Universiteit Brussel

30. Quality of dying End-of-Life Care Research Group
Vrije Universiteit Brussel

31. Conclusion and discussion
Patient characteristics:
More male patients
Steady partner
Clinical characteristics:
Cancer >> non-cancer
End-of-Life Care Research Group
Vrije Universiteit Brussel

32. Conclusion and discussion
Characteristics of the dying process:
Low functional status
Average cognitive status
Most difficult to manage and most bothersome  physical
Shortness of breath not most common, but most bothersome AND most difficult to treat
High quality of dying according to the GP
End-of-Life Care Research Group
Vrije Universiteit Brussel