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Short report

The place of death of patients with cancer in Kuwait Salem H Alshemmari,1,2 Amani A Elbasmi,3,4 Samy A Alsirafy5

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Department of Medicine, Faculty of Medicine, Kuwait University, Kuwait, Kuwait 2 Department of Medical Oncology, Kuwait Cancer Control Center, Kuwait, Kuwait 3 Cancer Epidemiology and Registration Unit, Kuwait Cancer Control Center, Kuwait, Kuwait 4 Department of Cancer Epidemiology and Biostatistics, National Cancer Institute, Cairo University, Cairo, Egypt 5 Palliative Medicine Unit, Kasr Al-Ainy Center of Clinical Oncology & Nuclear Medicine (NEMROCK), Kasr Al-Ainy School of Medicine, Cairo University, Cairo, Egypt Correspondence to Dr Samy A Alsirafy, Palliative Medicine Unit, Kasr AlAiny Center of Clinical Oncology & Nuclear Medicine (NEMROCK), Kasr Al-Ainy School of Medicine, Cairo University, PO Box 99, Manial El-Roda, Cairo 11553, Egypt; [email protected] Received 10 December 2012 Revised 26 April 2013 Accepted 1 June 2013

To cite: Alshemmari SH, Elbasmi AA, Alsirafy SA. BMJ Supportive & Palliative Care Published Online First: [ please include Day Month Year] doi:10.1136/bmjspcare-2012000433

ABSTRACT Background The place of death (PoD) has a significant effect on end-of-life care for patients dying of cancer. Little is known about the place of cancer deaths in our region. Methods To identify the PoD of patients with cancer in Kuwait, we reviewed the death certificates submitted to the Kuwait Cancer Registry in 2009. Results Of 611 cancer deaths, 603 (98.7%) died in hospitals and only 6 (1%) patients died at home. More than half (57.3%) of inhospital deaths were in the Kuwait Cancer Control Center. Among those for whom the exact PoD within the hospital was identified (484 patients), 116 (24%) patients died in intensive care units and 12 (2.5%) patients died in emergency rooms. Conclusions This almost exclusive inhospital death of patients with cancer in Kuwait is the highest ever reported. Research is needed to identify the reasons behind this pattern of PoD and to explore interventions promoting out-of-hospital death among terminally ill cancer patients in Kuwait.

INTRODUCTION Researching the place of death (PoD) of patients with cancer, its determinants and the preferences of patients and their caregivers is important to improve end-of-life care for patients dying of cancer. In studies from other countries, home was the preferred PoD for many patients with advanced cancer,1 as well as informal caregivers of terminally-ill patients.2 This is also true for the public when they were asked about their preferred PoD if they were dying of advanced cancer.3 Although home is the preferred PoD, this preference is not met in many dying patients.4 Data about PoD preferences from our region are lacking. Kuwait is one of the Gulf countries where the estimated population exceeded 3.4 million in 2009 with non-Kuwaitis representing more than two-thirds of the population.5

Alshemmari SH, et al. BMJ Supportive & Palliative Care 2013;0:1–3. doi:10.1136/bmjspcare-2012-000433

The aim of this study was to describe the PoD of patients with cancer in Kuwait and to identify possible predictors of PoD. This knowledge is needed to plan better quality end-of-life care for patients dying of cancer in Kuwait. METHODS The Kuwait Cancer Registry (KCR) which was established in 1971 is a full member of the International Association of Cancer Registries.6 To create a cancer mortality database, the KCR receives all death certificates with a cancer diagnosis from the ‘Health and Vital Statistics Division— Department of Health Information and Medical Records, Ministry of Health’. To confirm the cancer diagnosis, the KCR further reviews the medical records of these mortalities collected from all hospitals. The death certificates of cancer patients who died in 2009 were manually reviewed to collect data about age, sex, nationality, marital status, cancer diagnosis and the PoD. A supplementary review of the KCR data was done to complete missing demographic data. The PoD was determined according to the death notifying facility. Inhospital deaths are notified by the corresponding hospital, while home deaths are notified by the local primary healthcare centres. The Statistical Package for the Social Sciences (SPSS), V.14.0 (SPSS Inc., Chicago, Illinois, USA) was used to perform statistics. RESULTS During 2009, 611 patients with cancer died in Kuwait. The characteristics of patients are illustrated in table 1. The male to female ratio was 1:1, half of patients were >60 years of age and the majority (84%) were married. Non-Kuwaitis represented 44.7% (273 patients) of all deaths and the most common represented nationality was Egyptian (22.3% of nonKuwaitis).

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Short report Table 1

Patients’ characteristics

Sex Male Female Age group 0–15 16–30 31–45 46–60 >60 Nationality Kuwaiti Non-Kuwaiti Egyptian Jordanian Saudi Indian Syrian Others Marital status Married Single Widowed Divorced Unknown Primary cancer Gastrointestinal Genito-urinary Breast Haematological Respiratory Head and neck Metastases of unknown primary Central nervous system Others

N

%

313 298

51.2 48.8

23 21 89 170 308

3.8 3.4 14.6 27.8 50.4

338

55.3

61 27 21 19 19 126

10 4.4 3.4 3.1 3.1 20.6

514 54 28 6 9

84.1 8.8 4.6 1 1.5

178 106 80 79 50 33 33 30 22

29.1 17.3 13.1 12.9 8.2 5.4 5.4 4.9 3.6

Among the 611 deaths, 603 (98.7%) died in hospitals: 350 (57.3%) in the Kuwait Cancer Control Center (KCCC), 238 (39%) in other governmental hospitals and 15 (2.5%) in private hospitals. Only 6 (1%) patients died at home and the death of 2 (0.3%) patients was reported by the department of forensic medicine without specifying the PoD. Among the 603 patients who died in hospitals, the exact PoD within the hospital was specified in the death notification forms for 484 (80.3%) patients. Among those patients, 356 (73.6%) patients died in regular wards, 116 (24%) died in intensive care units (ICU) and 12 (2.5%) died in the emergency rooms. DISCUSSION To the best of our knowledge, this is the first report from our region to describe the PoD of patients with cancer at a national level.

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The number of cancer deaths in this report (611) may be viewed as less than expected for a population of 3.4 million in 1 year. However, it should be noted that the incidence rate of cancer in Kuwait is relatively low.6 The total number of new cancer cases among Kuwaitis was only 889 cases in 2009.6 The low cancer rate in Kuwait may be attributed to many factors including the fact that the population in Kuwait is relatively young. In 2009, 83% of the population in Kuwait was below the age of 45 years.5 In addition, non-Kuwaitis who represented 68% of the population in 20095 are largely expatriates who are relatively young and healthy. It is unlikely that cancer diagnosis is under-reported in Kuwait. Healthcare in Kuwait is delivered at a primary level through 89 primary health centres, at a secondary level through six major hospitals and at a tertiary level through specialised centres including the KCCC. The KCCC is the only facility allowed to deliver anticancer therapy in Kuwait; hence, it is compulsory to refer all cancer cases to the KCCC where the KCR is located. The death of some patients outside Kuwait may further explain the less than expected number of cancer deaths. A significant proportion of Kuwaiti patients receive treatment outside Kuwait and some of them may have died abroad. Furthermore, some non-Kuwaiti patients, who represent half of the cancer population in Kuwait,7 may have returned to their home countries to die there. The death reporting system in Kuwait is a competent system and the low rate of home cancer deaths cannot be attributed to under-reporting of home deaths. It is obligatory by law in Kuwait that all home deaths, of natural causes, to be confirmed by a physician from the community health centre who completes the death announcement form; otherwise, the family of the deceased cannot have a burial permit.8 The reported very high rate of inhospital death among patients with cancer is not surprising in a country where only 5% of all deaths occur at home.5 The percentage (99%) of patients with cancer dying inhospital in Kuwait is the highest ever reported. For example, in European countries, this percentage ranged from 31% in the Netherlands to 87% in Norway.9 However, the reported high prevalence in Norway may be due to the inclusion of ‘hospitals’ and ‘care home’ under the category ‘institution’ without a distinction.9 There is evidence that some factors related to the patient, the disease, social status and healthcare input are strongly associated with the PoD.10 The cancer population in Kuwait is quite heterogeneous where non-Kuwaitis with different social backgrounds represent 51% of patients with cancer.7 With this heterogeneity, it is unlikely that individual factors related to the patient, cancer or social status have resulted, alone, in the almost exclusively inhospital death. What is common for all patients with cancer in Kuwait is the exposure to the same healthcare system.

Alshemmari SH, et al. BMJ Supportive & Palliative Care 2013;0:1–3. doi:10.1136/bmjspcare-2012-000433

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Short report The most important factors determining the PoD are those related to the ‘environment’ including the ‘healthcare input’ like the availability and intensity of home care.10 It is likely that factors related to the healthcare input have contributed significantly to the very high rate of inhospital mortality in Kuwait. Until 2009, there was no specialised palliative care or home care services for patients with terminal cancer in Kuwait. To receive medical care at the end-of-life, the available options for patients with terminal cancer are the KCCC and secondary care hospitals with pain services where opioids are available. This may explain, at least in part, the very high proportion inhospital deaths. In addition, the medical practice itself may have contributed to the high inhospital mortality. For example, 79% of physicians practicing in Kuwait would not tell patients their cancer diagnosis in response to the family request.11 With such an attitude, healthcare professionals may be reluctant to initiate discussions about end-of-life care with patients and their families and plan for it. The high rate of cancer deaths in acute settings and admission to ICU near the end-of-life are suggested indicators of poor quality end-of-life care.12 The quality of life of patients dying of cancer and their caregivers is adversely affected when death occurs in acute care settings. In a study that included 342 patients dying of advanced cancer and their caregivers, patients who died in an ICU or hospital had significantly worse quality of life at the end-of-life when compared with those who died at home.13 Furthermore, when compared with home deaths, hospital deaths were associated with a significantly higher risk for psychological morbidity among caregivers.13 In all, 99% of cancer deaths in Kuwait occurred in an acute setting and 24% were in ICU. In addition to the negative impact on dying patients and their families, this pattern is likely to exhaust resources of acute care settings. In one report, >50% of KCCC inpatients were in a late stage and receiving best supportive care only.14 These highlight the need to implement interventions to decrease the rate of inhospital deaths in Kuwait. Palliative care interventions help more patients die at home as well as the use of home care and its intensity.10 15 In a study from Belgium, patients who received a multidisciplinary palliative home care were significantly less likely to die inhospital.15 Recently, a stand-alone 92-bed palliative care centre was inaugurated in Kuwait. The availability of such specialised service may help patients die at home; however, this change may take considerable time before being noticeable. In conclusion, almost all cancer deaths in Kuwait occur in acute care settings. The PoD in Kuwait is an area that should be explored in future research. Effective interventions should be sought to promote death at home for terminally-ill patients with cancer in Kuwait.

Contributors Planning: SAA, SHA and AAE; Conduct: SAA and AAE; Reporting: SAA, AAE and SHA; Guarantors: SHA and SAA. Competing interests None. Ethics approval The study was approved by the Kuwait Cancer Control Center (KCCC) Ethics Committee. Provenance and peer review Not commissioned; externally peer reviewed.

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The place of death of patients with cancer in Kuwait Salem H Alshemmari, Amani A Elbasmi and Samy A Alsirafy BMJ Support Palliat Care published online June 27, 2013

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The place of death of patients with cancer in Kuwait.

The place of death (PoD) has a significant effect on end-of-life care for patients dying of cancer. Little is known about the place of cancer deaths i...
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