European Journal of Cancer (2015) xxx, xxx– xxx
Available at www.sciencedirect.com
ScienceDirect journal homepage: www.ejcancer.com
Old age as risk indicator for poor end-of-life care quality – A population-based study of cancer deaths from the Swedish Register of Palliative Care Magnus Lindskog a,b,⇑, Bjo¨rn Tavelin c, Staffan Lundstro¨m b a
Department of Immunology, Genetics and Pathology, Uppsala University, Uppsala, Sweden Stockholms Sjukhem Foundation and Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden c Department of Radiation Sciences, Umea˚ University, Umea˚, Sweden b
Received 5 February 2015; received in revised form 31 March 2015; accepted 2 April 2015
KEYWORDS Palliative care End-of-life Quality Cancer Age Old age
Abstract Background: If patient age affects the quality of end-of-life care in cancer is unknown. Using data from a population-based register of palliative care in Sweden, we addressed this question. Methods: This nation-wide study focused on the last week of life of adults dying from cancer in 2011–2012, based on data reported to a national quality register for end-of-life care (N = 26,976). We specifically investigated if age-dependent differences were present with respect to thirteen indicators of palliative care quality. Patients were categorised in one out of five pre-defined age groups. Odds ratios (OR) with 95% confidence intervals (CIs), adjusted for type of end-of-life care unit, were calculated using logistic regression, with the oldest group as reference. Findings: Age-dependent differences in implementation rate were detected for ten out of thirteen end-of-life care quality indicators, most of which were progressively less well met with each increment in age group. Compared to elderly cancer patients, young patients were more often informed about imminent death, (OR, 3.9; 95% CI 2.5–5.9, p < 0.001), were more often systematically assessed for the presence and severity of pain (OR, 1.6; 95% CI 1.2–2.1, p < 0.001) or other symptoms (OR, 1.4; 95% CI 1.0–1.9, p = 0.044), were more likely to be assessed by palliative care consultation services (OR, 4.3; 95% CI 3.3–5.7, p < 0.001) and to have injections prescribed as needed against pain (OR, 3.4; 95% CI 1.3–9.4, p = 0.016), anxiety (OR, 3.8; 95% CI 2.0–7.1, p < 0.001) or nausea (OR, 3.6; 95% CI 2.3–5.7, p < 0.001). The
⇑ Corresponding author at: Department of Immunology, Genetics and Pathology, Uppsala University, 751 85 Uppsala, Sweden. Tel.: +46 73 349 00 69. E-mail address: [email protected] (M. Lindskog).
http://dx.doi.org/10.1016/j.ejca.2015.04.001 0959-8049/Ó 2015 Elsevier Ltd. All rights reserved.
Please cite this article in press as: Lindskog M. et al., Old age as risk indicator for poor end-of-life care quality – A population-based study of cancer deaths from the Swedish Register of Palliative Care, Eur J Cancer (2015), http://dx.doi.org/10.1016/j.ejca.2015.04.001
2
M. Lindskog et al. / European Journal of Cancer xxx (2015) xxx–xxx
families of young patients were more likely to be informed about imminent death (OR, 2.6; 95% CI 1.5–4.3, p = 0.001) and to be offered bereavement support (OR, 4.6; 95% CI 2.7– 7.8, p < 0.001). Interpretation: Old age is a risk indicator for poor end-of-life care quality among cancer patients in Sweden. Funding: The executive committee of the National Quality Registries in Sweden. Ó 2015 Elsevier Ltd. All rights reserved.
1. Introduction
2. Methods
Fatal cancers affect all age groups, in contrast to many other common causes of non-accidental death. Among disease-related causes of premature death in young adults in Europe, cancer is the most important, contributing to one third of all standard expected years of life lost among both women and men [1]. Analysing age groups among younger individuals, cancer holds a dominating position as a leading cause of non-accidental death among individuals in their 20s, 30s, 40s and 50s [2]. Palliative care of young patients with advanced cancer is more aggressive than that of elderly patients, typically involving the continuation of antineoplastic treatments and hospital care in the last months or weeks of life, which may have a substantial impact on endof-life (EOL) care [3–6]. Meanwhile, the majority of citizens live increasingly longer, leading to larger proportions of elderly patients with cancer in need of palliative care [7]. Several studies show elderly cancer patients to be less likely enrolled in palliative care programs or referred later, to more seldom die at home or in hospice, and to receive fewer nursing visits or physician house calls in the end of their lives compared to younger patients [8–12]. Nation-wide or crossnational data are scarce and previous studies found complex associations of age and palliative care enrolment [13–15]. The Swedish health care system and its organisation of palliative care have been described previously [16]. Since its introduction in 2005 the Swedish Register of Palliative Care (SRPC), a nation-wide quality register of end-of-life care, has continued to expand and now gathers data from two thirds of all deaths, covering all counties and municipalities in Sweden. It thus enables health care providers, authorities and clinical researchers to retrospectively assess important aspects of EOL care in a standardised way and in different care settings, with the data available online [16]. The SRPC registered 90% of all cancer deaths during 2014 and registration in SRPC has become one of the national quality indicators for cancer care in Sweden. In this study, we took advantage of the SRPC to investigate if age-related differences exist in the quality of end-of-life care of dying cancer patients in Sweden.
2.1. Study population We extracted registry data for all reported adult cancer deaths from 1st January 2011, until 31st December 2012, with exclusion criteria being unexpected death, other competing causes of death, or age below 18 at the time of death. The study population (N = 26,976) was then categorised in five pre-defined age-categories: 18–39 years (group 1, n = 341), 40–59 years (group 2, n = 3017), 60–74 years (group 3, n = 10,126), 75– 84 years (group 4, n = 8393) and P85 years (group 5, n = 5099). 2.2. End-of-life questionnaire The questionnaire focuses on the quality of care in the last week of life and is answered retrospectively online as soon as possible after the patient’s death by the nurse and/or the physician responsible for the EOL care. If the patient has moved between different caring units during the last week of life, the staff on the unit where the death occurred completes the questionnaire. Median time from patient death to data entry online is 7 days. Only data documented in the patient records are considered. Based on a validation study comparing patient data reported to the quality register with the information documented in actual patient records, the questionnaire was revised and the current version has been in use since January 2011 encompassing deaths from the entire year of 2011 and onwards [17]. The questionnaire consists of 27 questions about e.g. information to patient and family, bereavement support, systematic symptom assessment and symptom severity, prescriptions of essential drugs as needed (PRN), parenteral fluid therapy (FT) and the use of palliative consultation services (Supplementary Table S1). The registration is partly self instructive and, when considered needed, explanations are available on the registration web page. All reporting care units provide the SRPC with an annual update on basic facts about the care unit, availability of staff, existing documented routines around end-of-life care and accessibility to injectable drugs for PRN use to control symptoms. The discipline answering the questionnaire is registered for every single questionnaire with 91% of
Please cite this article in press as: Lindskog M. et al., Old age as risk indicator for poor end-of-life care quality – A population-based study of cancer deaths from the Swedish Register of Palliative Care, Eur J Cancer (2015), http://dx.doi.org/10.1016/j.ejca.2015.04.001
M. Lindskog et al. / European Journal of Cancer xxx (2015) xxx–xxx
the registrants being nurses. In specialised palliative care the proportion of registrations made by physicians is higher (26%) compared to hospitals (7%) and nursing homes (1%). From the questionnaire, we identified 13 questions associated with different aspects of care quality, listed in Supplementary Table S2 [16]. Items addressed included decision-making, patient participation, information, bereavement support, general quality of care, symptom screening and symptom control. Only patients who had remained conscious until hours or days before their death were included in the analyses of answers related to information about imminent death. All included patients were reported to have died an expected death. For each of the 13 quality indicators, the data analysis was based on those patients for whom the implementation of that specific indicator in the EOL care was known, i.e. answered by ‘yes’ or ‘no’. For most quality indicators, a distinctive answer was registered for more than 90% of patients in all age groups, corresponding to
Available at www.sciencedirect.com
ScienceDirect journal homepage: www.ejcancer.com
Old age as risk indicator for poor end-of-life care quality – A population-based study of cancer deaths from the Swedish Register of Palliative Care Magnus Lindskog a,b,⇑, Bjo¨rn Tavelin c, Staffan Lundstro¨m b a
Department of Immunology, Genetics and Pathology, Uppsala University, Uppsala, Sweden Stockholms Sjukhem Foundation and Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden c Department of Radiation Sciences, Umea˚ University, Umea˚, Sweden b
Received 5 February 2015; received in revised form 31 March 2015; accepted 2 April 2015
KEYWORDS Palliative care End-of-life Quality Cancer Age Old age
Abstract Background: If patient age affects the quality of end-of-life care in cancer is unknown. Using data from a population-based register of palliative care in Sweden, we addressed this question. Methods: This nation-wide study focused on the last week of life of adults dying from cancer in 2011–2012, based on data reported to a national quality register for end-of-life care (N = 26,976). We specifically investigated if age-dependent differences were present with respect to thirteen indicators of palliative care quality. Patients were categorised in one out of five pre-defined age groups. Odds ratios (OR) with 95% confidence intervals (CIs), adjusted for type of end-of-life care unit, were calculated using logistic regression, with the oldest group as reference. Findings: Age-dependent differences in implementation rate were detected for ten out of thirteen end-of-life care quality indicators, most of which were progressively less well met with each increment in age group. Compared to elderly cancer patients, young patients were more often informed about imminent death, (OR, 3.9; 95% CI 2.5–5.9, p < 0.001), were more often systematically assessed for the presence and severity of pain (OR, 1.6; 95% CI 1.2–2.1, p < 0.001) or other symptoms (OR, 1.4; 95% CI 1.0–1.9, p = 0.044), were more likely to be assessed by palliative care consultation services (OR, 4.3; 95% CI 3.3–5.7, p < 0.001) and to have injections prescribed as needed against pain (OR, 3.4; 95% CI 1.3–9.4, p = 0.016), anxiety (OR, 3.8; 95% CI 2.0–7.1, p < 0.001) or nausea (OR, 3.6; 95% CI 2.3–5.7, p < 0.001). The
⇑ Corresponding author at: Department of Immunology, Genetics and Pathology, Uppsala University, 751 85 Uppsala, Sweden. Tel.: +46 73 349 00 69. E-mail address: [email protected] (M. Lindskog).
http://dx.doi.org/10.1016/j.ejca.2015.04.001 0959-8049/Ó 2015 Elsevier Ltd. All rights reserved.
Please cite this article in press as: Lindskog M. et al., Old age as risk indicator for poor end-of-life care quality – A population-based study of cancer deaths from the Swedish Register of Palliative Care, Eur J Cancer (2015), http://dx.doi.org/10.1016/j.ejca.2015.04.001
2
M. Lindskog et al. / European Journal of Cancer xxx (2015) xxx–xxx
families of young patients were more likely to be informed about imminent death (OR, 2.6; 95% CI 1.5–4.3, p = 0.001) and to be offered bereavement support (OR, 4.6; 95% CI 2.7– 7.8, p < 0.001). Interpretation: Old age is a risk indicator for poor end-of-life care quality among cancer patients in Sweden. Funding: The executive committee of the National Quality Registries in Sweden. Ó 2015 Elsevier Ltd. All rights reserved.
1. Introduction
2. Methods
Fatal cancers affect all age groups, in contrast to many other common causes of non-accidental death. Among disease-related causes of premature death in young adults in Europe, cancer is the most important, contributing to one third of all standard expected years of life lost among both women and men [1]. Analysing age groups among younger individuals, cancer holds a dominating position as a leading cause of non-accidental death among individuals in their 20s, 30s, 40s and 50s [2]. Palliative care of young patients with advanced cancer is more aggressive than that of elderly patients, typically involving the continuation of antineoplastic treatments and hospital care in the last months or weeks of life, which may have a substantial impact on endof-life (EOL) care [3–6]. Meanwhile, the majority of citizens live increasingly longer, leading to larger proportions of elderly patients with cancer in need of palliative care [7]. Several studies show elderly cancer patients to be less likely enrolled in palliative care programs or referred later, to more seldom die at home or in hospice, and to receive fewer nursing visits or physician house calls in the end of their lives compared to younger patients [8–12]. Nation-wide or crossnational data are scarce and previous studies found complex associations of age and palliative care enrolment [13–15]. The Swedish health care system and its organisation of palliative care have been described previously [16]. Since its introduction in 2005 the Swedish Register of Palliative Care (SRPC), a nation-wide quality register of end-of-life care, has continued to expand and now gathers data from two thirds of all deaths, covering all counties and municipalities in Sweden. It thus enables health care providers, authorities and clinical researchers to retrospectively assess important aspects of EOL care in a standardised way and in different care settings, with the data available online [16]. The SRPC registered 90% of all cancer deaths during 2014 and registration in SRPC has become one of the national quality indicators for cancer care in Sweden. In this study, we took advantage of the SRPC to investigate if age-related differences exist in the quality of end-of-life care of dying cancer patients in Sweden.
2.1. Study population We extracted registry data for all reported adult cancer deaths from 1st January 2011, until 31st December 2012, with exclusion criteria being unexpected death, other competing causes of death, or age below 18 at the time of death. The study population (N = 26,976) was then categorised in five pre-defined age-categories: 18–39 years (group 1, n = 341), 40–59 years (group 2, n = 3017), 60–74 years (group 3, n = 10,126), 75– 84 years (group 4, n = 8393) and P85 years (group 5, n = 5099). 2.2. End-of-life questionnaire The questionnaire focuses on the quality of care in the last week of life and is answered retrospectively online as soon as possible after the patient’s death by the nurse and/or the physician responsible for the EOL care. If the patient has moved between different caring units during the last week of life, the staff on the unit where the death occurred completes the questionnaire. Median time from patient death to data entry online is 7 days. Only data documented in the patient records are considered. Based on a validation study comparing patient data reported to the quality register with the information documented in actual patient records, the questionnaire was revised and the current version has been in use since January 2011 encompassing deaths from the entire year of 2011 and onwards [17]. The questionnaire consists of 27 questions about e.g. information to patient and family, bereavement support, systematic symptom assessment and symptom severity, prescriptions of essential drugs as needed (PRN), parenteral fluid therapy (FT) and the use of palliative consultation services (Supplementary Table S1). The registration is partly self instructive and, when considered needed, explanations are available on the registration web page. All reporting care units provide the SRPC with an annual update on basic facts about the care unit, availability of staff, existing documented routines around end-of-life care and accessibility to injectable drugs for PRN use to control symptoms. The discipline answering the questionnaire is registered for every single questionnaire with 91% of
Please cite this article in press as: Lindskog M. et al., Old age as risk indicator for poor end-of-life care quality – A population-based study of cancer deaths from the Swedish Register of Palliative Care, Eur J Cancer (2015), http://dx.doi.org/10.1016/j.ejca.2015.04.001
M. Lindskog et al. / European Journal of Cancer xxx (2015) xxx–xxx
the registrants being nurses. In specialised palliative care the proportion of registrations made by physicians is higher (26%) compared to hospitals (7%) and nursing homes (1%). From the questionnaire, we identified 13 questions associated with different aspects of care quality, listed in Supplementary Table S2 [16]. Items addressed included decision-making, patient participation, information, bereavement support, general quality of care, symptom screening and symptom control. Only patients who had remained conscious until hours or days before their death were included in the analyses of answers related to information about imminent death. All included patients were reported to have died an expected death. For each of the 13 quality indicators, the data analysis was based on those patients for whom the implementation of that specific indicator in the EOL care was known, i.e. answered by ‘yes’ or ‘no’. For most quality indicators, a distinctive answer was registered for more than 90% of patients in all age groups, corresponding to
