Introduction 1 2 3 4 5 6 7 7 6 7 8 10 11 Materials and methods Patients 12 p p The Medical Ethical Committee of the Erasmus MC, University Medical Center Rotterdam approved the research protocol. Questionnaire for attending physicians 2 13 Interview with bereaved relatives 14 15 16 17 18 19 Statistical analyses t 2 Results 1 1 Table 1 Characteristics of patients and bereaved relatives Characteristics N N Patients  Age at death, in years [mean (SD)] 65 (11) 64 (11) n N   Female 48/103 (47) 37/63 (59) n N   With partner 76/103 (74) 47/63 (75) n N a 71/102 (70) 41/63 (65) n N   Religious 62/103 (60) 40/63 (63) n N b 72/103 (70) 46/63 (73) n N   Lung 48/103 (47) 31/63 (49)   Breast 19/103 (18) 14/63 (22)   Other 36/103 (35) 18/63 (29) n N   Surgery 45/102 (44) 26/62 (42)   Chemotherapy/hormone therapy 84/101 (83) 51/61 (84)   Radiotherapy 54/101 (54) 36/61 (59)  Place of death n N 49/103 (48) 29/63 (46)    Hospital 35/49 24/29    End-of-life care unit 6/49 2/29    Hospice 4/49 3/29    Nursing home/home for the elderly 4/49 – n N 54/103 (52) 34/63 (54)    At patient’s own home 52/54 32/34    Elsewhere 2/54 2/34 Bereaved relatives  Age at the time of dying of the patient, in years [mean (SD)] – 55 (15) n N   Female – 40/63 (63) n N   Spouse – 39/63 (62)   Son or daughter – 19/63 (30)   Other relationship – 5/63 (8) a b 2 Table 2 Dying in an institution or at home: the physician’s perspective   Place of death P χ 2 N N N a  Patient died peacefully 28/41 (68) 29/42 (69) 0.94  Patient was able to say goodbye to relatives 26/40 (65) 33/44 (75) 0.32  Patient was ready to die 15/41 (37) 31/44 (71) 0.002  Patient died suddenly and unexpectedly 13/42 (31) 14/44 (32) 0.93  Patient’s dying was preceded by period of agitation 25/40 (63) 29/41 (71) 0.43  Patient’s dying was preceded by period of unconsciousness 30/39 (77) 26/42 (62) 0.14 Physician discussed with patient medical decisions that could shorten life  Forgoing treatment 13/49 (27) 15/50 (30) 0.70  Intensified pain treatment 16/49 (33) 16/50 (32) 0.95  Sedation 15/49 (31) 8/50 (16) 0.09  Euthanasia 18/49 (37) 19/50 (38) 0.90 Life was possibly shortened due to  Forgoing treatment 15/47 (32) 14/52 (27) 0.59   With clear consent of the patient 11/12 12/13    Life was shortened by more than 1 week 4/11 0/9   Use of potentially life-shortening drugs 16/46 (35) 13/45 (29) 0.55   With clear consent of the patient 12/14 9/10    With the explicit goal of shortening life 1/16 4/13    Life was shortened by more than 1 week 1/13 2/10  n n a 3 Table 3 Preferred and actual place of death a Actual place of death N In institution At home N N N N Hospital 2    2 Hospice  3   3 At home 5  20  25 Other place 1 1   2 No (clear) preference 16 1 12 2 31 a 4 p Table 4 Dying in an institution or at home: perspective of bereaved relative   Place of death P t P χ 2 N N Number of days patient stayed at place of death [mean (SD)] 7 (6) 59 (35) 0.000  Number of transfers [mean (SD)] 1.9 (1.7) 1.2 (1.3) 0.047  Number of disciplines involved with patient [mean (SD)] 6.1 (2.3) 5.8 (1.9) 0.64  Number of clinical specialties involved with patient [mean (SD)] 2.2 (1.2) 1.8 (0.8) 0.011  n  Was fatigued 22 (79) 29 (88)  0.33  Had loss of appetite 22 (76) 30 (88)  0.20  Had pain 20 (69) 29 (85)  0.12  Had dyspnoea 18 (62) 17 (52)  0.40  Had mouth or mucous problems 18 (62) 16 (49)  0.28  Was incontinent 20 (69) 13 (38)  0.015  Had nausea 9 (32) 10 (30)  0.88  Had bedsores 5 (17) 13 (38)  0.07  Was confused 14 (48) 10 (29)  0.12  Suffered from anxiety 12 (41) 5 (15)  0.021  Was depressed 3 (10) 2 (6)  0.54 n  Assistance with personal care was sufficient 27 (93) 32 (94)  0.87 a 26 (90) 33 (97)  0.23  Relative was involved in decision-making 25 (89) 33 (97)  0.22  Relative was sufficiently involved in decision-making 24 (89) 33 (100)  0.049  Patient might have disagreed with medical decision(s) 4 (15) 1 (3)  0.10  Relative disagreed with medical decision(s) 7 (24) 7 (21)  0.78  It had been clear that patient was dying 18 (67) 26 (79)  0.29 a 5 Table 5 Dying in an institution or at home: experiences of bereaved relatives   Place of death P χ 2 N N n How often did you see patient in the last months of life?   0.78  Every day 24 (83) 29 (85)   Less than daily 5 (17) 5 (15)  Did caring for patient affect your own social life?   0.068  Yes 22 (76) 32 (94)   No 7 (24) 2 (6)  Did caring for patient result in financial problems?   0.17  Yes 4 (14) 1 (3)   No 25 (86) 33 (97)  Did you receive support from your family in caring for patient?   1.0  Much support 16 (55) 23 (68)   Some or no support 13 (45) 11 (32)  Did caring for patient affect your own health?   0.62  Yes 12 (41) 12 (35)   No 17 (59) 22 (65)  Did caring for patient cost you a lot of energy?   0.96  Often or all the time 15 (52) 15 (44)   Rarely or sometimes 14 (48) 19 (56)  How important was being involved with care for patient for you?   0.65  Very important 26 (90) 32 (94)   Important 3 (10) 2 (6)  Discussion 20 22 4 4 23 26 27 27 It is remarkable that a substantial number of patients in our study did not have a clear preference concerning their place of dying. Obviously, we only have information about the preferences that patients had discussed with their interviewed relative. Patients may also have had wishes that relatives were not aware of. Nevertheless, the data in our study suggest that the place of dying is not a great concern for a substantial number of terminally ill cancer patients in The Netherlands. 28 30 28 32 33 34 35 36 37 In summary, we did not find major differences in the process and quality of dying between institutional settings and the home setting. Most patients with clear preferences concerning their place of dying were able to die at their preferred place. In about half of all cases, relatives were not aware of any preference of the patient concerning the place of dying, which is apparently not a major concern for many people. We conclude that the current situation in The Netherlands, in which the place of dying is mainly determined by the availability of informal caregivers at home and the care needs of the patient, involves no major threats to the process and quality of dying.